It is up and down :) my dear OMB. What to do. It is not the same pain as when I first had a fissure ( like night and day from that time) but still irritating to always watch what I eat, wonder if I will poop easy, and so on. You know the story. I do eat more variety of food, and can get out and do things much more than say a year ago, so that's a joy. Still use my Sitz bath regularly and could not be without it! Oh dear, whatever happened to the young sprightly thing I once was!!!

Thinking about you xxxxx

OMB, I agree. Some people get upset with me not accepting my pain but I just can't. I have to believe that there will be an answer and I will have a normal life again. Yes, many Doctors just dread chronic pain patients as they are so used to 'fixing' people and I think it makes them uncomfortable and powerless when they can't. There are some good ones out there though. I hope so much that you find one of them.

Sav.... I'm so happy to hear you have some improvement, I often long for my younger care free self who didn't even know the word fissure existed! I'm sure just being able to eat a more varied diet has helped build strength and given you some small pleasure. I think of you too...... But you don't keep a diary here, so I often wonder how you are. Xxx

Msimon..... Yes, I can't give up and crawl into a hole yet.... We will fight this thing together!! Xx

Yes we will OMB, yes we will ;)

I have been doing lots of research of my own and I really think I have pudendal neuralgia. I think I may have had it for quite some time along with my fissures. I feel that all the recent surgery has just compounded it


http://www.pudendalhope.info/node/9

OMB x

No real news really, things are much the same.
Still no appointment with the pelvic pain team yet...... The usual waiting around.
I'm still having the accupuncture. I'm not sure if its doing anything yet, but it's relaxing and I always leave with less pain feeling energised ( even though it doesn't last long )
My pain levels are much the same too.... But it depends how busy I am on how badly I suffer later in the day. I think my nerves are shredded!

I hope all of you that read this are doing better.... Keep your spirits up!

OMB x

Sorry to hear of not much improvement for you OMB. The waiting is really tough isn't it? The pelvic program I am in here has a 2 year wait list! So many sufferers and so little funding. And this program is only for women too. Sure makes me wonder what the poor men do...

Pudendal nerve entrapment is a rather controversial diagnosis here. I will be interested to hear what you find where you are. A lot of people here say it doesn't exist and that many undergo 'unecessary' surgery to release the entrapment. The physios I have seen so far have denied that I have it. I will have to ask my new one what she thinks. So far, I have just been told it's levator ani syndrome.

How much gabapentin are you taking now? WOuld you be able to take any more? Or try another med?

I, too tried acupuncture years ago with little relief. It's good that it relaxes you though. That must as least help take the edge off some. Hang in there OMB. It's just got to get better.

Thankyou msimon......... Waiting lists for pelvic physio here are around the 18 month mark.

I am on 300mg of gabapentin 2 times a day. I can always up it to 3 times a day, but I hate being reliant on medication... Especially such a complex one as gabapentin. It may just be that it's not quite the right dose for me yet.... Or that I'm getting used to it?? I think it's something I will talk to my pain clinic about and see.

How are you doing?? Any improvement in pain??

Xxxxxxx

Things are still much the same for me pain wise, and I've not heard from the physiology department yet. I will be seeing my dr next week and I'm going to ask her to refer me to a different team up in Bristol who specialise in pelvic neurology.
Next week I also start a " mindfulness " course........ It's meant to be relaxing, and can help people in chronic pain to focus on other things but their pain, I'll give it a go.

I hope everyone is doing better xxxxxxxx