What do They Mean "Pain on Sitting" EXACTLY?

[Rosemary]

I have PN burning, electric flashes, itching, PGAD, all almost exclusively right sided but I have no imbalance 'looks wise'. .

I didn't want to alarm anyone unduly in my previous post....

I believe that the imbalance i have 'Looks Wise' is partly due to the different creams that i have been advised to use on the vulva skin making it gradually more hypersenstive - plus i have had a block injected transvaginally into the area - plus repeated nerve irritation by urine.

The pudendal nerve may be involved somewhere in my pain but i now believe that the main pain is coming from Other nerves in the vulva.

Rosemary x

[molly]

Hi Rosemary,,


From my time with Ruth Jones, she felt alot of vuval pain comes from the hip. Indeedvwhen she pressed hard on the piriformis it did relieve the vuval pain, be it short lived.

Since I have been seeingbanother therapistk who is a cross of different therapies, I have been doing a LOT of hip streches. This has given me the best relief for standing and walking since this all started.

Having said that I dinthink the more I learn about this condition the more confounding it becomes. I am 56 so a similar age to you by the way.
When I was first diagnosed in London by Dr B. he said then it was very difficult to know if the pain was nerve or muscle in origin.

I have also been told sex is good for pelvic pain but its a big hurdle to cross if its painful, thats not accounting for the emotional trauma.

Hope you too are enjoying the sunshine.

Regards Molly

[calluna]

I am 56 - well, very nearly 57. And I do sit - always with my cushions, never without. I certainly don't avoid sitting completely, not by a long chalk. In fact I'm sitting right now, reclining in my usual position on the sofa in my nest of pillows with my feet up, and the laptop on my knees.

My case was unusual in that the diagnosis was very clear and unequivocal, it was definitely damage to the left side of the pudendal nerve. What sort of damage I don't know and probably never will, although I have been told that it is quite possible that a stitch was actually put right through the pudendal nerve itself. I am however getting such good pain relief at the moment that I don't care about that too much! I've got a heck of a lot of scar tissue in there too of course.

But the nerve damage is definitely what causes the pain. It is not muscle pain. I wouldn't be getting this magical pain relief with topiramate and pregabalin if it were muscle pain.

So basically I've got just plain old PN with nothing much else going on apart from the usual continence issues. Most people have more complex problems. I know I'm lucky.

[molly]

Upon decompression my nerve was found to jammed at the ligament grip, had to be dug out. However to date the most relief Ihave had has been with the hip streches.


I wonder if the french team or any other neuropathic specialists have done studies on how many deceased people have been found to have trapped pudendal nervrs with no sympoms.

I think this condition has multiple components.

Molly

[Rosemary]

Hope you too are enjoying the sunshine.

Regards Molly

I have a bit - hoping some vitamin D from the sun will do some good.

Glad that the hip stretches help you - your surgery must have been a big decision - i do wonder if my nerves are getting trapped - worst pain is at back of my vulva/inner thigh.

I wouldn't mind being in France - their healthcare seems so much better than here - maybe their research is too.

Can't quite see a trapped nerve not showing symptoms but then again.....

Rosemary x

[molly]

Hi Rosemary,

Yes surgery was a huge decision, but as Ihad exhausted all othef options I felt it was a risk I could take.

I have had some improvement in the last year some down to surgery some down to excercises.

Basic pain has improved a lot sitting is still very painful and therefore life limiting.

I have just managed to get back to work, just four hours a day, so I,m very grateful for the modest improvement I have managed.

Regards Molly

[helenlegs 11]

My diagnosis is very clear cut too, which I am grateful for in some ways as it makes sense of my symptoms completely. Doesn't seem to help much in do and not do activities, I think that because the pelvis is such a stabalising structure for the rest of the body it's just a question of managing pain, stopping isn't even considered. But I'm tough!!
My problem has been getting someone to recognise the problems; more, the diagnosis, which I do seem to have achieved at long last locally with my new pain management lady. . . . off to see an orthopedic surgeon who no one here has EVER heard of, with regard to decompression of 4 nerves at piriformis level. Like oh yes you've never done this before just dig me open and have a go??? Don't think so; but I am very interested in hearing what he has to say. Probably ,'it's your back!' knowing my luck
France would be the place for me too but my fight for this has disappeared at the moment anyway. Sick of being up against everything, so many obstacles I really haven't the heart to even stumble over them just now. I'm not generally depressed or anything just going to concentrate on what the NHS do have to offer and with the up and coming NICE guidelines for chronic pelvic pain what else they will have to offer (all of us). The next stage is this Friday's workshop in Southampton. Hopefully a finalisation of structure, so we may have an actual pelvic pain pathway that the NHS can follow soon and the stupidity and lack of recognition will be a thing of the past.

[Rosemary]

Hopefully a finalisation of structure, so we may have an actual pelvic pain pathway that the NHS can follow soon and the stupidity and lack of recognition will be a thing of the past.

Just read this thread after replying to Melanie and saying about the nhs.

Hope that something comes out of this meeting Helen.

The chronic pelvic pain management clinic i go too seems to have its set limits - i went privately to an acupuncturist last week - she is linked to the pain clinic but noone there mentioned her to me as an option - i found her on the internet.

I am going to ask at my next appointment to see if i can get the 6 Nhs appointments that you are allowed with her. She has pinpointed the nerves that are troubling me - the only one who has so far. It would be nice to be offered every option open to you as part of a care package at the clinic. Guess it is all money .....

Rosemary x

[srinmav]

Hi Rosemary,


My symptoms sound very similar tl yours.

I do wonder if it is partly due to muscle atrophy or wastage as these muscles that we use for sitting are simply never or seldom used as we avoid sitting like the plague. These would lead to less blood supply and wastage which then becomes part of a vious circle, add in hypersensitivity to the area in general and the result is like a tinderbox.


This is only my theory, nobody has ever said this is what happens, just seems to make sense,as any other muscle groups in the body would simiarly waste if not used.

Regards Molly

Sounds like a good theory. From jan 2007-june 2008, I was completely unable to sit due to instant pain, and I did not sit at all during this period, even for a minute. This allowed my nerves to heal and after an year and a half, I no longer experienced the severe nerve pain upon sitting. But when I started sitting again, I noticed that while the burning/stabbing nerve pain wasn't there, I found it difficult to sit because I did not sit down in months and my back and pelvic region were feeling very odd while sitting. It took about a month's time before sitting became "normal". Sitting felt easier for about six months as both nerve and muscles seemed to tolerate the load, after which the nerve started getting irritated again and I had to drastically reduce sitting time ( to less than 2 hours/day) to manage the symptoms.

Some times eliminating sitting can be very beneficial to heal the nerves but it will affect the pelvic region in other ways because many of the muscles are underused and they can atrophy and become weak and compound to the problems. May be it is not a bad idea to sit for a brief period every day even if it is painful.

[trishj46]

When I say pain on sitting, my entire rectal-anal area is on fire! It will stay that way for a great deal of time. I feel "rock" or foreign object in my rectum.
It is there when I walk or stand, and feels like it is going to fall out of me! I have to use ice 24/7 along with ROHO cushion. I feel it in bed and don't get much sleep.
Still looking for some kind of cushion for bed so butt is not touching mattress. I am new on here and still experimenting with medication, nerve blocks, but never get rid of foreign object which drives me insane! When those of yu who get treatments and feel better, do you still feel foreign object?? Thanks for any input!!! Pray for you all!!!!!
Pat