Endometriosis and FMS

Discussion in 'Fibromyalgia Main Forum' started by didofan, Feb 17, 2005.

  1. didofan

    didofan New Member

    I just found out that I have endometriosis a few weeks ago. I had a large complex cyst that needed to be removed and the found the endometriosis. They cleaned me out as well as they could, but they are not sure they got it all.

    I am wondering if anyone else out there has endometriosis? I have had a lot of pelvic pain over the years, and I'm wondering if there are treatments, or therapies that could help? Is there anything else I need to know?

    Thanks for any help.

    DF
  2. smutsmum

    smutsmum New Member

    Hi, I have endo and have just been told I may have CFS. Am in cluding a link to an endo site which is fab. Hope it helps.

    http://www.endo.org.uk/
  3. larayne

    larayne New Member

    I won't go into all the details but I was to the doctor Tues for a b/p check. She had seen me in Dec. and ordered some tests for a problem I was experiencing and I had pap tests and Ultra Sound internal and external. She advised me to see a GYN and made an appointment for me. I went to the appointment but she wasn't in. So I made another appointment and it isn't until March. My doc asked why she didn't get a report and I told her about this and said I am not having any more problems so I don't think I need to see her. She then showed me the report. I have Abnormal Thickening of the Endometrium with fluid and debris present in the endometrial cavity Findings secondary to Endometrial Hyperplasia. Neoplasia cannot be excluded. Stated I must see the doc in March so I will but I don't know if it is brought on bt FM She said not. I just copied it off the repoet. She said it is to rule out cancer. Lara
  4. victoria

    victoria New Member

    I was dx'd 23 years ago, used to have "rolling on the floor" type pain, very extreme.

    The only rx I ever did was bc pills for 6 months. During that time I researched alternatives as I didn't want to take any heavier duty hormones that are the normal treatments.

    I did the candida diet very strictly and took nystatin -- no more cramps! And I was finally able to get pg! I did do a "challenge" after being strict for 3 months with food, found that as soon as I ate cheese or wine or yeasted bread (all used to be daily staples of my diet), the cramping would start within a few hours.

    I joined the Endometriosis Association; they have found on polls of memebers that as far as symptom control, the candida diet works the best. I also knew someone who had it even in her thighs, could only walk with crutches; when she went on candida diet, she could walk again with no pain.

    All I can say is that, even tho I had another laparoscopy 10 yrs ago for an ovarian cycst, at which time I was also lasered for still "severe endo", my organs are still moveable, and no pain, as long as I'm careful with food. . .

    I can get away with "cheating" a bit now that I'm in menopause, but still have to be careful. There are some women who never had symptoms til way after menopause, then had pain and were dx'd with a laparoscopy.

    The Endo Assoc did a poll of their members and found 80% had CFS/FM; not surprising, I've been dealing with CFIDS since I was 18 (now 53). They also found PCB was linked with endometriosis.

    It would be good for you to join the Endo Association and get their newsletter etc., the $$ goes for research and support -- they are non-profit.

    Hope this helps,
    Victoria
  5. didofan

    didofan New Member

    Thank you all for your help. I'm so sorry that there are so many on this board who have "female" problems along with everything else. I'm glad you're willing to share your information, even though this is not an endometriosis site.

    smutsmum - thank you for the site, I've looked at it quickly, and it's really interesting. I'm looking foward to going over it in more detail.

    larayne - I'm sorry that you are also having problems. At first they checked the same thing for me, to check for cancer, but didn't find anything. I hope for the best for you. I don't think that these problems are part of FMS at all, but Victoria's post suggests that if you have FMS or CFIDS you might be more likely to have some of these problems. I hope you'll take good care of yourself and get to the bottom of the problem. Whenever there's a possibility of cancer it's so scary. Make sure you take care of it as soon as possible.

    Victoria - Thank you for all your help. I love cheese and bread, so you advice is very difficult for me to hear! Did you start the diet slowly, or jump in with both feet? My doctor has been talking to me about a shot that will put my body in medical menopause. The thought of it makes me extremely nervous. I want to have 1 more child, but not for another year or two. My doctor is urging me to have one now or as soon as possible. Do you think if I begin to follow the diet you suggested I would be able to wait a few years before having my last child? I'm only 24 and would like to finish my degree before I become a mommy again.

    Thanks again,
    DF
  6. victoria

    victoria New Member

    is my experience, DF, that is the way it worked for me.

    And yes, I jumped in with both feet because the thought of taking RX hormones etc was a scary proposition once I looked at the unavoidable side effects one has to tolerate.

    AND the thought of the pain I'd experienced every time I was tempted by anything with sugar or yeast or mold in it was enough, but, I'm not kidding when I say I was rolling around with pain for 6 hours at a time, worse than labor if you ask me as at least with labor you get a bit of time between contractions.

    I also think it helped me then with fatigue.

    If you decide to do the candida diet, it is an all or nothing proposition as you must starve it, and you must get the appropriate rx for the yeast as well.

    There are labs like Great Smokies (or Smoky?) that will test a stool sample for yeast and can further test for what RXs it is sensitive or resistant to. I took Nystatin for a long time, no side effects, in fact if I had something by accident that I shouldn't and felt symptoms returning, I could take it and get rid of the pain that was building.

    You might want to read Dr. William Crook's book, he has several including one especially for women; also you can do a search on google for more info and to find a doctor near you that is literate in this area.

    I was able to get pg two times as I planned with no problem once I was on the candida diet/rx - before that we had been trying for a couple of years.

    I also never had a hysterectomy, altho it was recommended, just felt that I could keep it under control this way and because the uterus gives off hormones of its own.

    Most of us with endo, if not all, are estrogen dominant, so it's suggested you don't eat soy products either since it's a soy mimicker. I took soy phytoestrogens when I started hitting menopause; much to my dismay, not only did my periods come back hard and regular, so did the cramping.

    It is a whole other subject adjacent to CF/FM, but they do overlap for some reason, falls under the heading I guess of "autoimmune diseases" and do seem to be related.

    Hope this helps, if you have any other questions I can help with from my experience, I'm happy to answer. . .

    all the best,
    Victoria
    [This Message was Edited on 02/17/2005]
  7. didofan

    didofan New Member

    Hi Victoria,
    It looks like I'll need to study the diet so I can understand it. I was thinking of it just like a regular diet, without analysis of types of yeast, and stuff. I'm not sure I'm using the right terms that you were using, I'm kind of foggy today. I am interested though.

    I know it sounds stupid, but I'm actually kind of relieved that they finally found out what was causing all of my pain. After you know what it is, you can find out ways to deal with it. Before I knew what it was I was wondering if it was all in my head, or if it was FMS somehow, or something. I wish it wasn't something chronic like endometriosis, but at least I know what it is. :)

    Thanks again for your help. As I look into the information you gave me I might have more questions, but you've given me a great start. I was surprised at how little information my dr. gave me. Just told me what I had and the opinion that within the next 2 months I should either start the hormone shots or get pregnant. He doesn't want it to grow back too quickly. I guess mine was bad too, but I don't know how bad. Maybe I should find an OB/GYN that communicates a little better. :)

    Thanks again,
    DidoFan
  8. jettaglgirl

    jettaglgirl New Member

    Yes, years of pain girlfriend. You can take birth control to help, Luperon shots or something else, I seem to forget. I could not take birth control, I took (1) and only (1) Luperon shot (MAJOR) side effects, and if I'm thinking correctly, hysterectomy was the third thing.

    Then, you have to weight out the pros and cons of hysterectomy.

    I've got a long story which I will not go into now, but the best thing is unfortunately try to deal with it month to month.
  9. tandy

    tandy New Member


    This Endo and Fibro thing has been discussed alot here before. If your interested in those posts,..just type Endometriosis into the search bar on top,.... theres alot of info for you to read there!! lots~
    I've had Fibro for 12 yrs and Endo for 7.
    They are common together,....
    Makes for some painful days,weeks,...months!

    I think the shots are either Lupron or Depo Provera.
    Both are used for Endo treatment.
    The Lupron you are only allowed to be on for 6 month intervals. 1 shot a month for 6 months,usally following a Laproscopic surgery to remove as much endo as possible.

    They must monitor your bone density with those shots because they are known to rapidly deplete your body of 'something? not calcium,...?something else,..I forget!!lol)
    I was on that for the 6 months and had no side effects.
    But for some the side effects are bad.

    Currently I get the Depo shots every 11 weeks. They help control the pain and bleeding is just about nill.(spotting)
    Just research both shots offered before you decide to go for one or the other.
    Some say the Lupron are dangerous to our health!!
    read,read and read!!

    I was told to get a Hysterectomy by 2 drs. to cure my Endo.
    I have'nt done it yet~ Like a poster above said..."I'll keep my organs untill the pain is unbearable!"
    I've had 4 surgerys to remove new growths. Mine is stubborn!! still painful too but not as bad.
    A hysterectomy is only helpful if the Endo is confined to your female organs. I have it other places to.
    so for me,...a hysto is'nt the answer. (not yet anyways!)

    While you are pregnant,....most or all of your pelvic/Endo pain goes away~ a big plus!
    Best of luck!!
    I understand what you are going thru~
    I lose alot of time to both diseases.
    Hope this helped.
    Hugs
    Tandy
  10. EllenComstock

    EllenComstock New Member

    endo and fms. I had my third laparascopy last year and have just finished six months of Lupron shots, which stop your periods. It is recommended you have these shots, which stop your periods, after the surgery to give your system a rest. It puts you in immediate menopause so I've had some problems with the hot flashes, but not enough to make me quit the shots. But because I'm not getting the estrogen, it can weaken your bones, although my doctor said that being on Lupron for six months is not long enough to have to be on Actonel (which helps with the bone loss problem). He did say that if I start having more pelvic pain after I start menstruating again, to let him know and I can be on Lupron until my natural menopause, although I would definitely have to take Actonel. I also exercise, which helps strengthen bones.

    I would definitely join the Endometriosis Association. Someone else here also mentioned this. I have been a member for years and they are a great source of information and support. Almost everyone that works there has endo, too, so they understand what you are going through. I hope this is okay to put this here, but here is their website: endometriosisassn.org (I believe this is the correct name-brain fog today). If not, their headquarters is in Milwaukee, Wisconsin.

    They provide a lot of valuable services-doctor lists, support lists, crisis call listeners (I volunteer as a crisis call listener), several newsletters a year, reading material to purchase, and other services. I would encourage you to educate yourself as much as possible.

    Ellen
  11. didofan

    didofan New Member

    You guys are great. I thought there would only be one or two people here who had both. It's kind of sad that there are so many of us. I will read up on the shots. I am on birth control already (not time to have another baby yet), and it hasn't really helped. I've noticed that some days I've been taking my fibro pain meds because of my pelvic pain just as much or more then for my fibro pain. My TOM should be starting tomorrow, and I already hurt bad. This is the hardest part of the month for me. It seems like my pelvic pain eggs on the fibro pain. They kinda feed each other.

    I'm going to check out the Society you guys have recommended, it sounds great. I'm hoping they'll have some ideas on how to handle this part of the month as well as informatoin on the shots.

    Thanks again,
    Didofan
  12. K8T11

    K8T11 New Member

    Hi Ladies,

    Though I notice the post on endo and FMS are at least a year ago, hopefully someone will read this. I've had two laproscopic surgeries for endo, most recent 2 months ago. I wish I had never gone threw w/ either. The postop pain from the first, 5 years ago remains and the second brough on out of control torture. At least I could somewhat control the pain prior. Now I'm left w/ such severe, seething pain, it makes me consider suicide...it's just a thought I wouldn't act out, but I get pretty damn depressed. Pain relivers are nearly impossible to obtain, thanks to those who abuse and create apprehesive docs. I've had FMS (what seems) forever. It only exacerbates the condition. As many of you, I've gone from doctor to doctor, while most say "have you tried therapy?" and other condesending remarks....the worst I hear was "go home and find religion" HUH?....Bottom line, I can not take any BC or hormones. Can anyone suggest an alternative or at least a STRONG antimflamatory to control the endo/FMS pain that I can suggest to my PCP....I use Toradol, which works when the pain is minimal, but I often find myself in the ER, which we all know is a hell on earth. Any help would be GREATLY appreciated.
    Thanks for listening
  13. woofmom

    woofmom New Member

    I've never had that. But, in 1983 I had a d&c. I had what was called pelvic inflammatory disease. I was living down the street from a company that was ilegally dumping chemicals out their backdoor. I also had miscarriages and constantly had a kidney "infection" that went away when I moved somewhere else.