Health Organization for Pudendal Education

My Success Story after a Pudental Nerve surgery


I am a 38 years old woman. I have been living in UK for 22 years.
I have been suffering with pelvic pain and burning during and after urinating.

I was with Royal Free(Dr G Smith) then Kingston Hospital(Dr Alan Thomson) then Whipps Cross University Hospital (Dr John L Peters) then St George's Healthcare (Dr Nadine Coull).

After many tests such as cystoscopy and private and NHS consultations in the above hospitals I was diagnosed with "Interstitial Cystitis(IC)"
I had many weekly bladder installations such as Rimso,cystistat.
I was on IC diet and 14 different tablets a day herbal and prescribed .
I was also referred toHyperbaric Medicine unit for the chamber for 40 sessions.
Nothing helped at all.I have tried acupuncture .

As I was diagnosed with IC I became involved with COB(The Cystitis&Overactive Bladder) Foundation for 3 years.They have recommended me Toni Tucker who does acupuncture .Which had reduced my pain up to 40%.But I was still in pain and unable to live my life.Even though I am such a positive person I have thought of suicide but my husband kept me going.

On top of all my pain my husband had a sky diving accident and he is currently in the hospital for the last 5 months.

Finally God smiled on me!

My parents live in Turkey.Health Care is very advance in Turkey due to the medical connection with europe and USA also the size and the ability of private health sector.There is a program called Doctors in our main TV channel. And Prof Doctor Tibet Erdogru was on the program many times explaining about this treatments and wrong diagnoses of pelvic and bladder problems.

He is the head of Da Vinci Robotic surgery in one of the best and high thec hospital in Istanbul.
I have had many doubts before I went and had the surgery but I had no other choice.He did tests and examination on me and said I had prudental nerve problem not IC. So I was shocked !

He gave me contact details of 4 different patients who had the same surgery.Oldest one had the surgery 2.5 years ago and had been pain free.
They have all been pain free since their surgery.

Since I had my surgery I am also pain free my urgency my IBS are gone too.But I still have some light post surgery pain which I am told will disappear after 6 months.

Now that I know my illness I joined this forum . As I had been through hell with it I wanted to spread the word and help people .
Here is my Doctors details if you would like to contact him for advise:
http://www.davincirobotikcerrahi.com/index_en.php
Email: dr@tibeterdogru.com

I wish the best to you all

Ozlem

When did you have the surgery?

Welcome to the forum, Ozlem!

Your story is very interesting, it is always good to hear of another surgeon dealing with pudendal nerve problems. Could you tell us a little more about what surgery you had?

Hi Ozlemm,

I called Dr. Tibet and wrote him an email in detail.I haven't heard from him and it has been over a year.

Take care,
Ali

Ozlem,

Thank you for sharing your story. You have been through a very rough time but I am glad to hear you are doing so well and I hope your husband will also recover soon.

Ali, I wonder if you had the right e-mail. When Ozlem sent the admins her story I went to Dr. Erdogru's website and sent an e-mail to the address listed there and didn't hear anything back. Later I sent a mail to the address Ozlem gave me (a different address) and he e-mailed back right away expressing an interest to be listed on our site and to assist PN patients who contact him. I have posted his contact information plus additional info here: http://www.pudendalhope.info/forum/view ... =87&t=1689 and on the home page under the list of docs.

Violet

That is wonderful news that you are on the road to recovery!!

I am wondering if this would be a total out of pocket. I am thinking we have enough trouble w/our insurance companies in the US; I can't imagine they would cooperate going to Turkey.

I am just seeing this now, guessing Ali has already sent an email to the correct address and that we will get some info soon

Best wishes!
Grace

Thanks for the success story. I would love to hear more about the others who are now pain free.

Thanks

Hi Ozlem, do you know how your PN pain started? Is there an incident that you could say started it?
How is your husband, hope he is improving too.

Hi Ozlem,

I'm really interested in your story as your history is similar to mine.
I was diagnosed with Interstitial Cystitis for many years and have tried RIMSO and Bladder stretches etc. I also suffer with a great deal of bladder pain /burning and burning during passing urine and burning in the urethra. My problems started after a traumatic long vaginal birth in 2004. Did you suffer from bladder pain and urethral burning too?
How was your pudendal nerve problem diagnosed? Was it through a specialized scan in Turkey?
What advantages does the laporoscopic decompression have over the traditional transgluteal approach?
How long after surgery did you notice an improvement and are you totally pain free now?

Hi Ozlem,

How much did the surgery cost in Turkey?
If you have pudendal nerve compression affecting both sides, can the surgeon decompress both left and right pudendal nerve at the same time during laparosopy ?