[PaulSa]

Hello,

My problem started just over six years with bilateral sit pain (warm/burning sensation) over the ischial tuberosity, this was felt one day sitting at work without any trauma. For the first 3 years with this condition if I stood up it was barely noticeable. Since my medical history is lengthy one I will try and capture the important info below in point form,

• After numerous tests including X-ray, MRI of pelvis/lower lumbar, CT scan, bone scan all findings were normal
• Various blood work showed normal
• Various types of physiotherapy yielded no relief
• During the 3-4th year I started to experience problems with my erection (not as prominent and longer time to achieve one) and also burning after ejaculation
• At this point I asked to be referred to a neurologist who was Pudendal nerve aware after doing some reading online. As part of his evaluation he gave me a rectal exam in which he was very aggressive, the following day I started to experience warm/hot sensation in my entire pelvis and in both legs. From that point forward this would be a normal occurrence mostly when standing (I also stated to experience IT band pain as I was standing at work as I could not sit)

• Had numerous nerve blocks, pudendal, Inferior cluneal, and hamstring. The pudendal showed some short term temporary relief.
• I had bilateral pudendal decompression surgery at the end of 2011. My erection and burning after ejaculation improved by 80-85% but my sit pain/burning and warm sensation in my legs are still present. My surgeon thinks it is related to central sensitization.

Any input or feedback would be greatly appreciated. Thank you.

[Synnove]

did you check with your neurologist if you possibly could have Pudenald Neuralgia which is a peripheral neuropathy. From what I understand, people with this kind of peripheral neuropathy, also might have autonomic neuropathy and possible small fiber neuropathy.
Did you have testing for autonomic neuropathy and SFN?
The reason this kind of neuropathy is not presenting in the distal extremities, ( as the other kinds) is that where the symptoms are showing up, is at the distal part of the Pudental Nerve.

These are just my thoughts, from what I have read.
This is due to some studies done by two GYN doctors in New York on Vulvadyna in women, and it states that this nerve will cause symptoms in male genitalas as well, in form of neuropathy

[JeanKNC]

Originally Posted by PaulSa

Hello,

My problem started just over six years with bilateral sit pain (warm/burning sensation) over the ischial tuberosity, this was felt one day sitting at work without any trauma. For the first 3 years with this condition if I stood up it was barely noticeable. Since my medical history is lengthy one I will try and capture the important info below in point form,

• After numerous tests including X-ray, MRI of pelvis/lower lumbar, CT scan, bone scan all findings were normal
• Various blood work showed normal
• Various types of physiotherapy yielded no relief
• During the 3-4th year I started to experience problems with my erection (not as prominent and longer time to achieve one) and also burning after ejaculation
• At this point I asked to be referred to a neurologist who was Pudendal nerve aware after doing some reading online. As part of his evaluation he gave me a rectal exam in which he was very aggressive, the following day I started to experience warm/hot sensation in my entire pelvis and in both legs. From that point forward this would be a normal occurrence mostly when standing (I also stated to experience IT band pain as I was standing at work as I could not sit)

• Had numerous nerve blocks, pudendal, Inferior cluneal, and hamstring. The pudendal showed some short term temporary relief.
• I had bilateral pudendal decompression surgery at the end of 2011. My erection and burning after ejaculation improved by 80-85% but my sit pain/burning and warm sensation in my legs are still present. My surgeon thinks it is related to central sensitization.

Any input or feedback would be greatly appreciated. Thank you.

------

New to posting here . Wanted to let you know the little I have encountered w PN.

I do not have it. However I have a rare spinal cyst at S1 (sacral, low back)
It is compressing that nerve path. Have met others with Tarlov Cysts. Pain
And pain for some ladies and men - same as you describe.

Not saying you have a cyst. But look at MRI etc report and often reports leave off mention of 'incidental perineural cyst'. look at MRI n tests to see any possibility.

Some have surgery in attempt to be rid of horrible pain. Two men found the
'Privates' pain and pain with BM and the lingering rectal pain.

Yes, This is how PN can effect too. Have friend who has been to Michigan for
Special insertion of nerve stimulator (wrong name, sorry). Female.

Very happy to read of your better pain after your decompression surgery.
That's awesome.

Tarlov cyst foundation explains variety of neuro symptoms.

JeanKNC

[mrsD]

Lidoderm patches applied on the lower back (sacral area) may provide some relief.

There is a post on Tarlov cyst pain responding to Lidoderms here:
http://neurotalk.psychcentral.com/thread188697.html

They are slow in working so if you do them, expect them to take up to 3 days to get rolling. I used them very successfully for my meralgia paresthetica, in the past.