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Endometriosis, do you have it?

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

  1. taniaaust1

    taniaaust1 Senior Member

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    I have a retroverted uterus too.

    I dont know if Ive ever had endometriosis but it wouldnt surprise me as I can get quite severe extreme period pains (to the point of fainting with pain) and I can also bleed a lot... It may thou all be cause I have Polycystic Ovulation Sydrome, I dont know.
  2. carol

    carol

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    Hi Tuliip. I have had ME according to my specialist since contracting measles at 5yrs old. The last 15yrs have been lost to ME. At least I had a life until the illness overcame me. I am now 54. I was diagnosed with endo after having two children. My second pregnancy ended at 20 weeks: missed abortion at apparently 12 weeks. ( I was discharged after having surgery to remove the dead baby still losing pieces of foetus vaginally, plus I had no help. My Midwife was sick, there was no backup.) That was very hard to deal with for both of us. I was sterilised after the birth of my second child because of ankylosing spondylsis causing severe spinal pain during pregnancy. I went on to have heavy periods which necessitated a hysterectomy. I then later had a burst chocolate cyst, and that was when I was diagnosed with endo. My second ovary went walk about in my abdo cavity curtesy of adhesions and finished up the wrong side of it. After a week of unimaginable pain due to torsion of the fallopian tube they finally believed me and performed abdo surgery. It took 7 hrs to sort me out. In my mind I have always believed endo and ME go hand in hand. Look after yourself. We will get well!
  3. taniaaust1

    taniaaust1 Senior Member

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    Sounds like you've been throu a shocking amount with all the gyno stuff carol.
  4. justy

    justy Senior Member

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    Yes i second that. so sorry to hear what you have been through. And yet you sound positive still, thanks for that.
  5. carol

    carol

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    Too much negativity in the world, I don't need to add to it. Besides I have no more gynae worries now, except coming off HRT.
  6. new here

    new here

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    I began to show symptoms when I was 14/15 for Endometriosis. Within 6 months, I became ill with CFS/ME. It has not been until the past 6 months (now that I am 19), that, due to the pain getting worse, we decided to do something about it. So it is believed that I also have a severe case of Endometriosis as well as my severe case of CFS?/ME. I am about to have surgery to get all the bad bits removed!

    I can't believe we're 100 times more likely to have Endo. This can't be a coincidence!
  7. Ocean

    Ocean Senior Member

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    I had read that statistic before about women with endo being much more likely to have other conditions like CFS. It's unfortunate, as if one of those problems isn't bad enough on its own.
  8. nanonug

    nanonug Senior Member

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    I saw your post on the front page so here it goes: endometriosis and fibromyalgia both appear to be associated with mast cell screw ups. For example, from "Increased numbers of activated mast cells in endometriosis lesions positive for corticotropin-releasing hormone and urocortin":

    Abstract

    PROBLEM:

    Mast cells are critical in allergic and inflammatory diseases such as interstitial cystitis, which is often clinically associated with or mistaken as endometriosis. Mast cells had previously been reported to be increased at sites of endometriosis, and tryptase may contribute to the fibrosis and inflammation characterizing endometriosis.

    METHOD OF STUDY:

    This is a pilot study of mast cell numbers and its activation in endometriosis biopsies (n = 10) by immunostaining for mast cell tryptase, corticotropin-releasing hormone (CRH) and urocortin (Ucn).

    RESULTS:

    This is the first report that tryptase positive mast cells were not only increased (64-157 mast cells/mm(2)) in human endometriosis, but also highly activated (89%) in areas strongly stained positive for CRH/Ucn. Normal endometrium was weakly positive for both CRH/Ucn.

    CONCLUSION:

    High numbers of activated mast cells are present in endometriosis sites that were strongly positive for CRH/Ucn. CRH and Ucn may activate mast cells and contribute to the fibrosis and inflammation in endometriosis.
  9. Shell

    Shell Senior Member

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    Interesting thread. I suspect I have mild endo and have done since I was pretty young. I have the retro uterus thing too - and fibroids. I've managed to carry 6 to term and lost 3.
    In peri-men now.

    Pregnancy made the FM/ME symptoms better for a time and i wonder if bf helped?
  10. urbantravels

    urbantravels disjecta membra

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    I was diagnosed with endometriosis just a few months before I fell ill with ME/CFS (at age 41). I had an agonizing year of weird symptoms before the diagnosis was reached -- including fatigue, but not so bad as to incapacitate me. So, when I really fell down flat with a sudden onset of ME/CFS, I thought at first the endo was causing the debilitating fatigue, but my doctor didn't think it was sufficient explanation, so I got started on the ruling-out process for all the other diseases I don't have.

    It was a really horrifying time - the overlap and confusion between endo and ME/CFS, plus all the other testing I was going through on the march of doom toward the CFS diagnosis, plus being on Lupron and going through chemical menopause! Plus all the personal anguish of what was happening with my life; I swear I have PTSD from that time.

    My endo symptoms haven't returned as severely as before, fortunately, but they're still there. AFAIK, my uterus points the normal way. I've not had children.
  11. SOC

    SOC Moderator and Senior Member

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    Does endometrial hyperplasia count?

    We sure do seem to have a mess of gynecological issues.
  12. jen1177

    jen1177

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    Anyone else see it as ridiculous that doctors basically prescribe pregnancy as a treatment for endometriosis? I had a gyno tell me I should have kids to treat my endo. I have CFS and I'm disabled from it. I come from a totally dysfunctional family. I'm not married and never want to be. Can't even imagine dealing with the stress of a family. I would NEVER force someone to have me as a mother. I'm totally exhausted and sick all the time and have mood problems and couldn't possibly be a good mother. And I'd be racked with guilt if my kid ended up sick like me. I thought it was absolutely insane of this gyno to tell me to have children.
    PLUS there is the issue of passing down our bad genes. Which I think is immoral. Like it's the child's duty to endure the illnesses of the parents. I wish people would think ahead more to the consequences of their actions. We might be able to iradicate CFS (and lots of other diseases) if we only could stop sick people from breeding.
    Just something to think about.
  13. SOC

    SOC Moderator and Senior Member

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    That's called eugenics and it's generally considered poor public policy and immoral as well. You might want to look it up and possibly rethink that position.
    penny and Shell like this.
  14. Shell

    Shell Senior Member

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    jen1177 - The gyni shows ignorance and insensitivity. Let's say for argument's sake you were married and wanted a family. Endo can cause serious problems in getting pregnant in the first place, and further problems in keeping the baby if you do manage to conceive. It's certainly true that some women find Endo symptoms get better once they've had a child. I suspect prolactin might play a role and as it's high after delivery to help milk production, it may ameliarate symptoms. Who knows?

    I have to agree with SOC that eugenics is pretty ugly as a policy. Those of us who are disabled, sick or genetically dodgy have a right to life just like "healthy" people. I have some good friends and I've been up close to the sheer nastiness of people's reaction to children with visable disabilities. Until we value the intrinsic dignity of each person we wont get good research or healthcare in ME or any other disease.
    penny likes this.
  15. penny

    penny Senior Member

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    Just rereading this thread. The last time I posted on the thread I was on continuous BC for the endo and said that I suspected the pain would come back if I discontinued the BC. I just wanted to update with what actually happened when I stopped. Basically for my first couple of cycles I had increased pain during menstruation and (I think) around ovulation. Not the worst pain ever, but bad enough to wake me up and cause nausea. But around the third cycle the pain started to decrease and at probably 5 months from discontinuation my pain levels were back to 'pre-endo' levels. I don't think I'd consider myself to have active endo at this point.

    I have no idea what happened, though discontinuing the birth control and the period of decreasing pain coincide with a period of (mostly) sustained improvement in my CFS/ME as well. They definitely feel intertwined.

    jen1177 You're right that it is beyond ridiculous to 'prescribe' children for a health condition, and I'm sorry you had a doctor that said that. Hopefully that isn't the norm. As for the rest - I'm with SOC and Shell.
    taniaaust1 likes this.
  16. taniaaust1

    taniaaust1 Senior Member

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    When I was at high school my friend who was a very sensible 15-16 year old, was told by her doctor to have a baby due to she was having issues with severe period pain (he didnt even diangose endo). I remember her mothers outrage at what the doctor had said to them. .. to this day I still find it hard to believe she was told that thou I know she was.

    Some of the doctors in my town should of been sacked.


    The CFS picture isnt that easy and even if that was done (I personally would hate to see laws like that) I dont think it would get rid of ME/CFS.

    Look at the big outbreaks of ME which have happened throughout history.. there dont appear in those outbreaks to be much in the way of genetic links. 5-10% of people get the illness right after vaccination..so should we say that all vaccination should be banned to get rid of the disease? How about blood transfusions.. to get rid of it, they'd have to be banned too as many get it after blood transfusion.

    How about obese people? I think ive read study about obese people having genes which help them become obese, the genes make them eat more.. which then of cause ends up leading to heart disease, diabetes etc.. Should we stop everyone who is obese from breeding too? Get rid of heart disease and diabetes by banning obese people from breeding :thumbdown:

    The genetic part is only a PART of the thing.

    Did the killing and sterilizing of the disabled, work much at all as far as getting disability rates down in Germany? if so Germany should have far less disablity there in general then the rest of the world due to Hitler.. he did all this.

    A world will never be able to get rid of the disabled or sick no matter how hard they tried. Everyone carries some bad genes be it cancer or whatever.
    Maybe if many chemicals and stuff like that were banned.. that would be more the answer to having a healthier population.

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