Endo/hysterectomy specialists in SE England?

[Cheesecrackers]

I've been having ongoing issues with my care from a local hospital and getting messed around so much, having to continually chase my care and getting told different things over time and depending on who I talk to. It doesn't feel like my consultant is on the call with my care at all and I've been on the waiting list for a hysterectomy and investigation for endo for over a year (likely D. I. E and possible bowel involvement). Still no date and being totally gaslit about previously being told it would be I'm the next six weeks back in August - now they're denying that even though I was invited in for my prep stuff!Anyway I feel totally let down and have lost faith in it all and my consultant surgeon. I'm wondering about alternatives - switching trusts, or asking for an endo specialist place, or another option?

Does anyone have any recommendations experience or suggestions please? I am beyond tired of this, I've been bleeding pretty much non stop for over 3 years, usually heavy, even though I am now on zoladex, the mini pill and hrt. I feel like I've had to fight for my care every step of the gruelling way and now being gaslit my the hospital too it really isn't doing me any good mentally.

I'm in the south East UK. I'm not working because of this and other issues, and private isn't an option unfortunately.

[twinklebelletee]

Hi lovely, I didn't want to read and run, as a lot of what you have written I could have written myself I am being messed around in exactly the same way - so much so that my last 'appointment' on the phone the nurse was so unbelieveably patronising I ended up having a panic attack when I came of the phone to her and ended up having the week off work as I went to such a dark place mentally I couldnt get out of bed this also led to a month long flare and the heaviest bleed I have had in a little while! I am so fed up of the non continuous care and being passed from one voice to another and never being seen in person just left to deal alone with the odd phonecall every 6 months or so with no follow up afterwards.

I hope you get some answers soon, I am thinking of doing the same and looking elsewhere for support as Im getting nothing from my current 'multi disciplinary' team, we should not be left like this.

lots of love x

[Cheesecrackers in reply to twinklebelletee]

thank you for your reply - I'm so sorry you're going through the same. It is unbelievably stressful. That is awful about the nurse and I would react in a similar way - the impact on us and our mental health doesn't seem to be taken into account at all. A lot of the people I've had contact with seem to be continually on the defensive, just trying to cover their backs and it feels like I'm constantly fighting just to get the basics of care.. like you say it absolutely shouldn't be like this!

I've got a GP appointment tomorrow so I will see if she has any suggestions or comments re other options. But it is sickening to have waited this long and have the prospect of starting again from scratch, which is what I think would happen if I transfer to a different trust.

wishing you lots of luck, I hope it turns around for the better very soon for you - maybe we can keep in touch x

[Damby]

Look up CEMIG Ashford and St Peters. Give their specialist nurse a call. They are incredible

[Cheesecrackers in reply to Damby]

Thank you 🙏

[Eternalwarrior]

Hello my lovely, I am so sorry you are going through this. I had a horrible time waiting to even be diagnosed with DIE. I was just ignored for so many years and told it was all in my mind and I just had PTSD (I had lost a baby born sleeping and had many miscarriages and a long infertility journey!) Eventually, I had an MRI done privately which I took to my GP and was referred to a BSGE accredited centre in the South East for excision surgery for DIE and the surgeons were absolutely wonderful! I was under the care of a multidisciplinary team as I had endo pretty much everywhere, in my bladder and ureter. I don't think we are allowed to name surgeons here, but will PM you the name of my NHS consultant. Severe endo is just horrible and I am so sorry you are going through this. Good luck! xx

[Cheesecrackers in reply to Eternalwarrior]

Thank you 🙏 I've responded xx