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Please read and tell me if you think (PNE/PGAD

Posted: Wed Sep 06, 2017 4:21 pm
by Hopeitworks
These are my symptoms:
• Sitting becomes intolerable.
• The pain is often not immediate but delayed and continuous and stays long after discontinuing activity that caused the pain.
• Often the pain is lower in the morning upon awakening and increases throughout the day.
• Pain after orgasm.
• Strange feeling of uncomfortable arousal without sexual desire. Mostly just a tingling feeling.
• Urethral burning (intermediate)
• Feeling like the bladder is never empty or feeling the need to urinate even when the bladder is empty.
• Urinary frequency.
• Pain during and after intercourse.
• Minor low back
• The symptoms are bilateral.
• The front of my things burn
• Sharp electric type pain in the groin area when sitting.

Do these symptoms match PGAD or PN or both? can surgery fix this? i can't deal with too much more of this any help would be appreciated. [/size]

Re: Please read and tell me if you think (PNE/PGAD

Posted: Thu Sep 07, 2017 5:41 am
by Violet M
I can't really say what your diagnosis is, but I can tell you that I had PNE and PGAD and out of your list of symptoms, these are the ones I had:

• Sitting becomes intolerable.
• The pain is often not immediate but delayed and continuous and stays long after discontinuing activity that caused the pain.
• Often the pain is lower in the morning upon awakening and increases throughout the day.
• Pain after orgasm.
• Strange feeling of uncomfortable arousal without sexual desire. Mostly just a tingling feeling. (It was kind of an itchy feeling)
• Urethral burning (intermediate)
• Feeling like the bladder is never empty or feeling the need to urinate even when the bladder is empty.
• Urinary frequency.
• Pain after intercourse.
• Minor low back
• The symptoms are bilateral. (Mine were bilateral but significantly worse on one side)
• The front of my thighs burn (The inside of mine burned)
• Sharp electric type pain in the groin area when sitting. (Mine was knife-like pain in the perineum area when sitting)

Violet

Re: Please read and tell me if you think (PNE/PGAD

Posted: Fri Sep 08, 2017 5:31 pm
by Hopeitworks
Violet M wrote:I can't really say what your diagnosis is, but I can tell you that I had PNE and PGAD and out of your list of symptoms, these are the ones I had:

• Sitting becomes intolerable.
• The pain is often not immediate but delayed and continuous and stays long after discontinuing activity that caused the pain.
• Often the pain is lower in the morning upon awakening and increases throughout the day.
• Pain after orgasm.
• Strange feeling of uncomfortable arousal without sexual desire. Mostly just a tingling feeling. (It was kind of an itchy feeling)
• Urethral burning (intermediate)
• Feeling like the bladder is never empty or feeling the need to urinate even when the bladder is empty.
• Urinary frequency.
• Pain after intercourse.
• Minor low back
• The symptoms are bilateral. (Mine were bilateral but significantly worse on one side)
• The front of my thighs burn (The inside of mine burned)
• Sharp electric type pain in the groin area when sitting. (Mine was knife-like pain in the perineum area when sitting)

Violet

Hi Violet,
It seems we have the same symptoms so please PM a list of interventions you found successful so I can take it to my doctor. Please include the name of your surgery.

Re: Please read and tell me if you think (PNE/PGAD

Posted: Sun Sep 10, 2017 3:41 am
by Violet M
Well, you really have to be a Sherlock Holmes to figure out your own case. I think one thing that was key for me was that when the PT or Dr. pressed along the course of the pudendal nerve at the ischial spine and alcock's canal during a pelvic exam it really flared things up. To me, that was an indication that the pudendal nerve was irritated for some reason. My PT and chiro were both telling me that my ligaments were strained and that I had pelvic hyper-mobility. I also had sacroiliac joint dysfunction. Knowing that the pudendal nerve runs between the sacrotuberous and sacrospinous ligaments and that my ligaments were in bad shape, I just had an instinct that those ligaments were pressing on the nerve and irritating it. I tried PT for awhile but it wasn't helping. I think it is important to give PT a try first but only from someone who really knows what they are doing. This was 13 years ago when there weren't as many options to try as there are today. I opted to try pudendal nerve decompression surgery using the TIR approach as described at the following link: http://www.pudendalhope.info/node/23 I would only recommend PNE surgery as a last resort when more conservative treatments haven't helped and your quality of life is very poor. It's not the answer for everyone and it's not an easy recovery.

The fact that you have low back pain suggests that you may have more going on than just pelvic pain. You really need to be evaluated by a good PT or manual therapist for underlying musculoskeletal problems such as sacroiliac joint dysfunction.

Violet