Treatment Advice

[Endowarrior1807]

Hi All

I’m 23 years old and was diagnosed with Stage 4 Endo last year with the endo having spread to my bowel.

I’ve been on Provera but that’s not really helped enough and I still can’t do normal day to day things. My consultant said my other 2 options are GNRH injections or surgery.

I’m not keen on injections with them only being a short term fix but I’m worried about surgery.

I’m just wondering what your experiences are and what you recommend/how are you managing endo? I’m really worried about having surgery but I don’t see any other options right now

[ocke2030]

hey! I have bowel endo and the surgery can be a worrying time but having surgery can give you relief for a time .but it does tend to grow back but yes endo a nightmare unless someone has been through it people dont understand can you diacuss with your gynar ir is there a endo nurse endometeiosis uk helpline is great

[Endowarrior1807 in reply to ocke2030]

so would you say surgery does help? I was more keen on taking Provera but it’s not working enough for me

[Cailleach]

Just wanted to check that you are being seen at a specialist centre (BSGE) as you should be with the extent of your endo.

Also whatever treatment option you go for you should also be getting the best possible pain relief to help you cope as well.

Good advice given above to research the options as much as you can.

Xx

[Endowarrior1807 in reply to Cailleach]

I’m not being seen at a BSGE.

There was a mess up with my NHS referral last year and so I ended up giving up and being seen privately through insurance.

The consultant I have is an endo specialist though.

[Cailleach]

If you are going to have surgery done you should ensure that there is a bowel surgeon present as well given the bowel involvement you have.

Have you asked about waiting times to get referred to a BSGE?

[Endowarrior1807 in reply to Cailleach]

Hi

Thanks!

I’m being seen by a bowel surgeon too. The NHS referral is at least 2 years and I can’t wait that long because I’m in so much pain

[Cailleach]

That’s good that you are getting all the specialist help, just a shame you have had to go private, but I know that is the case for many people at the moment. Hope you get some treatment that works for you.