So many are told you can't have endo if you are not having periods.

[Lindle]

This is a copy of one of our Instagram posts - further pages in comments

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[Avourneen in reply to Lindle]

Lindle this is insane, every day there are women posting here who are being told "you can't have endo you are too old" because they are in their 40s. What can women do about constantly being told they don't have a disease that they do have and told their pain is imaginary ? It makes me furious.

[Cailleach in reply to Avourneen]

I agree. I have had no NHS treatment offered other than pain killers since I was in my late 40s as I was nearing menopause and the endo would “ shrink” post menopause. I am now 66, 12 years post menopause and in daily pain, taking as much pain relief as I can manage without being totally doped up.

Only a few years ago nearest BSGE refused to see me as I was post menopause.

[Lily1986]

I agree completely! My stage 4 endometriosis has continued to return and spread and cause daily pain despite the fact I’ve had very few periods since having mirena coil inserted, and then removed after 3 years, left ovary and tubes removed and two separate rounds of chemical menopause. My stage 4 Endometriosis still returns severely and has caused so many problems. Periods may well hurt but I can experience endometriosis far worse pain when not on period. So sad that so little* is known about this disease.

[Bondi64 in reply to Lily1986]

makes me wonder if this was a mans disease how much funding would have been put into it…

[endopolycystic]

extrapelvicnotrare.org/Been reading this, why are doctors so rigid on the retrograde menstruation theory, it would only affect reproductive organs if that was the case.

[Lindle in reply to endopolycystic]

I fully support the retrograde menstruation theory as Sampson proposed it. That is only about origin of potential tissue and not how endo lesions might behave outside the uterus.

[endopolycystic in reply to Lindle]

Im not sure what i think regarding this as its rarely been found in men. So really confused by that one x

[Lindle in reply to endopolycystic]

Evidence shows that the few cases in men are likely related to misplaced Mullerian tissue being activated and altered by hormone therapy - similar to the theory of Mulleriosis for DIE in women. I don't think there is a recorded case of spontaneous endo in a man without hormone therapy but there is always room for individual weird events in nature give the complexity of the human body, DNA mutations etc.

Regarding the RM theory it is to be noted that Sampson only suggested it as one possible source of tissue for one type of endo (peritoneal) and not in any way a cause of the disease. But he has been misquoted over the decades by opposers, mainly driven by a retired US surgeon it seems. This is a copy of his actual statement in his 1927 paper. He sounds to have been the most remarkable, humble man way ahead of his time and it seems tragic that he should have been discredited in the way he has by certain sources that have gone on to pervade the whole world it seems, when there is so much evidence now to support that he was most likely right.

Sampson, 1927

[endopolycystic in reply to Lindle]

Oestrogen seems to be the cause in males x