In need of advice for pelvic pain

[rae02]

I was wondering if anyone could offer me some advice. I’ve had pelvic pain for a few years now, I’ve tried physio (NHS and private), chiropractor, osteopath, had a MRI, tried various pain killers (codeine, nefopam, amitriptyline 10mg, 20mg and 25mg, gabapentin of various doses). Last year I had surgery and found I had endometriosis on my pouch of Douglas and peritoneum but was told this wasn’t enough to cause my pain. I also prior to surgery had an ultrasound which I was told was clear but now been told I have polycystic ovaries. I’ve always had problems with my periods from first ever having them I would pass out and the pain was horrendous, very irregular and only the pill seemed to help this as well as having really bad acne. I’ve asked about PCOS but no one seems interested I’ve been told to take pregablin but I’m unsure about taking it heard mixed reviews.

I’m now not sure what more can I do, the pain is bearable at the minute but it does get worse when walking so I wonder if it’s maybe nerve related as I also so an orthopaedic surgeon who said it’s not my joints. Either that or it is gynae related I’m fed up of going to my GP now as I feel like I’m just making it up and no one is interested and i get given just tablets to try which I don’t really want. I just really want to know is it my endo or is the cysts or is it something completely different causing me this pain.

Does anyone have any suggestions? I’m not sure if to just give up and put up with it now.

[Christin_a]

Hello

So the gynaecologists who told you that your endometriosis wouldn't cause pain is talking out their ass!

The amount of endometriosis you have does not always correlate to the pain you get. You could have a couple of spots and be in agony or have it plastered everywhere and barely feel anything. It's not always directly correlated.

I suggest going back to your gp and asking to be referred back to gynaecology. But this time ensure that it's with someone who has a specialist interest in endometriosis, this is a requirement for anyone suspected of or having the diagnosis of endometriosis on the NHS.

Do you know if they removed the endometriosis they found or if they just left it in place? And do you have anything telling you what stage it is? It could be referred to as a number (1-4) or in terms of minimal, mild, moderate,severe. As the latter two mean you need to be seen by specialist centres for endometriosis.

[rae02 in reply to Christin_a]

I was seen by an endometriosis specialist for my laproscopy last year I wasn’t told what stage it is he didn’t even tell me where it was found I had to ask my GP and I was discharged from the surgeon

[Christin_a in reply to rae02]

Okay so I suggest getting a copy of your records from the hospital. Usually if you contact PALs of the hospital you were seen at and ask them how to get your records. As in there it should detail where it was found and your stage. So you know what your next steps should be