Where do I go next?

[SufferingSilently9]

Just got home from my gynaecologist clinic appointment and i feel more lost than before.

My appointment ended up being with my original consultant and surgeon, which initially shocked me since I thought I'd been taken on by a different gynae (who I preferred as the new one was female, not male like my surgeon consultant person.) He basically said he has no clue what to do as he couldn't find anything during my lap and something would've shown up if anything was there. My mother came in with me and asked what I am supposed to do, just carry on living on pain meds and a hot water bottle and he said "basically yes."

I have no diagnosis and no help, I'm always aching and tired to the point my parents think its developing into ME instead of Endo and now because this Dr has said he would've found an issue if anything is wrong, I feel like there's another dead end for me and more confusion.

I'm fed up of not knowing what is wrong and male doctors fobbing me off and not doing anything further - my mum was shocked by his "I've given you surgery, why would you need an mri?" attitude when she asked if I should have a scan of some kind. His only further offer was 'forced menopause for 6 months' but after a quick run through the side effects, my mum declined it faster than I could!

I don't know if it is endo, possible adeno or just undiagnosable chronic pelvic pain...

Thanks for any advice, I'm so done with these issues now xxx

[Thecraftyadder]

I'm so sorry to read that. I've suffered since my teens, had a 'negative' lap with a general gynecologist about 9 years ago. Was given no further help but things deteriorated and last year I paid to see a specialist privately. I went on to have a laparoscopy with him and he found deep infiltrating endometriosis. Finally a diagnosis at the grand old age of 37! I don't have any on my womb or ovaries though and he's sure it was missed during my first lap. I've had constant right sided abdominal pain since I was 19. He said endometriosis starts growing when you begin menstruating but it can be microscopic when you are young so harder to spot. He also explained that the is no correlation between the amount you have and the pain you get.

Just because they didn't see it doesn't mean you don't have it. Do you have any further follow up appts?

As it was suggested before that you may have deep endometriosis you could try and find a specialist and pay for a private consultant (this can be up to £200) and it might require travelling. (I live in Ireland where there arn't any so flew to England to see one). If they feel you would benefit from another laparoscopy or an MRI you can ask them to refer you on the NHS. Or you can try and treat it as endometriosis for now by looking into diet and supplements that may help and possibly going on the pill if you're not already. I got some relief on the combined pill for about 18months after my first surgery till I had to stop it due to side effects.

I understand the frustration, but don't give up on getting a diagnosis

[SufferingSilently9 in reply to Thecraftyadder]

I initially went private but got referred back to nhs with the same consultant who I may see again in 6 months.

I'm going to try looking at diet but I struggle to keep weight on so eat large portions etc and then end up bloated just to maintain my weight.

I hope my Brevinor doesn't become ineffective as its the only thing stopping the bleeding at the moment...

[princessk09]

Hey, you could always get a second opinion but it would mean going through the whole thing of waiting, seeing another gynae, possibly having surgery etc

Was the surgeon an endo specialist as sometimes general ones can miss it.

I’ve currently started Zoladex and the 6 months treatment of going through menopause and I haven’t had any symptoms yet. It’s the only option left for me to try but I’m still waiting for it to hopefully stop my period as they are getting worse again. xx

[SufferingSilently9 in reply to princessk09]

They wanted me to try Zoladex but my current pill has stopped my periods so I declined it as I didn't want the side effects. Plus you can only do it for 6 months whereas my pill has stopped it for over 7 months already.

I thought my surgeon was but now I doubt it...

[princessk09 in reply to SufferingSilently9]

I’d probably go back to your gp and ask to see an endo specialist however they may not do much if you decline temporary menopause. I tried to avoid it for 2 years but now I have to do it xx