Does anyone have endometriosis as well as ME/CFS ?

Discussion in 'Fibromyalgia Main Forum' started by Dovely, Nov 9, 2002.

  1. Dovely

    Dovely New Member

    I am in the stages of getting diagnosed with endometriosis, but I would like to know has anyone been diagnosed with it and had the laproscopy done and how did your body cope with it?.
  2. Dovely

    Dovely New Member

    I am in the stages of getting diagnosed with endometriosis, but I would like to know has anyone been diagnosed with it and had the laproscopy done and how did your body cope with it?.
  3. Shirl

    Shirl New Member

    Welcome to the board. I just checked your profile, you dog is simply put, beautiful! Is he/she a Husky? He is truly a beauty.

    We have a lot of members here diagnosed with Endro. I am sure they will be sharing with you soon.

    The board is slow on the weekends, so be patient with us!

    I have Fibro, and all that goes along with it, but not Endro.

    Just though I would welcome you to the board, and comment on you dog.

    Shalom, Shirl
  4. pam_d

    pam_d New Member

    I do not have endometriosis, but I just had a laparoscopy done (at same time as D&C & hysteroscopy)--I had to have an ovarian cyst taken care of. Anyway, it went OK, but be sure to allow yourself a full week at least before having to do almost anything. I was feeling pretty rotten for the first few days--rest & have pain meds ready, don't push yourself to do more til you're ready. I think it takes us a lot longer to heal than regular folks. They always send you home from the hospital with "care instructions"---you can basically chuck those, we with FM/CFS need a whole separate set of instructions! (i.e., no, I could NOT have gone back to work the following day...) Anyway, good luck & just take time to let your body heal at a slow pace.

  5. namow

    namow New Member

    Hello Dovely
    The other day I heard that they found some connection between endometriosis and FM/CFIDS.Has anyone else heard that?

    I was diagnosed with endometriosis many years ago and as a result I had a complete hysterectomy with removal of the ovaries. I hate to scare you with my experience which might be unique but it has been a bad one.

    My doctor told me that after my surgery I would feel like a new person but it has been quite the opposite.

    If your doctor wants you to have surgery PLEASE ask two or three opinions before you make a decision.
    Good luck!
  6. tandy

    tandy New Member

    I was blessed with both!!I've had FM for around 10 yrs and was Dx with endometriosis 5 yrs ago.I had the first diagnostic laproscopy and since then two more surgerys on my female organs to remove endo/adhesions.The lapsroscopys are'nt too awful(uncomfortable~yes)give yourself a week to recover.I've heard of some people up and about within hrs and then there are some who need a good 5 days or so.For me personally.....the first was time,I was very sore.The second time(maybe b/c I knew what to expect)was'nt to bad but I did need a few days.The last one was just this past august and I felt fine the next day!(a little incision soreness).We are all so different tho.I had a girlfriend ask me about the surgery b/c she had to have one also.I told her it was'nt too bad but I said"you'll be a little sore".Well for her,she said it was real painful when she woke up after surgey ,and she was on the couch for 6-7 days after.
    best of luck to you,keep us posted on how you make out~
    Warm regards,
  7. karen55

    karen55 New Member

    I had endometriosis, and had the laproscopy done in 1989. I was told that I would be back to work in 3 days...didn't quite work that way, took a full week off, and the week I went back I only worked part time. I just felt tired and weak, at the time thought it was just due to the surgery. Did you have laser surgery? I did, and I found the incisions hurt a lot. The thing that bothered me the most was that the gas they pump into your abdominal cavity to enable them to do the laproscopy settled up around my shoulders/neck after surgery, and that was really painful for a frew days. All in all, it wasn't a bad recovery though. After general anesthesia it usually takes a few weeks to get your strength back, and it takes a few weeks for your tummy to get back to normal; mine was puffy.
    I did end up having a total hysterectomy some years later though. I had a large ovarian tumor removed in '93 and was already having lots of problems with pain and then I would bleed for 6 weeks at a time, and had my hysterectomy in '94.
    For some time after the laproscopy, I felt much better and my cycle was pretty normal. Hopefully you will have the same result.
    Good luck. {{{hugs}}}
  8. ohmyaching

    ohmyaching New Member

    I tell everybody about the work being done with immune disease by the Endometriosis Assoc..
    The Endometriosis Association believes that endometriosis is an immune disease. I have early research for CFS that lists endometriosis as a symptom. Why CFS organizations 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. I've been through endstage endometriosis and had a hysterectomy/ oopherectomy. I was a member of the Endometriosis Association during that time and it was right about then that the Endometriosis Assoc. changed their whole outlook toward endometriosis focusing more on the area of immune disease.
    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- because a large number of women with endo seem to have allergies.
    2.Treat for candida.( I 've found that my pain, stiffness and a good deal of fatigue have completely disappeared when I do an anti candida diet. My allergies and shortness of breath also seem to clear up. The real problem I have with anti candida programs is finding balance (perhaps because my hormones aren't balanced- see below).
    3.Treat hormone imbalance. Most women with endo seem to have hormone imbalances. ( I found this webpage at on DHEA, meleatonin and CFS that offers an explanation, just a theory really, on how imbalances of DHEA, cortisone and testosterone may cause CFS symptoms. It was interesting to find this theory because these are the three hormones that Endometrisosis Assoc. recommends you get tested for along with thyroid hormones.)
    I am trying to find a doctor who will help me follow this program, because even though I have had the surgery I do not feel that my immune dysfunction was dealt with. This treatment program is the same in many ways as those programs recommended for CFS. Unfortunately few if any doctors will do this treatment.
    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. These are treatments that have been used with success by many members of the Endometriosis Assoc.. I don't think the program is a permanent cure so that you can stop following the program, but it works as long as you continue to follow it. It seems to stop the disease from progressing, perhaps the program might even be helpful in preventing endometriosis. The increased risk CFS patients have for developing endometriosis might make it a good thing for CFS patients to follow. I haven't been a member of the Endometriosis Assoc. for a while so I can't be sure if the effects of this program has held up over the long term, but it seems like they may be on to something good. 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 and they are always looking for members.

  9. liljujube

    liljujube New Member

    I'm new to the board too, but not to CFS, FM and endometriosis unfortunately.

    I did have the laproscopy, I was pretty sick for a day or 2 after, but its the only way they can tell for sure you have it. At the time I was having severe pain with the FM, so my body was already so sore I can't remember how painful it was, sorry.

    I am not sure if you have a lot of pain with the endo, but I use Torodol for emergencies. Its a really strong anti-inflammatory, but it causes the blood to thin so I don't think its good for long term use, just emergencies.

    The important thing is not to take ANY anti-inflammatories for a week or 2 before the surgery, because of bleeding problems while on them. I was booked for a second lapro and they didn't tell me, thank goodness I asked about it, that could have been serious. I'd make sure they are aware of ALL your medications before the surgery, they didn't read my pre-surgery questionnaire.

    Good luck with the surgery!
  10. ephemera

    ephemera New Member

    Hello. I had it for years before an old style woman gyn said I had it & touched it during an exam. I went to the moon & back on that one.

    I had the laproscopy done in 1989. It took me a few days to recover. This was long before I had any other pains or problems. (in other words the good ol' days of my 30s.) Can't imagine how I'd do now w/ the fibro.

    I really feel the laproscopy was the most beneficial surgery I ever had. Have had no recurrances in terms of severe menstrual pain. Sad to say this doc is retired. She is my all-time favorite MD.

    best thoughts.
  11. Dovely

    Dovely New Member

    Thankyou to everyone who replied, you have helped settle my nerves down a bit about the operation, it will be my first too.
    From all the information I have been given and read on the net as well as what some of you have said the laproscopy is really the only way to go, I guess my biggest fear is the gas they put into your stomach and the fact I have such bad circulation, but I am probably letting my nerves get the better of me!.
    Also my doctor actually put on my hospital admission form that the ME/CFS could be the cause of the endometriosis, which I thought was interesting!.