Deep Endometriosis - Do I get a referral now to the Endo centre or wait a little longer?

[puzzleprincess]

Hi all, I was wondering if anyone had been through something similar or could offer any advice? It’s a bit of a long one.

So I was diagnosed with deep infiltrating endometriosis following my lap at the beginning of August, and given the POP to help control my pain symptoms that were absolutely ruling my life. Since then, the pill has had a definitely helped stop any extreme pain - I could actually leave the house on my first period after!! But, I now that low heavy ache all day, every day. And I have started to have pretty horrendous leg pain (just at the backs, like a throbbing) most nights. In addition to these, I know that the pill is just masking my symptoms and although I had the lap, I haven’t had any actual surgical treatment for the endometriosis. So, it’s on my mind that it could be potentially progressing.

On top of all of the above, I was told during my lap that my gallbladder was enlarged. I had been having some chest pain/pain on my right and pain at my upper back, which I had put down to IBS at the time. I ended up having to go to A&E one night where the chest pain was so bad, and was given lansoprazole. They said for me to go back to the GP following the months supply if I was still having pain (I am). I also had to visit the GP for antibiotics for a throat and ear infection, which has now given me thrush (yay! hahaha).

My question is - do I put up with all of this for a bit longer or just go GP to get a referral to an endo centre and further investigations on my chest pain? It’s not so bad that I am in major major pain from it, and to be honest I feel like they might think I’m some hypochondriac at this point. I recently moved GP and they have been such a pain with getting appointments and prescriptions. I just wonder whether it will all settle down at some point or not. I’m also conscious of how long the waiting times will be for the referral.

Thank you x

[EndoNorthEast]

Hello, sorry to hear you about your situation! If I was you I would get the referral asap. The waiting times for referral and surgery are so long I would want you on the list now to try and get ahead. I have deep infiltrating endo and have tried all sorts. I had my first lap 14 months ago and was referred onto severe endo centre and awaiting further surgery but still waiting. The waiting is horrible so wouldn’t want to wait until it gets unbearable again to have to wait ages. Things that have helped me are diclofenic suppositories and the prostap injection that has put be into menopause. Funnily enough I have also had to take lansoprazole for a few years now. Hope you feel better soon. X

[puzzleprincess in reply to EndoNorthEast]

Thanks for your reply! Wow 14 months is a really long time, I think I will definitely go back to them and get on that referral list. Thank you x

[Marcia71]

yes you do need to get that referral and gp can do it but many don’t know they can. It’s to the centre directly. Unfortunately waits are really long at the minute so the sooner you get on the list the better. Unfortunately endo tends to just progress and get worse.