ovary wrong position and pain

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Hello. I wondered if anyone has experience of something like this, because I can't find information despite searching online, and I've waited 20 months now for an NHS gynaecology referral.

My left ovary is in the wrong position - in pre-sacral space near my rectum, according to an MRI for another issue. There were signs of some past bleeding there but nothing else abnormal. I have excruciating pain on the right side (higher up) for an hour or two around ovulation and rectal bleeding at ovulation but neither of them are much of a problem. But I have constant slight "tugging" pain roughly where I think my right ovary would be - it's in a normal position. That's what the referral is for. Standard tests haven't shown anything. I have some small fibroids on the womb and it's moved from tilting one way to tilting the other without pregnancy - I'm late 30s and probably won't have children.

I read about people in desperate pain here and I can see why this referral isn't going anywhere fast in comparison. But it's been years and I'd love to be pain free. I could spend some money to sort it out privately but not a great deal, so I have wondered about paying for specific procedures - moving or removing the ovary? the fibroids?

Medical advice on the NHS so far has been that they don't know if the ovary position is an issue or not. Ovaries far out of the usual position usually seem to be higher up or associated with unusually shaped womb. So I really can't find anything on this specific issue and I find it hard to imagine the NHS investigating it deeply when I can only rate the pain 4-6. I get very tired of it though so hoped someone might have experience or advice. Thanks for any thoughts.

Sorry for a silly basic error : left and right

Left ovary is in normal position. That's around where I have mild pain constantly.

Right ovary is somehow down beside rectum. No pain on right except higher up and very bad around ovulation.

The pain started after a bit after an ectopic pregnancy but that didn't rupture or need surgery so as far as I know shouldn't have after effects. That was in right fallopian tube but doctor said it hardly got anywhere.

I'm sorry to dump all this information - I just can't find any references to this kind of experience elsewhere at all.

Sorry to hear of your troubles. Have you discussed endometriosis with your doctors?

My left ovary was adhered and didn’t move on US examination (not sure what to!) but that was for me the first sign (aside from a very long list of symptoms including severe pain, bowel and bladder symptoms which I now know were endometriosis).

I was fobbed off at this point and ended up going private (I had had pain for over two decades and symptoms were by the very severe so needed answers).

I then had an MRI which showed my endometriosis was extensive. It had stuck my rectum to my uterus and altered the shape. I had fibrosis everywhere in my pelvis and outside too.

I ended up having excision surgery to remove it all and I am a lot better.

Sorry to hear of your ectopic pregnancy. 😔😔
I had a number of miscarriages and infertility too, which I know now was due to undiagnosed endometriosis and adenomyosis.

Wish you the best of luck xx

Thank you - that's really helpful to have a description like that. I thought it must not be endometriosis because that didn't show on the MRI scan but I hadn't realised it could bind the ovary elsewhere so maybe there is something like that going on.

I'm so sorry you had to wait that long for a diagnosis too and about your miscarriages. It is frustrating and depressing not knowing whether there is something that could just be fixed and watching time go by. I'm glad you're doing better. Thanks a lot for posting.

I’m a GP and also thinking endometriosis is a possibility. It doesn’t usually show on scans of any kind and the only way to know for sure what’s going on for you is probably going to be an explorative laparoscopy gynae operation. Unfortunately probably not going to be a cheap option paying privately as a self-payer without private insurance. Worth calling a few places and getting quotes for the cost of a laparoscopy if they agree this is needed (you’d obviously need a gynae consult first as well but the main cost will be the procedure I’d say). In your shoes unless the pain is debilitating or preserving fertility is a huge priority then I think I’d wait for the NHS appt but there is unfortunately a huge backlog with the pandemic I’m sorry. A mirena coil might help with the pain meantime if you wanted some treatment for possible endometriosis.

Thank you - I waver between just waiting and wondering if I'd really regret spending money to sort this out. Worst case scenario it might not get sorted out anyway I suppose. I think if I knew for sure it was likely to work I'd pay.

The other thing about endometriosis is that my periods are fine actually - regular and light and not much pain.

My GP had asked me to wait and consult the gynaecologist on contraception too because I have epilepsy that may have a hormonal link - worst during periods. I'd thought that some pill might help both epilepsy and the pain. But I wasn't expecting to wait so long when we agreed this. So if Mirena might help I'll ask her if I could try it meanwhile. Thanks very much for this advice.