Pudendal Nerve Decompression Surgery?

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Pudendal Nerve Decompression Surgery?

Postby AroraNightfire » Fri Apr 20, 2012 10:40 am

I live in Mass I met with Dr Conway a few weeks ago he's an obgyn in Merrimack NH. He had an emg test done on me and after listening to my story and doing a physical exam diagnosed me with pudendal neuralgia. He told me to consider nerve decompression surgery with him. 40 to 50% of his patients feel significant improvement, 30% notice some improvement and 20% notice no improvement. Please please please if you have had this surgery with him please contact me. I need to ask you some questions. I would like to know if this surgery improved the quality of your life, less pain. Did it make your pain worst after healing?
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Re: Pudendal Nerve Decompression Surgery?

Postby Karyn » Fri Apr 20, 2012 1:16 pm

Hi,
I live in MA and had bilateral TG surgery with Dr. Conway last year. I don't regret it in the least and have realized significant improvements. Please feel free to ask me anything you'd like.
Best regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Re: Pudendal Nerve Decompression Surgery?

Postby AroraNightfire » Fri Apr 20, 2012 3:25 pm

Its to looks to me that your problem is different than me. I never had a hysterectomy or cycts. All that was found with the emg was that there was a dely of conduction on the left side. I've never had atheltic injuries. My problem started at age 18 after I first had penile vaginal sex. I had severe itch in my labia minoras that lasted for years and rawness after urinations. The past year I've had to compress frozen gelpacks between my lips for releif after urinating. The symptoms have evolved recently its gone from my vestibule to my perineum and anal area with rawness. The past year and few months I have developed an unability to sit down without knife like pain in my ass cheeks.

As for the sexual aspect, penile vaginal sex has never been very comfortable, and recently the past year its become horribly painful. My clit also hurts somewhat when stimulated. I'm currently 27yrs old.

I really don't care who sees this. I've been trying to write a book on the past 9yrs but have found it very difficult to focus and write without feeling miserable afterwards. I would rather forget about it.

Do you of anyone with similar symptoms to mine who have had those procedures done? Sorry if its tmi....there is no other way to talk about it nicely.

Bilateral tg surgery? What does that stand for?
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Re: Pudendal Nerve Decompression Surgery?

Postby Karyn » Fri Apr 20, 2012 4:47 pm

Well, my PNE wasn't caused by the hysterectomy or ovarian cysts. Regardless of the cause, an entrapment is an entrapment.
Bilateral = BOTH sides. So, I had nerve conduction delay on the right and left. TG = Transgluteal approach.
Best wishes,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Re: Pudendal Nerve Decompression Surgery?

Postby deBBieW » Wed Jul 25, 2012 3:29 am

Hi Arora,
I've been trying to answer your PM, but for some reason I cannot get the PM to send from my outbox, sorry.
I'll look into the problem and will answer your questions.
You can see my MRI if you want to, I posted it somewhere on this site, look for my posts around the end of april.

Debbie
Vag pain, leg burning 3/11, SIJ inj 7/11, Pelvic PT, Chiro/acupuncture,
2-CT pudendal blks 11/2012, did help, less deep vag pain
Potter MRI 04/2012 - Scar tissue/thickening at SS/ST, scar in Alcock canal -bilateral,
Hibner 6/12 suggests Botox (didnt do), 8/12 more pelvic PT w/ dry needling
Gabapentin 1800 mg, Lyrica 200 mg, 5mg valium, vicodin as needed
Trying to get rid of central sensitization burning pain in my legs, Valium seems to be helping
Looking into more mindfulness options. . . . .
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Re: Pudendal Nerve Decompression Surgery?

Postby helenlegs 11 » Wed Jul 25, 2012 10:17 am

Got to agree with Karyn, Arora, it doesn't matter how it 'started' it could be a combination of things. An entrapment IS. . . .!! and even if it isn't an irritation IS. . . .. . !! too.
Not sure about the rawness :( never suffered from that personally, although a facebook friend of mine has. I am NOT promoting this, but she says she has found great relief from emu oil, it has addressed this raw, sore problem although she still has some pain, at least she has found relief.
This is what she has used http://www.allaboutemu.com/songline-emu-farm
She is English so it is costing a fortune ( I can find all sorts of emu oil in England ??) but though I would pass this on as it may be of benefit. Don't blame me if it doesn't work ;) just relaying info.
I have a distinct clitoral pain too although mine is 'weird'. I get a shooting pain with touch, although the lightest touch/brush wouldn't do it. 'Weirdly' it isn't my actual clitoris that hurts but a pain travels along the back of my upper thigh EVERY TIME it is pressed/touched. My pain Dr (and I :) ) have now diagnosed post femoral cutaneous nerve, perineal branch involvement, as the line of pain (it travels fast(ish) rather than shoots, more weirdness??) is almost exactly the same as this pic shows http://upload.wikimedia.org/wikipedia/c ... ray832.png
I think I am the only person who has this particular problem (anyone??) but mine is definitely a post femoral cutaneous nerve issue at piriformis level as I also have huge problems at the back of my thigh which is served by this nerve.
Of course the dorsal branch of the pudendal nerve also serve the clitoris (and penis) I don't know if this is 'crosstalk' or weird 'wiring' or what but the pain doesn't ever shoot UP, always away or down. They say that the clitoris has around 8000 nerve endings so I suppose they have to come from a few nerve structures? not just the pudendal nerve. Well can only say what my experience is.
This is also very much TMI but that part of my anatomy is no longer associated with sex and pleasure! so I'm almost not bothered anymore but then I am almost 56 so it really isn't so bad for me. Although given the chance :lol:
Take care,
Helen
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.
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Re: Pudendal Nerve Decompression Surgery?

Postby Leilaa » Fri Oct 12, 2012 12:11 pm

Does PNE cause infertility? Any1 experiencing this is infertile?
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Re: Pudendal Nerve Decompression Surgery?

Postby calluna » Fri Oct 12, 2012 10:18 pm

PN has no connection with infertility, Leilaa, we don't have to worry about that. Although sex can be a bit difficult.....!
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Re: Pudendal Nerve Decompression Surgery?

Postby GraceAnn » Tue Jan 29, 2013 8:36 pm

Hi, I just had PND surgery. I had all of the symptoms and tried all of the treatment modalities except Botox and acupuncture. I have posted a dialogue regarding my surgery. Dr. Conway performed the surgery 1/23/13. On one side the nerve had split and twisted around a ligament. The other side had scar tissue. Post surgery I am still having intense burning on left side, under buttocks and down that leg.

Wish you the best. I'm praying for success.....

Grace
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