1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Endometriosis, do you have it?

Discussion in 'Hormones' started by Tulip, May 6, 2011.

  1. Tulip

    Tulip Guest

    Messages:
    437
    Likes:
    7
    For the girls obviously!

    I have had endo since I was 14, then developed M.E. when I was 18. Studies indicate that women with endo are 100 times more likely to develop M.E.. They are not sure why and it seems more and more likely that it is an autoimmune disease. This is interesting and just another peice to the M.E. puzzle. As endo progresses it weakens the immune system causing frequent infections (whats new!).

    Mine went away in pregnancy and came back in 2007 when my child was 4. I was told pregnancy often cures it, unfortunately the effects didn't last :(
    taniaaust1 likes this.
  2. justy

    justy Senior Member

    Messages:
    2,550
    Likes:
    2,513
    U.K
    Hi Tuulip, i was diagnosed with endometriosis when i was 22 after the birth of my first child, i was told to have another baby, which i did and again it went away for a couple of years (especially with prolonged breastfeeding) Then at 25 i first had M.E, that was 17 years ago and i since had two more children and the endo went away each time. the last time i was pregnant (8 years ago) i breastfed after for nearly 4 years which again kept t at bay, but this time it hasnt really come back in the same way, but unfortunately after a 10 year remission the M.E is worse than ever.

    I had read about women with Endo being many more times likely to develop M.E but i didnt know it was that high! yes i agree its looking like an autoimmune disease (at least for some of us) i have always been struck by how similar my symptoms are to LUpus, so it wouldnt surprise me if i did have an autoimmune disease, i also get sore swollen joints in my hands when the M.E is at its worse.
    I suppose i was lucky that i could have children, but then i started young and packed them in!
  3. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,437
    Likes:
    1,931
    London
    I didn't develope EM until I was in my forties and had ME for at least 20 years previously. My sympathy to all the women who have had it from a young age as it's horrible.
  4. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    I have adenomyosis with very painful symptoms.

    Typical Symptoms

    Some women with Adenomyosis do not experience any symptoms, while others may have severe, debilitating symptoms. The Endometrial implants that grow into the wall of the uterus bleed during menstration, the same as endometrial tissue bleeds and is discharged vaginally as menstral bleeding. The vaginal pressure can be severe enough to feel like the uterus is trying to push out through the vagina, like the last stage of labor when the baby's head pushes into the cervix. Other symptoms include;
    Intense debilitating pain all the time and/or
    Acute & increasing pain at menstration and ovulation
    Strong 'contraction' feel of uterus
    Abdominal cramps
    A 'bearing' down feeling
    Pressure on bladder
    Dragging sensation down thighs and legs
    Heavy bleeding and flooding
    Large blood clots
    Prolonged bleeding ie; up to 8-14 dais
    Pelvic pain during intercourse

    Note: In many cases, the woman may not have any symptoms.
    Unfortunately, i'm not that lucky.

    (i was diagnosed with endometriosis at 14 but it disappeared after my first child. They found the adenomyosis after my second one - probable cause: C-section)
    taniaaust1 likes this.
  5. Leslie

    Leslie

    Messages:
    29
    Likes:
    1
    California
    I found I had severe endometriosis at age 32. It was another 17-18 years before I was very sick with ME/CFS. I was working up to it for about 5 years or so before the tipping point at age 48-50, full blown ME/CFS. Related? I have no idea. After a complete hyst for the EM at 32 a few years later had my gallbladder out, and went down hill from there.
  6. penny

    penny Senior Member

    Messages:
    286
    Likes:
    134
    Southern California
    Yes, endo here too.

    I was on birth control pills from roughly 17-30, during that time I had regular, manageable periods. Went off at 30 and started developing severe pain (which I ignored). At 32 I got the non-hormonal IUD which triggered 6 months of frequent, long, heavy periods, a rapid increase of pain and the onset of my "I can't function" cfs/me (I had symptoms before this but was fairly functional). They diagnosed endometriosis the same year, removed the IUD and did surgery to remove an ovarian cyst and other 'spots'.

    I'm on yaz now (about 2 years), which my OBGYN prescribes to be taken continuously for three months (skipping the sugar pills) so I am only supposed to have a period four times a year. Though I don't have that many, either b/c I disobey (as you all probably know the combo of pms and cfs is rather dire) or b/c my body doesn't comply. Not sure if this strategy is good because I avoid crashes or bad (because it's unnatural?) but there it is. I no longer have the endo pain, but suspect it'll come back if I go off the bc again.

    Unfortuneately I put off having children till I met the right man - what a mistake! Though untill the cfs/me improves some that's a moot point anyway.
  7. Tulip

    Tulip Guest

    Messages:
    437
    Likes:
    7
    Thanks ladies, very interesting!. I was also reading today that women with this disease, have a significantly higher chance of having a hysterectomy and that we start menopause around 5 years earlier than healthy women.

    Penny, I have found that having a child while having this disease has made things even worse, it has led to much more than just endo. I now have a prolapsed uterus. I would strongly advice to really think twice about having kids with this disease, if ever able. Or at least make sure you have a strong uterus!.

    Btw has anyone had a hysterectomy with this disease and if so how did you go? Did it make the illness worse?. I think I might be heading down this road myself. PM me if you don't want it on the boards.
  8. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    Again, a very interesting post. =-)
    I have a prolapsus uterus, too.
  9. Tulip

    Tulip Guest

    Messages:
    437
    Likes:
    7
    That's not good, but yes it's yet another piece to the puzzle that is this disease. I am actually amazed that research has been done in this area.
  10. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    I also have a retroverted uterus. Do you?
    I had a couple of miscarriages when I was young but managed to get pregnant twice after that.

    I have read that recent data demonstrate that the prevalence of grade 2-4 uterine prolapse for a retroverted uterus is 4.5 times that for an anteverted uterus. It's an interesting fact.
  11. Tulip

    Tulip Guest

    Messages:
    437
    Likes:
    7
    Yes I do have a retroverted uterus, never had miscarriages though.

    That is interesting!.
  12. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    I found out about the second one just because my GP happened to do some tests at the same time.
    Otherwise, it would have gone unnoticed.
  13. penny

    penny Senior Member

    Messages:
    286
    Likes:
    134
    Southern California
    I've definitely thought twice, thrice and more! It's not a decision I'd take lightly, though until I do have significant improvement (this is me being optimistic that it will happen eventually!) worrying about it is just counter productive.


    Is this metaphor or something one could actually know about the uterus?


    Yep, me too :)


    According to Wikipedia:
    and
    I'm not sure if my uterus is strong, but I suspect it's persistent ;)
  14. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    Personally, I would not think twice about having children.
    I had two and they are the most wonderful things that happened to me!

    However, I don't know if my uterus did get back in the right position,
    but I was not able to have my children vaginally.
    After being in labor for 26 hours (for both), the doctors decided to
    do a C-section. I did not want it but my daughter was stuck down there
    and could not breath anymore.

    I'm not sure if it is related to anything we have discussed about here
    but it is worth researching before doing anything.
  15. penny

    penny Senior Member

    Messages:
    286
    Likes:
    134
    Southern California
    Ah, well, if I thought I'd be able to care for a child there wouldn't be any hesitation (they bring so much joy!). If pushing past all the pain, exhaustion, etc. worked, I think I'd be happy to suffer (I feel like I'm used to that at this point, so what the hell ;), but as we all know, that just doesn't work with this disease - the body just inevitably collapses and takes away any illusion of 'choice'!

    My sympathies on your labors (my mom had pretty rough ones as well) but I'm glad you were able to have your children, it sounds like they are very well loved!
  16. Tulip

    Tulip Guest

    Messages:
    437
    Likes:
    7
    Hi Penny,

    Sorry didn't mean to put you off having kids!!. Just thought I would let you know as these are the things people don't usually tell you until after you have had them and you have the problem :rolleyes:

    And yes you can actually get your uterus checked for it's strength before trying to have kids.
  17. ahimsa

    ahimsa Senior Member

    Messages:
    1,046
    Likes:
    904
    Oregon, USA
    Yes, I have had symptoms of endometriosis since college althought I did not get a confirmed diagnosis (laproscopic surgery) until much later. But I knew that I had it because my mother had it. She always told me that her endometriosis pains were worse than childbirth (and she had had 3 kids). By my late 30s, when my pains were at their worst, I had not had any children but I completely believed her!

    I posted once before about the link between endometriosis and other diseases like ME/CFS or Fibromyalgia. Here's an extract:

    Endometriosis is yet another one of those diseases that is difficult to treat and gets no respect (e.g., very little funding from NIH, the amount per patient may even be lower than it is for ME/CFS).
    Ocean likes this.
  18. justy

    justy Senior Member

    Messages:
    2,550
    Likes:
    2,513
    U.K
    Yes in my experience there is not much to treat it.At 22 i was offered male hormones that would give permanent side effects. Adhesions can be removed with surgery (thats if they can find them all) but often grow back. Many women have hysterectomies only to find that they still have problems with being ill or complictions from the hysterectomy. I chose to have no treatment rather than suffer further complications. I also was lucky enough to have 4 children over a period of 12 years which helped to keep it under control. Now im 41 and still have very heavy and painful periods but its nowhere near as bad as it used to be and i dont get the terrible pain inbetween periods like i used to either.
    My cervix is apparantly in an awkward position, but i dont know if that is related to the retroverted uterus thing.
  19. Shellbell

    Shellbell Senior Member

    Messages:
    226
    Likes:
    55
    Tuliip,

    I had a hysterectomy at 40 due to a dermoid cyst and endo. I had gyno issues with painful periods, migraines, and excessive bleeding since being a teen. I was put on the pill and stayed on it until trying to get pregnant, which I had no problems in accomplishing. Despite my dysfunction, I was always quite functional and lived a happy, productive life. Btw, pregnancy always brought me relief from all my hormonal symptoms.

    Post hysterectomy brought on my first mild crash. It lasted 4 - 6 months. My doctor related it to hormone fluctuation and changes from being slammed into surgical menopause. Once my hormones were brought back into balance with biotidenticals, I felt great, the best I had felt in years. However, I noticed negative changes in how I reacted to medications. I reacted to every drug, mainly antibiotics, I took. Not really paying attention to what was going on, I continued to take the antibiotics which lead to a huge crash 2 years later. I suffered an adverse reaction to two that I was taking at the time (both cipro and macrobid) and I am still fighting to recover. This was when I got the diagnoses of CFS.

    Since that time, I haven't been able to balance my hormones and react negatively if I try to make changes. I have excessively high levels of estrogen and testosterone. My progesterone levels stay low and my DHEA has slowly been declining. I believe this greatly effects my CNS issues and the ability to heal my gut.

    Benefits of my hysterectomy - I am grateful that I am out of pain and no longer bleed excessively. Following my surgery, my migraines disappeared completely, until my adverse reaction to the antibiotics. Now they are back, probably influenced by being estrogen dominant. Pelvic pain remains absent.

    In the long run, I often wonder if my hysterectomy has complicated my recovery. My doctors say "yes!"

    Shellbell
  20. cruzgirl

    cruzgirl

    Messages:
    33
    Likes:
    5
    I have severe endo, stage 4. I had it since I was 14. Pregnancy did not give me any remission at all. Eventually I had a hysterectomy, that did not fix the situation, the endo continued, and I got the bonus of severe adhesions. The only benefit is no longer having a period. I too have high estrogen levels, I have not been tested for any other hormone levels. Too many surgeries to mention. I am in menopause yet still have symptoms. I believe each is related, especially my fibro and endo, I believe CFIDS happened later.

    Tired today so cannot write more. Hope this helps.

See more popular forum discussions.

Share This Page