To ask what this could be?! End of my tether is in sight...

[HeresMyBrightIdea]

For nearly a year, I've had a weird issue where I wake up in the night with excruciating pelvic pain. It lasts an hour or so, and then dissipates. It's a really horrendous burning/stinging pain.

I've been keeping notes and I've noticed that it only happens when I wake up lying on my front, which I don't usually do, but seems to happen sometimes. I need to urinate as soon as the pain wakes me up, and the pain usually starts to go once I've defecated. It lasts about an hour. I have to deep breathe through it, either on the bathroom floor or in bed.

My GP ordered a cystoscopy first, all clear. Two sets of scans, of the bladder/ovaries/kidneys are also clear. Gynea rejected my referral, as they said I show no symptoms of endo, no painful periods, extensive bleeding, bleeding after sex etc. Just this random pain which doesn't seem at all linked to my cycle. GP now seems to be at a loss... anyone ever had anything similar?! Im getting so anxious about it happening, it's so painful.

PID perhaps? Might not be a gynecological problem either, could be kidney or bladder issues as itself the same area

Just wanted to add that a scan won't show up much. Have you had urine samples taken close to when the pain has not long happened?

I'm not a doctor and I can't diagnose you but

Gynea rejected my referral, as they said I show no symptoms of endo, no painful periods, extensive bleeding, bleeding after sex etc.

Gynae sound like mugs.

Could very well be gynae related.
My period pain was fine, my bleeding wasn't that heavy & no bleeding after sex.

I did however get "recurring utis" with no infection and random bouts of crazy pelvic pain that would bring me to my knees but pass in a few hours. It usually happened on my period (not every period) but sometimes happened at other random times of the month.

Turned out I had a fairly significant case of endo and some lovely adhesions connecting my ovary to my bowel which was the probable cause.

Also could be gastro related?

Hope you get to the bottom of it. Might be worth asking for a gynae referral to a hospital that specialise in endo. There's a few plotted about and you can find them here. Hopefully they'd be less likely to turn you away?

www.bsge.org.uk/centre/

Hope you get to the bottom of your pain.

Have they checked your bowel? Colonoscopy? If you've got adhesions it might show up there...

Ah thank you all. I'm glad there are still options, in a weird way!

The doctor mentioned a laparoscopy last time we talked but after the gynea rejected the referral, she hasn't been back in touch. I'll call next week and see what we can do next. There's been no tests/scans of my bowels... and I'm really scared of it being endo! We'd like to try and conceive next year.

Thanks again

Do you have an IUD?

OP I get the fear around endo especially if you're hoping to ttc soon but firstly, endo doesn't mean infertility and secondly if you DO have it it's better to know now. And if you don't it's also better to know so that if you do struggle to conceive you'll have one thing crossed off the list!

My leaking ovarian cyst came up with similar sorts of pain but you've said they've done scans so that's unlikely I suppose. My endo pains didn't link to my cycle although I have had painful periods since about age 13 (though never realised this until they operated and the period pain improved!)

Have you had any surgery around that vague area? Does sound like it could be adhesions if so.

I have endo and, as a result, a lot of abdominal adhesions. Pregnancy helped by stretching everything but prior to that I used to be woken by very sharp pain just under my right ribs when I had been lying on my right side. If I turned over to my left it eased and disappeared. It turned out to be an adhesion connecting my left ovary to the abdominal wall. Gyni found it during laparoscopy to diagnose. I also used to do a lot of running but had to give up due to the pain it caused in my abdomen.
Adhesions are common after abdominal surgery.