Anyone here with severe Endometriosis also???

Discussion in 'Fibromyalgia Main Forum' started by 2BPainfree, Jan 13, 2003.

  1. 2BPainfree

    2BPainfree New Member

    I have had multiple surgeries and been "gutted like a fish" according to my 15 yr old, LOL....

    I have been having severe abd pain again, ongoing for months. Was just wondering if anyone else here goes thru the same thing.... (I know this is not a board for endo, but I feel like this is my home!) and... we all do have a variety of symptoms along with our FM & CFS. Besides, the other boards don't fit me as well as this one, here I feel like we are ALL connected somehow.

    If you are in the same situation with Endo, multiple surgery's and still having pain....I would really like to talk with you! Either here or I will give my e-mail.

    Thanks..Ouch!! (wish someone would pull the knife out of my stomach, I do beleive it's coming clear thru my back side!LOL!!)

    Susan B.
  2. victoria

    victoria New Member

    What came first, chronic fatigue or endo... have had mild periods of CFIDS since I had mono at 18, always had bad painful menses. It seems to be a consensus now that all of this auto-immune stuff is related. The endo assoc, in milwaukee has reported that the diet is one of the best means of controlling symptoms, and has tapes on alternative methods of controlling it.

    I was diagnosed with severe endo when I was 31 and trying to conceive my first child - suddenly had rolling-on-the-floor type cramps for 6-8 hours per spell, they were worse than labor! After doing the usual at the time (bc pills), I went further and found out about candida and followed diet faithfully. For me, I found cheese, yeasted bread, and wine could bring on these cramps quite quickly -- within 1--2 hrs. I conceived within 3 months of starting the diet, had 2 kids and nursed each a long time, all of which I know helped.

    But 9 years ago had another laparoscopy, this time laser surgery, still told it looked bad (had started getting some pain back but surgery was really for an ovarian cyst). Couldn't take bcp this time, just worked on staying on diet as well as I could. Unfortunately, altho it helped my endo even tho I wasn't that "good", I slid into bad chronic fatigue over past few years. No more pain for me now, luckily, since I'm now starting menopause (I'm 51) UNLESS I have one of those foods! And if I take phytoestrogens, it all comes back. Have found progesterone cream has helped as well, also vitex.

    Hope this is helpful...
  3. angel888

    angel888 New Member

    Hi Susan,
    Sounds like we have a lot in common. I have fibro, I was on dialysis for 3 years, had a kidney transplant, I've had my gallbladder removed, I've had abnormal pap smears for as long as I can remember. I've had colpo's by the dozen, cervical biopsies, and YES severe endo. Last month my cervix dialated 3cm. due to clotting. I don't know if my endo. is related to my fibro, I just know it hurts BIG TIME!There is an injection that you can get. The drug is called Lupron Depot. It causes you to stop having your period. It is given once every month or once every three months over a six month period. It's expensive $600.00 an injection. Some women swear by it. As for me, I'm going the vitamin route. You see Lupron causes menopause like symptoms, hot flashes, headaches. I've only been on the vitamins for two weeks but, my period is due in 12 days. Usually I would be suffering by now......Nothing, no cramping and lots of energy. I went to an endo. web site and got all the info. there. If you would like I can tell you more about the Lupron or email you the endo. web site. Take care. Nancy
    [This Message was Edited on 01/13/2003]
  4. Sunshyne1027

    Sunshyne1027 New Member

    Recently my sister was diagnosed with Lupus. I was sort of in shock some. No one else in my family has any diseases, disorders like me and her, it was like a connection somehow. Anyways, she has suffered from endo for a long long time. She recently had a surgery done-hysterectomy.. due to the endo. She says she started getting the symptoms of Lupus, after a previous surgery. So maybe it does have a connection somewhere, the endo, and Fibro, Lupus..etc.

    I don't have it though. Hmm.


  5. joannie1

    joannie1 New Member

    I am so sorry you are feeling so poorly lately. I feel so bad for you. I know the pain, I have been in a flair so bad for the past week plus that i hate to do anything period but lay on the couch with a heating pad on my belly.
    Can't they do anything for you with this? I thought having a hysterectomy it got rid of it? Maybe I am wrong I don't know. I wish there was something I could do to help comfort you with this pain.
    I am here if you need to talk okay. Your not alone, alot of us suffer because of this.
    Take care and let me know if you need to talk okay.
    Big soft hugs,
  6. tandy

    tandy New Member

    hey unfortunatly I have both!!Oh and as you know the two together can be hell!! When one acts up so does the other.(I think they're in sync!)Anyway I've had 3 surgerys for the Endo,the latest being just this past august.And I still have pain from the endo today! I take the depo shots to try to control the pain and bleeding.However its not working as well as it did yrs ago.I'd love to chat with you on the two DD!!Let me know here and i'll post my e-mail and delete it after you've gotten it. By the way i'm 39 yrs old....will be 40 in a few weeks here!!whoopy!!!
    I know how you feel, really I do~It plain ole sux!!
    Hope to hear from you soon.
    Best regards,
  7. ohmyaching

    ohmyaching New Member

    Have you given yourself time to heal? I had end stage endo and had everything out,
    uterus, falopian tubes, ovaries. I don’t have any problems from the surgery. Was in pain
    only for a couple weeks after the surgery while my incision was healing. I hope you’ve
    been discussing this pain with your doctor and aren’t just biting the bullet. If it’s been
    awhile since the surgery so that your incision has had time to heal you may want to
    consider a second opinion from another doctor-couldn’t hurt. It’s also possible there may
    have been a problem with how the surgery was done. Human error is always a possibility
    although it’s best not to accuse anyone because there is always an element of
    unpredictability about the outcome of any surgery no matter how well performed. I have
    heard of some women who ended up with pain from surgery. It seems for the the most
    part that these women had partial surgeries in an effort to preserve their reproductive
    organs so they could have children and their pain ended with the full removal of their
    organs. Adhesions can sometimes develop from surgery which can cause pain. Hope you
    can find some relief soon. I’ve always been told never to accept pain as “normal”.
    The CFIDS Chronucle, published by the CFIDS Assoc. has printed reports stating that
    women with CFIDS have a greater incidence of endometriosis than that found in the
    general public. (I don't know about FM)
    I was a member of the Endometriosis Assoc. and during that time their whole outlook
    toward endometriosis changed. They started to focus more on the area of autoimmune
    disease. The Endometrisis Assoc. has developed a program for treating endometriosis as
    an autoimmune disease which invloves the following:
    1. Treat allergies-desensitization to allergies
    2. Treat candida
    3. Treat hormone imbalances
    It seems to me that because the incidence of endo is greater in women with CFIDS it
    might be a good idea for any woman with CFIDS to use this program as a preventative
    measure so that hopefully they don’t develop endo. The people using this program at the
    Endometriosis Assoc. reported that it halted the progression of their endo, but it’s been a
    while since I’ve been a member and I don’t know how the long term effects of the
    program have turned out although I see no reason for any changes in improvement.

  8. 2BPainfree

    2BPainfree New Member

    The endo came first most definately.
    When I was a teen I used to roll, cry and sweat while twisted up in a ball from the was there from the very start. (I'm now 38 yrs old)Was always told..."just part of being a woman Honey"

    I have had 4 surgeries (I was one of those picked apart, pc by pc) I have had a total hyst, ovaries and all....still the pain continues. Everytime I have a surgery (last one was one yr ago this Jan) they always find loads of scar tissue, everthing is "stuck" together with adhesions both thin and dense. Last time, among everthing else, even my colon was stuck to my bladder! Geezz...enough already!

    I am one of those women you hear about who despite removing everything, still has pain. I have had surgery by Dr. Redwine....(suppose to be a world known endo surgeon) and still the pain continues, Now on the opposite side of where he did surgery.

    Like I said however, they do find something very wrong...everytime. It's not like I complain and they don't find things....which some of these Docs think will be the case ....I'd like to bite their heads off!!..(just kidding**giggle**)

    I can take alot of pain before I speak up because I am so use to it. I just get soooo tired of dealing with it, so does my family (husband in particular)

    What does one do?? Sometimes by the time I finally decide to go in, make the appoint and wait for it...the pain begins to fade. I can't go in and complain about something that's getting better....when I have, all they say is "let's just wait and see what happens"

    Lupron is not an option for me. I have way to much fatigue to even consider it. Plus, it's suppose to be quite toxic to the body (I have read) I have also read and heard of so many who did suffer thru the fatigue and headaches only to be rewarded with the endo returning after the lupron was stopped. I think it really depends on how bad the endo is to begin with on whether it will help get rid of it. I do know many have stated their pain went away while on it. I just can't take on anymore side effects than I already have.
    My e-mail is: if anyone wants to talk more!

    Susan B
  9. pumy

    pumy New Member

    Dear 2BPainFree,
    I have had endo the past 20 years, I understand your pain
    all too well. My main complaint has always been low back
    pain. I have tried nsaids, nasal sprays, pain meds, laser
    surgery nothing seemed to work effectively. My OB grew
    tired of pain med requests and suggested lupron injections. I was on them for 6 months having severe
    headaches, mood swings, hot flashes, breakthrough bleeding.
    I thought it would take away the pain and it has somewhat.
    About 3 months after my last injection I began to have
    ongoing muscle pain. I believe the lupron brought on my fm.
    I searched the internet and found the lupron victims network. It seems many people have had similiar muscle problems, rheumitoid arthritis, and other medical problems.
    Please research this drug or any other, I wish I had. The thing that really gets me is my endo symptoms have gotten better but now I have fm. If my OB had just been comfortable prescribing pain meds I would have never taken the lupron injections. Good luck. Let me know if you discover anything new to try.


    [This Message was Edited on 01/14/2003]
  10. jlouise

    jlouise New Member

    At 22 I had my first surgery, removed an ovary, a tube and adhesions. At 25, a surgery to remove adhesions. At 37, after having 2 children, another adhesion and partial ovary surgery. Now at 45, I have a Pain that runs down my leg, a cyst pressing against a nerve. It seems Endo. is common among Female FM and/or CFS folks. Message me for more info.
  11. lin21

    lin21 New Member


    When I was 18 I went to a gyno who proclaimed in front of my mother that there was nothing wrong with me and I needed a shrink. I suffered and went to numerous gynos for the next 10 years. One day I collapsed in work and they did a laparscope , then diagnosed endo. That Dr. told me I would never have children. I suffered silently, only having 1 good week a month. I had several laparascopes every six months and then went to a Specialist (another word for very expensive) NYC Dr. who again performed a laparascope. Six months later I was sick again. My cousin then urged me to go to this local Dr. (3 blocks from my home) who I had never went to because I disliked our local hospital. He did an internal and said "oh yeah, we need to operate immediately".
    The following month he performed surgery and as I awakened from recovery I knew it was unlike any of my previous surgeries. At that time he told my husband it was the worst case he had every witnessed. May I add he performs surgery all over the globe.
    Well again, about 8 months later I started getting sick again . I was torn , I went to him in tears , at this point all I wanted was normallacy in our lives. Two weeks later I found out I was pregnant!!! Everyone around me was so cautious, and I proclaimed "to hell with all of you, it took me all these years to get pregnant , I WILL HAVE this baby .
    I gave birth to a healthy baby girl on May 12. Shortly after (August) my symptoms returned and I was put on drug therapy which I developed immunity to after about 8 months later. I then decided that I had no choice but to have a hysterectomy at age 35. My Dr. was reluctant but he knew the pain I had suffered. I regret that decision now , I wish I just held out a little longer and maybe with new technology I would have been able to have a sibling for my daughter.
    If you live in the northern NJ area, I would recommend this Dr. to you because he is a miracle worker. Alot of people dislike him because he tells the truth and if there is no hope he doesn't bs you around. He was my saviour, if it weren't for him I would have never had my daughter or knew what it was like to be normal.
    Now I suffer with fibro and I only wish he was a rheumie.
    If you need more information feel free to let me know.
  12. tandy

    tandy New Member

    Hi Lin~ I posted above on this thread.I've had a few surgerys for my Endometriosis.My last one was 5 months ago(lapro).I-yet again,and so soon- have bad pain again~Ya know low back,tailbone area,left ovary...alot of pulling sensations,spotting when I should'nt be,leg pain etc....
    Just wondered if you've gotten relief from this by having the hysto? I've been told thats my only option here by two Drs,and although I don't want any more children,I've heard of some women having the hysto and still having pain after!!so obviously the endo was on other organs,and was missed?? Just wanted to see if your pain is gone/and are you on any HRT?Thanks so much,
    Warm regards,