Endometriosis and Fibromyalgia -Anyone?

Discussion in 'Fibromyalgia Main Forum' started by robing2, Apr 11, 2003.

  1. robing2

    robing2 New Member

    To my disgust, after having Fibro for 11 years. I now have to deal with Endometriosis. I am very disgusted. I started researching online and found this disturbing article on Fibro and Endometriosis on MSNBC
    website (see below). Has one had to deal with this too? If so any suggestions on treatment and meds? Thank you in advance. Robin G

    Article:
    THE STUDY, published this week in the journal Human Reproduction, is the first to document something that has been noticed by many women with the painful disorder, which afflicts about 10 percent of women of childbearing age.
    These findings “suggest a strong association between endometriosis and autoimmune disorders and indicate the need to consider the co-existence of other conditions in women with endometriosis,” said study author Ninet Sinaii of the National Institute of Child Health and Human Development.
    The cause of endometriosis, as well as of the other diseases, remains unknown.
    “What is the underlying factor, the commonality, between all of these diseases? If we can find out what the one factor is, or group of factors, we can target that and hopefully come up with a way to treat not only the endometriosis, but also some of the other diseases,” said Warren Nothnick, a University of Kansas professor of obstetrics and gynecology who was not connected with the study.

    IMMUNE SYSTEM CHEMICALS MAY BE LINK
    His own work, as well as that of other scientists, suggests that the malfunctioning of certain immune system chemicals called cytokines may be a common link.
    Assuming endometriosis occurs before the other diseases, it may also be possible one day to spare women with endometriosis from developing some of the additional diseases, Nothnick said.
    The study, conducted by scientists at National Institute of Child Health and Human Development, George Washington University and the Endometriosis Association, involved 3,680 women with endometriosis.
    The scientists found that 20 percent of the women had more than one other disease. A third of the women who had other diseases had fibromyalgia or chronic fatigue syndrome, and some of those women also had other autoimmune or hormone diseases.
    Chronic fatigue syndrome was more than 100 times more common than among the general U.S. female population.
    Hypothyroidism, which involves an underactive thyroid gland and causes mental and physical slowing, was seven times more common.

    Fibromyalgia, which is characterized by widespread body pain and tiredness, was twice as common among the women with endometriosis.
    Autoimmune inflammatory diseases — systemic lupus, rheumatoid arthritis and multiple sclerosis — also occurred more frequently than normal.
    Rates of allergic conditions were higher, too. While allergies occur in 18 percent of U.S. women, they occurred in 61 percent of the women with endometriosis. The rate climbed even higher if the women had additional diseases.

    GAP IN DIAGNOSIS
    The study also confirmed previous findings that there is typically a lengthy gap between the time women first get the pelvic pain and the diagnosis of endometriosis.

    and conditions among women with endometriosis, we found that they reported significant pain and disability and, very worryingly, that there was typically a 10-year delay between the onset of pelvic pain and diagnosis,” Sinaii said.
    The scientists do not know whether endometriosis develops over time or whether it can occur when girls reach puberty. They are also unsure about whether early treatment can prevent chronic pain.
    Sinaii and her colleagues are urging doctors, particularly those who treat adolescents, to be aware that pelvic pain could mean endometriosis and that it is linked to other conditions.
    “It is vital therefore that attempts should be made to diagnose and treat endometriosis in adolescents,” added Dr. Pamela Stratton, who worked on the research.
    The most common symptom of endometriosis is pain, especially excessive cramps during menstrual periods or pain during or after sex. Infertility occurs in about 30 to 40 percent of women with endometriosis.
    Two-thirds of the women reported having relatives with either confirmed or suspected endometriosis, suggesting it may run in families.

    UNDERSTANDING ENDOMETRIOSIS
    Endometrial tissue outside the uterus responds to the menstrual cycle similarly to the way it responds in the uterus. At the end of every cycle, when hormones cause the uterus to shed its endometrial lining, endometrial tissue growing outside the uterus also breaks apart and bleeds.
    However, unlike menstrual fluid from the womb, which is flushed from the body during menstrual periods, blood from the misplaced tissue has no place to go. Tissues surrounding the area of endometriosis may become inflamed or swollen.
    It is one of the most complex and least understood gynecological diseases and, despite many theories, the cause remains unknown.
    One theory is that during menstruation some of the menstrual tissue backs up through the fallopian tubes into the abdomen, where it implants and grows.


  2. mrskbarnett

    mrskbarnett New Member

    I had a hysterectomy last August. After years of abdominal pain and many, many visits to several diffferent doctors, who told me nothing was wrong, I finally found a doctor who ran extensive test & found that I had endometriosis. Also during the hysterectomy, they found that my uterous had grown to my abdominal wall....hence the pain. And I still get cramps...and there is nothing there to cramp? Who knows...I just feel awhole lot better in that area now. Good luck sweetie.
  3. DragonBall

    DragonBall New Member

    my mother had endomettriosis for years. i suffer from fm and am currently on tablets for heavy periods (tranexamic acid) to clot the blood. I also have bsd pains, these tablets are helping but my doctor says if they do not help then i would need a hysterectomy. I have also been told that endometresis is hereditary.
  4. OuchyMama

    OuchyMama New Member

    In 1998 I was thin active full time job I loved and had held for 14 years, attending college pursuing my degree in social work straight A"s , vice president of my union, and met and soon to marry the Prince of my dreams. My life was perfect. 2 weeks before my wedding my blood pressure dropped so low I fainted at work. I went home thinking I was just tired from a very active life coupled with the excitement and stress of my upcoming wedding. I then began having searing abdominal pain and was forced to go to the emergency room. The Dr. on duty informed me it was just monthly cramps and stress "Cowboy Up and deal with it:" I returned the next day after again passing out from pain and a different Dr. examined me ordered a ultrasound that found what the surgeons would later call the whopper. I had a fibrous endometrial mass the size of a football. My dream wedding to my dream guy was postponed.
    No problem I thought I will heal I will be back to my old self wedding goes on . That was not to be. I never got better after that it was like more than my body could bounce back from. The exhaustion began nausea pain all over, insomnia it took over my life. The job I had for 14 years I started getting write up for abuse of sick time. I had to leave college I was too tired to walk to classes too tired to read. I resigned from all activities in the union the cause close to my heart. My Prince married me thinking I know that I would be back to my presurgery self. He did not count on the too tired to put on make up, too sore for minis, and heels weight gaining from steroids bride he got. He proposed to Cinderella and woke up with the ugly step-sister.
    In 2001 the weird pain was back I awoke even sicker than usual and just felt off. I laid on the couch. I asked to go to ER my husband by now weary from a wife who is always sick told me if your still sick when I get home I will take you. By the time I got to the hospital I was critical. I was hemmoraging internally so badly I had no pulse. Emergency surgery was done I was again so full of endometriosis it was crushing my ovaries my liver and had even begun to come out through my belly button.
    I have no insurance now so of course no gyno follow ups like I should have. The odd pain and interrupted cycles are back so I know it is back I am not sure who will win this round.
  5. tandy

    tandy New Member

    Another one here that suffers with both,FM and Endometriosis~ I"ve had FM for a lil over 10 yrs,and Endo for 5 yrs.I've had 3 or 4 surgerys for the endo,and still have pain that just won't budge! its been suggested that I have a hysterectomy,but so far I have'nt.mainly because I researched the condition alot and even spoke to afew women who went ahead with the hysto for Endo,and many still have pain after surgery.(each month)So either its left behind on other organs in the pelvic cavity,or they'res a bunch of terrible drs. out there performing bad hysto's.
    Either way...I still fight the agony of both conditions.Its hard to say which one causes me most pain~Seems everything hurts!! I've sorta gotten used to the pain.If I were to wake up and feel no pain-I'd know I were dead!!
    Sorry you have both too,there is a link of endo&autoimmune conditions.They both stink! BTW...I use the Depo shots every 11 weeks to curb the growth of my endo.Its suppose to help with monthly pain too,but I still have alot of that so who knows~ Endo is very chronic,mine has come back each time within 6 months of surgery. I really have no answers for relief~other than pain meds and a heating pad.
    Hope your having a good day everyone!
    Warm regards,
    Tracey
  6. KristinaInCali

    KristinaInCali New Member

    RobinG-

    Wow, I could be the poster child for this article! I had endo first from age 18-25. It disappated after the birth of my first child. I became "ill" with an unknown illness at age 29 but in retrospect I can now see where there were vague symptoms even before the full-on onset. I am now officially diagnosed with:

    FMS, Rheumatoid arthritis, multiple sclerosis, trigeminal neuralgia and another type of arthritis yet to be determined. There are times when reading an article like the one posted is confirmatory and validating. Today, I'm finding it just downright depressing. I guess some days are better than others.

    Kristina
  7. pamj

    pamj New Member

    A few of you mentioned surgery for endometriosis, so I have to post this...
    A hysterectomy should not be performed if its only purpose is to treat endometriosis. ALWAYS get a second opinion if this is the only reason your doctor is recommending it. As many of you mentioned, you still have cramping even after the surgery.

    The endometrial tissue builds up in many areas of the abdomen for those who have endo. Having the hysterectomy does not necessarily get rid of the problem in the areas outside of the uterus. I've had trouble with the endo buildup around my colon (as many others have too), with incredible pain. Since I had already had 3 surgeries to clear up existing endo buildup and related scar tissue & adhesions, I asked about a hysterectomy. The docs at UCSF and a specialist at Stanford Medical (some of the best docs in the country) all said "absolutely not". It is something that should only be done if other serious damage has occurred due to the endo, but there is no guarantee that you still would not have endo problems after the surgery.

    I just want to make sure there isn't anyone out there who thinks that a MAJOR, RADICAL surgery is a quick fix to "cure" endo. Messing with our hormones so severely can cause other problems that may be worse than what we're already dealing with. I've seen my mother go through hell because of a doc who was too quick to do a total hysterectomy on her at the age of 31, and I wouldn't want anyone else to have to feel the way she has for the past 25 years.

    take care,
    Pam J
  8. pumy

    pumy New Member

    Dear Robing2,
    I was diagnosed with endo in 1981 have had 2 laparascopic
    surguries, nasal sprays, you name it. 18 months ago my
    ob/gyn suggested trying lupron injections. He was tired of prescribing pain meds, made me feel like a drug addict. Anyway I recieved the once monthly injections for 6 months, it puts you into a pre-menopausal state. Right after i stopped the shots i began experiancing muscle pain, felt like I had the flu all the time. Two months later I was dx with fms. I did some searching and discovered there are many horrific side effects to this medication. Please if it is suggested to you ,research it thourghly. I wish I had done a better job. The injections eased the pain for a couple of months but I'm sorry to say now I have the endo and fms. Please just read everything you can about any possible treatment. Better yet find someone was has undergone the same type of treatment, see how they did. I believed my dr. when he said the side effects were blown out of proportion.



    Good Luck,

    Pumy
  9. Sandyz

    Sandyz New Member

    I had endrometrosis also. I never make the connection before. I also had a hysterectomy because of many problems I was having. I was bleeding so heavily every period, I was very anemic. My blood count was only 8 right before I finally had the surgery. Make sure your not anemic because that will make you feel very weak and ill. I am so thankful that I was able to have my two children before it all got two bad. I feel very bad for those who can`t have children because of the endrometrosis.

    We have way too much to deal with without adding this to the long list.
  10. tandy

    tandy New Member

    As I said in an above post reply,Its been said that I should get a hysterectomy.I told my dr. that I was'nt ready for such a "BIG" surgery. I have researched the subject in depth and too many have had pain even after a hysto!! I remember when I told my Dr this,his comment was,"when you've had enough of the pain,you'll beg for a hysterectomy".(I thought that was pretty crappy to say to me~)Needless to say I changed Drs at that point. I just did'nt care for his attitude~
    But Thanks for the warning~ I'm holding onto my parts,unless its critical that I NEED a Hysto!
    Alot of my family don't understand my reason for not having the surgery`basically they think i'm nuts for not having it~ I must be stubborn!! lol
    Great day!
    Warm regards,
    Tracey
  11. KayL

    KayL New Member

    I suffered with endometriosis for years. Prior to my DX with endo, I had always had very heavy, very painful periods, frequent headaches and migraines, along with various other pains. My X told me it was all in my head. Once I was DX I had a couple of laparoscopic surgeries for the endo, then I developed fibroids, had an emergency surgery which removed a football size tumor from one ovary, the ovary and the falopian tube. 14 months later, after bleeding for 2 months straight and suffering more than I thought was possible, I had a complete hysterectomy.

    Tandy, I was definitely at *that* point, where I was begging for one. However, the idiot who did my hysterectomy failed to rid me of the endometriosis growing wild in my abdomen so after the surgery I STILL had it and spent the next 8 months with a different Dr. getting rid of it. So finally, all my *female* problems are solved, but the rest of my body fell apart and it was one surgery after another through the year 2000.

    I don't know how much of a connection there *officially* is between all of this, but I'd be willing to bet there IS one. It's the only thing that seems logical and realistic to me.

    Karen
  12. LKD

    LKD New Member

    That was 4 yrs. ago. I have had Chronic fatigue in the past and now think I have Fibro. I also had my gallbladder out this year.
  13. tandy

    tandy New Member

    Thanks for sharing your experience! One question.....you said endo was left behind after a Hysto,so you still had pain.Where else did you have it located?and what surgerys corrected the problem? I know the last surgery I had was just this last August,my Dr was able to remove alot but she left behind some on my colon, and endo laying over a ureter.She did'nt want to risk something being damaged. Something tells me i'll still have pain in my pelvic area even after a hysto~ Maybe I've just learned to deal with the almost constant agony-that It's hard to believe someone has the ability to take that pain all away?? Again,thanks for your reply~
    ((Hugs)),
    Tracey
  14. EllenComstock

    EllenComstock New Member

    Hi, Everyone:

    I, too, have both FM and Endometriosis. I went to a endo specialist who said my only option was a hysterectomy. This was after he had done surgery for the endo (can't think of the name of the surgery-brain fog). He wasn't able to remove all of it. There is still some on my colon, which I have read is not a place where doctors, even specialists, want to venture. The risk of permanently damaging the colon is too great. This doctor also told my husband, "She'll be back for a hysterectomy when the pain is too great". When I told him I thought I also had FM, he said he didn't know anything about it. Hello! He's supposed to be the expert! We all know that women with endo have a high risk of developing auto-immune diseases, FM being one of them.

    I agree with Tandy and some of the other people here. Having a hysterectomy is no guarantee you will be "cured" of endometriosis! I wish doctors would stop pushing this and promising women something that isn't true. Then the poor woman wonders why she is still having problems afterward.

    I know personally how hard having endo is, but please think twice before having this done.

    Ellen
  15. scottabir

    scottabir New Member

    My mother who has CFS/FM had a total hysterectomy (including part of her colon) at 24 for endo. My last OBGYN beleived I may have it as well but suggested I dont treat until after I have kids. I don't have pain too often anymore in my abdomen so I am not too worried about it yet. I am hopng once I get pregnant it will clear up a bit. I dont want to have a hysterectomy if I dont have to. I have seen how it has affected my mothers hormones and forcing her into early menopause. That is something I want to avaoid as long as possible.

    Abi
  16. averilpam

    averilpam New Member

    there was a connection.
    Nearly 30 years ago I contracted Pelvic Inflammatory Disease, which I suffered badly with periodically for many years (I finally had homeopathic treatment which stopped the acute episodes)
    A couple of years back after having some symptoms i thought were like the PID used to be, I had a laparoscopy which showed up endemetriosis annd adhesions. I never went back to the hospital as I didn't want surgery, and as I was becoming menopausal I trusted it would subside which it did. Although I haven't been properly diagnosed, I believe I now have fms. I didn't realise that endometriosis could run in families, I hope my daughter doesn't get it.
    Pam
  17. Jeannine

    Jeannine New Member

    I cannot beleive I seen this message I have had endometriisis since I was 25, I now 39 and will be 40 in November. I was just diagnosed with Fibromyalgia. I actually had two babies over the last 3 years. My youngest is 11 months. The last one was very rough on me and I have never recouperated. I have had so much paid that I have ralted all these symptoms. My pain has recently increased to the point to where I thought I was crazy. Now I haven't had too much trouble with my Endo after I had the kids. Prior to that I had about 3 surgeries and several hormone treatments. I still have painful intercourse, though. I am just now being duagnosed with this Fibro but it is answering a lot of my questions. Some days I am ok and some days I am sad like today. I had a bout with Diarehea and threw up not sure if it is related or not but my muscles were so sore I couldn't go to work today. My kids keep me from getting too depressed. I can't type too long so gott go. My hands hurt. If you would liek you can personally email me at rjjtdm@yahoo.com.