Health Organization for Pudendal Education

After four months of doctors, I was told that I have pudendal neuralgia. A neurologist did an internal exam and found that this nerve is irritated. I had surgery in March 2019 and the nerve was irritated, probably from the procedure (hysterectomy). I asked the neurologist to have an MRI done, and he said it would not help, since that area has many nerves and it would be hard to target that this is the nerve. I have been searching since May 2019, when I started having burning in the vaginal area everyday and to this day, still do. I'm on Lyrica for nerve pain.
Has anyone had an MRI done to detect whether you may or may not have pudendal neuralgia? I have been told I have a unique case because these doctors don't know how to treat this, much less give me a definitive answer that I'm dealing with an irritated nerve in my pelvic area. I'm frustrated and am looking for a definitive answer, so I can take the next steps to see what I can do to get better. Prior to my surgery I have never had any problems in my pelvic area with any nerve.
Thank you, Dorothy

Hi Dorothy,

MRIs rarely provide a definitive diagnosis of pn, but they are commonly done as a way of ruling out alternative explanations for the pain. I had two MRIs. My first showed nothing, and my second one (done after I'd had pain for 3.5 years) showed edema between the SS and ST ligaments on the left, which was exactly where my pain seemed to becoming from. So, in my case it was somewhat useful, but it is unusual to have that kind of thing show up on an MRI. PN is normally diagnosed with symptoms, information about the onset, and a nerve block (putting a numbing agent on the nerve) that reduces the pain. But, if you do get an MRI, it may make sense to use Dr. Potter's protocol for the MRI and to do it on a 3T MRI. That is what I did the second time. I got the protocol from Potter's office (they emailed it to me), and I gave it to my ordering physician, who then sent it to the place that was doing my MRI. I also talked with the MRI place to be sure they could follow the protocol. So, if you do get one, it may make sense to use her protocol. If you pm with your email address, I can send it to you over email.

April

Hi April:

I'm sorry I have taken so long to answer about getting Dr. Potter's protocol for the 3T MRI.

I've been trying to check into Dr. J. David Prologo''s pudendal nerve cryoablation procedure, and if there has been any further news or updates to it. I read the posts to it on this forum. I also want to know if there are other doctors performing this and where. Also, stories of people who have had this procedure done and how effective it's or is not.

I would appreciate any information you can provide me since I continue to have this burning pain in my vaginal, anal area. I'm doing physical therapy for sciatica and tendonitis in my lower back that resulted in standing too long because I could not sit at work.
Thank you,
Dorothy

Hi Dorothy,

I just sent you the protocol. You may want to remove your email address from the site, though, since anyone can see that.

I have heard of only a couple of successes with cryoablation, but I've heard of several failures and in a couple of cases people got worse. Ice and heat are useful for pain. Have you tried that?

April

Hi April:
Thank you for the e-mail concerning the protocols. Yes, I do use ice everyday.

I'm also trying to find out the procedure code for pudendal cryoablation. I called up at Emory in Georgia and was told to go on the internet and Google this, since I have not been up to see Dr. Prologo. Any suggestions?

Hi Dorothy,

I wished I could help you answer this question, but I don't have any knowledge on cryoablation. However, I would suggest that doing non invasive treatments first, before doing invasive treatments. It is always hard to tell how a person is going to make out, with invasive treatments.

Things like PT and medications may be worth a try first.

I hope this helps.

Take care,
Wendy

Hi Wendy:

Thank you for your advice. Right now I'm working with my personal trainer to help me with my sciatica and lower back pain. When I'm well enough on this end, I'm going for pelvic floor therapy to help address the pudendal nerve issue. I'm hoping this will help. After this, I will see.
Thanks,
Dorothy

Hi sedona,

I considered cryoablation in 2017 but decided against it because it was not covered by insurance. In fact, Emory did not even send my ablation procedure info to my insurance company, because they knew from experience that insurance companies (with the exception of Medicare) don't cover that because it is considered experimental. (And they didn't tell me they weren't sending it to them until the day of the procedure (when I was, of course, already in Atlanta)). But it's possible this has changed and the procedure is now being covered now. They told me to figure this out on my own too, and I used a general ablation code to determine my coverage, not knowing that the general code did not specifically apply to the ablation of the pudendal nerve. So, be sure to have Emory financial staff send the paperwork into your insurance to see if it's covered. If they won't do it, it's likely because they know it's not covered (although you should ask them why if they don't).

April

Hi April:

Thanks for all your information pertaining to non-coverage for the pudendal cryoablation at Emory. You were the one who sent me the protocols for the 3T MRI in my yahoo e-mail I'm going to the center who said they have the 3T machine. I made a copy of the protocols and will see if they do this procedure.p I won't consider cryoablation until I have done PT for my sciatica and pelvic floor therapy for the pudendal nerve.

Thanks for all the information you have shared. I wish you all the best this new year. How are you doing with your pudendal nerve?

Dorothy (Sedona)

Great. Glad you are using the protocols. Let us know what you find out.

I was actually very glad that I didn't do the cryoablation. I have not seen many successes with it. Prologo was in the process of collecting data on the outcomes from this when I was there 1.5 years ago. If he had data showing a significant decline in pain, I'm assuming he'd be publishing it, and I haven't see anything from him (or anyone else) on this yet. So, you may want to wait until there is clear evidence that it works.

I'm doing well. I still have to ice, but not nearly as much as before my surgery (which was 13 months ago), so I'm very happy I did the surgery. I also think there's a chance that my pain will continue to decline.

April