Success Story

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Ozlemmm
Posts: 1
Joined: Mon Aug 01, 2011 4:12 pm

Success Story

Post by Ozlemmm »

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
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Success Story

Post by Lernica »

When did you have the surgery?
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Success Story

Post by calluna »

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?
AliPasha1
Posts: 739
Joined: Fri Sep 17, 2010 2:35 pm
Location: New Orleans,Louisiana

Re: Success Story

Post by AliPasha1 »

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
Diagnosed for PNE by Dr. Jerome Weiss in June 2007.Started PT with Amy Stein in NYC.
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
User avatar
Violet M
Posts: 6770
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Success Story

Post by Violet M »

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
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
GraceUnderFire
Posts: 115
Joined: Fri Sep 17, 2010 1:57 pm

Re: Success Story

Post by GraceUnderFire »

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
Woke screaming from ab hyst 6/08
Diagnosed w/PN, ilioinguinal & iliohypogastric neuralgias 1/09
3 PN blocks w/Dr Quesada
Rt side TIR, ilioinguinal neurectomy & vestibulectomy 5/09 Dr Conway
Left side TIR 2/10 Dr Conway
Potter MRI 9/10 and consultation w/Loretta & Dr Hibner 12/10
Bilateral ilioinguinal, iliohypogastric, genitofemoral release w/Dr. Hashemi Aug 2011 left & Sept rt
Bilateral TG surgery w/Dr. Conway will be in January 2012
PN-SufferVT
Posts: 87
Joined: Fri Oct 22, 2010 8:46 pm

Re: Success Story

Post by PN-SufferVT »

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

Thanks
PN started in June 2009, quickly pain level went to 10. PN probably caused from long hours sitting in car, followed by weightlifting/sports daily. My pain level are now daily between 1 and 4. I do not know if I have true entrapment, but definitely know I have neuralgia of the PN.
User avatar
helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Success Story

Post by helenlegs 11 »

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.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
layla
Posts: 5
Joined: Mon Jul 04, 2011 10:07 pm

Re: Success Story

Post by layla »

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?
layla
Posts: 5
Joined: Mon Jul 04, 2011 10:07 pm

Re: Success Story

Post by layla »

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 ?
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