Endometriosis

[Cocopops_23]

I had been going through pain for years and I finally got to the bottom of what was going on I had Endometriosis, which I had surgery for in January and six months later I went back to the gp and they think I have it back this time I have a lot more symptoms I’m currently waiting to go back to the hospital and I’m worried is there anything they can do they wouldn’t do a hysterectomy because of my age although I have three children and I also work full time and make my life very difficult when I’m in pain at times I don’t know what to do with myself, has anyone got any ideas what I can do to help me though this till I have seen gynecologist 🙏

[Moon_maiden]

Hi

Sorry you’re going through it, pain is awful and stops life moving forward.

What painkillers are you taking? I’ve tried loads but find Duloxitine with Oramorph back up, paracetamol and occasionally Diclofenac. Diclofenac is very good but can’t use it all the time.

Some surgeons will do a hysterectomy if things are bad enough. I was over 50 when mine really kicked off stopping life, so a hysterectomy wasn’t an issue. Up to that point I just put up with painful periods. My mum and aunt both had hysterectomy’s in their thirties, aunt definitely had it and suspect my mum did.

Unfortunately a hysterectomy isn’t guaranteed to get rid of Endo, it was thought that at one time, they know better now. There are a lot of pros and cons to look through.

[Cocopops_23 in reply to Moon_maiden]

I’ve tried the normal and the gp wanted to give a stronger painkillers but I can’t have them as they give me really bad stomach cramps nothing takes the pain away just dulls it and I just have to grin and bear it,I just don’t know what to do.feel helpless at moment

[Moon_maiden in reply to Cocopops_23]

Diclofenac is a suppository, works really well. If GP gave you a strong NSAID like naproxen without something like omeprazole it will effect your stomach.

If you want something that isn’t an opiate there is Nefopam. GPs don’t often prescribe it as it’s more expensive than other pain meds.

If you do have more surgery get an agreement with the surgeon they’ll check everywhere for Endo and adhesions and remove them all. Important to include adhesions.

Have you had a referral to the pain clinic?

[Jen_dog]

did they just do the surgery and send you on your way, or did they explore management options with you like the coil, prostap, pill etc? Or even pain and bleeding management options if you don’t want (or can’t have) hormonal treatments.

For some people surgery helps lots for a long time, but for many people it doesn’t. It seems to be common though that they do surgery and then send people on their way as if they are cured when they aren’t: especially if they haven’t actually excised it all.

In the meantime while you wait for gynie speak to your GP about hormonal options (if you haven’t got any already) and ask for a pain clinic referral. Also look at the endo diet (anti-inflammatory diet).

[Cocopops_23 in reply to Jen_dog]

I had my surgery then few hours later when bp come to where I was safe to leave the hospital I went home,I refused to have coil due to having it before n I was very I’ll on it n it didn’t agree with it I have have my tubes clipped . I just don’t know what more they can do but I can’t carry on like this I work in a care home and have three n it effects my relationship