Nerve Damage

[Hope698]

Hi everyone

My endo was on my bladder and bowel, I had several laps to remove it and in the end I had a full hysterectomy aged 36 (now 42).

A couple of years ago I was told by my urologist that the endo combined with all the ops had caused irreversible nerve damage to my bladder meaning I will have to self catherterise for the rest of my life. I'm now waiting for a date to have 2/3 of my bowel removed due to nerve damage. My surgeon has tried everything to avoid this but now there are no options left.

I'm just wondering if anyone has been through anything similar?

[Avourneen]

Have you got a second opinion about this? I have terrible endo right through the bowel and all the specialists I have spoken to said another op would cause more nerve damage not less. There are some surgeons who will just keep telling you to have more ops even when they won't help. If you have a priavte surgeon more ops mean money for him/her.

I would suggest talking to a couple of different specialists even it costs more just to see if they agree. There's a very good sonographer in London who is an ex surgeon who will give you a very good scan and then an unbiased review of possible treatment options. he is an ex surgeon but no longer carries out ops so he knows what he is doing but will give you honest advice.

I was advised that I might need a similar op but when I looked at the risks of such a procedure and spoke to three other specialists they all said there was no guarantee it would make anything better and there were serious risks it might make things worse.

Get a second and third opinion.

[Hope698 in reply to Avourneen]

Hi Avourneen,

I have had a second opinion and the op also has to be approved by a team at the University College Hospital in London, to make sure therre are no other options available. Unfortunately my surgeon has tried everything over the the last 3 years but nothing has helped and my bowel does not work even with the strongest laxatives. I also have 3 bowel prolapses which will need to be fixed at the same time. X

[Avourneen in reply to Hope698]

Gosh you poor thing. I'm am manging on laxatives but i don't think its a good idea long term. Very glad you have had a second opinion , you have to be so careful.It definietly sounds like you are getting good advice. I hope it goes well and that it really improves things for you. I also hope anyone who has had a similar op will reassure you. I just wanted to make sure you werent being paushed into it by an unscrupulous private surgeon as can so often happen. Please can you post and let me know how you get on after the surgery? And feel free to write to me to let off steam if you are feeling alone with this I know how scary and how wearing it all is. I'm rooting for you and wishing you the fullest recovery once it's all done. XXX

[Hope698 in reply to Avourneen]

Thank you, 😊. It's been really tough to be honest! I'm quite scared of the op but i know i have no other option left. I'll you know how it goes. Xx

[Hidden]

Hi there

Just read your recent post re bowel endo and sounds like you’ve had a very tough time ☹️

I’ve endo since my early 20’s (now 48). I was diagnosed eventually after being admitted a number of times with blackouts with stage V endo inc bowel. I did hours and hours of research and eventually found a specialist surgeon who performed ‘peeling’ of the endo. My op took 7hrs and I cannot say how much that man changed my life. I believe he has now retired but this peeling has now been taught although it has t yet become the standard ‘gold’ treatment through the nhs so it’s a bit of a lottery.

Luckily for me I was insured privately at the time and saw the cost was £7k!!

I am only writing as I really wish I could talk to everyone who is getting poor treatment through the NHS for this horrible condition.

I don’t know your story re surgeon etc, you may have a good endo expert I hope you do, but if not please look into 1. Not everyone is lucky enough to be insured or be able to afford this treatment but knowing now with hindsight the way this condition can ruin your daily life I would pay for it twice over, cancel xmas and never go on hol again!!

If anyone else is reading this please don’t let nhs surgeons keep performing laparoscopies to take bits of endo away - it doesn’t work! Everytime they perform an op it can aggravate the condition to increase.

I hope you get some good treatment going forward and my thoughts are with you and this horrible condition.

All the best

V

[Hope698 in reply to Hidden]

Hi Vik

My surgeon was an endo specialist, he was instrumental in setting up the first specialist endo clinics in the country, I think I've just been incredibly unlucky!

The colorectal surgeon I have now is excellent, he has done everything to try and avoid surgery, even repeating tests to see if a different medication would work better. Unfortunately I'm now out of medical options, nothing has worked ☹.

I'm under the NHS so at least I know they're not trying to get more money out of me! X

[Geordie_girl_77]

I’m so sorry to hear this Hope. I have endo stage 3 but would agree - if you can avoid surgeries please do. My specialist is an endo expert - Dr Disu in west London and always pushes away from surgery as much as possible. Pray for you to be well

[mimilover]

hi

Yes I had the same thing. It took awhile but now I can push really hard to pee . This SUCKS I’m so sorry.