FROZEN PELVIS

[Endo71]

Hi, I saw my surgeon today, follow up from laparoscopy, hysteroscopy and ablation two weeks ago. I knew my endometriosis was severe as he told me after the operation. Today I was told I had frozen pelvis and surgery was not an option as it is too severe and risky to perform any surgery. My only option is injections to try and bring on menopause and stop my ovaries from working. I will be having this for 3 months and seeing him again to see if I continue for another 3 months possibly a year. Has anyone been diagnosed like this and can you advise what the long term options are please? This is a private surgeon as after being diagnosed on NHS three years ago following a trip to A & E and emergency laparoscopy, they stitched me up and haven’t treated the endometriosis since, hence we used my husbands work private medical insurance but the stage is now severely spread and surgery not an option.

[Tillyfloss]

Hello. How you feeling? Firstly was the surgeon a bsge specialist? In may the grade 3 chocolate cyst diagnosis I'd had in September turned out to grade 4 deep infiltrated endometriosis with large cysts and a full grade 4 frozen pelvis ( the hospital I was treated in grade frozen pelvis 1-4 like endometriosis but she said it's just there way to record it's not the same every where). I was lucky that I was in very talented hands and they did manage to remove the various cysts and a lot of the endometriosis. They couldn't remove a triangle between my bowel, bladder and womb as it would be to risk. Like you I'm having an injection for 6months, we are investigating ivf as we'd always wanted another child but if that's not an option I'll either do injection with her or birth control pill. Are you on amityline? Helped me hugely with the permanent hip pain. Good luck getting answers. Xx

[Hidden]

I have Stage 4 frozen pelvis and I had excision surgery with a Endometriosis specialist and a bowel surgeon at a BSGE centre so it should be possible to have surgical treatment. It may be that this particular surgeon isn’t confident of doing your surgery but it should be possible within a BSGE centre xxx

[Endo71]

Hi thank you so much for your replies. Do you know how I get referred to a BSGE surgeon? My current surgeon is private, would he recommend a surgeon? He did not offer surgery or referral just to go on injections. Thanks for your advice.

[Bella29 in reply to Endo71]

Hi. If you go to the bsge website you can do a postcode search to find your nearest hospitals with surgeons who are on there. Then you can ask to be referred or contact direct if private. My consultant didnt tell me about this, but I discovered it on this site and now I know I have 2 potential hospitals.

I looked to to Clear Passage too but was dissuaded by reviews of painful experiences. I now see an Arvigo practitioner who uses myofascial massage. It is painful the night after a session, but I think this shows it is doing something.. absolutely no way I could have handled 20 hours a week treatment though by CP and theirs costs £4,600!

Dian Shepperson, Jessica Munane and Wendy Laidlaw have all written books and diet recommendations for coming back from Stage 4 when surgery isnt an option for whatever reason. Good luck x

[Ugne]

Hi Sheannaday, I have frozen pelvis too, been told it would be too risky to have another operation. I haven't been referred to BSGE centre either. I'll consider this route if I get in bad pain.

Another alternative is Clear Passage massage therapy procedures, which treat frozen pelvis. They're pricey, but maybe your insurance would pay for it.

Good luck researching your options x

Ugne

[Endo71 in reply to Ugne]

Thank you, I will research this x