u/Glad-Pomegranate6283

Hey everyone so I have so many symptoms of endo, unfortunately since my periods stopped my symptoms have actually ramped up. Since three years ago, I’ve had gradual loss of clitoral sensation to the point now where I can’t feel any positive sensation and if I can feel anything, it’s a very sharp pain. I also have constant pelvic pain and burning pain in my lower back that gets worse if I’m wearing a backpack for example or sat a certain way. I can’t sit up on hard chairs/regular chairs often bc it sets off my pelvic/back/rectal/vulva pain. I also experience tingling burning pain downstairs and in my rectal area. I also have sciatica pretty much all the time

So I started seeking help for gynae issues around 2020, I was diagnosed with pcos in 2021 so I left seeking further help bc I thought this pain was normal. I’ve been under a gynaecologist for two years and I’ve had four spots during that time with 3/4 A and E visits. I visited an different A and E once which is in a hospital with a bsge centre and they said it sounds like DIE as I was having a lot of pressure behind and on top of my cervix which really hurt. Bc of my symptoms I suspect pudenal and sciatic nerve involvement. I had my gallbladder removed last year which took 4-5 hours rather than 45 mins due to adhesions and they were concerned about me bleeding out. I had an mri in Feb which showed my adhesions have grown back

Anyway yesterday I had my 4th appt, I finally saw the consultant and he referred me for surgery which I’m glad about. Unfortunately he thinks that endo is stopped by contraception (I have nexplanon), I was too frazzled to mention that extra nerves can grow and that endo develops its own hormone cycle. I did ask for a bsge centre referral at my third appt in December but that was refused bc I’m not diagnosed with DIE

I’m terrified they won’t find endo even though I’m near certain I have it, obviously the pain and fatigue is horrible but I’m terrified that they won’t be able to help with the nerve pain/if the effects of nerve compression is permanent. Obviously it’s a very uncomfortable feeling and I’m already on pregabalin for fibro, but as a result of pain and numbness I can’t have sex at all with my partner (we’ve been together since october 2023, I had sex once last June and prior to that, the last time was April 2024). It might sound silly but that’s really impacting me negatively

I’m already under a neurologist so idk if they could help as I don’t have regular appts, I’m just wondering if anyone has any advice to help with this pain. And also I’m so scared in case I do have endo and they don’t even up finding it or they miss any that are touching these nerves. Does anyone have any advice at all please ? Thank you

So after two years of being under the DRI gynae team, I’ve finally been referred for a lap. My symptoms are horrible as I suspect I have pudenal nerve involvement due to sexual numbness and I struggle with sciatica as well. He said he might not find endo, tbh I did ask last time for a bsge referral but the previous dr refused. I am scared in case they don’t find the potential endo just bc they aren’t endo specialists. He did say my mri showed adhesions, which is telling given I had adhesions removed last June during my gallbladder removed

It’s a small chance I know but I’m just wondering if anyone here is under the DRI and if so, how long did you wait ? I was quite emotional bc I was terrified of not being referred so I didn’t end up asking. Thank you :)