Need help : I had a purdendal nerve... - Pelvic Pain Suppo...

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Painplus
Painplus

I had a purdendal nerve injury 11 years ago. I can’t sit for more than an hour at a time. I can’t wear pants or even panties. I am in pain all the time. My pain Dr has me on narcotics but they don’t help. I’ve had a stimulator implanted but it doesn’t help. My name is Carol. I would appreciate any advice. I don’t know anyone that has had this problem.

19 Replies
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I have either pgad or nerve entrapment the only releif I get is sitting on a toilet,its horrible I freeze water bottles and keep them down there at night.I tried a stimulator last month but it dint hev I just dont know what to do about it anymore

Hi,

If you are in the US, please contact Dr Stephen Prologo at Emory Johns Creek Hospital. He is an interventional radiologist. He does cryoablation on the nerve and freezes it. It takes a few months, but it works. After suffering 11 years myself, I had it done last April. I still have pain with bowel movements sometimes or sitting but it is much better than it was. I hope this did the trick. If not, I will be right back there to see him.

Cryoablation is typically only temporary, though, until the nerve regrows. I’m glad it worked for you, though!

Cryosblation is mostly permanent. It freezes the nerve at the precise point of origin. You are thinking of radio frequency ablation which burns the nerves. They do grow back.

They grow back with cryoablation too though. On another PN board there are those with repeat cryoablation treatments.

Can you tell me the name of thatp board. I am interested in what they are saying. Thank you.

Pudendalhope.info

swt16s
swt16s
in reply to bettyfl

I had multiple CT-guided (transgluteal) nerve blocks with pulsed radio frequency (PRF) ablation treatments (and intermittent Botox), which does not cause permanent nerve damage. PFR “stuns” the nerve to stop it from sending pain signals to the brain, hopefully breaking the constant influx of pain signaling. They initially gave me about 2 1/2 months of relief. When the PRF stopped working, I turned to cryoablation. The doctor said it may last a year, forever, or somewhere in between. Cryoablation does damage the nerve but is usually not a permanent fix. It is also not without risks. It did not work for me at all, and in fact, my pain is worse after the procedure than it was before.

I am so happy it worked for you bettyfl!!! But everyone responds differently to treatments for PN, as our anatomy and causes are all different. I am now seeking different treatment with Dr. Hibner in Phoenix, AZ. Consulted with him in Dec. and going back in Feb. for ultrasound guided nerve block (vaginally) and Botox targeted to hypertonic pelvic floor muscles, which he thinks is the cause of my pudendal neuralgia. A long way to go from Virginia, but there are so doctors few that really know PN. Might as well go to the best of the best.

Don’t give up!!!! We all deserve so much more out of this life. I refuse to let PN get the best of me!!! Sending healing thoughts to all who are suffering.

Julieamb
Julieamb
in reply to bettyfl

Do you mean it takes a few months for it to work after you get it done?

bettyfl
bettyfl
in reply to Julieamb

It can take that long to fully take affect ir it could be sooner. When i was down to no options left after years of meds, trigger point injections, boton, pt, i came across Dr Prologo. I would do it again in a heartbeat.

anne77
anne77
in reply to bettyfl

Did your insurance cover this procedure?

bettyfl
bettyfl
in reply to anne77

Yes they did.

Hi I suffer too from pudendale neurologia but have had good relief from doing a pudendale nerve ablation. I see Dr. Abdelmalack at the Cleveland Clinic he is a pelvic floor pain management doc and he is amazing people come from all over to see him. It’s a horrible condition but he has really helped me. Xo

What kind of neurostimulator did you have implanted? Was it a spinal cord stimulator or a DRG stimulator? If you have an SCS then see about switching to a DRG stimulator, because those have a better effectiveness rate for pudendal pain.

I’ve had nerve pain for nine years now. Same as you, cannot sit for long. I’ve been getting trigger point injections for two years now and they help about 50%. Thank you for responses above. I will check out the Cleveland clinic doctor . On bad days I think how can I live the rest my life like this? On good days I’m happy that I am otherwise healthy. It’s good to talk with others because I can feel so alone with this pain. Thank you

What kind of stimulator did you have and where was the leads placed??

I had properly performed fluoroscopy guided nerve blocks by Dr. Stanley Antolak in Minnesota. It worked and proved that the rear section of my pudendal nerve was somehow compromised. I sat pain free for 24 hours.

He did surgery and released that branch of my left pudendal nerve as well as my left inferior rectal nerve.....they were stuck to overused and stretched ligaments in my ischisl spine. It worked.

If the surgery had been done sooner, I believe I would have healed sooner and better.

I have 6-7/10 pain but pre-op I almost died from sleep deprivation.

I’m Canadian....no doctor here knows anything about P.N.E.

21Tara
21Tara
in reply to Konagirl60

Konagirl, do you know if nerve blocks don't work that means that an entrapment surgery would not be useful? Also how did the nerve get stuck to ligament, do you know?

Konagirl60
Konagirl60
in reply to 21Tara

The correct amount of anaesthetic and steroid has to be used in order for a nerve block to work. It’s a diagnostic procedure!

I couldn’t sit. After a properly done fluoroscopy-guided nerve block, I sat PAIN FREE for 24 hours. The doctor injected the right spot. He numbed it correctly.

My pain was always burning and I had agonizing electric sparks in my rectum whenever I sat or lay down. The doctor knew it was likely the inferior rectal nerve and/ or the section of nerve that enervated my rectum and perineum.

A metal titanium Filshie clip used in my tubal ligation surgery had migrated to my rectum. It STRETCHED the nerve and it got stuck on fascia and the ligaments adjacent to it.

The doctors saw the clip adjacent to my rectum on an MRI and did not help me.....they were worried about a lawsuit. I was so sleep deprived and in agony that I couldn’t advocate for myself.

That section of nerve was released but it didn’t heal because the clip was left on my rectum for 8 years. It WAS finally seen on an X-ray done by an independent chiropractor several years after my pinched nerve syndrome started and has been removed.

An X-ray was not ordered when all of this started. When I asked my doctor how come an X-Ray was never ordered she replied,” It wasn’t on OUR radar”. Total neglect and abuse.

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