Can you have endometriosis without periods?

[LemonVerbenaGeranium]

I know there’s a lot of knowledge on this board so am hoping someone might know the answer to this. I’ve been having pelvic pain since August and have seen all kinds of people to try to get to the bottom of what’s going on.

At the moment I’m waiting for a urology referral but from reading more about this I’m wondering whether the pain I’m getting might be due to endometriosis.

I’ve had endo before, with two laparoscopies in 2002 and 2004. But since then I’ve had a series of mirena coils (and one pregnancy) so haven’t had any periods.

Does anyone know whether it’s possible I’m getting pain from endometriosis in spite of not having had any periods for so long? Just wondering if I should try for a gynae referral rather than urology and don’t know enough to know if that’s a ridiculous suggestion in the absence of periods. I’m 48 if that’s relevant. Thanks in advance!

From what I have read, endometriosis can progress even if you are on the mirena coil or progesterone pills, because your body is still producing oestrogen. Chronic inflammation can also continue to cause internal scarring and adhesions.

Thanks, I think that’s similar to what I’ve read. Maybe that could be my problem in that case.

Yes you absolutely can have it without having periods. It can also be on other organs, bowel, bladder etc. you say you’ve had it before, did you have surgery to remove it? Endo doesn’t just go away, unless you’ve had an ablation or removed by having a hysterectomy then you still have it. Even after excision it’s quite common for it to return. You also may have adhesions from it that are causing pain. I hope you manage to get it seen because endo is awful.

@Peachesandcream444Thanks that’s helpful. Yes, I had laparoscopies to remove it in 2002 and 2004, with a mirena coil after the latter. So I haven’t had any periods since the laparoscopy which is why I’m not clear whether there’s scope for it to have returned. I’m hoping not, as my excellent consultant has since retired so I don’t have a plan of who to see.

I am post menopause. I could not wait for my periods to end due to the intense pain and all of the other symptoms.
They have certainly been reduced, but not disappeared. I still get pain, my bowels are still affected. I think the area was inflamed for so long it is hard to imagine life without it.
I have had other issues and been told the scar tissue remains.
But I can tell you that menopause gave me my life back in many ways.

Thanks @ThisJadeBear, and I’m glad that things are a bit better for you in spite of some symptoms remaining.

Honestly once I got through the hot flushes and other menopause symptoms, the freedom of no periods is a gift.
I never wanted a coil either, by the way, when tough I still get offered one now.

@LemonVerbenaGeranium mine kept returning and I had ops to remove it and also didn’t have periods for years due to having the coil and also hormone injections. I went to see my consultant due to pain and to cut a long story short after another lap that found I was covered in it again along with a fibroid, and scar tissue and I needed a hysterectomy. That helped massively but it’s still on my bowel and I still get pain.
What area do you live in? I can recommend a brilliant specialist if you are anywhere near me.

Thanks @Peachesandcream444I’m in NE England if you happen to be able to recommend anyone nearby?

The one I know is Cheshire way unfortunately but recognised as one of 3 top endo consultants.