Recent diagnosis

[danmels]

I'm looking for a little light at the end of the tunnel from anyone with stage 4 endo, i was recently diagnosed back in April after 9 yeard - it diagnosed as deeply infultrative and effecting through to my rectum and also adenomyosis to boot. I have been referred to my local hospital but have basically been informed im on the 'never never' wait list where they hvae no appointments so they cant even give an indication as to when i might be seen. Im feeling in a hole tbh, that theres no light or what i can do to speed things up plus it seems to have hit me all at once, what if my fertility is affected. what if this time means i miss out on the chance or what if it continues to get worse and i end up needed life alterating surgery due to its location and the affect on my bowels. Would really lift my hopes to hear some ideas or even just positive stories if your case has or is similar.

[Tangoandmax]

Hello, this sounds a lot like my story. Can I ask how you were diagnosed? If it’s DIE you likely need to be referred to a BSGE centre rather than your local hospital. I’m your age too, and have the same fertility concerns, it’s appalling this isn’t treated quickly to ensure fertility is maintained.

I’ve been fighting for 8 years. My latest referral back into my local hospital was Nov 22. It took a year to get an appointment, I complained about the poor consultations as I was seen by locum after locum who didn’t listen. Once I got a decent consultant she advised an MRI would be best to see what they would potentially come up against during an investigative lap, it showed and extensive level of adhesions/multiple organs tethered together, bowel involvement amongst other things. Andenomyosis too! This led to my BSGE referral. If you can pay for private consult with a BSGE specialist and an MRI this would speed up the process for you (not that you should have to), they could then add you to their NHS list and you’ll be treated depending on severity.

I had my first consult with the specialist centre last week. There is a light at the end of the tunnel, you just have to really fight for yourself. 🤍 I wouldn’t be this far without making various complaints to PALS, so don’t be afraid to do that if needed. X

[danmels in reply to Tangoandmax]

Thank you so much, it's actually a big relief to just speak to someone although I know so many are going through it that actually knows the feeling. I was referred to a private hospital for a gyne consult, was seen by a locum but he was helpful - referred for an ultrasound and then an MRI. The results came through as I explained and he then transferred my care to the QMC which is where I'm currently waiting.

I suppose I'm unsure what would be next to know other than surgery and I don't necessarily want to pay for that or rather don't have the money to pay for a LAP but I guess that would be the next step.

I've complained to my GP and asked if I can be moved to a different hospital with better wait times, at this point I don't care if I have to travel far I just want some treatment before it ends up even worse. I'll explore the BSGE specialist. Again thank you for taking the time to respond x

[Sunset-lady]

I'd go private. At least then they can put a treatment plan together for you. It's around £200. It won't move you up the NHS waiting list (and of course it shouldn't) but it will get you on the right lists with treatment options. It was the best thing I did.