Do any of you wonder of the cause?

I am interested in learning if you think your endometriosis was caused by environmental causes or a genetic defect.

What do you lay the blame on?

Personally, I had normal uneventful periods at the start of puberty, and only got pain after being on and then going off of birth control pills. This was in the early '80's when the amount of synthetic estrogen was much higher than it is now. But my whole life changed with depression, painful periods, stomach disorders, and chemical sensitivities. I would get headaches from certain mascaras and eyeshadows and all of these syndromes have esculated through the years.

So my belief is my endometriosis was caused by overload of synthetic hormones that affected my immune system function and made me sensitive to environmental exposure.

At the same time I had been informed that I had a retroverted uterus and perhaps retrograde menstruation could also have been the cause.

18 Replies

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  • I believe in the most recent theory that the cells were displaced when we were embryos. I started with pains just before I started my periods at about 11. I was diagnosed this July. I think what happens is the longer it is left the worse effect it has on the balance of our bodies. Maybe overtime this has a detrimental effect and the pain/ stress/ period cycles becomes worse. I do think that natural hormonal changes and synthetic hormones play a role though as I felt a lot worse after cycle kicked on again after the birth of my child. I don't think it is caused by anything we have done, I refuse to take the blame for this. I do think that certain things like a bad diet and a general unhealthy lifestyle can make you feel worse. x

  • As my mum also had endo and her sisters also seemed to (not diagnosed as such as they are all in their 80s now and had hysterectomies in their early 40s), I definitely think there is a genetic problem. Personally I also think it is linked to other auto immune problems such as thyroid (I'm also hypothyroid). My mum had an ovary removed due to endo over 40 years ago and, as she says, we don't seem to be any further forward with an explanation of why it happens or how to cure it. Im sure if it had been a man's problem we'd have a cure by now!

  • Hi Marma2010,

    I have to ask, do you know the reason why all your mum's sisters had hysterectomies in their forties. Was that just commonplace at the time for birth control. Maybe they didn't do tubal ligation's back then IDK. Or maybe just because the had such bad cramps and the surgeons back then were more compliant to do hysterectomies.

    It seems a lot of us suffer from more than just this one ailment. But who's to says which caused which or if they aren't all just precursors perhaps to something yet undiscovered in our bodies.

    We tend to stop at the endometriosis diagnosis because it takes so long to get a diagnosis. But what if that is the reason doctors don't get too concerned about our well being. Maybe we are still on the borderline of being undiagnosed for a real cause. Just a conspirary theory i have.

    But to me pain is the bodies way of informing us that somethings not right, and I don't believe in just covering up that pain with suppressive therapy like GNRH drugs or the like. I also don't think we're doing ourselves any good by taking all the pain medication and that, as the commercials for prescription medications blatantly point out, there are so many side effect to be cautioned about that are more detrimental than the disease itself.

    I also find it ironic that my specialist told me I shouldn't be getting bone density scans at my age, 50, because they are worse for me than osteoporosis, yet he's recommending I take GNRH drugs which are as I have been told chemo or progestin based hormones, which cause bone density loss. Maybe he just doesn't want me to prove they cause further bone loss. Cause that would hurt their commissions for pushing these drugs. I'm getting carried away I know!

  • Oh, and I agree with your Mum BTW. I worry that my 21 year old daughter, who is currently on a gluten free diet to control her gastrointestinal pain, is exhibiting endometriosis. She is fully aware of my maladies but probably doesn't want to be in this category. She's convinced for her it is ulcerative colitis or something to that effect. I wish we were much farther ahead by now, I was diagnosed in 1997 but I'm quite sure I had it since I was 16 ish but it was manageable at the time with naproxen. Until naproxen caused my IBS that is. I hope she doesn't have it because it is a long slow painful death in my opinion. Worse for some especially the ones who are incapable of conceiving because of it. But it really robs a lot of a persons potential happiness.

    I know it doesn't kill us. But after 17 years we seem no further ahead, they still fob us off (I'm a Canadian attempting to use your dielect)continuously and lead us on long journeys of discovery, maybe hoping we'll just leave them alone eventually.

  • I also have a retroverted uterus and I took an estrogen based pill for 15 years, which I think is partly to blame.

  • I think it is genetic, there are two other females in my family (that I know have been diagnosed) with it, and my sister has started showing the signs! I knew from when I started my periods that there was "something wrong" but took my until I was 24 to get anyone to pay attention to it

  • I believe its genetic

    i do not suffer endo but my husbands mother had it severely from 1st period age 16 and a hysterectomy age 36

    our younger daughter had severe endo from first period age 16 and at 40 ought to have a hysterectomy

    she has 3 daughters and one of them has had severe endo from her 1st period age 16

    now 19 things are desperate and she is threatened with GnRh injections

    clearly its genetic and its also connected with Hashimotos thyroid which my husband ,our daughter and grandaughter also have

  • Interesting, see I never considered looking at my fathers side of the family history, I know nothing about them as his parents were gone before I was born. I just assumed it would come from my Mothers side only, and maybe things have changed but when it comes to breast and ovarian cancer I thought those were only inherent from the mothers side so I was thinking the same for endometriosis. Feel free to correct me. My Mother never had a period cramp in her life. But my Sister and I both did. And my sister and I both used birth control pills but I don't believe my Mother ever did. My Mothers sister died from breast and ovarian cancer, and I worry that if undiagnosed endometriosis is a precursor to peritoneal and ovarian cancer. There seems to be a lot of indication in research as well but the doctors I've seen don't seem to condone that theory or else they just don't have any interest in the matters pertaining to endometriosis.

  • Just to put you mind at a bit of ease re ovarian cancer link to endo. It is very rare and only atypical endometriosis may indicate a risk factor for ovarian cancer.

    But, having said that, I think it's always better to be alert to these things. I do worry about it too. I would recommend you look at the EFA - Endometriosis Foundation of America for medical videos which brings together Endo surgeons from all over the world who share their knowledge. There is a video about endo and cancer. They are a bit technical and a bit dull but I still think they are worth viewing. It's the main endo charity in the US and does some good work, just as Endo UK does.

  • Hello YellowRose, (are you from Texas)?

    What is atypical endometriosis? Those videos sound interesting, just the fact that specialists are gathering together to discuss endometriosis is a refreshing take from what I've been dealing with. I don't think the GP I'm seeing is the slightest bit interested in helping me for this cause, he was however very willing to send me for scans though until now.

  • Hello there. No I'm from the UK. I do alot of endo research and alot of that comes from America. I would also recommend EndoMetropolis which is a Facebook group dedicated to it.

    And yes, my GP is not interested at all either. On one appt a year or so ago my female GP suggested i have a hysterectomy - clearly didn't bother reading my notes then because I had made it clear on appt i was trying for children. It's just so insulting. Plus the fact that hysterectomy only works for adenomyosis.

  • Thank you YellowRose for your reply,

    You have enlightened me with your mention of atypical endometriosis. I've never heard the term before and I am finding a lot of information I never found before as well. For instance I'd never heard of, the coelomic metaplasia theory. I like learning all I can about the disease.

  • Hi Reallyfedup123,

    I'm not familiar with Hashimoto's I'll have to read up on that.

    19 and being threatened with GNRH If it were my daughter I would not be impressed. Those B@$+erds.

  • Hi, I also tend towards it being hereditary. I had incredibly painful periods from the start and its taken almost 30 years to be diagnosed. My mum had painful periods and she had a hysterectomy in her mid-40s due to fibroids in her womb. Her mum died young (late 40s) and she doesnt really know what from, so we don't know if she also had gyne problems.

  • Hi CharleSays,

    Love the pic of the calico. Absolutely it is herititary that has been proven and by the sounds of things could explain your cause.

    Do you believe in the recent theory that as fetuses our cells were displaced? I don't know much about this I'm only hearing about it recently from here. But I think you're meaning it's in our genetic makeup which differs , I think?

  • Hi givemeananswer, Thats my cat Charlie in the pic! I've only read a bit about the displacement theory, so not sure whether to believe it - it is only a theory, after all! Unfortunately, research into the causes of endo doesnt seem to be a priority - I've conjectured before that maybe this is because it isnt the sort of illness that the media find news-worthy, so it just doesnt get the coverage it needs. Maybe this is partly due to the nature of the illness - it is hidden, so you can't see if a woman has it, the symptoms and so varied from person to person, that its difficult to tell someone what it is precisely and as we know, GPs have a hell of a time diagnosing it!

  • I think my endometriosis is definitely in my maternal genes. My great grandmother fell pregnant at 38 after years of trying I'm not sure of the reason behind her infertility but it was obviously something. My grandmother then had a hysterectomy straight after having her two children (my mum and uncle) because of "gynea problems" as she puts it. Then my mother was diagnosed with endometriosis after having me and my sister they found it from having excessive bleeding. Oddly my mother has no pain considering the extent of her endometriosis which her consultant can't understand!

    Now I have been diagnosed and my younger sister has also began to have symptoms.

    However I have never had a problem with heavy bleeding just pains. I went on the mini pill at 15 and then deprovera for 3 years during those three years the pains started. I had my laporoscapy 3 months after finishing the deprovera but I hadn't had a period in all those years. I finally had a period a year later and since then my endometriosis has been horrific pains up until this month in my 5th month of zoladex dreading when my course finishes!! Mind you I'm now 22 and have never really in 7 years been off a form of synthetic hormone :/

    And I also have a "tilted" uterus they tell me... After all that I'm not sure what has caused it :( lol xxx

  • Hi Alixx11,

    I've heard of that from this forum , Women having extensive endometriosis without pain. I had little endometriosis and dibilitating pain. And it's not that my pain threshold is low because I gave birth twice without drugs.

    Your a young gal, so sorry that you are being subjected to this and I wish they would come up with more responsive treatment.

    Thanks for replying, take care

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