Oh MPB I'm so sorry you're in so much pain. It's the most hideous thing to have wrong with you. Anything else you could at least get some sympathy for but it's not even easy to talk about it with close friends I find. And because you are not actually in danger of dying from the damn thing, the NHS seems to put you on the time wasters list. Totally unfair.

But hang on in there buddy and you will get back to normal life some day. When you have the strength, make a pest of yourself and get in to see that surgeon as soon as you can. Wishing you strength and relief soon. x

Thanx BB I just get so down when the spasms start and there is no pattern as to what makes one day painful and the next day agony...I have no shame lol I tell everyone but because I look ok they think I am exaggerating the pain.
I'm hoping when I see the surgeon Friday he will give me some hope
It does help knowing their are people who both believe and understand the unremitting pain of this awful thing x

Fingers crossed you get some answers and help in Friday. It must seem a long way off though. What painkillers are you using? My GP gave me Naproxen which helped a bit. Sending you vibes of hope and courage x

My GP is pretty useless...she says paracetamol and ibuprofen are all I need...can't take ibuprofen makes me feel sick so I'm taking just paracetamol with cocodamol at night...don't want to get bunged up...so not much pain relief really
Yesterday was a bit better as I didn't go to the loo so that helped.
Thanx for the positive vibes
How is your recovery going hope it's all great x

Hi there,

In the UK the NHS have a set line of treatments which they prescribe before LIS and one of these is Botox injections - the reason they insist on a few Botox injections before LIS is because it works out considerably cheaper then LIS which requires a hospital stay, anaesthetists, etc.

If you're paying privately you can fairly much just opt for LIS and forget about Botox altogether

For the pain have you tried Lidocaine? Presume you've also tried GTN too? For me the best pain killer was to go and sit in a warm bath for an hour or so once the pain started

Davo

Hi Davo,
Thats pretty much what the surgeon on the nhs said to me...he even said if i was a private patient he wouldnt really recomend botox, just seems wrong to put money over common sense.
I use GTN which some days works really well and others not very much. Had another awful night last night 3 trips to the loo didnt help lol.
Yes the baths are the only thing that works...but i must admit i dont think i will ever have another bath again if i manage to heal this...too many bad memories now lol

Hi,

Yeah i don't like to quote the Botox stats on here but i find most people who have Botox end up having LIS anyway. My consultant was Mr Alistair Windsor in London (I think most of the UK based people on here go and see him now!). We had a long discussion about both procedures and didn't really recommend Botox - he said if he was to have the op himself he wouldn't even consider Botox unless LIS wasn't an option.

How long have you been suffering for?

Davo

I have had this since August last year and to be honest it's nearly broke me...I thought I had a high pain tolerance...delivered two ten pound baby's with no pain relief and passed a few kidney stones in my time but this AF has given me a new concept of agony.
I am going to see a consultant that also specialises in IBD as my bowel itself is rather sensitive so want the surgeon to understand that too. Going on Friday with only a few questions...will lis stop the spasms and how long is recovery other than that I just want the pain gone now lol

AF is pain that nobody can understand unless they have experienced one themselves. It's excruciating at times and i remember having some awful experiences with the mindset that my life was almost ruined.

When it was at it's worst i would always tell myself that it's just a tiny little tear and nothing at all serious. Just like the ones you get on your lips when they go all dry in the winter.

AF is of course not chronic so hopefully your journey will be over soon and you'll get back to your normal self again soon. My surgery was in 2012 and i've felt great ever since.

Davo

Yes I agree that you have to have experienced it to understand...I mean like you say it's just a little cut for goodness sake, how are friends n family meant to know the agony of the dreaded spasms
I'm hoping that once I have had the op I can go swimming and do my yoga again and that I can go to the cinema and sit like a normal human being.
It's great knowing people have been in this pain and then can get back to normal...I'm sure I can as if I manage a day without going to the loo my pain goes. So fingers crossed for tomorrow...hopefully I can have the op soon
Do you mind me asking how long your recovery was please