What would cause you to develop endometriosis?

[sarahjsdddd]

Is it possible to just develop it, and if so does anyone know why it would happen?
It's looking likely that is what I might have, though I'm wondering whether I could have always had it, I'm 31 now but have been on the pill/implant almost constantly since I was 15 so that could have masked any symptoms?!
I became pregnant in 2018 and was breastfeeding after, my period returned 11 months post partum December 2019. I had one light period then had a missed miscarriage - following this all my problems started, pelvic pain, very heavy periods, all the symptoms (which was put down to the miscarriage but continued until last October) I had several ultrasound & mri last year which showed solid mass near my ovary. The whole year my periods were terrible and between ovulation & my period ending was quite debilitating with horrible symptoms
I then fell pregnant again last October, I've had a follow up mri and the mass is still there, which they said could be endometriosis or a fibroid (don't think sinister as it hasn't grown)
So I'm wondering if it's endometriosis as my symptoms basically go away when pregnant/feeding, basically when I have no menstrual cycle
Has anyone experienced similar? Sorry for the waffling on, just keep thinking about this! It's been a year with no real answers 😥

I had endo for about a year before I got pregnant, it went into remission during the pregnancy and breastfeeding. First period post-breastfeeding was fine, next one was back to full symptoms. Eventually brought under control by using the pill with no 7 day break so no bleeding.

So yes, your experience sounds very like my own. Mine was definitely endo, confirmed by laparoscopy, one pre and one post-pregnancy.

It’s a disease of the immune system, so there may have been a disturbance/change in that regard. I remember a very strong (t-cell modulating monoclonal antibody) drug that was used for inflammatory conditions including rheumatoid arthritis being trialled in endometriosis.

As to why it would develop, I researched that as much as I could at the time, so anything I say is twenty years old! There was a suspicion back then that it may be an immune-system problem.

Traditionally, endo was thought to be caused by endometrial cells escaping into the pelvic cavity, and that these 'escapes' only ever happened to women who experienced endo and doctors didn't have a clue why these escapes happened to these women. (The not having a clue was basically because they put no research effort into finding out.)

Around 2000 the hypothesis was that this endometrial cell escape into the pelvic cavity happened to every woman. The difference between women who got endo and women who didn't was thought to be down to non-endo women's immune system cleaning these cells up, so that they couldn't form lesions. Apparently the immune system not only recognises cells that are foreign; it can also recognise that a cell is from your own body but is in the wrong place. For women who get endo, the immune system is recognising it as a cell of the body (therefore left alone) but is not recognising that it is in the wrong place and should therefore be destroyed.

So if that hypothesis proved to be correct, it would be "possible to just develop it" - if your immune system became less effective for some reason.

I've got no idea if this hypothesis proved to be the case, or even if any research was carried out. After I got mine under control, I put it behind me. For all I know they have new theories about the causes now, but that one seemed plausible to me at the time. But as I say, my knowledge on this is twenty years out of date.

Ooh, cross-posted with Wartigen who looks more informed than me!

I was diagnosed with this at 20 after a big lump could be felt under my c section scar turned out it was just loads of blood sitting there! Anyway done a bit of research and there is such thing as secondary endometriosis that can be caused by a csection, so wondering if that’s what mines was as other than having heavy periods forever never had any other gynae problems beforehand. For something that affects so many women it’s hard to believe how little is known about it!

It’s possible that you could have had endometriosis under control via hormonal contraception for a longtime.
I didn’t know I had endometriosis until I was finally diagnosed 25 years after I complained to the GP re period pains in early teens.
In my case it was always in the background but suddenly got worse (was bedridden) leading me to self diagnose and seek help (surgery x 2 in the end).
It was more under control during pregnancies, on the pill and also during breastfeeding.

Also the retrograde bleeding theory has been widely debunked I believe. I had it on my diaphragm which is an awfully long way to travel (pain since I was 14 there too!)

I had this and yes think the pill : pregnancy helped me
I had awfully heavy painful
Periods as a teenager and pain do was put on pill, ok then and had couple kids and no issues when pregnant or b/ f. Then was ok for a couple years , then periods became heavy again and painful, couple years later extreme pain and ultrasounds showed some cysts and mri showed fibroids and endo
Then i ended up having a hysterectomy and the surgeon said my endo was really bad
I can only guess that pill helped or just a coincidence and couldn't find any def on why some get it and some don't and how it can be different for people who have it.

@donewithitalltodayandxmas can I ask if you had to fight for a hysterectomy? At the moment they're saying my only options for endometriosis is the pill or coil. To me that's just masking thy symptoms when I just want a hysterectomy.