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Pn with none of the classic symptoms
Posted: Tue Aug 20, 2024 2:56 pm
by monty999
Can you have pn if you have no pain in the vagina or anus? Consultant (neurosurgeon) is adamant it is possible.
My pain is centred around the ischial tuberosity (inner side near labia) with pain down the length of the hamstring to the back of knee. It can also be felt in the piriformis and I have a pinching skin feeling between the anus and vagina. Pain is increased by walking or standing in the same spot for too long. Worsens as the day progresses. I am a 24k miles cyclist. 18 months since pain started which started with a niggle in the sitbone. Thanks
Re: Pn with none of the classic symptoms
Posted: Mon Aug 26, 2024 5:46 am
by April
Hi Monty,
Yes, you can have pn without pain in the vagina or anus. The pudendal nerve crosses over the ischial tuberosity, so pain there could very well be from pudendal nerve. (The diagrams on the home page always help me remember the nerve's path, so you might find them useful too.) Pain outside of that region might be referred pain or pain from another nerve that is pinched. Pn pain often worsens as the day progresses, and cycling is a common cause of pn. So I think it is highly possible that your pain is, at least partly, due to pn. What did the neurosurgeon suggest for treatment? Did the s/he have other ideas for diagnoses? A nerve block can be a helpful diagnostic tool. (And you might want to get it without only a numbing agent (no steroid), because a recent study suggests the steroid isn't helpful, and (as many of us on this forum know), it can create a pain flare.)
April
Re: Pn with none of the classic symptoms
Posted: Mon Aug 26, 2024 8:07 am
by monty999
Thanks so much for replying.
I have had nerve blocks with cortisone. One didn’t make me numb anywhere, not even for a minute, still in pain directly after, but I had a massive flare up of pain for about a month after. Considered a failed block. Another, last week, I was only numb in the labia but not at the rear rectum/sitbone and I was still in excruitating (inner) sitbone pain for the hours after block.
This is why I asked my other question. If it’s not pudendal could a shot to the pudendal nerve cause a flare?
The neurologist I saw instantly said pudendal neuralgia when I said I was a cyclist and wanted to do a pudendal nerve operation even after the failure to go numb block. He is not a pudendal specialist. Just a standard neuro surgeon.
I’m in no man’s land now. The radiologist who did the shots said no more blocks. It’s not good to have lots of them. I’m unfortunately uk based
Re: Pn with none of the classic symptoms
Posted: Tue Aug 27, 2024 2:20 am
by Violet M
Have they ruled out ischial bursitis? Does sitting increase the pain?
Can you get an opinion from a physcial therapist who specializes in pudendal neuraglia? There are some in the UK. They can do an internal vaginal exam and examine the muscles, and press along the course of the pudendal nerve to see if it is tender, especially at the ischial spine or the Alcock's canal.
It seems like you need some more diagnostics before heading into surgery, but I could be wrong.
Violet
Re: Pn with none of the classic symptoms
Posted: Tue Aug 27, 2024 8:09 am
by monty999
Thanks for taking the time to reply.
I do have mild ischial bursitis which was noted on a recent ultrasound. However, it was not noted on a previous ultrasound I had done 10 months ago. I don’t think ischial bursitis pain goes into the labia and wouldn’t cause the pinching/stretching discomfort on the skin between the anus and vagina? Also when I walk, which is very painful at the sitbone it feels like I have a swelling forming on the inside of the sitbone near to the anus but not in it.
I went to a local pelvic floor pt but she had seen only one pudendal nerve client in her 20 years. She did go into my vagina and pushed around but this produced zero pain.
My history before this started would point towards pn. 24k miles cycling, a fall onto the sitbone and back that caused 6 months of serious back pain with chronic sciatica (resolved by a epidural in the L5-S1) and a period of 3 weeks with constipation (due to pain from sciatica) whereby I didn’t pass any stools.
I can sit but it is very uncomfortable primarily around the sitbone and pain down the leg. Standing makes it really bad and walking takes it to another level.
Like others I have been to so many consultants none of whom have a scooby doo what’s wrong with me. Apart from that one neurosurgeon who instantly said pudendal.
He was keen to do surgery for £5k immediately for pn.
Re: Pn with none of the classic symptoms
Posted: Wed Aug 28, 2024 5:28 am
by Violet M
Wow, that's really cheap for a surgery! At least compared to the cost in the US. I would be curious to know if he has ever done a PN surgery before and what approach he would use.
Here is an article on ischial bursitis.
https://www.webmd.com/pain-management/w ... l-bursitis
You could compare it with your symptoms and decide which you think is a better match in your case - PN or ischial bursitis. The treatments for ischial bursitis are non-surgical which carries less risk, so you might want to try those treatments first if you haven't already, and see if they help. Ice and heat can be very healing, including alternating hot/cold sitz baths. And sadly, you would probably need to take a vacation from the bike for awhile.
Violet