Would like to share article about Endometriosis leading to CFS?FI

Discussion in 'Fibromyalgia Main Forum' started by Shireen, Aug 25, 2002.

  1. Shireen

    Shireen New Member

    Hi, I'm new at this message board stuff. I was just curious to see how many of you women have been dealing with Endometriosis and any of you who have had a Hysterectomy due to that? I was finally dx with endo after the Hyster. It took me 8 months to get preg with my last child. He is now 22 mo. I had the Hyster when he was 3 months old. The findings were that my uterus was full of endo. I had gone to Dr.'s for years with painful periods, symptoms of Endo and never any suggestions from Dr.'s that it might endo. Not even a laporoscopy!!!!!!The military for you. Can't spend any money on spouse problems. Now I find this article in I think Women's Day saying that Endo causes the development of Autoimmune Diseases such as MS, hypothyroidism, CFS, and Fibro. i could not believe it. I can't believe Dr.'s don't have a clue and let me go so long. I have been trying to get dx for a few years now. I have just been told I need to go to a Reumetologist. So now I can't get in til Dec. 3rd. How frustrating. I have the worst insomnia and can't get the Dr's where I live to give me anything that helps me sleep. Anyway maybe I'll finally get diag. in Dec. Thanks for listening. sorry this is so long. i just love this site. Too bad the chat rooms have been down. Thanks All!!!
    Shireen
  2. Shireen

    Shireen New Member

    Hi, I'm new at this message board stuff. I was just curious to see how many of you women have been dealing with Endometriosis and any of you who have had a Hysterectomy due to that? I was finally dx with endo after the Hyster. It took me 8 months to get preg with my last child. He is now 22 mo. I had the Hyster when he was 3 months old. The findings were that my uterus was full of endo. I had gone to Dr.'s for years with painful periods, symptoms of Endo and never any suggestions from Dr.'s that it might endo. Not even a laporoscopy!!!!!!The military for you. Can't spend any money on spouse problems. Now I find this article in I think Women's Day saying that Endo causes the development of Autoimmune Diseases such as MS, hypothyroidism, CFS, and Fibro. i could not believe it. I can't believe Dr.'s don't have a clue and let me go so long. I have been trying to get dx for a few years now. I have just been told I need to go to a Reumetologist. So now I can't get in til Dec. 3rd. How frustrating. I have the worst insomnia and can't get the Dr's where I live to give me anything that helps me sleep. Anyway maybe I'll finally get diag. in Dec. Thanks for listening. sorry this is so long. i just love this site. Too bad the chat rooms have been down. Thanks All!!!
    Shireen
  3. MicheleF

    MicheleF New Member

    We were just discussing this article a few days ago. Type in "endometriosis" at the top in search messages. I reprinted an article on a study (probably same one) and we had quite the discussion!

    So sorry you're having these problems...many here go thru years before they get help. Dec. is a long time to wait...don't know if you're bound to particular drs (is your spouse still in military?) but the doctor referral on home and library pages here give some great tips on getting ready for your appt. and also a link to the co-cure.org site, which is a list of cfids/fms drs from all over the world. If you don't find one there, & you want to try to get in sooner, post here w/ your state & ask members if they know of anyone in your area.

    You didn't mention your symptoms--also on home page is info on both cfids and fms symptoms & diagnosis criteria.

    Best wishes. Michele
  4. ohmyaching

    ohmyaching New Member

    Thanks for the info about the magazine. I'll definitely go to the library and look up that article. I have had end stage endometriosis and am in sugical menopause. I joined the Endometriosis Assoc. when I learned that I had endo. At that time the Endometriosis Assoc. completely changed it's outlook about endometriosis and started treating the illness as an autoimune disease.
    As a matter of fact I have early research for CFS that lists endometriosis as a symptom. Why they no longer list endometriosis as a symptom is a good question. The CFIDS Chronicle, published by the CFIDS Assoc. has printed reports stating that people with CFS have a greater incidence of endometriosis than that found in the general public.
    The Endometriosis Assoc. has developed a program for treating endometriosis as an autoimmune disease which involves the following:
    1.Treat for allergies-desensitization to allergens.
    2.Treat for candida
    3.Treat hormone imbalance
    If you are interested in obtaining information on this treatment then I recommend you get a copy of the Endometriosis Association’s Newsletter vol.17, nos. 2and 3, 1996. It is a two part series entitled "Endometriosis and Candida Albicans: Even More Startling Connections."
    I have these articles and I highly recommend them. Much of the treatment they recommend is also suggested treatment for CFS and FM. Unless you are a member of the Endometriosis Assoc. you cannot access this information on their website, but you can purchase these newsletters from there. ( they were about $2 each)
    These treatments have been used with much success by the members of the Endometriosis Assoc. to stop the pain and growth of this disease. I don't think it's a cure, but more of a maintenence program.
    You are right about doctors not having a clue, but it's not all the doctors fault; our medical society has chosen to ignore these illneses. We have to keep making a loud enough noise so that maybe they'll finally take notice. I'm starting to sound like a recording. I keep repeating this information, but I hope it'll help someone.
    [This Message was Edited on 08/26/2002]
  5. RedEye

    RedEye New Member

    Amazing. I have endo, did the massive Candida diet after having a scratch test that showed I was full of the yeast, and I have CFS, plus severe allegies. Thanks so much for the info I can't wait to read about it!
  6. Shireen

    Shireen New Member

    Thanks so much for taking the time to give me the information you did. I now realize that this has been discussed already. Sorry. When you are new you aren't sure what has been gone over lately. I do appreciate any info. Have a great day!
    Thanks,
    Shireen
  7. Shirl

    Shirl New Member

    Wanted to welcome you to the board Shireen, like your name, its pretty!

    Shalom, Shirl
  8. Shireen

    Shireen New Member

    I forgot to tell you, it was my ex-husband that was a Marine. I am bound to certain Dr.'s through my current ins. and there are limited specilists in the area I live, so I will have to weight. I do have to say as far as the Endo. The Hysterectomy was long in recovering for me and now I'm wondering if it is CFS/Fibro related like suggested. It was the best thing I could have done for those symptoms. My main symptoms are: Major Insomnia, body aches and pains nausea, vomiting, low grade fever most all the time99-100, headaches, hands and feet swell, problems with feeling flu like all the time especially when the Barometric pressure changes hot/cold cold/hot, restless sleep, never feel rested when I get up. Only get about 3-4 hrs of sleep a night, frequent urination, dry mouth, dizzy, hard to concentrate- can't read books like I used to, colds and sore throats just hang on forever, any way those are some. Fun huh?! NOT!!!!!!! This has been going on for over 10 yrs undiagnosed.
    Shireen
  9. Shireen

    Shireen New Member

    Thanks so much for the info and for taking the time too respond. Even though it took me about a year to recover from the Hysterectomy, it has been the best thing I could have done as far as the monthly problems went. I had never heard about the association between CFS/Fibro and Endo. It just totally sounds like me and what I have been going through for years. keep in touch.
    Thanks,
    Shireen
  10. Shireen

    Shireen New Member

    Hi! Had you ever heard about endo being related to CFS/Fibro? I just couldn't believe it when I read the article. it was a short article, but I am taking the article to the Rheummy I can't get into see until Dec. 3rd.
    I will hopefully finally be DX after more than 10yrs.
    i hope you keep in touch. It took me a while to recover from the Hyster, but I'm so glad I did it.
    Shireen
  11. Shireen

    Shireen New Member

    Thank you for the welcome and the compliment on my name. I hated it as a kid but get a lot of compliments on it as an adult. I guess it is unique in the states. I have only met one other girl with the same spelling when I lived in CA many yrs ago.
    thanks again!
    Shireen
  12. MicheleF

    MicheleF New Member

    Never feel sorry for writing about anything on this board! I was just letting you know so you could check out other people's comments who might not reply to this one, and to see if it was the same study (which it was, wasn't it?). I actually found it reprinted or rewritten in several places, and wish more ob/gyn's would start sharing this info w/ their patients after doing a short eval. All it takes is one of two questions -- are you having any non ob/gyn problems, and then take it from there to refer patient to a rheumy or other dr to dx & help treat the problem, whatever it is.

    I think I will ask my ob/gyn if I can leave the patient guides (1st post at the top of the page) in his office--maybe it will help someone there.

    Thanks again for sharing your story, glad the hysterectomy brought relief. Best wishes. Michele
  13. EllenComstock

    EllenComstock New Member

    Hi, Shireen:

    Your situation is similar to mine except the endo made me infertile and I am trying not to have a hysterectomy. I understand your frustrations with doctors. I had to diagnose myself through research with both the endo and now the fibromyalgia. I was officially diagnosed with endo a little over two years ago and just recently with the fibromyalgia. Doctors are not always very helpful I have found, even someone who is supposed to be a specialist. The endo specialist I found through the Endometriosis Association kept pushing me to have a hysterectomy. I kept telling him I was having pain in places that just didn't fit the endo. Finally, in my research I found that women with endo are at a higher risk of developing other diseases such as fibro and chronic fatigue syndrome. When I mentioned this to him, he said he didn't know anything about it! I realize he can't be a specialist in everything, but he should have been aware of this risk and sent me to a fibro specialist. I could have gone through with the hysterectomy and still been in pain! Well, I started more research on the fibro and through the internet found a specialist about 45 minutes from my home. I understand there aren't too many of them, so I was thankful to find someone not too far away and easy to get to.

    I am currently undergoing massage therapy twice a week with his office. He first ruled out there weren't any other problems first by giving me two nerve tests. When those came back negative, he concluded that it must be the fibro since I fit all the criteria. Too bad there isn't a test for fibro-just a matter of ruling out other things. Anyway, the gentle massage is helping some and I am having some nights where I sleep better. They have shown me some stretching exercises to do at home and have given me lots of advice of how to make myself as comfortable as possible. For sleep I am on melatonin (a natural substance in the brain that helps induce sleep), plus Elavil 10 mg. The first two weeks of taking Elavil I felt really groggy in the morning, but then that went away. I have heard this is a common temporary side affect.

    I think at this point I am having more pain and problems with the fibro than with the endo. I have had three laparascopies, the last being over a year ago. I try to rest as much as possible (I work full-time), eat well and exercise four to five times a week. It's really hard some days, but I know I am better for it.

    Of course I still have my bad days, but even getting two or three good nights of sleep out of seven is better than what I had before. Anyway, hope this was of some help to you.

    Ellen Comstock
  14. EllenComstock

    EllenComstock New Member

    Hi, Shireen:

    Your situation is similar to mine except the endo made me infertile and I am trying not to have a hysterectomy. I understand your frustrations with doctors. I had to diagnose myself through research with both the endo and now the fibromyalgia. I was officially diagnosed with endo a little over two years ago and just recently with the fibromyalgia. Doctors are not always very helpful I have found, even someone who is supposed to be a specialist. The endo specialist I found through the Endometriosis Association kept pushing me to have a hysterectomy. I kept telling him I was having pain in places that just didn't fit the endo. Finally, in my research I found that women with endo are at a higher risk of developing other diseases such as fibro and chronic fatigue syndrome. When I mentioned this to him, he said he didn't know anything about it! I realize he can't be a specialist in everything, but he should have been aware of this risk and sent me to a fibro specialist. I could have gone through with the hysterectomy and still been in pain! Well, I started more research on the fibro and through the internet found a specialist about 45 minutes from my home. I understand there aren't too many of them, so I was thankful to find someone not too far away and easy to get to.

    I am currently undergoing massage therapy twice a week with his office. He first ruled out there weren't any other problems first by giving me two nerve tests. When those came back negative, he concluded that it must be the fibro since I fit all the criteria. Too bad there isn't a test for fibro-just a matter of ruling out other things. Anyway, the gentle massage is helping some and I am having some nights where I sleep better. They have shown me some stretching exercises to do at home and have given me lots of advice of how to make myself as comfortable as possible. For sleep I am on melatonin (a natural substance in the brain that helps induce sleep), plus Elavil 10 mg. The first two weeks of taking Elavil I felt really groggy in the morning, but then that went away. I have heard this is a common temporary side affect.

    I think at this point I am having more pain and problems with the fibro than with the endo. I have had three laparascopies, the last being over a year ago. I try to rest as much as possible (I work full-time), eat well and exercise four to five times a week. It's really hard some days, but I know I am better for it.

    Of course I still have my bad days, but even getting two or three good nights of sleep out of seven is better than what I had before. Anyway, hope this was of some help to you.

    Ellen Comstock
  15. Betty50victor

    Betty50victor New Member

    WOW!!! That's very interesting.... I was diagnosed with endo about 15 yrs ago. I told them to just get rid of uterus and overies and clean house to get all the endo out since I wasn't gonna have another child. No more pain inside TIL about 2 yrs ago. I've had ultrasounds and the docs hand checking me out about 10 times since then because I hurt/ache up inside again and in the lower back so bad that it feels like a knife up there trying to cut my insides up! Can't have intercourse anymore. The docs tryed to do sygmostopy but can't even go up "there" either cause of the terrible pain. Just like painful periods I used to have.I've even told many docs. that I have been having blood and puss (inside) my stools along with on the outside of stool. I've read that fibro does cause pain up in the vagina but I'm really scared that along with the fibro something is seriously wrong in my intestines!! Kaiser is taking about 4 months to schedule a colonauscopy which they put you out for, thank god cause I can't take the pain, which would be some time in Sept. The bad part is that I am no longer working, haven't gotten anything from disability yet, stopped working 7-19, and my insurance expires the end of this month. So...... now I don't know what I'll do now. I just hope it isn't cancer along w/fibro. Stomach cancer's in my family.
    Well, sorry for rambleing on...... But, just really need some feed back from you all.
    "Lost in Valencia, CA."
  16. fibrokimm

    fibrokimm New Member

    Shireen,

    I too had endo for years, surgury 2tx then a total hyster which resulted in full blown fm/cfs. Please tell me, if you can where I can find this article (month/year) of magazine.

    This information has just helped me with another piece of my fm/cfs puzzle. Any further info on this topic would be greatly appreciated.

    Blessings,
    fibrokimm