Unsure what to do!!

[Bambi103]

Hi all, as like most of you I was misdiagnosed for over 8 years. Finally July 2019 i was diagnosed with severe endometriosis, which has stuck my bowels to my uterus and also affecting my ureter pipe. In August, after having a MRI I have been on the complex waiting list (as I need 3 specialist surgeons) for a total hysterectomy with bowel separation and potential ureter separation also. Unfortunately due to the pandemic all surgeries have been cancelled and I'm still on the waiting list, no 11. Probably like most of you I have totally understood the situation and continued to try and cope with my pain and symptoms. From October 2019 I have been on prostap injections with HRT with Tiberlone and been going to the doctors every 3 months to have these. Recently my pain and symptoms have got worse to where I feel like it might have spread to my diaphragm also . However, for over 5 years I have been suffering from extreme pain under my ribs to where the doctors would be unsure to why and never followed it up. Since I've been reading your posts I released it could be endometriosis on my diaphragm and plucked up the courage to ask for a phone consultation in January this year. After speaking to him he said he was going to put me on the priority list and fight for my surgery to be done asap (before end of Feb) but knew this was a long shot as at the moment, only one complex surgery will be done each month.

After much debate as I don't like making a fuss, I have rang up the consultant's secretary on Thursday and have now asked for another MRI and also a bone density scan due to being on the prostap injection for over the year.

My question is how much should I continue to ring for answers or the appointments I desperately need to put my mind at rest. I so desperately need my operation, like you all I feel physically, mentally and emotionally drained. Thank you all in advance x

[Bambi103]

I forgot to add that I have also got 6cm cyst on my right ovary (measured in 2019). In July 2019 I had a lapascopy to where he confirmed the endometriosis but couldn't preform an ablasion due to the severity. I was advised and happily agreed for a total hysterectomy.

[USgalwthendo]

Honestly I see nothing wrong with contacting your docs office and asking for what you need. We are all in the same boat and all in understanding of the current situation (COVID, long waits etc). But you can be assertive and understanding at the same time. Best wishes to you

[Bambi103 in reply to USgalwthendo]

Thank you for your reply. I will ring again tomorrow. Fingers crossed I get an answer of some kind lol x