Advice on Severe Endometriosis

[Pirracas]

Hi everyone! Sorry a bit of a long post but I feel a bit lost and need some guidance.

Back in February I had a laparoscopy which showed severe endo with adhesions on pouch of Douglas, both pelvic side walls and ovaries. Severe adhesions of the rectum and pelvic colon. My surgeon advised to take Zoladex until my next surgery which would need to be done at a Specialist Center. After giving it a lot of thought and reading a lot I decided not to take Zoladex as I do not react well to hormones in general (it has really affected my mental health in the past). My surgeon said that no Specialist Centre would accept me without the Zoladex treatment. Has anyone got any experience on this? I accepted it at first but now really doubt that would be the case...

He offered to do the surgery himself together with a colo rectal surgeon but I have been waiting for a long time to hear back (considering that I am going via private insurance) and my Surgeon is non responsive at the moment.

Is there a way to directly contact these Specialist Centres? I am a bit lost in what to do next... Thanks in advance

[Dee_EndoUK Moderator Endometriosis UK]

Hi Pirracas

Good to hear that you have had a formal diagnosis of endometriosis and can now move forward with regards to treatment options.

The specialist centres you mention are accredited by The British Society for Gynaecological Endoscopy (BSGE). The BSGE is unable to offer individual replies, recommendations or clinical advice. Neither can the Society comment on specific doctors and endometriosis centres.

There is; however, a list of Accredited Endometriosis Centres on its website that can be found at bsge.org.uk/centre/ if you're keen to find out the closest specialist centre to where you live.

You may also be interested in joining one of our regional support groups to chat face-to-face with other endometriosis sufferers. You can find out if there's one in your area at endometriosis-uk.org/find-a.... If not, we also have an online support group (separate to the forum).

Wishing you all the best x

[Pirracas in reply to Dee_EndoUK]

Thanks so much for your reply. I will certainly look for the closest center to me and contact them. Have you ever heard before about these centers not providing surgery if. you have not been on the Zoladex treatment before? Thanks

[Purple_Badgers]

Hi Pirracas! I have been diagnosed with severe/deep infiltrating endo and have been referred by my gp to a BSGE accredited NHS specialist endo centre. I have had my initial chat with a doctor at the centre, during which I mentioned that I don’t get on well with hormonal treatments, and they asked me how I wanted to proceed. No pressure to try particular injections or tablets , though I was given the option. I asked for an MRI first to get the best current picture of the situation in my pelvis, then we’re going to have a chat about the results and decide together about the best way forward. I’m hoping for excision/ablation surgery, preferably not removal of any organs, and minimal medication afterwards…. but I will wait and see what they advise! As far as I’m aware, there’s no requirement to be taking a particular drug before they will see you at a BSGE centre - that doesn’t sound quite right to me. Xxx

[Pirracas in reply to Purple_Badgers]

Thanks so much for your reply. It seems a bit odd to me too. I will discuss with my GP to see if I can get a referral for the specialist center. The kind of attention you are having is just what I need!!! Fingers crossed