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Old 04-12-2021, 07:48 PM #1
Gaba72 Gaba72 is offline
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Question Really need a fresh set of eyes after 10 long years.......

Hi there, I have been dealing with what I believe to be neuropathic pain since 2008, I was 35 years old at the time. It started with bilateral burning/pain over the sitz bones that would radiate out through the pelvis the longer I stayed seated. I also experienced some mild pain in the tip of my penis and burning with ejaculation. There was no traumatic injury that caused these symptoms.

I have had way too many tests to list them all and none were conclusive on the root cause of the problem. Sometime later I saw a neurologist who was just getting into the field of Pudendal neuralgia since my research was leaning towards the possible casue of my symptoms. As part of my initial exam he gave me a rectal which was very rough and painful. After the exam I started to feel a warm liquid sensation in both legs with aching to the point I could no longer stand. When I called him back to let him know what had happened after the exam he did not have any answers and prescribed me Gabapentin (gradual build up to 2400mg per day) which did help but did not eliminate the pain fully. Before the exam if I stood up it was almost as if I didnít have an issue as standing relieved the pain almost completely.

Overtime my condition started to get progressively worse and I can no longer stand at work, the neurologist suggested that I should try some nerve blocks on the Pudendal as he thought that maybe my problem. The nerve blocks were somewhat effective but did not relieve my pain enough to conclude that was my problem. After reading who this condition could get much worse over time I made the decision to have bilateral decompression surgery in 2011. Before the incisions were stitched up the area was spread with cocktail of freezing/numbing agents, for 2/3 days after my surgery I had no pain while sitting and I thought that the surgery was a complete success. After the freezing wore off the burning was incredibly intense and my sitting became more painful than before the surgery. Months after the surgery the burning that I had experienced before the surgery during sex and during/after ejaculation was improved by 70 to 80% and the pain within the tip of the penis was gone.

Since that time I have learned to live with the pain and discomfort and inconveniences of this disability. I did purchase a special U-shaped cushion which makes sitting somewhat bearable. There are times or activities that put me into a flare up meaning increased sit pain and burning that would last for anywhere from a few days to a week, for whatever reason sometimes the flare up starts a few days after the activity that caused it. At some point it would appear that central sensitization has kicked in as I started to get burning and pain on any pressure points that would make contact with a surface i.e. wrists touching laptop, elbows resting on couch, knees on carpet etc.

Recently, my condition appears to have taken a turn for the worse as I now have increased burning/pain with sitting. Iím also experiencing warm sensations in my legs and feet along with tingling, when I sit on a toilet my feet tend to start to tingle and fall asleep as if there was compression on a nerve or a restriction in blood flow. I'm starting to wonder if my condition is vascular, neurological or both. I really want to find the root of the problem but wonder if itís too late at this point?? I was thinking about looking into ketamine infusions but not sure at this point. Any thoughts or suggestions as to how I could find the root of my problem would be greatly appreciated.
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Lara (04-22-2021)

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Old 04-22-2021, 03:06 PM #2
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Hello and Welcome to the NeuroTalk Support Groups.

I can't give any suggestions really, but I just noticed your post in passing had no replies and wanted to bump it up in case anyone had some ideas to help you.

There is a NeuroTalk Men's Health Forum where there may be similar posts.

I also wanted to suggest using the forum search feature. You can find older posts from users that may be of help. e.g. type in keywords "Pudendal neuralgia"

https://www.neurotalk.org/search.php

all the best. Hope you find some answers and relief for your pain soon.
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Old 04-22-2021, 04:28 PM #3
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I forgot to put in the link I was going to post about the central sensitization that you mentioned.

Central Sensitization
from Institute for Chronic Pain

I would also suggest searching for those keywords here as well.
Sometimes spelled as "sensitisation" or "sensitization".
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Old 04-22-2021, 04:58 PM #4
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Best I can say is Grape Seed Extract helps a lot and I also take Inosine. I have posted about these 2 a lot.

Think about the sugars/carbs you consume.
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OA onset at 18, now 81. Fibro onset at 61, Hip Replacement "mess" 72 (nerve damage, IT band damage, shorter leg). Otherwise, pretty good health.

Most important supplement: grape seed extract
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Old 04-22-2021, 05:31 PM #5
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Welcome Gaba72. Hopefully someone can help.
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Old 04-22-2021, 05:44 PM #6
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OP: I meant to post this, foods can have a great negative influence on our health issues and I'm believing more and more gluten is a major factor and with neuropathy.

The Connection Between Gluten and Neuropathy?

On an off topic issue, I listen to an MD who has done a lot of research on covid and has been nutrition all his life and he has found that countries who consume more gluten foods have more covid viruses.
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OA onset at 18, now 81. Fibro onset at 61, Hip Replacement "mess" 72 (nerve damage, IT band damage, shorter leg). Otherwise, pretty good health.

Most important supplement: grape seed extract
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Old 04-22-2021, 06:37 PM #7
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Quote:
Originally Posted by Kitt View Post
Welcome Gaba72. Hopefully someone can help.
Thank you Kitt. 😉
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Old 04-22-2021, 06:41 PM #8
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Thank you Lara, much appreciated.
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