Painful abdominal adhesions

[Nicole1946]

Im looking to go private in London to have an adhesionlysis since the NHS ( both the UCH and the Royal Free ) are refusing to to operate me;I have so far only had 2- one twenty years ago and one 11 years ago both were very successful but i cat seem to convince surgeon on the NHS to do an op so investigating private surgery either in London or France. Any ideas ?

[Schroedie]

Might be worth asking about surgery in Calais. The hospital there was geared up for English patients so it's worth asking

[Nicole1946 in reply to Schroedie]

Yes I am thinking of making inquiries in France ( in the south where some of my family live) Im fluent in French so no problem there my father was French and I was brought up there but no longer have French passport only an English one. I will look into this avenue but fear I will encounter the same problems as here.

[Schroedie in reply to Nicole1946]

I enquired about Calais as I was told I needed a hysterectomy and it was taking way too long over here. Eventually I decided against it as I've been managing fine with pessaries and physio - and it wasn't clear whether the NHS would fund it as I'd already been diagnosed by a consultant here. But they were easy to deal with, quick and efficient (and I'm afraid my experience of Gloucestershire was anything but quick and efficient) - I was very impressed

[Nicole1946 in reply to Schroedie]

and do you know what hospital i was in Calais by any chance ?

[Schroedie in reply to Nicole1946]

Haven't found my notes yet. I'll keep trying

[Schroedie in reply to Nicole1946]

Hi Nicole, sorry it's taken a while. It was Calais Hospital I talked to. There was a guide from the NHS South Kent Coast CCG which gave a lot of detail. Whether or not you can still use it is another matter with the Brexit farce continuing, but it might be worth looking. I didn't get very far with enquiries as I'd been diagnosed by my NHS consultant so I'd have to have gone private, but I was impressed by the can-do attitude of the French compared to the English approach!

Good luck, Jane

[Nicole1946 in reply to Schroedie]

Thanks Jane I will look into it-I may go private in London, although even private they are reluctant to do an adhesionlysis because of possible complications. I have an appointment in July with the surgeon we will see, the pain is manageable at the moment and as soon as lockdown has ended i will go back to Mayan massage that helps a lot. Thanks for your reply.

[Schroedie in reply to Nicole1946]

No worries. I found this group so helpful when I joined as I didn't know where to go for help. My GP and local hospitals were useless! It shouldn't be this hard , should it? Keep fighting

[Nicole1946 in reply to Schroedie]

Oh yes you should By GP is very sympathetic but hospitals are useless and surgeons for the most dismissive and rude and very patronising especially with women- Its frightening how little has changed in 20 20 ! but I will persevere with the UCH and the Royal Free ! thanks for your mea sage and you to continue the good fight.

[Skye22]

Have the NHS explained why they won't perform surgery?

I had multiple surgeries (13) which left me with adhesions on Bowel, bladder, pelvis and abdomen. I was reduced to spending most days in bed as the pain was extreme. I had previous surgeries to separate adhesions but this was counterproductive as any surgical procedure will generate more adhesions a catch 22 situation.

My consultant then, explained he could do no more surgery as the risks were too high for serious complications, I felt fobbed off and abandoned.

Fast forward 2yrs I felt I was dying with chronic pain and went down to 7 stone.

Stroke of luck had private insurance through partners work. Advice was they could see how ill I was and they wouldn't know just how bad adhesions were until they operated but STRESSED COMPLICATIONS WERE LIKELY.

Long story short, took the chance and went ahead with surgery I was so desperate. I awoke in intensive care having been cut from abdomen down to pelvic area. Was there for 6 days. The pain from recovery was terrifying and it took me a year to recover.

Was well for 10yrs then it started all over again only much worse. Now have pelvic, Abdominal, bladder and Bowel dysfunction caused by adhesions, taking a lot of meds and this time there is No surgery which to be fair I was so traumatised by the previous recovery I would definately not go through that again.

Have NHS Explained the risks?

Apologies for the long post and hope you decide what's the best treatment for you, it would sadden me to think that someone else would have to go through what I did. Stay well and be strong.

The consultants name was Dr McCourtney leading colorectal surgeon in Scotland. My surgery was 14yrs ago so don't know if he is still in practice. Good luck.

[Nicole1946 in reply to Skye22]

Thanks for your reply Yes the surgeon has explained the risks and Im prepared to take them as I am 73 and would just like a few years of being pain free. Im under a very good surgeon at UCH Mr. Cohen apparently one of the best in Europe. Although he can be very rude.My adhesions are no way as bad as yours. I am so sorry to hear about your struggle. It seems that they have less fear of operating in France and Germany. I do work full time but struggling with the pain at the moment and sick of being on liquid morphine. Im also under the Royal free and in the past month have ended up there in A and E with the pain four times, some of the surgeons were fine a couple just very patronising and dismissive and treated me as if I was ignorant. They say no surgery at the moment. I think that when one has adhesions you end up knowing as much as the surgeon through the research that you do. I was in intensive care the last op but only for one day. I have had in the pas month had 2 CT scans 2 X-rays and a colonoscopy and everything is OK but they can't see the adhesions which make me thing that they are not that bad. I am going to push for an op at UCH and take the risk or go private which they are reluctant to do because of giving a fixed price and complications that may issue. Not a very good time to have this at the moment with Covid as they are only doing open surgery but they said that things will start moving again in July. But thanks for your reply.

I have been referred to the pain clinic so waiting to hear from them but I think I will be fobbed off by them, I have regular abdominal massage well before Covit and hope to go back to it soon.

Thanks so much for replying

Nic

[susieqblue]

My obgyn is doing endo surgery and a hysterectomy tomorrow. I can relate. I have so much scar tissue with endo. I am stage 4 endo. That is the worse. I get so much pelvic pain I have lost weight and so much pelvic pain.

[susieqblue]

So sorry to hear anybody suffering. I have a great obgyn womenssurgerycentertn.com/www