Specialist plan

[Lornalost89]

Hi all

After a long long wait. I finally got to meet with a specialist today.

I've been advised to continue with zolodex for the foreseeable.

And that's it ✔️

I feel it's been a long wait and a lot of unnecessary stress when surely a local gyne team could of agreed that?

Advised its better to use the injection than have surgery and also told it will heal any endometriosis and stop it growing but it's not a cure ...which confused me but hey.

I am currently feeling ALOT better using zolodex and a lot of my pain has gone so I suppose while it's working let's roll with it. Xx

[Sunset-lady]

The thing is there are not many options available. If you are under a specialist centre then they can prescribe Zoladex or Prostrap for longer than your gynae department and they'll probably send you for regular bone mass scans and MRIs. So it is worth being with them as they understand the complex nature of this life long disease. I'm on zoladex and can't have an operation - this IS the treatment plan for me at the moment. We need more research and money pumped into endometriosis which affects 10% of us!

[Marcia71]

I’m sorry you have this experience. I would say that zoladex isn’t a long term option as we simply don’t know the long term affects of using zoladex over the 12 months it is licensed for. I would actually question if the person you saw was a specialist. As an mri and ultrasound should have been offered to assess your case now. If they are a specialist working at a bsge centre then they have access to people who are trained to spot endo on scans.

If you’d like more help and advice on what next steps you can take then I’ll link a Facebook group below that can help guide you to appropriate treatment options.

[Marcia71 in reply to Marcia71]

facebook.com/share/g/LtwcJG...

[Lornalost89 in reply to Marcia71]

Thank you! I will join that group. They are a BSGE centre/specialist I made sure I looked into it when I was referred after the battle I have had locally.

I had an MRI in December. Which showed DIE of rectosigmoid etc, specialist happy zolodex will prevent it getting any deeper etc and will heal what was there.

Advised any symptoms I'm still haven't can't be related

Given a prescription for "long term" zolodex & HRT

I'm happy to go with this plan while it's working. My only concern was how long is too long using zolodex as i don't have an end date. I was slightly dissapointment they didn't actually view my MRI themselves and relied on the report written by my local hospital and called it rubbish 🙈

[Marcia71 in reply to Lornalost89]

And to be clear Zoladex isn't a cure for endo and doesn't get rid of what is there - particularly DIE or Deep endo as that (like most endo) produces it's own oestrogen so turning off the ovaries (as zoladex does) won't affect that. It certainly helps symptoms but as it is temporary menopause the long term effects no one knows.