Health Organization for Pudendal Education

Nyt, very good points.
+1

I'm going to have surgery by prof. Aszmann in a couple of weeks from now.
After five (or more) years of suffering from pn/PNE/prostatitis/ect' with some self injuries from "over" sport/stretches/yoga positions (just to ease the pn pain that drove my nuts before I had idea what my problem really is - in the years to come I'v got also one torn labrum that got fixed and now caused me (two weeks ago and six month after the arthoscopy) a lot of pain and two inflammations together have been seen on the ultrasound one inside the (need to be again? ) fixed joint and other
On the 7z3x22 inner scar tissue formation seen in the ultrasound also, on the psoas tendon

So I'm in a lot of pain, i'm Rx'd methadone lyrica Percocet and naproxen, and even it could'nt handle my pain a controllable after the inflammation in the surgeried left hip area - until I'v got steroid shot from my surgeon to the hip capsule. that got it somewhat setteled, until the next wave of screamings from the pain.

The bottom line?
After all of I'v been through (even probably left failed FAI surgery that need to be addressed) -
I'm going to the pn surgery with prof. Aszmann.
In my position, after all the methods that I tried including some self injuries (another torn labrum in the right hip that I accidentally tore in the right side nine month ago at home on the sofa, that need to be adrresed by surgery after)

This TG surgery IS my only chance to get some of my life back,
If I had known from the beginning what I have learnd in those painful years that had stolen from me, after all the doctors that said to me just have to live with the incontinence and unconvinence that became to cycle of vicious pain.

I hope that you have success in relieving your pain, gsystems. It sounds like you have been through a lot.

Hello, gsystems

I wish all the best for you. Please let us know how you are doing after the surgery. I got a lot of support here during those difficult first months, all the way past the 2-year mark. If you are better at the 1 and 2 year mark please come back and post here. Likewise, if you don't feel it was successful, it is helpful if you post about it. That is the only way we have of finding out if surgeries are successful, and also how well the surgeon is doing. Although it did not work for me, I truly hope your surgery brings you relief.

Hi all!
First thank you to everyone on this forum! I have read so much. made so many notes, and cried so many tears and I'm still so confused! I am scheduled for
surgery with Dr. Conway in NH March 24th and I'm not sure I am at peace with it. I have all of the classic signs..........avid biker who fell off my bike
and landed very hard on my right glut, burning pain, fecal incontinence, PGAD, right buttock sciatica. I am a single bread winner and I fear
the recovery will take longer than the 8 weeks that Dr. Conway claims I will need. I must return to work after that! Everything I am reading on here and other forums recovery
is longer than that! I realize everyone is different but gezz I just don't know! I would love to hear from others who had the surgery for their
HONEST explanation of recovery! I have had this for 2-1/2 years and have done every treatment possible. Any input would be so appreciated!
Blessing! Pam

Hi all , I used to post a lot 3 years ago on this forum when I was diagnosed with pudendal neuralgia . I was without doubt a shadow of my former self . I had been a runner & a healthy person prior to this . I believed this was not something in my head but a real mechanical problem . It was by all accounts a mystery illness to many of the clinicians I saw in the UK. I did go to France & saw the wonderful prof Roberts . In short I had bilateral pudendal nerve decompression . I went back to work 6 weeks after surgery & have recovered slowly over 3 years . I am now 90% better . Not cured but living a full happy life . I have no regrets & I'm thankful that this surgery was available . I don't like to debate what's right or wrong as we all choose our own path but surgery worked for me. God bless to anyone who has this condition . It is without doubt the worse pain you could imagine & so soul destroying .
Thanks for taking the time to read this ,
Caty

Hi Charlie123 glad you are recovering ,i wish this process continues and you keep everyone updated years in the future it helps with long term stats .
you are right it is a complex condition and

It is without doubt the worse pain you could imagine & so soul destroying .

I just wish everyone to be pain free

I think ezer has a valid claim that emotional states have a huge impact on our overall health and our ability to overcome pain and injury.

I had RSD on my right knee in 2002 and was in chronic pain, once I found the right doctor that actually fixed the issue he, the pain clinic and I faced my bodies impression that I was in pain. Bio-feedback and positive imagery and prayer all contributed to my overcoming and "re-wiring" the pain in my knee.

However, in my opinion, if someone even suspects they have PN they should get checked by a competent physician that studies pudendal neuropathy.

Every case is different, but in mine there were two physical entrapments to the PN and the nerve was caught up in the vascular bundle as well.

AFTER you get checked, and there is no evidence of a physical issue, you run into the RSD/CRPS type of issues and that is where I think ezer has a point worth considering.

It comes down to a internal battle of will, can you re-orient your mental self and personal outlook on life to stop the negative pain cycle? If the answer is "yes" then your chances of having a better overall recovery are much higher.

Pam,
I resonate with the recent posts - it is good to get a broad perspective of outcomes as you plan your way forward.

In my case, Dr. Hibner was reluctant to do the surgery, and so I navigated through all the conservative therapies for 2.5 years. It was only when he encountered extensive scar tissue (bicycling) during an injection... that he supported surgery. At that time I was going downhill fast and felt surgery was the best option - and it proved to be the correct treatment. Have posted extensively on my path and experience.

Were it not for surgery, I would likely have been on a LT disability path.

I send a Christmas card every year to Dr. Hibner and his staff.

Best,
Bob

stephanies wrote:I hope that you have success in relieving your pain, gsystems. It sounds like you have been through a lot.

Thank you very very much , stephanies and of course all to LottaNerve, Violet (a big hug) and to all the others that their words and advices from personal expiriance.

Of course I'll update my recovery after the surgery

I need advice...
As I wrote, I have lots of pain from my last FAI surgery, I'v got steroid injection to weeks ago into the hip capsule and it helped me a lot (until yesterday the hip pain and the inflamtion came with vengeance and I went to the ER crying with hip pain)
Tommorow I'm doing the MRI-A to see what happend to my last FAI surgery (7 month before) and I'll probably will need to do hip scope, but how can I adrress the hip problem before the TG ?
So how to do it and I don't know what to do first ?
My GF informed the doctors about my question because I don't what to end up recovering from Tg surgery and crying from pain in the hip area with restriction not to adress it because of the groin pressure included in the FAI surgery or the large incision from the TG. I'm confused ...

LottaNerve wrote:Hello, gsystems

I wish all the best for you. Please let us know how you are doing after the surgery. I got a lot of support here during those difficult first months, all the way past the 2-year mark. If you are better at the 1 and 2 year mark please come back and post here. Likewise, if you don't feel it was successful, it is helpful if you post about it. That is the only way we have of finding out if surgeries are successful, and also how well the surgeon is doing. Although it did not work for me, I truly hope your surgery brings you relief.

Thank you for the advices and the support.
Have you check your hips? my MRI-a was bad, and the right side was even more damaged.
The hip capsule area, FAI (the bone hitting and frying the labrum) and labrel tears.

Guided or dr exprianced unguided Steroid shot can eliminate the possibility that your hip pain radiating to your pelvis area.
To me one shot like this can eliminate breakthrough pain and a lots of pain for couple weeks

May we all feel better