Specialist Centres - waiting times?

I was diagnosed with stage 4 endo back in January - my journey to that point seems to have been pretty predictable so I won't bore everyone with all the details. My pain had reached the point where I was collapsing in public and having to go to A&E for pain, bleeding from the bowel, persistently anaemic. It wasn't until I was found to have raised CA-125 after a trip to A&E that I was able to get a gynae referral and diagnosis. I have extensive disease, multiple cysts, adhesions. The consultant said he would treat it when i had the first lap in January but basically put the camera in, took a quick look, had an 'oh sh*t' moment and didn't remove any of it.

I've had 5 shots of decapeptyl which I am coping with OK - I am getting enough pain relief from it to make it worth it. The gynae I was originally referred to said all he could offer me was a hysterectomy + removal of ovaries but that he didn't really want to do it due to the degree of bowel involvement that I have. I was referred to the endo clinic at UCLH back in May and have today received an appointment for September. SEPTEMBER.

Is this a normal wait for these clinics? The decapeptyl isn't working 100% and I am still having bleeding and pain when my period would normally have shown up and I just don't know where to go next.

6 Replies

  • The consultants are very experienced at UCLH, hopefully you will receive excellent treatment there. I know one of the consultant broke his leg so was off for quite a while maybe that is causing the delay.

  • Hi there, I was referred to the UCLH centre in April and got an appointment for August. However I got in touch to query my appointment and ended up being offered a short notice appointment in May. I've now got a surgery date for September which is great. It might be worth calling to see if there's any cancellations or earlier appointments. They were really good there, the endo nurse was great and I got a really detailed ultrasound. Fingers crossed you can get an earlier appointment. X

  • September sounds like it's within the 18 week period, you could always call up and see if they have any cancellations. They are excellent there but as Stella said, one consultant has been off sick and the other on paternity leave. Rescheduling all the Drs strike app didn't help as mine got put back by 2 months! Hope you get seen soon but would call the appointments people to see if there's anything sooner.

    Hope all goes well xx

  • Thanks everyone, I rang them yesterday when I got the letter and they said that all june/july clinics had been cancelled and September was the best they could do. I will continue to ring to see if I can get a cancellation but the appointments dept at uclh isn't staffed by the most helpful of people :/ They already misplaced my original referral for almost a month and I had to have another sent through (as well as emailing copies of the original letter) and be really pushy to get the Sept appt. Doesn't inspire much confidence :/

  • They probably have to clear the back log of existing surgery patients before seeing any new patients. Otherwise will just have a massive wait between consultation and surgery date.

    Keep checking and make sure your September one is not dropped or cancelled.

  • Well this morning someone from there rang me and said they couldn't accept my referral because it came from a private hospital (where I was being seen as an NHS patient) and they needed a referral from my NHS GP. The person I spoke to is now trying to find out WTF is going on. So I have no idea if I even have an appointment or not.

    Talk about the right hand not knowing what the left is doing.

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