Health Organization for Pudendal Education

Hi romaine,

I am no doctor by any means, but perhaps the grapefruit sensation is tissues swelling from inflammation on the inside? I wonder this because I had Botox 6 days ago and afterwards, until about today actually, I felt like a horse kicked me. Are you taking any NSAIDs like ibuprofen, etc? Just my thoughts. Maybe ask Professor C about that.

Hope you are well, and God bless,

As Mommy

Hi Everyone,
Its my three week post surgery update. I must say that I feel extremely lucky so far as I have had about 60 % pain reduction on my left side so far. I still have some burning but I am told that this is normal after surgery. The right side is still very uncomfortable and my doctor had advised that I would have to go under the knife again to sort that side out but I am looking forward to this now as it may mean that I can start enjoying the finer things in life once more.

I returned to work this week and have been able to sit for longer periods. I am careful though to ensure that I stand for longer periods and take the opportunity to walk around a bit more.

I cant help but count my blessings for in spite of all the mixups and problems Professor Carlstedt was able to provide relief almost instantly for me. Experience shining through no doubt!

So please keep positive, I was almost suicidal at one stage as this pain barred me from even being able to sleep. The hardest part for me as well was the disbelief I faced from some healthcare professionals who felt that the pain was in my head since it couldnt be diagnosed.

Will continue to post but feel free to contact me.
regards,

romaine

Hi Romaine,
Thank you very much for posting your update. I'm so happy and encouraged to hear of your progress! Am I understanding correctly that you had unilateral surgery and will have to have the other side done, too, at some point in time? Was your surgery via the TG or TIR approach? Yes, I understand your disbelief at the medical profession. Although I'm sincerely hoping to over come my PN symptoms, I don't think the memory of what I went through with the medical community will ever go away. Wow! I can't believe you're already back at work! Is your employer understanding about your condition?
I will keep you in my thoughts for continued healing!
Warm regards,
Karyn

Romaine, that is exciting news that you have had a significant reduction in pain on the surgery side! That is a good sign that you have had such a significant improvement so soon after surgery. It will take time for the nerve to calm down but at least now you are on the road to recovery. Wishing you all the best!

Violet

HI karyn,
I had the TG method and yes they did the left side first. I am hoping to have the other side done soon.
My employers were considerate but I was actually on annual leave for my surgery as I do not qualify for sick leave, long story too complex to explain .
I have had a lot of surgery before and have all been quick to recover (thank God). This time I was scared because I really cannot see myself continuing with this pain. Its the first time I actually stayed in bed for almost two weeks until the registrar advised me that I should have been moving
Violet thank you for your kind words I hope that I can inspire others to keep trying for relief.
Regards
Romaine

New to this site. Had Transgluteal approach with Dr Aaron Filler 4 months ago. I have had no relief from original pain, but added problems with my sciatic nerve pulling thru to mid calf. After 4 months some of this pain has resolved, but pain in front of left leg and hip pain remain along with all original pain. I have heard of another doctor back east (I am in CA) who has success with patients who have had surgery with Dr. Filler. I have asked the site admin if they have heard of A Lee Dellon in Maryland. Also, after 4 months, Dr Filler will not agree to PT physical therapy to help with scare tissue of this surgery. My only report after surgery from Dr. Filler is I had lots of damage. Any advise from the group would be greatly appreciated.

Lee Dellon in Baltimore is extremely expensive and doesn't take any sort of insurance.He is charging US $20,000 for the surgery excluding
Hospital fee.He only decompresses the distal dorsal branch of the Pudendal nerve after it branches out of the Alcock's Canal to the Pubic symphysis.
If you can afford him well and good.But if you are looking for cheaper means for the decompression of the dorsal nerve,then you can contact Dr. Oskar in Austria.You can find his information under Case Udates under Dorsal nerve of the Penis\Clitoris.
heading.
If you are looking for a redo TG surgery,then Dr. Michael Hibner in Phoenix,Arizona is the best option because he is the only one who does redos of all surgeons.

Best Regards,
Ali

Hi All,
Its been a while since my last post but I wanted to share my good news.
I have now had the other side done and am at home recovering. The procedure was performed by Professor Carlstedt and this time there were no hiccups, in fact it was a same day procedure and I was discharged from the hospital mere hours afterwards.
To date my pain has been reduced by about 75% which is fantastic for me. I have been reading that it'll take a while for the nerves to quiet down so I am still hoping for the best. It feels great though getting back some hope of a normal life. I do hope that my post reaches the ones out there who are desperate for relief, there is still hope so continue to hang in there.
Romaine

Hi Romanie glad this time all went better. all the best with your further recovery

Hi Romaine,

Thanks for coming back to tell us how your recovery is going. Glad you are getting so much relief, that is fantastic! I am curious to know why Pr Carlstedt does the surgery one side at a time rather than both sides in one surgery. Is it because of ligament repair?

Very best wishes for continued healing,
Jeanie