nerve damage?

[Blossoms1994]

Hi everyone. I had my first excision surgery in august 2022 for severe Endo and feel like it’s made my pain worse, it’s just constant now and the bad days are so intense.

I was put on the combined pill to take continuously (because everybody knows that’s the solution to everything when it comes to having a uterus…) and in a way it helps because I’m always worse when bleeding, but my gynaecologist has said I shouldn’t be in pain at any other time because he removed all the endometriosis during my surgery.

So I’m now being referred to the pain management team because they think it might be nerve damage that is causing the pain, and if so, it’s irreversible.

Has anyone else been told this before? I’m at a bit of a loss with what to do and how to take the news.

[Avourneen]

I'm really sorry to hear this, it does happen sometimes. I would put in a written complaint to the GMC about the surgeon in question. Also you should not be on the combined pill it will really make your endo grow if you have very bad endo it should not be considered POP pill only. This makes me think maybe your dctor doesn't know what he/she is doing.

If I were you i would go and get a good scan and advice on what you can try to do form a different doctor. Good luck.

[Moon_maiden]

Hi

I’ve been told I have likely nerve damage from the Endo. I find that of Amitriptyline, Pregabalin and Duloxitine meds for nerve pain, Duloxitine works best. I’m still sure I have adhesions around the small bowel as no one has checked despite me asking before each of the last three ops.

If there is, look up practical pain management and endometriosis, you should find an article about an injection in the pelvis that helped one woman. They won’t do it for the abdomen.

I think saying nerve damage is the latest go to in suggestions. I first saw a Gynae in 2019 and asked him about nerve damage, said he hadn’t heard of it. I get shaky from the abdomen and pelvis. After the operation he said there was likely some nerve damage. My Endo had been there likely nearly forty years though.

Be sure in your mind, if you think it isn’t keep pushing until you are.

Hope today is a better day, less pain 🙂