Health Organization for Pudendal Education

The fact that your MRN showed nothing is rather interesting Janet. Was that a Filler one ? sorry you may have said. Just goes to show tho'!.
The placement of the nerve block may help the Bristol team decide on where your entrapment is Andrea ?? not sure if they can be that sophisticated however. Then again, Mr Dixon may have already noticed the condition of the nerve at the level of your op. That would point to a problem above there perhaps.
Obviously it will totally be your decision. Just ask all of the right questions.
Helen

mr dixon on internal examination said the problem is on the left side where the pudendal nerve is, all the problems i have had with burning and pain have been on the left side, strange when i had my hyst all those years ago one of my ovaries was stuck down on my pelvis on the left side and this new surgery for prolapse etc mr dixon said my colon was stuck down again on the left side and that there was lots of adhesions and he took most of the left side away, do you think there is a pattern emerging here? i am slightly worried about having a nerve block as i dont want another flare they are awful does that always happen?

No, not at all. I have no figures for you but there are many people who don't have a flair of symptoms after an injection.
Helen

I am one of those that had no problem with the nerve blocks except the unguided in the office was painful when he was injecting. He said the more pain the closer they are to getting it right - don't you just love it. Fortunately I had more sedation so the guided was painless. The MRN was not Filler. It was done by johns hopkins review two doctors there I think organized the algorithm, however Dr Marvel said the MRN was being done "to rule out other things" so I do not thing there was any plan for it to recognize PNE.some things are a mystery to me and honestly I went through the pre-surgery under the old motto of just going along with the medical info I was getting from PT and Marvel. I think I found and read this site info afterwards so no idea that I might be going in a wrong direction although I appear to have made an ok decision.still hoping for less pain and more capbilities but I dobelieve avoided the 24/7 pain level 10 I could have been headed for pre-surgery.
Janet

its nice to know i may not have a flare, i really dont need that at the moment as since my surgery i have been having an ibs flare, mr dixon did say that because i had adhesions my colon was stuck down to my pelvi, yuk, so i suppose an ibs flare was inevitable, has this happened to anyone else


andrea

hi
i really need some input from all of you right now as i think something has gone drastically wrong.
as some of you know, i had pop surgery as my surgeon thought some of the pn pain i was having could be due to a prolapse, but wasnt sure and i always knew that this may not solve my pain problem but i didnt realise it could make it worse.
i was told that during surgery it was found that my colon was stuck down to my pelvis and that there was a lot of adhesions so he had to take most of the left side away, which is really interesting as this is the side i get my pn pain.
since surgery i have been having bikin line pain, a dragging pain, seems to be right on the line where i have my hysterectomy scar but i think it is also where the prolapse surgery is attached and before i just has burning when i weed now i have stabbing knife like pain when i wee so i have to do this slowly and sometimes i feel it doesnt come out properly or empty, also it seems worse when my bladder is full, i am also in a very bad pn flare at the moment which has also now given me extra pain in the clitoral area and wondered if this was also due to the surgery which was 14 weeks ago so i would have thought it should be settling by now.
i saw my surgeon 2 weeks ago and he said it should settle but i am getting very concerned alls not well, i have tried getting in touch but no one is getting back to me.
i am quite ********** off at the moment as i pay privately for treatment and wonder what i am paying for.
could it be that all the work in the left side of the pelvis could have freed my pn nerve and its just waking up so to speak
really not up to much at the moment just laying in bed worrying

andrea

Andrea

I have just logged on and saw your post - i hope someone with more experience on here replies to you soon.

i would call out a doctor if you are not getting any replies - you have had a lot of surgery - even if it means seeing someone in the nhs

love

Rosemary x

Hi Andrea

I am so sorry that this is so difficult for you at the moment.

The bikini line pain - this is not where the surgery is attached.

You had LVMR, same as me, with lots of removal of adhesions and so forth. In my case there was also vault fixation - I think you had also had this? I can't recall offhand. Either way, it is worth noting that none of this is standard pop surgery, in fact it is very unusual to have this surgery done for pop, usually pop is dealt with by gynae surgeons not colo-rectal surgeons.

What is done during LVMR - Laparascopic Ventral Mesh Rectopexy - the bowel (which has been prolapsing ie dropping down where it is not supposed to) has some mesh tape stitched to the outside of it, on the side of it that is toward the belly. This mesh/tape runs vertically up in front of the bowel. The bowel then runs across to the left and the tape continues straight up, and is attached to the front of the spine. The vaginal vault is also attached to the mesh/tape (or at least it was in my case). So the tape holds both the vaginal vault and the colon in the right place and stops them from falling down.

The reason for doing the rectopexy in this way is because it spares the nerves. Stitching it the other way round, with the mesh/tape at the back of the bowel, is much more likely to cause nerve damage. Hence the ventral rectopexy, ie attaching the mesh at the front of the bowel, ie the side towards the belly (ventral).

There is nothing stitched to the abdominal wall at all.

When Mr Dixon said that he had to remove a lot of the left side - I am sure he did not mean remove any part of your colon. He will have meant removal of adhesions.

The bikini line pain is something that troubled me a lot too. Mr D told me that abdominal pain like this was quite common after laparascopic surgery, especially when a lot of work had been done, and that with a pre-existing pain condition it was not surprising that I was having significant problems with it. I am now 16 months post-op and I do still have episodes of this. (Sorry....... but maybe it will settle faster for you)

I can't comment on the private treatment issue, I've had all my treatment through the NHS. But it is Saturday and I wouldn't think that Mr D will be there. If you've asked to speak to him, they'll give him your message when he is next there, I am sure.

However pain on urinating is not to be ignored. It think it would be a good idea to ring NHS Direct 0845 46 47 and talk to them about this, I have always found them to be helpful and supportive. I've even been given doctor's appointments and antibiotics at 10 at night....

Please do call NHS Direct - and let us know how you get on? I do hope that you feel better soon.

yes i had all the xtras you had and i did mention the pain when urinating to mr d a couple of weeks ago and he said it would settle and didnt seem bothered about it.
i have been tested this week for a uti and that is clear, maybe a flare is all it is and i am worrying unduly, i am a worry wort and maybe i thought things would be completely ok by now. my poor insides must be wondering what has happened to them at the moment and still trying to settle along with my ibs, oh what joy!
andrea

i really wanted to thank all of you for your continued support, i really dont know what i would have done without you as i have no one else really i can talk to. my mum has altzheimers so doesnt even realise i am ill and we have never been that close anyway, i have a grown up son but talking to him about it is not an option as he doesnt understand and i am afraid my husband is sick to the back teeth of me complaining and has more or less washed his hands of me, i really dont blame him, and i can honestly say that i dont think my marriage can take much more of this as for the past 13 years i have lurched from one medical problem to another.
first it was a bout of depression for which i was given anti d's which made things ten times worse then i started having very heavy constant periods and period pain, the result was a full hyst which then resulted in fibromyalgia and also an under active thyroid, followed by gallbladder diease and removal which then left me with bile acid diarreahea and ibs and now this. i am starting to think that maybe its time i left my hubby to give him some peace, he had a heart attack just before chiristmas, thank god only a minor one, but he blames me for it saying its all the stress i am putting him through and do you know what i think he might be right.

thanks for letting me get all this off my chest and i am sorry if i have bored anyone, but i needed to do this as i feel sooooooo depressed at the moment

andrea