Question:
Sounds hormonal. But, since you do not mention a regimin of androgen deprivation therapy (ADT), I’m guessing that it is unrelated. Just for the guest book…. You had RP and undetectable PSAs ever since? — Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05 PSA .07 .05 .06 .05 non Illegitimi carborundum
– Hide quoted text — Show quoted text – Hi All, I had an RP and radiation about 4 years ago. I am 58 years old. Everything went well. Lately I have been hot all the time. Any comments? By the way, all of you who just found out or have not been treated yet. The anxiety was the worst part for me. Thanks, Ross Taylor New Castle, PA
Response:
"Ross" asked Lately I have been hot all the time. Any comments?
I began having hot FLASHES (distinct, brief, widely separated incidences) a couple of years ago, before I even knew I had PC. One cause of those is the very rare carcinoid syndrome, which sometimes results when the liver is damaged by a rare carcinoid tumor in the intestines. Why consider such a rare problem? Because it’s far more life-threatening than PC, detection is fairly straightforward, I had it, and even though I had it cut out it’s STILL more life-threatening than my PC. I haven’t heard of a carcinoid tumor or syndrome producing a CHRONIC hot sensation, but it’s conceivable, I suppose. I’m sure there are several more likely causes, from a thyroid problem to a malfunctioning thermostat in your home. (Is your wife clever enough to alter your thermostat internally to read falsely, as I did in Basic Training when we were required to keep our rooms at a sweltering 80 degrees?) I.P.
Response:
On October 11, Ross wrote, in pertinent part: I had an RP and radiation about 4 years ago. I am 58 years old. Everything went well. Lately I have been hot all the time. Any comments?
The basic question to be answered is: Is Ross on ADT or not? One of the possible SEs of ADT is hot flashes. But if Ross is not on ADT, I suggest that his inquiry would best be answered by his medic. If Ross is experiencing hot flashes from ADT, the issue is treatable via Megestrol acetate (Megace) Paxil (an anti-depressant) Effexor (another anti-depressant) Depo Provera (medroxyprogesterone, a female hormone), a tx for endometriosis or, in high doses, a long-term female contraceptive. The anti-hot flash properties of these medications are SEs. Use for control of hot flashes is "off-label" and not covered by Medicare or, AIUI, other insurance. FWIW, I chose "Depo Sub-Q Provera" which is the endometriosis tx. One 104 mg injection into each thigh two months ago has provided me with 100% relief. How long it will last before it must be redone is anyone’s guess. Cost was just over $200 for the pre-loaded syringes + about $25 to have them injected at my medic’s office after I bought them from a pharmacy per his rx. IMO, well worth it. Bit of fun at the medic’s office as the medic and his nursing staff agreed that I will no longer be able to ovulate 
Regards, Steve J PS: The reason that I did not have this done via my med onc is that she (through her PA) wanted me to take a medication that contains belladonna and a narcotic, and is only about 50% effective. I refused because I knew my situation. One mo’ time, kids: Study, Learn, Take Charge! You just might avoid severe problems, even save your life. I know; I’ve done it.
Response:
Hi All, I had an RP and radiation about 4 years ago. I am 58 years old. Everything went well. Lately I have been hot all the time. Any comments? By the way, all of you who just found out or have not been treated yet. The anxiety was the worst part for me. Thanks, Ross Taylor New Castle, PA
Response:
Question:
I recently posted on the above subject, and had about made up my mind to proceed with a 400 mg injection for relief of hot flashes that were awakening me 6+ times a night. The "label" use is as a female contraceptive. A fellow Us Too! member told me that some men in his support group had had success with a dosage of 200 mg. As Medicare will not cover it, I elected to go the more economical route. Heck, if it didn’t work I could have further injections. I bought two preloaded syringes of Depo Sub-Q Provera in dosages of 104 mg each. The "label" use of this formulation is relief of some symptoms of endometriosis. One each was injected into the anterior thighs. According to the package insert, it begins to take effect in, on average, eight days. I am delighted to report that by the ninth day, all signs of hot flashes had disappeared. It now remains to be seen how long this will continue. I’m hoping for four to six months. Cost of the two syringes was just under $200. I could have bought a 400 mg ampule, but 200 of it would probably have been wasted. I cannot help but to observe that one of us often dwells at great length upon his view of the horrors of ADT SE’s, and never, insofar as I recall, ever mentions what is done to relieve them — if they are experienced at all. Steve J "Do not go where the path may lead, go instead where there is no path and leave a trail." —Ralph Waldo Emerson
Response:
Steve Jordan, Happy to hear about your good results. I think one of the best things we can do for each other in this group is to report on things that have worked for us. Too many guys suffer horrible things when relief may be within reach. Experience is the truest form of knowledge. Steve U
Response:
Question:
Nick, you might have your wife get an antinausea medication she can use prior to taking the meds…a lot of people take Compazine or Phenergen. They even come in suppositories for those people who are so sensitive they couldn’t keep even that kind of medication down. I have a pill, but I can tell you there were times I wish I had gotten a suppository…as awful as that sounds, puking is worse anyway.
I have a stash of the suppositories (I keep them in the frig and they supposedly will keep almost forever that way) because when I had really bad headaches from Lyme Disease, the emergerency doctor just decided not to even bother giving me a pill. They are *very* easy to take and work very quickly — at this point, I could get pills, but the suppositories are so easy (just wash your hands afterwards!) that I just renewed the prescription. The only downside is that this stuff does work fast and tend to put me to sleep for 36 hours. There are times when you just need to get away from the pain no matter what, but if you’re trying to get through something else and don’t have the time clear, it does put an end to your day. Of course, some folks don’t sleep that much, but it’s worth clearing your schedule and seeing how your body reacts. Dinara, the garlic grower Agriculture — it’s an addiction! Dinara, the Garlic QUEEN* Sustainable agriculture takes root with your support! <* *Philadelphia Harvest Show 2001 results: Blue Ribbons: Garlic, Single Variety & Garlic Basket, 16 Varieties Community Garden Sweepstakes Award: Most Blue Ribbons Won by a Community Garden
Response:
Nick, you might have your wife get an antinausea medication she can use prior to taking the meds…a lot of people take Compazine or Phenergen. They even come in suppositories for those people who are so sensitive they couldn’t keep even that kind of medication down. I have a pill, but I can tell you there were times I wish I had gotten a suppository…as awful as that sounds, puking is worse anyway. You might have your wife ask her doctor for a prescription for both forms and give it a try. Some people have even gotten some migraine relief from that medication. Michelle
– Hide quoted text — Show quoted text – Hi Jack, thanks for clearing this up. Our GP told me on the phone that it was absorbed into the bloodstream directly – but I guess he got it wrong. He had realised by the time he saw my wife, and she got the correct explanation. In that case it is very unlikely to work – her system doesn’t see to accept anything via her stomach once a migraine has started 
But she’ll try it anyway…. Thanks Nick
Response:
Hi Jack, thanks for clearing this up. Our GP told me on the phone that it was absorbed into the bloodstream directly – but I guess he got it wrong. He had realised by the time he saw my wife, and she got the correct explanation. In that case it is very unlikely to work – her system doesn’t see to accept anything via her stomach once a migraine has started But she’ll try it anyway…. Thanks Nick
You’re welcome. Jack
Response:
Hi Jack, thanks for clearing this up. Our GP told me on the phone that it was absorbed into the bloodstream directly – but I guess he got it wrong. He had realised by the time he saw my wife, and she got the correct explanation. In that case it is very unlikely to work – her system doesn’t see to accept anything via her stomach once a migraine has started But she’ll try it anyway…. Thanks Nick
Response:
Guys, thanks for the replies, it’s nice to feel there’s people out there who understand. Jan (my wife) managed to keep her appointment on Friday, and got a result!. She now has a prescription for 6 Imigran injections, and also has Rizatriptan (Maxalt) ‘melts’ to try. She’s not had any success with oral medicine in the past, but these are supposed to get straight into the blood stream. Anyone had experience of these?
They are not sublingual, but melt in your mouth, go down your throat, and are digested like any other oral medication. They do not go directly into the blood stream. The only advantage to this delivery method is that no water is needed. Jack
Response:
Guys, thanks for the replies, it’s nice to feel there’s people out there who understand. Jan (my wife) managed to keep her appointment on Friday, and got a result!. She now has a prescription for 6 Imigran injections, and also has Rizatriptan (Maxalt) ‘melts’ to try. She’s not had any success with oral medicine in the past, but these are supposed to get straight into the blood stream. Anyone had experience of these? There seemed to be no issue about taking several doses sequentially (as long as the 24 hour rule is applied). So it is all down to cost – and making enough of a fuss to get the dose you need!! Jan will reply in person once she gets time (and find out how to use these groups!). Thanks again, Nick
Response:
I used to have the three day migraines and Imitrex injections never lasted long enough for them. The issue is that if the migraine is that strong, it may only be aborted for awhile and then come back for the duration. My three-day migraines were hormonally triggered. I would get them when I ovulated, when I got my period, and then one week after my period ended. Every estrogen change triggered a three day migraine. Is your wife in that age category that she still has her periods? If so, have you had her keep a diary of them and see how that lines up with the ovulation (two weeks prior to the period) and the start and stop? Whenever I hear women mention these three day migraines, I tend to also hear them mention the correlation to their cycles. Also women with issues such as polycistic ovarian disease or Endometriosis tend to have fluctuating hormones that are all over the place…all the time. That was my situation. If that were the case, hormonal management is a good option. I won’t go into all that just in case that’s not her issue. If it is, you can just mention that and I’ll offer some ideas. Back to your questions, I always had more on hand, but Imitrex (not sure if that is your Imigran) was never enough to get me through. I used a drug that is called DHE 45 and that would often work longer. It’s an ergotamine and I injected it. It became my lifesaver back in 1995. She needs better management, however, and I echo Dana’s comment that she needs a neurologist. My heart goes out to both of you…my husband watches me go through this as well. He tells me all the time how hard it is to watch and his heart breaks for me. Blessings, Michelle
– Hide quoted text — Show quoted text – Hi, I’m looking for some advice on behalf of my wife – who is currently in bed with a migraine. She has suffered from migraine as long as I have know here (~18 years) and the attacks can last 3 or 4 days with severe headache and vomiting. We tried many different treatments, diets etc. recently she discovered that injecting Imigran (Zomig?) can abort an attack. After years of failed treatments, it is quite miraculous to see her actually walk away from a migraine attack within two hours of injecting the stuff! But there is a downside – sometimes they come back. We just had a really bad week where she injected seven times (2 or less in any 24 hours) before finally shaking it off. We went through hell trying to get the drugs, as our local GPs would only prescribe two doses at a time. I was told we could not have any more after persuading them to let us have the last two. So my wife now has an appointment to discuss the way forward with her GP. I feel she should have a large supply in case of prolonged attacks, but I don’t know anything about this drug and it’s long-term effects. I’m concerned that the doctors will insist on prescribing only two doses for COST reasons and not for sound medical reasons. I’d like to understand a bit more so we can have an informed discussion with them! We live in Edinburgh, Scotland, so things may be a little different from the US over here, but any advice would be really helpful – thanks. Nick
Response:
We live in Edinburgh, Scotland, so things may be a little different from the US over here, but any advice would be really helpful – thanks.
I’d say that at any one time I probably have about 30 doses of Imitrex, Zomig and Relpax at home. Now, I’m very careful about the 24 hour rule, never mix any of the triptans within 24 hours of each other, and I’m careful about the doses and the instructions of the individual triptans. But if they only allowed me to have 2 doses at a time I’d pretty much be living in my doctor’s office. I’ve been going to my same family doctor for 10 years and he does trust me with my meds. Maybe your wife should see a neurologist who understands migraine better than her GP? I’m in Canada, with a medical system more like yours in the UK than the system in the US. I’ve seen a couple of neurologists, and had to be referred by my family doctor. Hope this helps, good luck to you and please give your wife a very gentle hug from me… Dana
Response:
Hi, I’m looking for some advice on behalf of my wife – who is currently in bed with a migraine. She has suffered from migraine as long as I have know here (~18 years) and the attacks can last 3 or 4 days with severe headache and vomiting. We tried many different treatments, diets etc. recently she discovered that injecting Imigran (Zomig?) can abort an attack. After years of failed treatments, it is quite miraculous to see her actually walk away from a migraine attack within two hours of injecting the stuff! But there is a downside – sometimes they come back. We just had a really bad week where she injected seven times (2 or less in any 24 hours) before finally shaking it off. We went through hell trying to get the drugs, as our local GPs would only prescribe two doses at a time. I was told we could not have any more after persuading them to let us have the last two. So my wife now has an appointment to discuss the way forward with her GP. I feel she should have a large supply in case of prolonged attacks, but I don’t know anything about this drug and it’s long-term effects. I’m concerned that the doctors will insist on prescribing only two doses for COST reasons and not for sound medical reasons. I’d like to understand a bit more so we can have an informed discussion with them! We live in Edinburgh, Scotland, so things may be a little different from the US over here, but any advice would be really helpful – thanks. Nick
Response:
Question:
I am new to the group and have been watching it for a while and since there has been no activity in it I thought it was no longer used. I have Endo I was diagnosed in 1996 and was told then to either have a hysterectomy or to try for children. At the time I was not ovulating and after jumping at the chance to try for children went on different courses of treatment and in 1999 had my first son. The endo pain came back a bit after I stopped breastfeeding but nothing major. Then in 2002 my second son was born. This time with no medical help. He is going to be 3 tomorrow and on the 24th May I am finally going to see my Gynae as my endo is back with vengeance. I have been into Forth Park (my local hospital) twice in two weeks being unable to stand or walk due to the pain. After my first visit they said that they would push through my referral to see my Gynae. Made by my GP in March. The appointment that came through was for August. After my second stay in Forth Park they said that August was unacceptable and that they would put me down as an emergency. I had to call my Gynae secretary a week after being into Forth Park to see what was happening as I had not heard anything. Only to find out that my emergency note was on her shelf unopened. So I now have an appointment on the 24th. Until then I have to continue on my Mefenamic Acid, Solpodol and Tramadol (all pain killers) so that I can function. Looking after two active boys with severe endo pain is no fun. Please try and get this newsgroup going again as sometimes I feel as though I am on my own, in pain. Susan
– Hide quoted text — Show quoted text -I thought this newsgroup would always survive with the crap it’s gone through over the years, but it seems like it’s falling to the wayside. That is a big shame because I know how helpful it was to me over the years, but I also know how stressful it could get with all of the flaming (and yes I participated) that has occurred here. I just hope that those looking for support and not finding it here are able to find it in other groups. I have been guilty of ignoring it when life gets in the way, which is most of the time. I’ve been doing so well since my surgery with Dr. Cook in 1999 that after we moved to NC, I started a job that I am still with and am training for the Chief Financial Officer position as we speak. Life has been treating me very well physically. If only they could figure out how to fix the back problems, I’d be great. My life is truly a testimont to Dr. Cook and his fantastic surgical skills and endo knowledge. I was very blessed to have been able to have surgery with him. I never was able to have children unfortunately, but I’m ok with that now, though it took many painful years, physically and mentally, to get to that point. It’s most definitely an individual thing though as to when someone is ready to accept that. I lost my grandmother, whom I was so close to, last July as well as my wonderful father-in-law the month before that and it has been an emotionally tough year. I’m very glad I didn’t have to deal with endo pain on top of all of that. I just wish that all doctors could be trained with the skill, knowledge and understanding of the great specialists so that everyone afflicted with endo could afford the treatment that is so necessary to have a successful ending. I know there is no cure for endo, however, I am thankful for every day, and every year that I have free from that horrible pain. Everytime it fades in my memory due to lack of experiencing it, I re-read some stories of how it was for me as well as others to never forget because until there is a cure, we can never forget what it is or was like. There are too many newly diagnosed as well as undiagnosed females that need us to remember, for their sake. I will try to be better about checking in to the group and I do hope that the reason the group has died down is more due to the same reason I’ve been absent and not because of flaming and spam. We all know that will never change!! Painfree wishes to all, Carey
Response:
I thought this newsgroup would always survive with the crap it’s gone through over the years, but it seems like it’s falling to the wayside. That is a big shame because I know how helpful it was to me over the years, but I also know how stressful it could get with all of the flaming (and yes I participated) that has occurred here. I just hope that those looking for support and not finding it here are able to find it in other groups. I have been guilty of ignoring it when life gets in the way, which is most of the time. I’ve been doing so well since my surgery with Dr. Cook in 1999 that after we moved to NC, I started a job that I am still with and am training for the Chief Financial Officer position as we speak. Life has been treating me very well physically. If only they could figure out how to fix the back problems, I’d be great. My life is truly a testimont to Dr. Cook and his fantastic surgical skills and endo knowledge. I was very blessed to have been able to have surgery with him. I never was able to have children unfortunately, but I’m ok with that now, though it took many painful years, physically and mentally, to get to that point. It’s most definitely an individual thing though as to when someone is ready to accept that. I lost my grandmother, whom I was so close to, last July as well as my wonderful father-in-law the month before that and it has been an emotionally tough year. I’m very glad I didn’t have to deal with endo pain on top of all of that. I just wish that all doctors could be trained with the skill, knowledge and understanding of the great specialists so that everyone afflicted with endo could afford the treatment that is so necessary to have a successful ending. I know there is no cure for endo, however, I am thankful for every day, and every year that I have free from that horrible pain. Everytime it fades in my memory due to lack of experiencing it, I re-read some stories of how it was for me as well as others to never forget because until there is a cure, we can never forget what it is or was like. There are too many newly diagnosed as well as undiagnosed females that need us to remember, for their sake. I will try to be better about checking in to the group and I do hope that the reason the group has died down is more due to the same reason I’ve been absent and not because of flaming and spam. We all know that will never change!! Painfree wishes to all, Carey
Response:
My wife doesn’t do newsgroups, so I am asking for ant advise she can use two months ago, she had heavy spotting (she is 61) and called her doctor. The doctor was on leave so she got a PA, who examined her, found nothing, and told her to see a gyn. Since we are uninsured, it took about a week and 50-75 phone calls to find a gyn who would see her. It was a hospital clinic. She was examined there, and the doctor said she had a mild infection, took a PAP smear, gave her a scrip for 3 days of Bactrim, and sent her to get a sonagram. The people who took the sonagram said that all looked good. Later, the gyn said that the report said that there was a slight thickening of the endo wall, but no problems, and the PAP was negative. Finding no problems, the gyn now wants to do a biopsy. We are afraid that the biopsy is a CYA test, expensive, uncomfortable, and not totally without risk, being done because there is no evidence of any underlying problem. When the biopsy is negative, the doctor will ask for another test, and so on, until she either runs out of tests, or finds something, ANYTHING. On the other hand, we could be wrong, and there could be some good reason to go for this test. Anyone have any ideas or relevant experiences?? – Hide quoted text — Show quoted text – I thought this newsgroup would always survive with the crap it’s gone through over the years, but it seems like it’s falling to the wayside. That is a big shame because I know how helpful it was to me over the years, but I also know how stressful it could get with all of the flaming (and yes I participated) that has occurred here. I just hope that those looking for support and not finding it here are able to find it in other groups. I have been guilty of ignoring it when life gets in the way, which is most of the time. I’ve been doing so well since my surgery with Dr. Cook in 1999 that after we moved to NC, I started a job that I am still with and am training for the Chief Financial Officer position as we speak. Life has been treating me very well physically. If only they could figure out how to fix the back problems, I’d be great. My life is truly a testimont to Dr. Cook and his fantastic surgical skills and endo knowledge. I was very blessed to have been able to have surgery with him. I never was able to have children unfortunately, but I’m ok with that now, though it took many painful years, physically and mentally, to get to that point. It’s most definitely an individual thing though as to when someone is ready to accept that. I lost my grandmother, whom I was so close to, last July as well as my wonderful father-in-law the month before that and it has been an emotionally tough year. I’m very glad I didn’t have to deal with endo pain on top of all of that. I just wish that all doctors could be trained with the skill, knowledge and understanding of the great specialists so that everyone afflicted with endo could afford the treatment that is so necessary to have a successful ending. I know there is no cure for endo, however, I am thankful for every day, and every year that I have free from that horrible pain. Everytime it fades in my memory due to lack of experiencing it, I re-read some stories of how it was for me as well as others to never forget because until there is a cure, we can never forget what it is or was like. There are too many newly diagnosed as well as undiagnosed females that need us to remember, for their sake. I will try to be better about checking in to the group and I do hope that the reason the group has died down is more due to the same reason I’ve been absent and not because of flaming and spam. We all know that will never change!! Painfree wishes to all, Carey
– "…in addition to being foreign territory the past is, as history, a hall of mirrors that reflect the needs of souls observing from the present" Glen Cook
Response:
Hey Susie, Welcome to the group. It is VERY quiet here, but every so often one of the "regular" readers drops by, so just post and eventually some-one will read it! You are certainly not alone, there are hundreds of women just like you just in the newsgroups and on yahoogroups. Have you heard of the UK specific sites like endouk and the NES? Links to them are in my website. I haven’t been to them in a while, but as far as I know they are still very active. Have you tried any meds or alternative treatments at all? Get a referral to a pain clinic, they should be able to help a bit, hopefully – (just don’t hold your breath, I’m still waiting for an appt after being referred in 2002). Feel free to post whenever, someone will read and answer 
Donna http://n.e.endo.tripod.com
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Susan, I hope you find the relief you need. The answer is truly in a competent doctor. Do all the research you can and take it with you to your visits. Painfree wishes, Carey
Response:
Hey Debbie and Donna too, Thanks for the condolences and Donna ours to you as well for your losses. It’s amazing how life can get in the way when you can finally have a life. I wish it so badly for those that haven’t reached that point. I too will try to get here more often than I do. Debbie… I’ll email you. Later, Carey – Hide quoted text — Show quoted text – Wow, Carey, what a surprise to pop in here and see that you’d posted recently! I check the list periodically but haven’t been here in at least six weeks. This list has really changed over the past couple of years, not for the better I might add. Paul and I send our love and condolences in the loss of your grandmother as well as your father in law. Please give John a hug from us, too. It would be wonderful to see this list restored to it’s previous activity level…I’m not sure how to make that happen but if some of us just come periodically and keep the conversation flowing perhaps that would help? I know there are a few of us that have a lot of experience to share and have to believe it would be helpful to someone looking for help that might stumble upon this list. It sounds like you’re very busy but if you find the time, I’d love to catch up from one Dr. Cook patient to another! = ) Hugs, Debbie I thought this newsgroup would always survive with the crap it’s gone through over the years, but it seems like it’s falling to the wayside. That is a big shame because I know how helpful it was to me over the years, but I also know how stressful it could get with all of the flaming (and yes I participated) that has occurred here. I just hope that those looking for support and not finding it here are able to find it in other groups. I have been guilty of ignoring it when life gets in the way, which is most of the time. I’ve been doing so well since my surgery with Dr. Cook in 1999 that after we moved to NC, I started a job that I am still with and am training for the Chief Financial Officer position as we speak. Life has been treating me very well physically. If only they could figure out how to fix the back problems, I’d be great. My life is truly a testimont to Dr. Cook and his fantastic surgical skills and endo knowledge. I was very blessed to have been able to have surgery with him. I never was able to have children unfortunately, but I’m ok with that now, though it took many painful years, physically and mentally, to get to that point. It’s most definitely an individual thing though as to when someone is ready to accept that. I lost my grandmother, whom I was so close to, last July as well as my wonderful father-in-law the month before that and it has been an emotionally tough year. I’m very glad I didn’t have to deal with endo pain on top of all of that. I just wish that all doctors could be trained with the skill, knowledge and understanding of the great specialists so that everyone afflicted with endo could afford the treatment that is so necessary to have a successful ending. I know there is no cure for endo, however, I am thankful for every day, and every year that I have free from that horrible pain. Everytime it fades in my memory due to lack of experiencing it, I re-read some stories of how it was for me as well as others to never forget because until there is a cure, we can never forget what it is or was like. There are too many newly diagnosed as well as undiagnosed females that need us to remember, for their sake. I will try to be better about checking in to the group and I do hope that the reason the group has died down is more due to the same reason I’ve been absent and not because of flaming and spam. We all know that will never change!! Painfree wishes to all, Carey
Response:
Ted, It’s hard to say what it sounds like without knowing more, but at least a rule out approach can be helpful in some situations. I would do a search on the internet of her symptoms and see if anything matches. Sorry I can’t think of anything else. I do wish you and your wife the best of luck in finding out what is wrong. Carey
Response:
Thank you very much Carey.. been researching. I asked here to see if anyone had any experience. It COULD be endometriosis, it could have been an infection, it COULD be cancer, and it COULD be an unusual hormone spike. We are afreaid it is now at the point where the doctors order tests to cover their ass, not to find anything, and that, even if a problem exists, the the odds of finding it are little to none. A biopsy is not without risk and is quite expensive. If there is a real need for it, it would justify the risk, AND the expense, but to make the doctor feel good is not worth it! Ted, It’s hard to say what it sounds like without knowing more, but at least a rule out approach can be helpful in some situations. I would do a search on the internet of her symptoms and see if anything matches. Sorry I can’t think of anything else. I do wish you and your wife the best of luck in finding out what is wrong. Carey
– "…in addition to being foreign territory the past is, as history, a hall of mirrors that reflect the needs of souls observing from the present" Glen Cook
Response:
Ted, I understand what you are saying. It is tough when it’s all about guesswork. I do wish you and your wife the best and hope you find answers soon and she finds pain relief. I wish there was something I could suggest. Best of luck, Carey
Response:
Thanx Cary she isn’t in any pain. If she was, then she would continue with the tests, but she is symptom free, and has been for months. Ted, I understand what you are saying. It is tough when it’s all about guesswork. I do wish you and your wife the best and hope you find answers soon and she finds pain relief. I wish there was something I could suggest. Best of luck, Carey
– "…in addition to being foreign territory the past is, as history, a hall of mirrors that reflect the needs of souls observing from the present" Glen Cook
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Wow, Carey, what a surprise to pop in here and see that you’d posted recently! I check the list periodically but haven’t been here in at least six weeks. This list has really changed over the past couple of years, not for the better I might add. Paul and I send our love and condolences in the loss of your grandmother as well as your father in law. Please give John a hug from us, too. It would be wonderful to see this list restored to it’s previous activity level…I’m not sure how to make that happen but if some of us just come periodically and keep the conversation flowing perhaps that would help? I know there are a few of us that have a lot of experience to share and have to believe it would be helpful to someone looking for help that might stumble upon this list. It sounds like you’re very busy but if you find the time, I’d love to catch up from one Dr. Cook patient to another! = ) Hugs, Debbie – Hide quoted text — Show quoted text – I thought this newsgroup would always survive with the crap it’s gone through over the years, but it seems like it’s falling to the wayside. That is a big shame because I know how helpful it was to me over the years, but I also know how stressful it could get with all of the flaming (and yes I participated) that has occurred here. I just hope that those looking for support and not finding it here are able to find it in other groups. I have been guilty of ignoring it when life gets in the way, which is most of the time. I’ve been doing so well since my surgery with Dr. Cook in 1999 that after we moved to NC, I started a job that I am still with and am training for the Chief Financial Officer position as we speak. Life has been treating me very well physically. If only they could figure out how to fix the back problems, I’d be great. My life is truly a testimont to Dr. Cook and his fantastic surgical skills and endo knowledge. I was very blessed to have been able to have surgery with him. I never was able to have children unfortunately, but I’m ok with that now, though it took many painful years, physically and mentally, to get to that point. It’s most definitely an individual thing though as to when someone is ready to accept that. I lost my grandmother, whom I was so close to, last July as well as my wonderful father-in-law the month before that and it has been an emotionally tough year. I’m very glad I didn’t have to deal with endo pain on top of all of that. I just wish that all doctors could be trained with the skill, knowledge and understanding of the great specialists so that everyone afflicted with endo could afford the treatment that is so necessary to have a successful ending. I know there is no cure for endo, however, I am thankful for every day, and every year that I have free from that horrible pain. Everytime it fades in my memory due to lack of experiencing it, I re-read some stories of how it was for me as well as others to never forget because until there is a cure, we can never forget what it is or was like. There are too many newly diagnosed as well as undiagnosed females that need us to remember, for their sake. I will try to be better about checking in to the group and I do hope that the reason the group has died down is more due to the same reason I’ve been absent and not because of flaming and spam. We all know that will never change!! Painfree wishes to all, Carey
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Hey Carey, Long time, no see. It’s a bit like old home week, Belle popped in about a month ago, now you I don’t post for much the same reason as you. After surgery and zoladex things are so much better, I’ve had two years of my endo in remission and feeling so much better. I still get twinges, but NOTHING as bad as before. I’m working now (manager of a pre-school), I do a lot of community work, I went back to college and have really filled my life up. While I was waiting for surgery someone in my support group told me they felt like their entire life had been spent waiting or on hold, between one gyn appt and the next. I realised my life was the same and I was wasting it away… so I got off my butt and did something about it My sincere condolences on the loss of your Grandmother and to John (?) for his father. I lost my Dad 18 months ago, and my sister 3 months after that. I thought I would never get over it, but you learn to cope. Drop by once in a while, and get everyone else to post!! Donna (UK)
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Question:
Yes i’ve had a whole workup for this and i know pretty much all there is to know about it. When the symptoms first appeared 9 years ago i had to go from doctor to doctor to have many tests done to rule out everything else. I had a laporoscopy and cystoscopy (so painful!.. hopefully i never need to have one again.). I recieved weekly injections of heporin (sp?) for a year which helped at the time but the constant use of catheters for the procedure aggrevated it more then it helped. I was also on Elmiron for a while. It helped but wasnt’ covered by my plan so i had to pay $140 a month for that drug. I live in Canada so all my other treatments were covered by our government health care, luckily. Since i didnt recieve much relief, i participated in many experimental drug trials, as well. I’ve spent some time on continuous antibiotic therapy. My symptoms were more severe then, which led to my missing alot of school and shifts at work. Antibiotic therapy isn’t a cure-all by any means. Actually many urologists are convinced that it doesnt help. The problem with IC is that even when someone does have recurrent low grade infections in the bladder, they often dont show up in tests. I’ve tried many treatments and im aware of the risks involved with all of them. I also know what works for me personally and what doesn’t. I just got in to see my doctor and she’s prescribed me an antibiotic at bedtime to go along with the ditropan (anti spasmodic) that i’m taking for this. I’m going to give it a couple weeks to see if it helps the pain or not.
– Hide quoted text — Show quoted text -I was thinking about this – did a little bit of research (not tons, but a little) because while I knew what cystitis was, I didn’t really know what *interstitial* cystitis was. You may know tons about this for all I know, but I’ll tell you what I found out. a) There must be a fair amount of people with this disease because there is an entire association that is devoted to nothing but helping people with this problem. I was impressed with their list of programs and services actually. www.ichelp.org They will even offer you a state by state list of urologists who have indicated interest, telephone medical helpline etc. I’d take a look at it if you haven’t. There was also a significant amount of other stuff on that site. b) According to this association’s medical info, the disease is diagnosed by ruling out a bacterial infection, as well as bladder cancer, kidney problems, TB, vaginal infection, STD, endometriosis, radiation cystitis and neurological disorders. If all that has been ruled out, a cystoscopy is apparently performed, with hydrodistention and at that time it is possible to visualize the hallmark "pinpoint hemorrhages" on the bladder wall. A biopsy of bladder wall tissue may be obtained during this procedure, allowing the urologist to definitively rule out bladder cancer. According to the medical advisory board of ICA, this disease is not associated with bladder cancer. I’m assuming that you’ve had all this diagnostic workup done…..(?) Interstitial cystitis is not believed to be caused by bacteria, so antibiotic use *sounds to me like it would be* of questionable value, and can cause superimposed overgrowth of mega-bad bacteria if over-used, or used improperly. I hear you saying that antibiotics do help you, so it makes me wonder if you’ve gotten a full workup or not. I have learned to assume nothing on here, so I’m just throwing this out there – you may have had a fabulous workup worthy of publication for all I know. c) The treatments I’m seeing listed are: a drug called Elmiron which repairs damaged bladder lining, tricyclic anti-depressants, anti inflammatory drugs, anti-spasm agents, bladder analgesics, antihistamines and muscle relaxants. They state pretty unequivocally that no one treatment works for everyone. I did not see antibiotics discussed anywhere re. IC treatment, except when they said that IC does not respond to conventional antibiotic therapy. I thought it was interesting that 90 percent of the patients who have this problem are female. They also talked about dietary issues and a few foods that may aggravate the problem, stress-reduction issues and even electronic nerve stimulation (e.g.. a TENS unit) which makes me think that the pain must be rather bad for some people. Apparently also there is a lot of misdiagnosis going on with regard to bladder problems, from what I could gather. I learned a lot from your post about this disorder, I hope that you (if you haven’t already) can check out the website for this association; it appears that they take their work fairly seriously. Hope you’re feeling better soon, Gary Its for my Interstytial Cystitis, which ive tried many many different treatments for. When it flares up pretty badly the only thing that seems to kill the pain is a short course of antibiotics, even though tests dont reveal an actual infection. My doctors reluctant to prescribe antibiotics so i was hoping to try to find someplace online that would carry them. You should get your medicines in a doctor’s office because it’s very reliable – no problem with filling it, legal issues, etc.. not to mention that it’s much more likely to be the medicine you actually need. Online pharmacies also charge a fortune (I looked at some of the spam from them one time, just out of curiosity – the pricing was insane) G Ive never ordered prescriptions online before and im not sure which sites i should consider. Has anyone ever ordered them online? Which sites are more trustworthy?
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I was thinking about this – did a little bit of research (not tons, but a little) because while I knew what cystitis was, I didn’t really know what *interstitial* cystitis was. You may know tons about this for all I know, but I’ll tell you what I found out. a) There must be a fair amount of people with this disease because there is an entire association that is devoted to nothing but helping people with this problem. I was impressed with their list of programs and services actually. www.ichelp.org They will even offer you a state by state list of urologists who have indicated interest, telephone medical helpline etc. I’d take a look at it if you haven’t. There was also a significant amount of other stuff on that site. b) According to this association’s medical info, the disease is diagnosed by ruling out a bacterial infection, as well as bladder cancer, kidney problems, TB, vaginal infection, STD, endometriosis, radiation cystitis and neurological disorders. If all that has been ruled out, a cystoscopy is apparently performed, with hydrodistention and at that time it is possible to visualize the hallmark "pinpoint hemorrhages" on the bladder wall. A biopsy of bladder wall tissue may be obtained during this procedure, allowing the urologist to definitively rule out bladder cancer. According to the medical advisory board of ICA, this disease is not associated with bladder cancer. I’m assuming that you’ve had all this diagnostic workup done…..(?) Interstitial cystitis is not believed to be caused by bacteria, so antibiotic use *sounds to me like it would be* of questionable value, and can cause superimposed overgrowth of mega-bad bacteria if over-used, or used improperly. I hear you saying that antibiotics do help you, so it makes me wonder if you’ve gotten a full workup or not. I have learned to assume nothing on here, so I’m just throwing this out there – you may have had a fabulous workup worthy of publication for all I know. c) The treatments I’m seeing listed are: a drug called Elmiron which repairs damaged bladder lining, tricyclic anti-depressants, anti inflammatory drugs, anti-spasm agents, bladder analgesics, antihistamines and muscle relaxants. They state pretty unequivocally that no one treatment works for everyone. I did not see antibiotics discussed anywhere re. IC treatment, except when they said that IC does not respond to conventional antibiotic therapy. I thought it was interesting that 90 percent of the patients who have this problem are female. They also talked about dietary issues and a few foods that may aggravate the problem, stress-reduction issues and even electronic nerve stimulation (e.g.. a TENS unit) which makes me think that the pain must be rather bad for some people. Apparently also there is a lot of misdiagnosis going on with regard to bladder problems, from what I could gather. I learned a lot from your post about this disorder, I hope that you (if you haven’t already) can check out the website for this association; it appears that they take their work fairly seriously. Hope you’re feeling better soon, Gary
– Hide quoted text — Show quoted text – Its for my Interstytial Cystitis, which ive tried many many different treatments for. When it flares up pretty badly the only thing that seems to kill the pain is a short course of antibiotics, even though tests dont reveal an actual infection. My doctors reluctant to prescribe antibiotics so i was hoping to try to find someplace online that would carry them. You should get your medicines in a doctor’s office because it’s very reliable – no problem with filling it, legal issues, etc.. not to mention that it’s much more likely to be the medicine you actually need. Online pharmacies also charge a fortune (I looked at some of the spam from them one time, just out of curiosity – the pricing was insane) G Ive never ordered prescriptions online before and im not sure which sites i should consider. Has anyone ever ordered them online? Which sites are more trustworthy?
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Has anyone ever ordered them online? Which sites are more trustworthy?
I ordered from Doc Morris once but they’re in the Netherlands. I was quite satisfied.
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You should get your medicines in a doctor’s office because it’s very reliable – no problem with filling it, legal issues, etc.. not to mention that it’s much more likely to be the medicine you actually need. Online pharmacies also charge a fortune (I looked at some of the spam from them one time, just out of curiosity – the pricing was insane) G
– Hide quoted text — Show quoted text – Ive never ordered prescriptions online before and im not sure which sites i should consider. Has anyone ever ordered them online? Which sites are more trustworthy?
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Its for my Interstytial Cystitis, which ive tried many many different treatments for. When it flares up pretty badly the only thing that seems to kill the pain is a short course of antibiotics, even though tests dont reveal an actual infection. My doctors reluctant to prescribe antibiotics so i was hoping to try to find someplace online that would carry them.
– Hide quoted text — Show quoted text – You should get your medicines in a doctor’s office because it’s very reliable – no problem with filling it, legal issues, etc.. not to mention that it’s much more likely to be the medicine you actually need. Online pharmacies also charge a fortune (I looked at some of the spam from them one time, just out of curiosity – the pricing was insane) G Ive never ordered prescriptions online before and im not sure which sites i should consider. Has anyone ever ordered them online? Which sites are more trustworthy?
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Ive never ordered prescriptions online before and im not sure which sites i should consider. Has anyone ever ordered them online? Which sites are more trustworthy?
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Hi, I have not been treated myself for allergies but I’ve heard the same reports. I know that Dr. Cook did allergy/immunology research and treament and would have some information about it. www.drcook.com Wishing the best, Carey
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Thanks for the info, Robyn. I’ll ask the doctor too about the TNF joint pain possibility if he’s there the next time I get my shot (it will be the last one since it’s just a trial and only 2 shots make up the whole therapy). I did’t have any muscle contraction problem after mine; just swelling and pain and itching and joint pain; but here’s some sources I found with info you might find helpful related to endometriosis and the immune system: http://www.clevelandclinic.org/reproductiveresearchcenter/docs/faltdo… and http://64.233.167.104/search?q=cache:4LVNQA5b9lsJ:www.asrm.org/Profes… Hope it helps Jennifer – Hide quoted text — Show quoted text – Hi ladies, it’s been a long time since I posted to this board because I’ve been doing very well the past few years after diagnosis and lap. But recently after an allergy shot I had a reminder about the "old days" when the same twinges and and joint pains I’d had before came back to haunt me (just for a day or so). Reading some research has told me that endo patients have more allergies/asthma than the average population so I’m curious if any of you have been treated with immunotherapy for allergies. If so, did it affect your endometriosis or cause similar systemic symptoms? I’m wondering because in me the shot seemed to cause an inflammatory reaction with much the same effect as the inflammation after my ruptured cyst/untreated endo. I’m wondering if the inflammatory immunce cytokine called TNF might play a role here…it’s a substance that’s found in higher amounts in endo patients’ peritoneal fluid and might even help in the diagnosis in the future. Just curious, have any of you been treated with TNF blockers (ie, Embrel)…if so what was the result? (I’ve read these TNF blockers can have potentially serious effects). Anyway, just trying to determine if taking another allergy shot will cause another transient inflammatory reaction, or if will lead to more chronic problems in the future. Thanks for your insight I started receiving allergy shots about a month before I got a hysterectomy due to endometriosis. My endo pain increased dramatically in the month before the hysterectomy and after receiving the shots, but never could find out if it was due to the shots. The pain went from two weeks before and during my period to every day, regardless of when my period was. Any time I mentioned having endo to my allergist, she would almost recoil and say that it wasn’t her field and didn’t want to talk about it, referring me to my reproductive endocrinologist. I’ve had real bad reactions to the shots since the hysterectomy, including one in November when I started the maintenance phase, which caused pain so bad that I had to leave work, take as much Tylenol as I could handle and sleep it off. The pain was at the injection point in my arm and it contracted (you wouuld think like labor contractions) in 45-second intervals. When I mentioned it to the allergist, all she could say was that it wasn’t a normal reaction. As long as your face and tongue aren’t swollen and you aren’t going into anaphylactic shock, they don’t seem too concerned. I still have a ton of allergies, pretty much anything sets me off, but I’m afraid I don’t know anything about Embrel, TNF blockers, or anything else that you mentioned. I go in for another maintenance shot next week, so I’ve printed out your post to take to the nurse (she’s way friendlier than the doctor). But I hope something I said helped??? :) Robyn
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– Hide quoted text — Show quoted text – Hi ladies, it’s been a long time since I posted to this board because I’ve been doing very well the past few years after diagnosis and lap. But recently after an allergy shot I had a reminder about the "old days" when the same twinges and and joint pains I’d had before came back to haunt me (just for a day or so). Reading some research has told me that endo patients have more allergies/asthma than the average population so I’m curious if any of you have been treated with immunotherapy for allergies. If so, did it affect your endometriosis or cause similar systemic symptoms? I’m wondering because in me the shot seemed to cause an inflammatory reaction with much the same effect as the inflammation after my ruptured cyst/untreated endo. I’m wondering if the inflammatory immunce cytokine called TNF might play a role here…it’s a substance that’s found in higher amounts in endo patients’ peritoneal fluid and might even help in the diagnosis in the future. Just curious, have any of you been treated with TNF blockers (ie, Embrel)…if so what was the result? (I’ve read these TNF blockers can have potentially serious effects). Anyway, just trying to determine if taking another allergy shot will cause another transient inflammatory reaction, or if will lead to more chronic problems in the future. Thanks for your insight
I started receiving allergy shots about a month before I got a hysterectomy due to endometriosis. My endo pain increased dramatically in the month before the hysterectomy and after receiving the shots, but never could find out if it was due to the shots. The pain went from two weeks before and during my period to every day, regardless of when my period was. Any time I mentioned having endo to my allergist, she would almost recoil and say that it wasn’t her field and didn’t want to talk about it, referring me to my reproductive endocrinologist. I’ve had real bad reactions to the shots since the hysterectomy, including one in November when I started the maintenance phase, which caused pain so bad that I had to leave work, take as much Tylenol as I could handle and sleep it off. The pain was at the injection point in my arm and it contracted (you wouuld think like labor contractions) in 45-second intervals. When I mentioned it to the allergist, all she could say was that it wasn’t a normal reaction. As long as your face and tongue aren’t swollen and you aren’t going into anaphylactic shock, they don’t seem too concerned. I still have a ton of allergies, pretty much anything sets me off, but I’m afraid I don’t know anything about Embrel, TNF blockers, or anything else that you mentioned. I go in for another maintenance shot next week, so I’ve printed out your post to take to the nurse (she’s way friendlier than the doctor). But I hope something I said helped??? :) Robyn
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Hi ladies, it’s been a long time since I posted to this board because I’ve been doing very well the past few years after diagnosis and lap. But recently after an allergy shot I had a reminder about the "old days" when the same twinges and and joint pains I’d had before came back to haunt me (just for a day or so). Reading some research has told me that endo patients have more allergies/asthma than the average population so I’m curious if any of you have been treated with immunotherapy for allergies. If so, did it affect your endometriosis or cause similar systemic symptoms? I’m wondering because in me the shot seemed to cause an inflammatory reaction with much the same effect as the inflammation after my ruptured cyst/untreated endo. I’m wondering if the inflammatory immunce cytokine called TNF might play a role here…it’s a substance that’s found in higher amounts in endo patients’ peritoneal fluid and might even help in the diagnosis in the future. Just curious, have any of you been treated with TNF blockers (ie, Embrel)…if so what was the result? (I’ve read these TNF blockers can have potentially serious effects). Anyway, just trying to determine if taking another allergy shot will cause another transient inflammatory reaction, or if will lead to more chronic problems in the future. Thanks for your insight
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Question:
Don, Sandy and Don, Thanks for your input. I did try Pamelor once, but not at the same time I was taking the clonazepam. The Pamelor caused urinary retention, so I was not up all night peeing, one of the symptoms of my interstitial cystitis. I have an appointment with the neuro in two weeks. If the Lunesta doesn’t seem to be doing any good, I will ask him about trying the clonazepam and Pamelor (nortriptylin). I know I did best with the Seroquel, but can’t reasonably expect the doctor to jump through the hoops to please the insurance companies request for proof that it works for insomnia. I guess I could get a referral to a psych doctor and have him/her write the Rx, but that would be as a last result. The headache is at about a four today and I have to go to my nephew’s birthday party. I am hoping that there will be a dark quiet place I can hang out if things get worse. Thanks again for you’re responses. Karen in San Diego – Hide quoted text — Show quoted text – My Neurologist had me do a sleep study to see if I had sleep apnea. Well, I don’t, but I do have a sleep disorder where my brain has active phases all through the night that wake me up about every 45 to 90 minutes. They’ve tried Ambien (four months later it quit working), Halcion (didn’t work at all), and Restoril (temazepam, works sometimes). I already take 2 mg of Klonopin (clonazepam) and 16 mg of Zanaflex (tizanidine) at bedtime. I am lucky to get 4 or 5 non continuous hours in an eight hour period. The neuro is convinced that the sleep disorder is causing the migraines, so they recently tried me on Seroquel. They gave me samples (20), and wrote an Rx. The Seroquel gave me 6 straight hours of sleep and I had no migraines while taking it, but my insurance will not cover it because it is an anti psychotic and using it for insomnia is off label. They sent me a letter saying that the neuro would have to provide them proof of at least two studies where Seroquel was effectively used to treat insomnia. Needless to say, the neuro did nothing. Enter LUNESTA. Also not covered, but a prior authorization got me 20 pills for $20 copay, and it only it took THREE weeks to jump through all the hoops. (Dr’s. Office, Insurance Company, and Pharmacy). While waiting for this new Rx, I had one migraine that lasted five days that nothing would touch. Not Migranal, not Axert, not anything. I ended up missing two days of work and taking Vicodin, Zanaflex, and Ambien to just try to sleep it off. Neuro’s office talked about prednisone, but I’ve done a Medpack before and it didn’t work. Finally picked up Lunesta Rx yesterday and took one 2 mg pill last night before bed. Did not help me fall asleep, but I only awoke once in a seven hour period. At 6:40 AM, alarm went off for work and I had a slight headache. Decided to go to work and see how things went. By 9:00 AM took two Axert. At 10:00 needed a Zofran for nausea. By 11:30 was in tears from the pain and feeling helpless. Boss sent me home at noon. I know I will give this new drug a chance, but I’ve only been back to work since February after one year off work on State Disability due to almost daily migraines. Getting better sleep helped me go from 2 to 4 debilitating migraines per week to 2 to 4 per month. I know the neuro is right about the sleep disorder, but it doesn’t alleviate the helpless feeling I have that I’m just going to end up in the same pattern again. Abuse of sick leave in my previous position caused them to require me to get a doctor’s note for any day or part of a day that I missed due to migraine. I was on FMLA from Sep. 2003 to Dec. 2003. Went back for three weeks, got a migraine that lasted ten days, then the neuro took me off work indefinitely (that’s when I applied for SDI). When I had addressed the sleep disorder and my migraines were greatly reduced, I told my employer I was ready to return to work. My previous County job said they could not fill my old position due to budget concerns, so I took a $4 per hour pay cut to get back to work at another County facility. The work isn’t demanding, I am learning new things, the coworkers require some dealing with at times, but all in all it’s a good job. Now I feel all up in the air again, that I’m going to blow it and have to go on disability again. I turned 40 last year and don’t want to be "disabled" at this age. I can function, I have something to contribute, and I don’t want to give in to something that I see as preventable. That’s enough of a rant, but I needed to get it out. Please join me in hoping that Lunesta is the answer for those of us who’s migraines are caused by lack of sleep. I hope you all had a better day than I did. Karen in San Diego P.S. Has anyone else tried Lunesta? KP
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insomnia is off label. They sent me a letter saying that the neuro would have to provide them proof of at least two studies where Seroquel was effectively used to treat insomnia. Needless to say, the neuro did nothing. Karen in San Diego P.S. Has anyone else tried Lunesta? KP
Karen, While not an official ’study’ Seroquel was the best thing I ever went on to control my sleep. It also keeps me even during the day (I take 100mg 3xday). I think after years of trying every tricyclic, SSRI…etc…my nervous system got so messed up that I could not function without something keeping it even. Enter the Serequel. If I miss a dose my body starts a freak-out process. Totally weird but it has been a life saver for me. Dan
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Sandy, I am one of the unlucky few that Elavil and Flexeril do not work on. The both act backwards, wiring me instead of helping me fall asleep. I am currently seeing a doctor of Chinese Medicine and she is trying acupuncture and herbs to alleviate some of my symptoms of fibromyalgia, interstitial cystitis, TMJ, IBS, migraine, endometriosis, pelvic floor disorder, and chronic myofascial pain. I recently stopped taking my Singular for asthma, as the side effects were causing more problems than the med was helping. I always have an inhaler with me just in case, but my asthma has improved greatly in the last eighteen months. This is about the time I stopped working in a building that had mold, fungus, and dampness problems. I know this is not a coincidence, as I have been allergy tested and came back allergic to dust, mold and mildew. The fires we had in San Diego County in Oct. 2003 set off only one bad asthma attack, but I was staying inside mostly. The ash fell pretty thick here, but the fire was never closer than about five miles. Now, my biggest triggers are barometer change and hormone changes. I went off of Yasmin birth control in February and have had two periods since then. I hadn’t had a period since Oct. 2003, but I am hoping the last five day migraine was not hormone related. The migraine stopped the first day of my period. Now, this new migraine started the day after my period stopped. I’ll be seeing the endocrinologist next week and ask him about doing hormone level tests. He knows I have PCOS but says the only treatment is birth control pills and metformin. I can not take metformin because it makes me hypoglycemic. He isn’t interested in treatment and the gyn isn’t interested in removing my ovaries. I guess having an HMO really can be detrimental to your health. Karen in San Diego – Hide quoted text — Show quoted text – My Neurologist had me do a sleep study to see if I had sleep apnea. Well, I don’t, but I do have a sleep disorder where my brain has active phases all through the night that wake me up about every 45 to 90 minutes. They’ve tried Ambien (four months later it quit working), Halcion (didn’t work at all), and Restoril (temazepam, works sometimes). I already take 2 mg of Klonopin (clonazepam) and 16 mg of Zanaflex (tizanidine) at bedtime. I am lucky to get 4 or 5 non continuous hours in an eight hour period. The neuro is convinced that the sleep disorder is causing the migraines, so they recently tried me on Seroquel. They gave me samples (20), and wrote an Rx. The Seroquel gave me 6 straight hours of sleep and I had no migraines while taking it, but my insurance will not cover it because it is an anti psychotic and using it for insomnia is off label. They sent me a letter saying that the neuro would have to provide them proof of at least two studies where Seroquel was effectively used to treat insomnia. Needless to say, the neuro did nothing. Enter LUNESTA. Also not covered, but a prior authorization got me 20 pills for $20 copay, and it only it took THREE weeks to jump through all the hoops. (Dr’s. Office, Insurance Company, and Pharmacy). While waiting for this new Rx, I had one migraine that lasted five days that nothing would touch. Not Migranal, not Axert, not anything. I ended up missing two days of work and taking Vicodin, Zanaflex, and Ambien to just try to sleep it off. Neuro’s office talked about prednisone, but I’ve done a Medpack before and it didn’t work. Finally picked up Lunesta Rx yesterday and took one 2 mg pill last night before bed. Did not help me fall asleep, but I only awoke once in a seven hour period. At 6:40 AM, alarm went off for work and I had a slight headache. Decided to go to work and see how things went. By 9:00 AM took two Axert. At 10:00 needed a Zofran for nausea. By 11:30 was in tears from the pain and feeling helpless. Boss sent me home at noon. I know I will give this new drug a chance, but I’ve only been back to work since February after one year off work on State Disability due to almost daily migraines. Getting better sleep helped me go from 2 to 4 debilitating migraines per week to 2 to 4 per month. I know the neuro is right about the sleep disorder, but it doesn’t alleviate the helpless feeling I have that I’m just going to end up in the same pattern again. Abuse of sick leave in my previous position caused them to require me to get a doctor’s note for any day or part of a day that I missed due to migraine. I was on FMLA from Sep. 2003 to Dec. 2003. Went back for three weeks, got a migraine that lasted ten days, then the neuro took me off work indefinitely (that’s when I applied for SDI). When I had addressed the sleep disorder and my migraines were greatly reduced, I told my employer I was ready to return to work. My previous County job said they could not fill my old position due to budget concerns, so I took a $4 per hour pay cut to get back to work at another County facility. The work isn’t demanding, I am learning new things, the coworkers require some dealing with at times, but all in all it’s a good job. Now I feel all up in the air again, that I’m going to blow it and have to go on disability again. I turned 40 last year and don’t want to be "disabled" at this age. I can function, I have something to contribute, and I don’t want to give in to something that I see as preventable. That’s enough of a rant, but I needed to get it out. Please join me in hoping that Lunesta is the answer for those of us who’s migraines are caused by lack of sleep. I hope you all had a better day than I did. Karen in San Diego P.S. Has anyone else tried Lunesta? KP As Don McCullough suggested, the tricyclics [amitriptyline (Elavil?, Saroten?, Retard? (Finland)), desipramine (Norpramin?), doxepin (Sinequan?), imipramine (Tofranil?), nortriptyline (Pamelor?, Aventyl?), or trimipramine (Surmontil?)] have been shown to prevent migraine, and are cheap. At least some of them have the added virtue of helping induce stage III sleep, while Ambien etc just get your eyes closed but do not take you to a deep sleep. Another agent that often worrks for induction of deep sleep is the muscle relaxer cyclobenzaprine (Flexeril?). It is also off patent and cheap.
Response:
– Hide quoted text — Show quoted text -My Neurologist had me do a sleep study to see if I had sleep apnea. Well, I don’t, but I do have a sleep disorder where my brain has active phases all through the night that wake me up about every 45 to 90 minutes. They’ve tried Ambien (four months later it quit working), Halcion (didn’t work at all), and Restoril (temazepam, works sometimes). I already take 2 mg of Klonopin (clonazepam) and 16 mg of Zanaflex (tizanidine) at bedtime. I am lucky to get 4 or 5 non continuous hours in an eight hour period. The neuro is convinced that the sleep disorder is causing the migraines, so they recently tried me on Seroquel. They gave me samples (20), and wrote an Rx. The Seroquel gave me 6 straight hours of sleep and I had no migraines while taking it, but my insurance will not cover it because it is an anti psychotic and using it for insomnia is off label. They sent me a letter saying that the neuro would have to provide them proof of at least two studies where Seroquel was effectively used to treat insomnia. Needless to say, the neuro did nothing. Enter LUNESTA. Also not covered, but a prior authorization got me 20 pills for $20 copay, and it only it took THREE weeks to jump through all the hoops. (Dr’s. Office, Insurance Company, and Pharmacy). While waiting for this new Rx, I had one migraine that lasted five days that nothing would touch. Not Migranal, not Axert, not anything. I ended up missing two days of work and taking Vicodin, Zanaflex, and Ambien to just try to sleep it off. Neuro’s office talked about prednisone, but I’ve done a Medpack before and it didn’t work. Finally picked up Lunesta Rx yesterday and took one 2 mg pill last night before bed. Did not help me fall asleep, but I only awoke once in a seven hour period. At 6:40 AM, alarm went off for work and I had a slight headache. Decided to go to work and see how things went. By 9:00 AM took two Axert. At 10:00 needed a Zofran for nausea. By 11:30 was in tears from the pain and feeling helpless. Boss sent me home at noon. I know I will give this new drug a chance, but I’ve only been back to work since February after one year off work on State Disability due to almost daily migraines. Getting better sleep helped me go from 2 to 4 debilitating migraines per week to 2 to 4 per month. I know the neuro is right about the sleep disorder, but it doesn’t alleviate the helpless feeling I have that I’m just going to end up in the same pattern again. Abuse of sick leave in my previous position caused them to require me to get a doctor’s note for any day or part of a day that I missed due to migraine. I was on FMLA from Sep. 2003 to Dec. 2003. Went back for three weeks, got a migraine that lasted ten days, then the neuro took me off work indefinitely (that’s when I applied for SDI). When I had addressed the sleep disorder and my migraines were greatly reduced, I told my employer I was ready to return to work. My previous County job said they could not fill my old position due to budget concerns, so I took a $4 per hour pay cut to get back to work at another County facility. The work isn’t demanding, I am learning new things, the coworkers require some dealing with at times, but all in all it’s a good job. Now I feel all up in the air again, that I’m going to blow it and have to go on disability again. I turned 40 last year and don’t want to be "disabled" at this age. I can function, I have something to contribute, and I don’t want to give in to something that I see as preventable. That’s enough of a rant, but I needed to get it out. Please join me in hoping that Lunesta is the answer for those of us who’s migraines are caused by lack of sleep. I hope you all had a better day than I did. Karen in San Diego P.S. Has anyone else tried Lunesta? KP
So have the Doc simply say you are crazy if it is an anti-psychotic.
Response:
wrote something wonderfully witty: – Hide quoted text — Show quoted text – My Neurologist had me do a sleep study to see if I had sleep apnea. Well, I don’t, but I do have a sleep disorder where my brain has active phases all through the night that wake me up about every 45 to 90 minutes. They’ve tried Ambien (four months later it quit working), Halcion (didn’t work at all), and Restoril (temazepam, works sometimes). I already take 2 mg of Klonopin (clonazepam) and 16 mg of Zanaflex (tizanidine) at bedtime. I am lucky to get 4 or 5 non continuous hours in an eight hour period. The neuro is convinced that the sleep disorder is causing the migraines, so they recently tried me on Seroquel. They gave me samples (20), and wrote an Rx. The Seroquel gave me 6 straight hours of sleep and I had no migraines while taking it, but my insurance will not cover it because it is an anti psychotic and using it for insomnia is off label. They sent me a letter saying that the neuro would have to provide them proof of at least two studies where Seroquel was effectively used to treat insomnia. Needless to say, the neuro did nothing. Enter LUNESTA. Also not covered, but a prior authorization got me 20 pills for $20 copay, and it only it took THREE weeks to jump through all the hoops. (Dr’s. Office, Insurance Company, and Pharmacy). While waiting for this new Rx, I had one migraine that lasted five days that nothing would touch. Not Migranal, not Axert, not anything. I ended up missing two days of work and taking Vicodin, Zanaflex, and Ambien to just try to sleep it off. Neuro’s office talked about prednisone, but I’ve done a Medpack before and it didn’t work. Finally picked up Lunesta Rx yesterday and took one 2 mg pill last night before bed. Did not help me fall asleep, but I only awoke once in a seven hour period. At 6:40 AM, alarm went off for work and I had a slight headache. Decided to go to work and see how things went. By 9:00 AM took two Axert. At 10:00 needed a Zofran for nausea. By 11:30 was in tears from the pain and feeling helpless. Boss sent me home at noon. I know I will give this new drug a chance, but I’ve only been back to work since February after one year off work on State Disability due to almost daily migraines. Getting better sleep helped me go from 2 to 4 debilitating migraines per week to 2 to 4 per month. I know the neuro is right about the sleep disorder, but it doesn’t alleviate the helpless feeling I have that I’m just going to end up in the same pattern again. Abuse of sick leave in my previous position caused them to require me to get a doctor’s note for any day or part of a day that I missed due to migraine. I was on FMLA from Sep. 2003 to Dec. 2003. Went back for three weeks, got a migraine that lasted ten days, then the neuro took me off work indefinitely (that’s when I applied for SDI). When I had addressed the sleep disorder and my migraines were greatly reduced, I told my employer I was ready to return to work. My previous County job said they could not fill my old position due to budget concerns, so I took a $4 per hour pay cut to get back to work at another County facility. The work isn’t demanding, I am learning new things, the coworkers require some dealing with at times, but all in all it’s a good job. Now I feel all up in the air again, that I’m going to blow it and have to go on disability again. I turned 40 last year and don’t want to be "disabled" at this age. I can function, I have something to contribute, and I don’t want to give in to something that I see as preventable. That’s enough of a rant, but I needed to get it out. Please join me in hoping that Lunesta is the answer for those of us who’s migraines are caused by lack of sleep. I hope you all had a better day than I did. Karen in San Diego P.S. Has anyone else tried Lunesta? KP As Don McCullough suggested, the tricyclics [amitriptyline (Elavil
Question:
I hope this websities well get going again.And get rid of spam.It used to be a good to good one to talk about endo.I well until look and read it. Tina
Response:
I’m a newbie. Hello fellow strong, determined women! I would love to hear some other experiences. I had a hysterectomy for endo when I was 32, they left one ovary but had to take it about 6 months later. Then along came hormone replacement-too young, too big a breast cancer risk so had a double radical masectomy. Endo is now back, I have been in maternity clothes for 14 months now, my gyn. is great but is trying everything before going in again. He is insisting on a CAT scan, we know it can’t be seen but I think he wants to be sure an alien will not pop out in the O.R. and battle for my property! So now I wait for the scan, contrast or no contrast, can’t make up his mind-just do the test and let’s carry on. I have 2 great kids to take care of and have fibro. am in menopause (my 7 year old son knows waaay too much about female health, he is always trying to put frozen vegetables on my neck!) and have also had 6 pelvic reconstructions from a bad delivery. It’s so ironic and most days I can smile about the fact that I look 9 months pregnant and would have done anything to be able to be pregnant again. We now have an incredible 3 1/2 year old daughter from Korea. I can’t imagine not being her Mommy so maybe endo served a purpose, but now I have thanked it profusely and want it out!!! I have to cathaderize for the rest of my life now, my bladder got a tad annoyed with all of the surgeries and general anes. and shut down about 4 surgeries ago. I also have IBS, have been constipated from birth-I could eat the bark off a tree and the fiber would simply give me splinters. That’s a quick wrap up of me, would love to hear from others. Take care-going to sit in the snow for a few minutes now. endogirl
Response:
Hi I am also new. I am 24 and have been struggling for almost 10 years although I was diagnosed only 5 years ago. My docs and I are very frustrated because there seems like nothing works. I have had 2 laps they don’t want to do any more to risky although I luckily still have my ovaries since I want so badly to have children. That will be my challenge since I rarely leave my house I will never meet anyone!!! One Day. I have tries continous BCP, Lupron, Depo, acupuncture, pain meds and all I could get perscribed but nothing works. My pain clinic dr. wants to install a morphine pump into my body which I am petrified of but he says thats all that is left to do. I don’t even work anymore I have to live my parents since I can’t take care of myself anymore but I am so lucky to have them. Does anyone have any ideas on what else I can do or try? I feel like I am in limbo just waiting for some sort of miracle. I can’t imagine that this pain will just go away even after children or a hysterectomy since I have already tried menopause and that was no help or any fun. well I hope to hear from some of you soon keep those ideas coming and I wish all of you great luck with your battles we can all beat this together.
Response:
Hi, and welcome Sounds like you have really been through the mill: I’m sorry. Your sense of humour shines through, and obviously helps you deal with everything I hope your next surgery, after the CAT scan, helps. Sometimes endo does show up on MRI, and I know of cases where a scrap of ovary was left behind and it re-grew in a very weird place – only showed up on a CAT scan. It’s worth having the scan, just to eliminate any other causes. Quick bio: I’ve had endo for… crikey, almost 20 years! I’m NOT counting again LOL. I have two children, and count myself extremely lucky to have them. I’ve been in remission for several years now, after having surgery, depo provera, zoladex, acupuncture and Chinese herbs all within the space of two years I think I intimidated the implants into hiding LOL. I can feel twinges and tweaks, and know it’s coming back but it’s still at the easily managed stage. Good luck with the CAT, let us know how you get on. Donna http://asefaqs.tripod.com
Response:
Hi, It sounds like you need to find a doctor with a little more knowledge of endo and how it’s properly treated. Or at the very least, go to some endo specialists websites and print down some information on how to properly remove and treat endometriosis so that you don’t have to have repeated surgeries. Many things can cause endo related pain… adhesions, adenomyosis, fibroids, etc… Make sure your doc has the knowledge to determine what is going on and is treating you properly. It makes ALL the difference in the world to be treated properly. I know from experience. I wish you the best, Carey
Response:
Question:
"cinkat" <na…@cutterclip.com> wrote in message
news:b4c6e789f34c7b5d731fb989ba01f36e@localhost.talkaboutsupport.com… >I was having hot flashes, but she listed off a whole bunch of things that > she said estrogen helps. I wish I could remember them all, but it was > things like bodily functions, like Kidneys. She also siad the hot flashes > were not harmless, that they caused brain cells to die?? I think…she > said it all at once so it was hard to remember…I just remember thinking > wow, this is a good thing.
Your doctor sounds like she may not be up-to-date on the latest estrogen findings. As far as hot flashes causing brain cells to die…never heard it before. Many men and women suffer from hot flashes. I still get hot flashes, even while taking estrogen. They are just less often and not as severe. Gwen
Response:
In article <BDD104FC.F8B%as…@earthlink.net>, Arriba Statrue <as…@earthlink.net> wrote: > Hi, about the brain cells dying during hot flashes. Does this happen to > anyone else? I’m in a perfectly good mood and then I dip drastically into a > depressive state and I know that a hot flash is on it’s way.
Yes, I’ve read posts from women here about mood/thought changes just before a hot flash. > After about 3 > minutes every thing is back the way it was. I’d be willing to bet that I’m > loosing brain cells during the dips.
What makes you think that? Are you noticing increasing cognitive deficits or the like? Priscilla — "It is very, very dangerous to treat any human, lowest of the low even, with contempt and arrogant whatever. The Lord takes this kind of treatment very, very personal." – QBaal in newsgroup alt.religion.christian.episcopal
Response:
"FurPaw" <furpawnews…@comcast.net> wrote in message
news:N9GdndGjxMC2czbcRVn-tg@comcast.com… > Marilee wrote: >> A good oil? >> And why do you think you’re losing brain cells during a hot flash? (I >> don’t think I lose any.) >> Marilee > Oh, you probably are losing brain cells during a hot flash – the question > is, do you lose more during a hot flash than at any other time?
Why, I am absolutely positive that I do not. ;) Marilee
Response:
"cinkat" <na…@cutterclip.com> wrote in message
news:b1d3240a859183d3206076dccb4841cd@localhost.talkaboutsupport.com… > My ovaries were removed and I also had a laperoscopy (sp?) to check for > any > endometriosis at the same time. My Dr. said I could stay on the estrogen > for the rest of my life..
Menopause symptoms are often (not always) more severe for women who’ve undergone surgical menopause. There is a difference between surgical menopause and natural menopause. Endometriosis can come back after a hysterectomy, even if the ovaries have been removed and if no estrogen is taken. Many doctors do advise their surgipausal patients to remain on estrogen forever. Others say short term. I also had a hysterectomy and ovaries removed due to endometriosis. I had fibroids, too. I’ve been taking estrogen since my surgery at the age of 40. (4 years ago) I’m not sure whether I will take it forever or not. I am taking it one day (month, year) at a time. Gwen
Response:
"Arriba Statrue" <as…@earthlink.net> wrote in message
news:BDD104FC.F8B%astat@earthlink.net… – Hide quoted text — Show quoted text -> cathg_S_PAM_FREE_iesbre…@yahoo.com11/29/04 3:26 PM >> On Mon, 29 Nov 2004 17:35:01 -0500, "Priscilla H. Ballou" >> <vze23…@verizon.net> wrote: >>> cinkat wrote: >>>> I was having hot flashes, but she listed off a whole bunch of things >>>> that >>>> she said estrogen helps. I wish I could remember them all, but it was >>>> things like bodily functions, like Kidneys. She also siad the hot >>>> flashes >>>> were not harmless, that they caused brain cells to die?? I think…she >>>> said it all at once so it was hard to remember…I just remember >>>> thinking >>>> wow, this is a good thing. >>> This sounds really fishy to me. Estrogen helping your kidneys? Hot >>> flashes killing brain cells? I second the suggestion you find a way to >>> write down what this doctor is saying. Estrogen for the rest of your >>> life sounds to me like a Very Bad Idea, given the chance of it causing >>> breast cancer, strokes, etc. >>> Priscilla >> What she said. >> And welcome to a.s.m.! >> Cathering >> This being a woman thing isn’t at all like they made it out to be >> in the brochure. -(our own jfred) >> To reply, please remove Spam Free from the email address above. > Hi, about the brain cells dying during hot flashes. Does this happen to > anyone else? I’m in a perfectly good mood and then I dip drastically into > a > depressive state and I know that a hot flash is on it’s way. After about 3 > minutes every thing is back the way it was. I’d be willing to bet that > I’m > loosing brain cells during the dips. Mostly a good oil takes care of that > particular problem.
A good oil? And why do you think you’re losing brain cells during a hot flash? (I don’t think I lose any.) Marilee – Hide quoted text — Show quoted text -> Arriba
Response:
- Hide quoted text — Show quoted text -Marilee wrote: > "Arriba Statrue" <as…@earthlink.net> wrote in message > news:BDD104FC.F8B%astat@earthlink.net… >>cathg_S_PAM_FREE_iesbre…@yahoo.com11/29/04 3:26 PM >>>On Mon, 29 Nov 2004 17:35:01 -0500, "Priscilla H. Ballou" >>><vze23…@verizon.net> wrote: >>>>cinkat wrote: >>>>>I was having hot flashes, but she listed off a whole bunch of things >>>>>that >>>>>she said estrogen helps. I wish I could remember them all, but it was >>>>>things like bodily functions, like Kidneys. She also siad the hot >>>>>flashes >>>>>were not harmless, that they caused brain cells to die?? I think…she >>>>>said it all at once so it was hard to remember…I just remember >>>>>thinking >>>>>wow, this is a good thing. >>>>This sounds really fishy to me. Estrogen helping your kidneys? Hot >>>>flashes killing brain cells? I second the suggestion you find a way to >>>>write down what this doctor is saying. Estrogen for the rest of your >>>>life sounds to me like a Very Bad Idea, given the chance of it causing >>>>breast cancer, strokes, etc. >>>>Priscilla >>>What she said. >>>And welcome to a.s.m.! >>>Cathering >>>This being a woman thing isn’t at all like they made it out to be >>>in the brochure. -(our own jfred) >>>To reply, please remove Spam Free from the email address above. >>Hi, about the brain cells dying during hot flashes. Does this happen to >>anyone else? I’m in a perfectly good mood and then I dip drastically into >>a >>depressive state and I know that a hot flash is on it’s way. After about 3 >>minutes every thing is back the way it was. I’d be willing to bet that >>I’m >>loosing brain cells during the dips. Mostly a good oil takes care of that >>particular problem. > A good oil? > And why do you think you’re losing brain cells during a hot flash? (I don’t > think I lose any.) > Marilee
Oh, you probably are losing brain cells during a hot flash – the question is, do you lose more during a hot flash than at any other time? FurPaw — I pledge allegiance to the Constitution of the United States of America, and to the republic which it established, one nation from many peoples, promising liberty and justice for all. Feel free to use the above variant pledge in your own postings. To reply, unleash the dog.
Response:
cathg_S_PAM_FREE_iesbre…@yahoo.com11/29/04 3:26 PM – Hide quoted text — Show quoted text -> On Mon, 29 Nov 2004 17:35:01 -0500, "Priscilla H. Ballou" > <vze23…@verizon.net> wrote: >> cinkat wrote: >>> I was having hot flashes, but she listed off a whole bunch of things that >>> she said estrogen helps. I wish I could remember them all, but it was >>> things like bodily functions, like Kidneys. She also siad the hot flashes >>> were not harmless, that they caused brain cells to die?? I think…she >>> said it all at once so it was hard to remember…I just remember thinking >>> wow, this is a good thing. >> This sounds really fishy to me. Estrogen helping your kidneys? Hot >> flashes killing brain cells? I second the suggestion you find a way to >> write down what this doctor is saying. Estrogen for the rest of your >> life sounds to me like a Very Bad Idea, given the chance of it causing >> breast cancer, strokes, etc. >> Priscilla > What she said. > And welcome to a.s.m.! > Cathering > This being a woman thing isn’t at all like they made it out to be > in the brochure. -(our own jfred) > To reply, please remove Spam Free from the email address above.
Hi, about the brain cells dying during hot flashes. Does this happen to anyone else? I’m in a perfectly good mood and then I dip drastically into a depressive state and I know that a hot flash is on it’s way. After about 3 minutes every thing is back the way it was. I’d be willing to bet that I’m loosing brain cells during the dips. Mostly a good oil takes care of that particular problem. Arriba
Response:
"cinkat" <na…@cutterclip.com> wrote in message
news:b4c6e789f34c7b5d731fb989ba01f36e@localhost.talkaboutsupport.com… > I was having hot flashes, but she listed off a whole bunch of things that > she said estrogen helps. I wish I could remember them all, but it was > things like bodily functions, like Kidneys. She also siad the hot flashes > were not harmless, that they caused brain cells to die??
I think this is a crock of shit. I think…she > said it all at once so it was hard to remember…I just remember thinking > wow, this is a good thing.
Hmmmm. I think your doctor is not well informed. Kudos to you for checking up on her, though. Welcome to a.s.m. Marilee
Response:
- Hide quoted text — Show quoted text -Peahen wrote: > "FurPaw" <furpawnews…@comcast.net> wrote in message > news:R6SdnWtOaoT0ATbcRVn-uQ@comcast.com… >>Chakolate wrote: >>>Hi, cinkat, welcome to asm. Were you having any symptoms that required >>>medication? IOW, were your hot flashes/night sweats making your life >>>miserable? Why did the doctor say you needed anything? >>>Your sister’s doctor seems to be more up-to-date than your own. Estrogen >>>supplementation appears to be dangerous no matter whether it’s opposed by >>>progesterone or not. The risks must be evaluated along with the benefit >>>of reduced symptoms, and only you can decide if the risk is reasonable. >>The risks of estrogen are much greater for anyone who has had reproductive >>cancer (cinkat’s sister) than for "the average woman." Your (Cinkat) risks >>for endometrial cancer were eliminated with the hysterctomy. AFAIK, you >>share the same risks for breast cancer and ovarian cancer (or were your >>ovaries also removed? Is that what you mean by "total?") as "the average >>woman," maybe greater risks if there is a genetic component in your >>sister’s ovarian cancer. And these risks are higher with estrogen therapy >>than without it. > Actually one can get both endometrial & ovarian cancer without either the > uterus or ovaries. How, I’m not quite sure (at the time, I understood it to > mean the type of cancer as opposed to the type of organ). Anyway, I’d read > that on a couple of places online (no cites, it was a few years ago pre & > post hysty while I was reading through dozens of articles).
You’d need to have rogue cells from ovary or endometrium left in the abdominal cavity. It is possible, but pretty unusual, IIRC, in the absence of pre-existing cancer. It’s more likely if the organs had been removed because of cancer – cancerous cells left behind. FurPaw — I pledge allegiance to the Constitution of the United States of America, and to the republic which it established, one nation from many peoples, promising liberty and justice for all. Feel free to use the above variant pledge in your own postings. To reply, unleash the dog.
Response:
"FurPaw" <furpawnews…@comcast.net> wrote in message
news:R6SdnWtOaoT0ATbcRVn-uQ@comcast.com… – Hide quoted text — Show quoted text -> Chakolate wrote: >> Hi, cinkat, welcome to asm. Were you having any symptoms that required >> medication? IOW, were your hot flashes/night sweats making your life >> miserable? Why did the doctor say you needed anything? >> Your sister’s doctor seems to be more up-to-date than your own. Estrogen >> supplementation appears to be dangerous no matter whether it’s opposed by >> progesterone or not. The risks must be evaluated along with the benefit >> of reduced symptoms, and only you can decide if the risk is reasonable. > The risks of estrogen are much greater for anyone who has had reproductive > cancer (cinkat’s sister) than for "the average woman." Your (Cinkat) risks > for endometrial cancer were eliminated with the hysterctomy. AFAIK, you > share the same risks for breast cancer and ovarian cancer (or were your > ovaries also removed? Is that what you mean by "total?") as "the average > woman," maybe greater risks if there is a genetic component in your > sister’s ovarian cancer. And these risks are higher with estrogen therapy > than without it.
Actually one can get both endometrial & ovarian cancer without either the uterus or ovaries. How, I’m not quite sure (at the time, I understood it to mean the type of cancer as opposed to the type of organ). Anyway, I’d read that on a couple of places online (no cites, it was a few years ago pre & post hysty while I was reading through dozens of articles).
Response:
"Cathy Friedmann" <c…@adelphia.net> wrote in message
news:311k56F343175U1@uni-berlin.de… – Hide quoted text — Show quoted text -> "cinkat" <na…@cutterclip.com> wrote in message > news:68a84e8d758ae83ad2ae8af6b501146f@localhost.talkaboutsupport.com… >> Hi I am new here. I have had a long history of fibroids and endometriosis >> and had a total hysterectomy last month at 44. My Dr highly recommended >> estrogen only (low dose)saying it had almost no down side for women who >> started it young and early. > Ask him/her exactly what s/he means by "almost" no side effects. There > were > large studies going on in which both HRT (for women with a uterus) & ET > only > (for women sans a uterus) were being given. The HRT portion was halted > early because the risks began to outweigh the benefits. The estrogen-only > arm of the study continued, but was also eventually stopped, for the same > reason. > I think it depends upon your individual situation – continue to ask > questions, reading up on it, & then decide if the known risks are worth it > in terms of your symptoms/quality of daily life. > so I started it last week. Then I talked to my >> sister who recently had ovarian cancer. Her Dr told her that under no >> circumstances should she take any kind of HRT, that it increased many >> risks including cancer etc. >> Now I am confused…what have your Dr.s said about Estrogen therapy? >> Thank you! > My doctor used to be *very* pro HRT, so I have to assume he was also pro > ET. > Until the HRT portion of the WHI study was discontinued & the results > published – all of a sudden, the next time I saw him, he wasn’t so pro > anymore! I never asked him about estrogen alone, since it wasn’t > pertinent > to my own situation. > Cathy
Cathy, At least your doctor keeps up on his reading. There are a lot of doctors who just won’t change what they learned in school. Mine doesn’t seem to. Cinkat, I also had a total abdominal hysterectomy/oopherectomy 3 years ago. And was told that I would suffer extreme hot flashes and probably a lot of other symptoms if I didn’t take estrogen. However, my original doctor did suggest only 5 years of estrogen, lowering the dosage gradually to nothing. Then she moved to Oregon six months later. I took estrogen for about a year, religiously for the first few months, then mostly intermittently (because I’d forget or couldn’t be bothered), and finally, not noticing any difference, decided I really didn’t need it. My new doctor (hired and assigned by the clinic to replace mine, not chosen by me) said that most of her patients took estrogen to "keep their memories" and a lot of other "great" things. During my first post-op annual exam, she told me that my v*gina was in great shape, probably because of the estrogen. In fact, everything about my body seemed to be great (exact word she used for my breasts). She suggested that I continue on the estrogen for awhile longer, and wrote me another prescription. But she didn’t nag, because it "isn’t her style." Well, I had already almost entirely tapered off anyway, and stopped entirely by the time the WHI results came out 6 months later. My last visit a year later, my v*gina was still in great shape without the estrogen (she didn’t say anything great about my breasts this time ;-( ). The doctor still insisted on giving me a prescription for half the dosage "just in case" I changed my mind (that’s when she told me about the memory thing). I tossed it. My v*gina’s still in great shape, AFAICT ;-). I don’t have any hot flashes, even though I was warned that I probably would. I get warm now & then, but not any more than I would in 80 degree weather. I’m often tired, but I’ve always had insomnia, so I don’t connect that to lack of estrogen. You may or may not have any severe symptoms with or without estrogen. If I were in your position, I certainly wouldn’t be risking estrogen, not when your sister has already developed ovarian cancer. But I’m not you, so you’ll have to make the decision yourself. I wouldn’t do it for the reasons your doctor told you, however. The symptoms/conditions that your doctor mentioned sound like hooey to me. We’ve been told the following over the years: it’s good for your heart (disproved and may be bad–strokes, heart attacks), good for your bones (yeah, but there’s other stuff one can to take if calcium & exercise don’t work), better for the memory & may help against Alzheimer’s (not only disproved, but apparently may do the opposite), better for younger-looking skin (seems to have some basis in truth, but pitting vanity against health?). And then there’s the cancer issue. But I’ve never heard of hot flashes killing brain cells. I assume your doctor must know that a hot flash is not comparable to a sustained, high fever, and in fact doesn’t seem to raise body temperature at all in most cases. And estrogen keeps the kidneys functioning and healthy? How do his kidneys stay healthy then? He’s not producing a lot of estrogen, I would assume. I have to find another doctor. My suggestion is that you consider it, too. Peahen
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my Dr told me that if you take estrogen you need proestrogen at the same time then he flat out refused to Rx estrogen for me i guess i may as well suck it up and deal with menopause now as opposed to later kinda hard to imagine your mothers 75 yr old friends are now going thru what i’m going thru there are other meds that help with the hot flashes and sleep problems should you run into that trouble good luck! kate "cinkat" <na…@cutterclip.com> wrote in message
news:68a84e8d758ae83ad2ae8af6b501146f@localhost.talkaboutsupport.com… – Hide quoted text — Show quoted text -> Hi I am new here. I have had a long history of fibroids and endometriosis > and had a total hysterectomy last month at 44. My Dr highly recommended > estrogen only (low dose)saying it had almost no down side for women who > started it young and early. so I started it last week. Then I talked to my > sister who recently had ovarian cancer. Her Dr told her that under no > circumstances should she take any kind of HRT, that it increased many > risks including cancer etc. > Now I am confused…what have your Dr.s said about Estrogen therapy? > Thank you!
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Tiger Lily wrote: > my Dr told me that if you take estrogen you need proestrogen at the same > time
That’s if you still have your uterus, IIRC. Priscilla — I pledge allegiance to the Constitution of the United States of America, and to the republic which it established, one nation from many peoples, promising liberty and justice for all.
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"Priscilla H. Ballou" <vze23…@verizon.net> wrote in message news:41ABA857.E59E1239@verizon.net… > Tiger Lily wrote: > > my Dr told me that if you take estrogen you need proestrogen at the same > > time > That’s if you still have your uterus, IIRC.
yes
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"Tiger Lily" <m…@privacy.com> wrote in message
news:311oomF37am7bU1@uni-berlin.de… > "Priscilla H. Ballou" <vze23…@verizon.net> wrote in message > news:41ABA857.E59E1239@verizon.net… > > Tiger Lily wrote: > > > my Dr told me that if you take estrogen you need proestrogen at the same > > > time > > That’s if you still have your uterus, IIRC. > yes
oh….. d’uh!
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"cinkat" <na…@cutterclip.com> wrote in message
news:b4c6e789f34c7b5d731fb989ba01f36e@localhost.talkaboutsupport.com… > I was having hot flashes, but she listed off a whole bunch of things that > she said estrogen helps. I wish I could remember them all, but it was > things like bodily functions, like Kidneys.
IIRC, although breast cancer incidences increase, along w/ heart probs, a certain cancer or two – colon being one of them? – was/were actually less likely when taking HRT, but I don’t know about *this*… In fact, I’m pretty skeptical. >She also siad the hot flashes > were not harmless, that they caused brain cells to die??
Ackkkk!!!!!!! In that case, my brain must be in horrendous shape (worse than I thought!) after almost 7 years of flashing! I’m now very skeptical of what she’s been telling you. Cathy I think…she – Hide quoted text — Show quoted text -> said it all at once so it was hard to remember…I just remember thinking > wow, this is a good thing.
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"Tiger Lily" <m…@privacy.com> wrote in message
news:311mscF36a1qaU1@uni-berlin.de… > my Dr told me that if you take estrogen you need proestrogen at the same > time
If you have a uterus, you do. > then he flat out refused to Rx estrogen for me
A woman with a uterus won’t be prescribed estrogen only. A woman who’s had a hysterectomy, otoh, can be precribed just estrogen. Cathy – Hide quoted text — Show quoted text -> i guess i may as well suck it up and deal with menopause now as opposed to > later > kinda hard to imagine your mothers 75 yr old friends are now going thru what > i’m going thru > there are other meds that help with the hot flashes and sleep problems > should you run into that trouble > good luck! > kate > "cinkat" <na…@cutterclip.com> wrote in message > news:68a84e8d758ae83ad2ae8af6b501146f@localhost.talkaboutsupport.com… > > Hi I am new here. I have had a long history of fibroids and endometriosis > > and had a total hysterectomy last month at 44. My Dr highly recommended > > estrogen only (low dose)saying it had almost no down side for women who > > started it young and early. so I started it last week. Then I talked to my > > sister who recently had ovarian cancer. Her Dr told her that under no > > circumstances should she take any kind of HRT, that it increased many > > risks including cancer etc. > > Now I am confused…what have your Dr.s said about Estrogen therapy? > > Thank you!
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I was having hot flashes, but she listed off a whole bunch of things that she said estrogen helps. I wish I could remember them all, but it was things like bodily functions, like Kidneys. She also siad the hot flashes were not harmless, that they caused brain cells to die?? I think…she said it all at once so it was hard to remember…I just remember thinking wow, this is a good thing.
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My ovaries were removed and I also had a laperoscopy (sp?) to check for any endometriosis at the same time. My Dr. said I could stay on the estrogen for the rest of my life..
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cinkat wrote: > My ovaries were removed and I also had a laperoscopy (sp?) to check for any > endometriosis at the same time. My Dr. said I could stay on the estrogen > for the rest of my life..
It’s good that you had a laparoscopy to check, but it can’t guarantee that no endometriosis remained – there are too many places in your abdomen for the tissue to hide, and it would miss finding very small bits of tissue. Based on what your doctor told you about staying on estrogen, and what you reported her saying in an earlier post about hot flashes causing brain cell death, I’d get another opinion. Or another doctor. Just a suggestion, since you said you had trouble remembering all she told you – ask your doctor if you can tape record your conversations, or take notes, or bring a friend or spouse along with you to take notes. Most of us have difficulty remembering everything a doctor tells us, especially if it’s complicated and filled with medical jargon. HTH – FurPaw — I pledge allegiance to the Constitution of the United States of America, and to the republic which it established, one nation from many peoples, promising liberty and justice for all. Feel free to use the above variant pledge in your own postings. To reply, unleash the dog.
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cinkat wrote: > I was having hot flashes, but she listed off a whole bunch of things that > she said estrogen helps. I wish I could remember them all, but it was > things like bodily functions, like Kidneys. She also siad the hot flashes > were not harmless, that they caused brain cells to die?? I think…she > said it all at once so it was hard to remember…I just remember thinking > wow, this is a good thing.
This sounds really fishy to me. Estrogen helping your kidneys? Hot flashes killing brain cells? I second the suggestion you find a way to write down what this doctor is saying. Estrogen for the rest of your life sounds to me like a Very Bad Idea, given the chance of it causing breast cancer, strokes, etc. Priscilla
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- Hide quoted text — Show quoted text -Chakolate wrote: > "cinkat" <na…@cutterclip.com> wrote in > news:68a84e8d758ae83ad2ae8af6b501146f@localhost.talkaboutsupport.com: >>Hi I am new here. I have had a long history of fibroids and >>endometriosis and had a total hysterectomy last month at 44. My Dr >>highly recommended estrogen only (low dose)saying it had almost no >>down side for women who started it young and early. so I started it >>last week. Then I talked to my sister who recently had ovarian cancer. >>Her Dr told her that under no circumstances should she take any kind >>of HRT, that it increased many risks including cancer etc. >>Now I am confused…what have your Dr.s said about Estrogen therapy? >>Thank you! > Hi, cinkat, welcome to asm. > Were you having any symptoms that required medication? IOW, were your hot > flashes/night sweats making your life miserable? Why did the doctor say > you needed anything? > Your sister’s doctor seems to be more up-to-date than your own. Estrogen > supplementation appears to be dangerous no matter whether it’s opposed by > progesterone or not. The risks must be evaluated along with the benefit of > reduced symptoms, and only you can decide if the risk is reasonable.
The risks of estrogen are much greater for anyone who has had reproductive cancer (cinkat’s sister) than for "the average woman." Your (Cinkat) risks for endometrial cancer were eliminated with the hysterctomy. AFAIK, you share the same risks for breast cancer and ovarian cancer (or were your ovaries also removed? Is that what you mean by "total?") as "the average woman," maybe greater risks if there is a genetic component in your sister’s ovarian cancer. And these risks are higher with estrogen therapy than without it. Another downside is that when you eventually go off it, you will likely go through withdrawal (some of these: hot flashes, night sweats, mood swings, etc.) at that time anyhow. And another one is that estrogen can stimulate the growth of endometriosis tissue, if any was left behind. But if you’re miserable because of the sudden loss of estrogen – it’s one of those dilemmas where you have to evaluate the risks against the benefits. Welcome to asm! FurPaw — I pledge allegiance to the Constitution of the United States of America, and to the republic which it established, one nation from many peoples, promising liberty and justice for all. Feel free to use the above variant pledge in your own postings. To reply, unleash the dog.
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Hi I am new here. I have had a long history of fibroids and endometriosis and had a total hysterectomy last month at 44. My Dr highly recommended estrogen only (low dose)saying it had almost no down side for women who started it young and early. so I started it last week. Then I talked to my sister who recently had ovarian cancer. Her Dr told her that under no circumstances should she take any kind of HRT, that it increased many risks including cancer etc. Now I am confused…what have your Dr.s said about Estrogen therapy? Thank you!
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"cinkat" <na…@cutterclip.com> wrote in news:68a84e8d758ae83ad2ae8af6b501146f@localhost.talkaboutsupport.com: > Hi I am new here. I have had a long history of fibroids and > endometriosis and had a total hysterectomy last month at 44. My Dr > highly recommended estrogen only (low dose)saying it had almost no > down side for women who started it young and early. so I started it > last week. Then I talked to my sister who recently had ovarian cancer. > Her Dr told her that under no circumstances should she take any kind > of HRT, that it increased many risks including cancer etc. > Now I am confused…what have your Dr.s said about Estrogen therapy? > Thank you!
Hi, cinkat, welcome to asm. Were you having any symptoms that required medication? IOW, were your hot flashes/night sweats making your life miserable? Why did the doctor say you needed anything? Your sister’s doctor seems to be more up-to-date than your own. Estrogen supplementation appears to be dangerous no matter whether it’s opposed by progesterone or not. The risks must be evaluated along with the benefit of reduced symptoms, and only you can decide if the risk is reasonable. Chakolate — Progress isn’t made by early risers. It’s made by lazy men trying to find easier ways to do something. –Robert Heinlein
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"cinkat" <na…@cutterclip.com> wrote in message
news:68a84e8d758ae83ad2ae8af6b501146f@localhost.talkaboutsupport.com… > Hi I am new here. I have had a long history of fibroids and endometriosis > and had a total hysterectomy last month at 44. My Dr highly recommended > estrogen only (low dose)saying it had almost no down side for women who > started it young and early.
Ask him/her exactly what s/he means by "almost" no side effects. There were large studies going on in which both HRT (for women with a uterus) & ET only (for women sans a uterus) were being given. The HRT portion was halted early because the risks began to outweigh the benefits. The estrogen-only arm of the study continued, but was also eventually stopped, for the same reason. I think it depends upon your individual situation – continue to ask questions, reading up on it, & then decide if the known risks are worth it in terms of your symptoms/quality of daily life. so I started it last week. Then I talked to my > sister who recently had ovarian cancer. Her Dr told her that under no > circumstances should she take any kind of HRT, that it increased many > risks including cancer etc. > Now I am confused…what have your Dr.s said about Estrogen therapy? > Thank you!
My doctor used to be *very* pro HRT, so I have to assume he was also pro ET. Until the HRT portion of the WHI study was discontinued & the results published – all of a sudden, the next time I saw him, he wasn’t so pro anymore! I never asked him about estrogen alone, since it wasn’t pertinent to my own situation. Cathy – Hide quoted text — Show quoted text –
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Question:
lynek…@yahoo.ca (Lynekenn) wrote in news:f79ee42e.0411201003.5293cf9b@posting.google.com: > "sue and dave" <sdhbm…@prexar.com> wrote in message >> those clots have not been unknown to many of us. Called Dinner >> Plate Clots, Chicken Liver Clots, VW clots ( seemingly the size of a >> VW Beetle). They exacerbate the whole bleed issue because they are >> not absorbed by tampons or sanitary napkins. I fault them heavily >> for ruining a lot of work clothes and a lot of jammies and a ton of >> sheets…. and lets not go to the issue of pain and cramping trying >> to pass them!!!!!! > Try shaving cream to remove blood stains. > I get nose bleeds in winter and heavy menstral bleeding, sometimes > I wonder how I could have any left. > The shaving cream works well even on old stains. > Lynne
And on a mattress you can use a baby wipe, although it won’t do much on old stains. Chakolate — Yes, we have to divide up our time like that, between our politics and our equations. But to me our equations are far more important, for politics are only a matter of present concern. A mathematical equation stands forever. –Albert Einstein
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On 20 Nov 2004 10:03:36 -0800, lynek…@yahoo.ca (Lynekenn) wrote: >"sue and dave" <sdhbm…@prexar.com> wrote in message >> those clots have not been unknown to many of us. Called Dinner Plate >> Clots, Chicken Liver Clots, VW clots ( seemingly the size of a VW Beetle). >> They exacerbate the whole bleed issue because they are not absorbed by >> tampons or sanitary napkins. I fault them heavily for ruining a lot of work >> clothes and a lot of jammies and a ton of sheets…. and lets not go to the >> issue of pain and cramping trying to pass them!!!!!! >Try shaving cream to remove blood stains.
You mean the spray sort? That’s a wonderful tip… thank you!
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"Louise Bremner" <dame_zum…@yahoo.com> wrote in message
news:1gnhtnu.gz7ngjopqdcN%dame_zumari@yahoo.com… – Hide quoted text — Show quoted text -> Cathy Friedmann <c…@adelphia.net> wrote: > > "Ensoul100" <ensoul…@aol.com> wrote in message > > news:20041118154131.00362.00000814@mb-m17.aol.com… > > > I’m 46 > > <snipped> > > > how long does periomenopause usally last?? had someone tell me the > > average is > > > 10 yrs!!!! Yikes > > Maybe, maybe not. Mine lasted about 7 years. Others’ are shorter, others’ > > are longer. It’s a very individual thing, & doesn’t appear to be > > predictable. (IMO, it *should* last, oh… about a year! Two, tops!) > Heh… It should be instant-off, the way I was led to believe all those > years ago.
In some ways that appeals, but in others I think I’d need time to get used to the idea. For example, telling time relative to when was last period, that sort of thing. (I never really minded periods themselves, only the cramps that went with them.) However, I definitely think that horrible cramps, lower backache, zits, sore boobs, sore muscles/joints, clots, floods, etc., etc. should *not* figure into the deal! Just periods spaced out a bit more, &/or getting lighter & lighter, flow-wise. Yeah… that would’ve been my idea of a decent peri. (Oh, & omit night sweats & hot flashes for the women who have those in peri.) Cathy
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"Lynekenn" wrote – Hide quoted text — Show quoted text -> "sue and dave" <sdhbm…@prexar.com> wrote in message > > those clots have not been unknown to many of us. Called Dinner Plate > > Clots, Chicken Liver Clots, VW clots ( seemingly the size of a VW Beetle). > > They exacerbate the whole bleed issue because they are not absorbed by > > tampons or sanitary napkins. I fault them heavily for ruining a lot of work > > clothes and a lot of jammies and a ton of sheets…. and lets not go to the > > issue of pain and cramping trying to pass them!!!!!! > Try shaving cream to remove blood stains. > I get nose bleeds in winter and heavy menstral bleeding, sometimes > I wonder how I could have any left. > The shaving cream works well even on old stains. > Lynne
Thanks Lynne 
~ a little late for me but folk, perhaps but OTHER FOLK will bless you if you post this OFTEN! Sue Western Maine no more floods here
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"sue and dave" <sdhbm…@prexar.com> wrote in message > those clots have not been unknown to many of us. Called Dinner Plate > Clots, Chicken Liver Clots, VW clots ( seemingly the size of a VW Beetle). > They exacerbate the whole bleed issue because they are not absorbed by > tampons or sanitary napkins. I fault them heavily for ruining a lot of work > clothes and a lot of jammies and a ton of sheets…. and lets not go to the > issue of pain and cramping trying to pass them!!!!!!
Try shaving cream to remove blood stains. I get nose bleeds in winter and heavy menstral bleeding, sometimes I wonder how I could have any left. The shaving cream works well even on old stains. Lynne
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"Ensoul100" <ensoul…@aol.com> wrote in message
news:20041118221003.07145.00000764@mb-m10.aol.com… > wow, thank for the replies
You ARE welcome! > you’ve made me very welcome
Glad you got that part! > some you asked what surgery for my endo and heavy periods > Uterine Balloon Therapy System > endometrial ablation
Yannose, Ensoul, I asked about this in 1997 and tried to get a referral from my totally nincompoop NP ( at the time) for endometrial ablation. It WAS being offered within my crapola PPO, by a covered practitioner, but she was resistant because I hadn’t been under her care long enough. I did not have the endometriosis, but I sure had the floods and the clots and would lose a couple days every month just from the need to be near hygiene facilities on a minute by minute basis. > will discuss new ob/gyn whats best for me > like I said always had heavy periods w/clots…last period scared me had a clot > the size of a woman’s fist…called my Dr she said if it happens again,
then call me! those clots have not been unknown to many of us. Called Dinner Plate Clots, Chicken Liver Clots, VW clots ( seemingly the size of a VW Beetle). They exacerbate the whole bleed issue because they are not absorbed by tampons or sanitary napkins. I fault them heavily for ruining a lot of work clothes and a lot of jammies and a ton of sheets…. and lets not go to the issue of pain and cramping trying to pass them!!!!!! > and they have been heavy to cause anemnia
Anemia only makes you feel worse and in itself needs treatment. > I won’t hyster, I refuse…yes its right for some women but this woman > had 3 on/gyn’s as a frist like of trmnt for endo, say…you’re done having kids > just have a hyster. like i’m getting stiches! > held my tongue, but wanted you’re done having kids, why not just have ball cut > off > thats what get for living in a rural area w/only 3 ob/gyn’s in town
I wondered if you had been given the Hyster Sister choice, thought you might have heard that … I applaud you for hanging in there and not making irreversible choices.. My sis had sufficient <other> health issues that led her to Hyst. Suffice to say she IS happy with her choice at this point, and thats the result that counts. > the gyn and he does only gyn no ob is at large teaching hosp…so here’s hoping > again…thank you all > ensoul > PS..my syptoms of perimenpause are night sweat and night chills that make me > break out in cold sweat…still have my period every month
Well…. when you wake up in the wee hours drenched with sweat and freezing because you’ve thrown the covers off and now all that sweat is evaporating, just dont’ feel "alone" OK?? You AREN"T alone. Just ask my dog .. she gets the rude boot off the bed so I can move to her warm DRY spot. <wink> Sue Western Maine – Hide quoted text — Show quoted text -> When will our consciences grow so tender that we will act to prevent human > misery rather than avenge it? > ~Eleanor Roosevelt
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- Hide quoted text — Show quoted text -Marilee wrote: > "None Given" <nonegi…@invalid.invalid> wrote in message > news:306mdqF2t8hduU1@uni-berlin.de… >>Ensoul100 wrote: >> > some you asked what surgery for my endo and heavy periods >>>Uterine Balloon Therapy System >>> endometrial ablation >>I thought you had to get the laser through your bellybutton for endo >>(can’t remember the name of the surgery my friend had,) because of the >>tissue in the abdominal cavity causing most of the problems. > laparoscopy?
That’s the one.
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- Hide quoted text — Show quoted text -Louise Bremner wrote: > Cathy Friedmann <c…@adelphia.net> wrote: > > "Ensoul100" <ensoul…@aol.com> wrote in message > > news:20041118154131.00362.00000814@mb-m17.aol.com… > > > I’m 46 > > <snipped> > > > how long does periomenopause usally last?? had someone tell me the > > average is > > > 10 yrs!!!! Yikes > > Maybe, maybe not. Mine lasted about 7 years. Others’ are shorter, others’ > > are longer. It’s a very individual thing, & doesn’t appear to be > > predictable. (IMO, it *should* last, oh… about a year! Two, tops!) > Heh… It should be instant-off, the way I was led to believe all those > years ago.
Yeah. On "All in the Family" there was one episode devoted to Edith’s "change" IIRC. Priscilla
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Ensoul100 wrote:
> some you asked what surgery for my endo and heavy periods > Uterine Balloon Therapy System > endometrial ablation
I thought you had to get the laser through your bellybutton for endo (can’t remember the name of the surgery my friend had,) because of the tissue in the abdominal cavity causing most of the problems.
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"None Given" <nonegi…@invalid.invalid> wrote in message
news:306mdqF2t8hduU1@uni-berlin.de… > Ensoul100 wrote: > > some you asked what surgery for my endo and heavy periods > > Uterine Balloon Therapy System > > endometrial ablation > I thought you had to get the laser through your bellybutton for endo > (can’t remember the name of the surgery my friend had,) because of the > tissue in the abdominal cavity causing most of the problems.
laparoscopy? Marilee
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wow, thank for the replies you’ve made me very welcome some you asked what surgery for my endo and heavy periods Uterine Balloon Therapy System endometrial ablation will discuss new ob/gyn whats best for me like I said always had heavy periods w/clots…last period scared me had a clot the size of a woman’s fist…called my Dr she said if it happens again, then call me! and they have been heavy to cause anemnia I won’t hyster, I refuse…yes its right for some women but this woman had 3 on/gyn’s as a frist like of trmnt for endo, say…you’re done having kids just have a hyster. like i’m getting stiches! held my tongue, but wanted you’re done having kids, why not just have ball cut off thats what get for living in a rural area w/only 3 ob/gyn’s in town the gyn and he does only gyn no ob is at large teaching hosp…so here’s hoping again…thank you all ensoul PS..my syptoms of perimenpause are night sweat and night chills that make me break out in cold sweat…still have my period every month When will our consciences grow so tender that we will act to prevent human misery rather than avenge it? ~Eleanor Roosevelt
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Cathy Friedmann <c…@adelphia.net> wrote: > "Ensoul100" <ensoul…@aol.com> wrote in message > news:20041118154131.00362.00000814@mb-m17.aol.com… > > I’m 46 > <snipped> > > how long does periomenopause usally last?? had someone tell me the > average is > > 10 yrs!!!! Yikes > Maybe, maybe not. Mine lasted about 7 years. Others’ are shorter, others’ > are longer. It’s a very individual thing, & doesn’t appear to be > predictable. (IMO, it *should* last, oh… about a year! Two, tops!)
Heh… It should be instant-off, the way I was led to believe all those years ago. ________________________________________________________________________ Louise Bremner (log at gol dot com) If you want a reply by e-mail, don’t write to my Yahoo address!
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"Ensoul100" <ensoul…@aol.com> wrote in message
news:20041118154131.00362.00000814@mb-m17.aol.com… > I’m 46 <snipped> > how long does periomenopause usally last?? had someone tell me the average is > 10 yrs!!!! Yikes
Maybe, maybe not. Mine lasted about 7 years. Others’ are shorter, others’ are longer. It’s a very individual thing, & doesn’t appear to be predictable. (IMO, it *should* last, oh… about a year! Two, tops!) Cathy – Hide quoted text — Show quoted text -> I’m a newbie, jumped right : ) > ensoul > When will our consciences grow so tender that we will act to prevent human > misery rather than avenge it? > ~Eleanor Roosevelt
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"Ensoul100" <ensoul…@aol.com> wrote in message
news:20041118154131.00362.00000814@mb-m17.aol.com… > I’m 46
Ditto > my periods have irregular since I started it at age 12
I started a bit later than you, but yes, irregular since day one – till about 2 years ago. > also heavy periods is the norm for me, since I endometriosis
for me it’s been PCOD – so mine have always been light – till about 2 years ago. > my nurse practioner told me I’m in perimenopause cuz I have night sweats & > chills
yeah, me too. No real "hot flashes" – except that sometimes my face gets hot for no reason, but that’s the only part of me that heats up. (rest of me tends to be a bit on the cool side) > she wouldnt prescribe anything so I went over the counter, am taking Spring > Vallery menopause complex > the indgred. are: black cohosh, green tea extract, panaz ginseng, Valerian > extract, Hops extract, L-Theanine
Some folks find these help, some find they make things worse. Some find they don’t make any difference at all. We’re all different there. > my mom and sister both hysterectomy’s, no other female relatives on my Mom’s > side
one thing we’re kind of agreed on here – your mother’s experience might not be yours. > how long does periomenopause usally last?? had someone tell me the average is > 10 yrs!!!! Yikes
When you think how long puberty goes on for in total, is it so strange to think it might take the same length of time – or maybe a bit longer – at the other end? — Jette Goldie je…@blueyonder.co.uk "If you don’t care where you are, then you aren’t lost" http://www.jette.pwp.blueyonder.co.uk/
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"Ensoul100" wrote > I’m 46 > my periods have irregular since I started it at age 12 > also heavy periods is the norm for me, since I endometriosis
Welcome Ensoul. Bless you for all those years of endometriosis, my sister had it and had hyst several years ago. > I’m debating on having outpatient surgery for the heavy bleeding
What kind?? endometrial ablation?, D&C, hyst or other? > I don’t have an ob/gyn right now, having my family dr. doing a referal for me > to a dr that specializes the trmnt of endo
My best wishes to you for relief. > my nurse practioner told me I’m in perimenopause cuz I have night sweats & > chills > she wouldnt prescribe anything so I went over the counter, am taking Spring > Vallery menopause complex > the indgred. are: black cohosh, green tea extract, panaz ginseng, Valerian > extract, Hops extract, L-Theanine > theres an am dose & pm dose
This sounds soothing, is it helping you? > my mom and sister both hysterectomy’s, no other female relatives on my Mom’s > side > how long does periomenopause usally last?? had someone tell me the average is > 10 yrs!!!! Yikes
A 46 I was in the home stretch, just another couple of years, but others here have not been so fortunate. I’m 52 today and have been period free for over 3 years. It is a blessed thing! > I’m a newbie, jumped right : )
Glad you did jump in! Welcome to ASM! > ensoul > When will our consciences grow so tender that we will act to prevent human > misery rather than avenge it? > ~Eleanor Roosevelt
I like your sig, ensoul. Sue Western Maine – Hide quoted text — Show quoted text –
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I’m 46 my periods have irregular since I started it at age 12 also heavy periods is the norm for me, since I endometriosis I’m debating on having outpatient surgery for the heavy bleeding I don’t have an ob/gyn right now, having my family dr. doing a referal for me to a dr that specializes the trmnt of endo my nurse practioner told me I’m in perimenopause cuz I have night sweats & chills she wouldnt prescribe anything so I went over the counter, am taking Spring Vallery menopause complex the indgred. are: black cohosh, green tea extract, panaz ginseng, Valerian extract, Hops extract, L-Theanine theres an am dose & pm dose my mom and sister both hysterectomy’s, no other female relatives on my Mom’s side how long does periomenopause usally last?? had someone tell me the average is 10 yrs!!!! Yikes I’m a newbie, jumped right : ) ensoul When will our consciences grow so tender that we will act to prevent human misery rather than avenge it? ~Eleanor Roosevelt
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ensoul…@aol.com (Ensoul100) wrote in news:20041118154131.00362.00000814@mb-m17.aol.com: > I’m 46 > my periods have irregular since I started it at age 12 > also heavy periods is the norm for me, since I endometriosis > I’m debating on having outpatient surgery for the heavy bleeding
May I ask what sort of surgery? > I don’t have an ob/gyn right now, having my family dr. doing a referal > for me to a dr that specializes the trmnt of endo > my nurse practioner told me I’m in perimenopause cuz I have night > sweats & chills > she wouldnt prescribe anything so I went over the counter, am taking > Spring Vallery menopause complex > the indgred. are: black cohosh, green tea extract, panaz ginseng, > Valerian extract, Hops extract, L-Theanine
Be cautious. If that preparation helps you, great. But some of the ingredients are known to make perimenopause symptoms worse. Responses to any attempt to fidget with hormones are highly individual. > how long does periomenopause usally last?? had someone tell me the > average is 10 yrs!!!! Yikes
I doubt that the *average* is 10 years, but it certainly can last that long. Perimenopause is such a different experience for everyone that it would be hard to find two women who have exactly the same symptoms with the same severity and duration. The good news is that you can almost always cope with whatever peri throws at you, and if you’d like to tell us which symptoms bother you the most, we’ll try to help with coping suggestions. > I’m a newbie, jumped right : )
We like that. > When will our consciences grow so tender that we will act to prevent > human misery rather than avenge it? > ~Eleanor Roosevelt
Nice quote. Welcome to asm! Chakolate — Yes, we have to divide up our time like that, between our politics and our equations. But to me our equations are far more important, for politics are only a matter of present concern. A mathematical equation stands forever. –Albert Einstein
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