endosalpingiosis

[Beeee2023]

I have endometriosis, recently also been told I have Endosalpingiosis which I’ve never heard of before. Has anyone got this or know anything about it please??

[Purple_Badgers]

Hi, yes apparently I’ve got this, but I don’t know much about it. In my head, it means endometriosis of the fallopian tubes/ovaries?? I couldn’t find much information on it when I looked a couple of years ago. It also hasn’t come up as a topic with my gynae team, though I might ask about it if I remember!

[Purple_Badgers in reply to Purple_Badgers]

OK, just googled it afresh - it’s actually fallopian-tube-like tissue in the wrong place, rather than endometrial-like tissue. So similar but different. Not a lot is known about it and hardly any research seems to be done on it. Apparently can cause pain, infertility, neither or both. So again, similarly to endometriosis, the effects of salpingiosis can vary widely from person to person. There are specific support groups on Facebook, which I have just requested to join as I am interested to know more.

[Beeee2023 in reply to Purple_Badgers]

Yeah I’ve googled it and as you said there’s not much about it, by the looks of it seems quite rare. They have found it in my tube, uterus and I’ve had endometriosis removed in surgery and adhesions My gyno has suggested injections that will basically put me into temporary menopause I don’t know what to do really☹️hope your okay

[Purple_Badgers]

I’m actually on one type of those injections (mine’s called Prostap) while waiting for endo surgery & hysterectomy. Plus Tibolone tablets for HRT, which counteracts some of the worst menopause-like side effects of the injections.

Not having periods has been fantastic- a huge relief. I won’t pretend it’s all wonderful, as I still have pain, bowel & bladder issues, but I can cope.

I guess the endosalpingiosis in my case has been a secondary issue to the endometriosis, and my “treatment” for it will be the hysterectomy (tubes & ovaries coming out too) and the excision/separation that is planned for me.

I don’t know what they would do about the endosalpingiosis if I wanted to keep my ovaries / preserve my fertility. (I’m a lot older than you though, and that ship has sailed!) Maybe they just perform excision on it?

Wishing you the best of luck anyway, whatever you decide x

[Beeee2023]

only just came back on this but thank you so much!