Going NHS/ Private consult after hysterectomy..advice needed

[Nel0987]

Hi all,

In a nutshell...At age 36 I went in for surgey to remove a pesky fibroid that was bothering me for a some time. As there were complications during the surgery they had to go and remove my uterus to stop the bleeding, so it turned out into a hysterectomy. (tubes are also out, but still have my overies)

This is obviously big, but I am absolutely okay with that. The road to the operation in the first place was the hardest bit for me, with lots of disbelief form GP, wrong information been passed on between doctors and faulty appointments. ( I have switched GP now after the op)

On my final check up, the surgeon who was just about leaving the room mentioned ' oh by the way it was Endometrisis'. My response was 'Okay', and that was it! At that point I did not know anything about it and thinking what ever it is....they removed it, so I did not had any questions. TBH the whole lead up to the operation was a bit traumatic, and I just wanted to leave it behind me.

For a few years all was great, painfree, my energy levels were amazing and all was good untill I started to notice issues again. I have the gut feeling its Endo and potentially Peri/Menopause.

Went to GP, had a colonoscopy which was all good, followed by Pelvic Scan ( external & internal) which was also good.

My GP mentioned he thinks its not menopause as I am only 41. I am not convinced by this as they did mention I could go into it ealier. I dont have the 'classic' night sweats etc, but a lot of things from the list I could tick off.

GP thinks its the Endo and refered me to a Gynecologist . A different one than last time. 4month waiting time! I rang the GP to see if he could refer me straight away to an endometriosis specialist instead of a general gynecologist but it would mean it will take 2 weeks before I could even speak on the phone with the GP.

I am wandering what people do with the current long waiting times etc. Do people stay with the NHS or explore going private when this is financially possible? Can anyone recommend any private endo specialists? I live in the North West of England but happy to travel.

Very curious in peoples experience in the above combo and where its lead to.

Thanks in advance

[Starry1977]

I used my works bupa as the service from the nhs was dire. Well tbh it wasn't nhs I'd been outsourced to pioneer healthcare on behalf of nnhs. Supposedly a private hralthcare company but I certainly wouldn't recommend. I'm using Dr kremer at Methley spire in Leeds. He's a endo specialist and was the lead consultant at pinderfields endometriosis Centre. I had a lap 5 weeks after my initial consult where he found stage 4 , I've had further mri and I'm due another follow up in April. However my cover is paid for by work.its cost around 9k so far.

[Cailleach]

We are not supposed to discuss individual doctors on this forum, but there is a Facebook group Endometriosis Guidance and Information Resource UK you could try for recommendations.

Referral to a specialist endo centre depends on the severity and complexity of your endo, I am guessing from what you say that you don’t have much information on that. Might be worth asking your GP what is in your notes, or getting access to your hospital notes (the FB group can advise how to do that too).