Health Organization for Pudendal Education

Kath wrote: I think of it like having a wedgie with a hot cheese wire. It's the only way I can describe it!'.

Sorry, I laughed, what a good description, still laughing! Yes it was on the radio show at about 52 mins in. Worth listening to the whole thing actually. Do you get the buttock pain Kath? I mean further up than ischeal tuberosity. I have heard a lot of people say that they have piriformis syndrome because of PN but once the Pn is sorted, sometime after surgery, the piriformis problems dissipate as well.
I know what you mean re this I know that if a nerve is compressed/entrapped then you feel pain from the point of compression down to the end of the nerve. as the ischeal tuberosity is almost exactly where Alcocks canal is. Maybe that means any entrapment would be more to the entrance to Alcocks? ? but that is a huge guess on my part. I read the Dr Dellon thing on here, he recommends water walking post surgery which seems to be a good idea.
Hope you are feeling well.
I have just been referred back to see Dr G more to sort the pudendal part out in the hope that the piriformis will be part of a BOGOF offer

Helen and Kathy, my pain was near the ischial tuberosities too and I ended up being entrapped at alcock's, ischial spine, and falciform process. I could feel pain along the pathway of the nerve in a line that was like a buzzing feeling or sometimes I had a zap along the pathway of the nerve.

Helen - I am glad I made you laugh! Mine is near the ischial tuberosity, sounds like it is alcock's canal related. Just read somewhere that the alcock's canal is only 2.5 cm from the ischial tuberosity. What symptoms come from the piriformis muscle? So it sounds like Mr Webb wasn't prepared to operate then. So back to Dr G, presumably to start nerve blocks? If you do see Mr Wong he is the most approachable person ever.

Violet - Yes I get buzzing sensations too.

Yes I'm going back to Dr G with a view to potential PN surgery (got a letter yesterday) so might get to meet Dr Wong, think seeing Mr Webb was a slight detour.
My piriformis, well sciatica because of my P muscle is my main problem and it would have been great if he could have sorted it out but I know Dr G is (eventually) on side especially when he saw how high I could jump when the needle went into my piriformis, fine through skin and glute max. I think I am slightly different in that my piriformis is the primary problem with PN the secondary. Could still be proved wrong on that one though, not that bothered as long as they can take a stab at sorting it
The thing with ischeal tuberosity pain is that Dr Dellon has said this
THE PUDENDAL NERVE DOES NOT GO TO THE BUTTOCK OR THE ISCHIAL
TUBEROSITY, AND SO PUDENDAL NERVE PROBLEMS CANNOT CAUSE PAIN IN
THOSE AREAS.
I'm so confused.
It would be great to know if ischeal tuberosity pain DID equate to a problem within Alcock's (could it equate to a problem higher up than alcocks in that the nerve can experience pain distally from any entrapment or problem say at the ligaments)
Oh my brain is done in thinking about it, going to get a cuppa, whilst easily resisting that chunk of cheese Kath

carolynm wrote:Faith,
when is your Hibner consult? Hope I didn't ask this already....valium on board and I'm not remembering. Just thinking about you since we both have little ones to take care of along with dealing with this nightmare.

cari

Hi Cari,

Thanks for asking. I just posted my consult experience under case updates.

Helen - You're confused? I'm confused. To be honest the more I read the more confusing it gets. There does seem to be some varying opinion about these things.

Violet M wrote:Helen and Kathy, my pain was near the ischial tuberosities too and I ended up being entrapped at alcock's, ischial spine, and falciform process. I could feel pain along the pathway of the nerve in a line that was like a buzzing feeling or sometimes I had a zap along the pathway of the nerve.

Well that would seem to say that Dr Hibner is correct in his statement as far as you are concerned Violet. . . are there others who have had entrapment at alcocks and also ischeal tuberosity pain I wonder?

I wouldn't say that ischial tuberosity was my primary source of pain but sitting on it was uncomfortable because the pain was so close.

You could try a steroid injection to the ischial bursa to see if that helps?

Hi all
Gosh this is so confusing. I have ishial tuberosity pain both sides and now perineal pain has increased.
We are thinking of getting an MRN as my 2 Potter MRIs didn't show direct entrapment (other than varicosites in the abutting the PN area. I had an embolization done to get rid of these as per Dr Potter advice, since it was seen on MRI.. This procedure did not help my pain, as we had hoped.. However since I had signicant pelvic congestion with varicosities it made sense to try. We had the vein embolized on one side, but since it didn't help probably won't do the other..

A good hospital in our area offers MRN's.. would these give us a better view of whether I am entrapped?
From what my pelvic doc now says, MRIs can miss a lot and.. there can be things going there that just don't show up.
Maybe an MRN would show more? My pain has always been deep throbbing pain, not surface, not burning..
It aches like a severe toothache, whenever my sit bones Ischial tuberosities touch a chair,and more recently the same is true of my perineum. My labia area feels like I am crushing it if I sit.
If I were to drive or even sit for dinner the pain levels go up even more so I don't risk it so am more housebound than ever. The pain and isolation are mindblowing,
Any opinions on MRN's? am desperate to find out where the heck this is coming from but don't want to put myself thru one more test if isn't going to show much.

Thx in advance, and best to all
Kathy

The worst pain that I have from sitting too long is a deep aching pain in the ischial tuberosities. Dr. Potter said that I have scar tissue at the posterior entrance to Alcocks. Lately, orgasm has the same effect.

Don