Health Organization for Pudendal Education

Hi All,
I'm new here, so as you can guess, I'm suffering from pudendal neuralgia...again. I say again, because I was completely free of symptoms for the past 3 years up until a month ago. I always promised I'd share my story online if I ever got better, and I never did. So here it is.

In 2006 I had to undergo a biopsy of the cervix. I was in the stirrups for a LONG time and it felt like the speculum was too wide and applying pressure that caused a great deal of pain. I am tough so I didn't say anything and just endured it, wishing for it to be over soon. After that, I was left with pudendal type pain. I had vulvar burning, swelling, a torn perineum, I bled for over a month, I had the anal tightness and foreign body feeling and pain with bowel movements. I could no longer have sexual intercourse due to my symptoms, and sitting made my pain much worse. I went from doctor to doctor trying to find a diagnosis. I finally was diagnosed with PN by Dr. Richard Marvel. He told me I'd never get better, and I'd have to manage this pain for the rest of my life. I went to Andrew Goldstein. I received a series of PN blocks with Dr. Conway in NH (3), I also had a nerve conduction study which showed a significant latency on my left side, which I already knew but confirmed the clinical diagnosis. I had relief from my symptoms for HOURS or as long as the pain medication lasted. I was told there too that I'd never get totally better, but with medications and conservative therapy I could reduce my pain. At that time, I believe there were only 3 places in the world that performed PN decompression surgery, but I didn't see many published papers and the stats were not satisfactory for me to undergo a radical treatment. I went on 300mg of pregabalin, 50mg of imipramine, I used a cushion, and lidocaine. I received PT locally weekly for almost 2 years with little improvement. Finally, in 2009 I went to PHRC in SF for 6 weeks (I had to go part time at my job, but I did take 6 weeks of short term disability for treatment). I had sessions with the various PTs there, 3 times a week for 6 weeks. It was insanely expensive as my insurance did not cover this. I also saw a Naturopathic doctor by the name of Amy Day while there. She put me on an "anti-inflammatory diet" which included eliminating gluten, dairy, most grains, processed sugar, and alcohol. I went on numerous supplements including fish oil, Mag Citrate, and curcumin (among others). She also worked on balancing my out-of-control hormones. I periodically went to SF for the next 2 years for follow up treatments (2-3 sessions for a total of maybe 7-8 more times). Overall I had about 30 sessions with them. I gradually started to feel better probably 6 months following my PT and diet changes, but the improvements were gradual. I'd say 4 years after my injury and 1 year after my PT, I noticed a significant change. I could "kinda" have intercourse (burning and slight flare afterwards), but I huge milestone. Finally around 6 years after my initial injury I'd say I was 90% better with still being on meds. In 2017 I got pregnant (not planned but a huge blessing) and had to come off my meds. I was a nervous wreck, but I noticed I didn't really have an increase in pain. 9 months later I had a scheduled C-section and a beautiful baby girl. I was planning on going back on my meds and noticed...my pain never returned. I could sit as long as I liked. I could have sex. I had zero pain. That lasted for 3 years. I wanted to give hope for those young women out there reading who have high hopes on one day having children and who think that because of the pain, that it may never be possible (I was 38 when I got pregnant)! Never say never! I had 2 doctors tell me that I'd never get better and it would be a life long struggle.

Unfortunately, I have reinjured my nerve. I obviously have some sort of anatomical issue on my left side that causes me to be predisposed to this. I had a miscarriage last month and a scheduled D&C. Again, I was out and in the stirrups for a prolonged period of time. The following day my sacrum was bruised and painful. I didn't think much of it, but slowly over the past few weeks my pudendal pain has returned with a vengeance. I'm on all the same drugs I used before to successfully treat this. I'm worried that my nerve was actually compressed (or stretched in the stirrups?) this time. I have not had the opportunity to start PT, but it's in my plans in the next several months. I head to a pain specialist tomorrow to discuss options. I am a scientific researcher by profession so I've spent the last few days reading PubMed literature on the latest treatments for PN since the year 2011 when I last probably researched these treatment options. Here are my questions for the community:
1. Has anyone had stem cell injections (either embryonic or from your own bone marrow or adipose tissue)? Outcomes? The literature is mixed reviews
2. Has anyone had PRP injections? Outcomes? Also mixed reviews and sounds like the way they process they cells can vary greatly from clinic to clinic.
3. Has anyone had cryoablation? Sounds scary to me since my goal is the HEAL the nerve if possible, but anything to get out of pain.
4. Has anyone had DRG implant in the spine to disrupt pain signals?

Of course, decompression surgery would be the last line of defense since the improvement/success rate is only ~30% (not good enough imo). I really feel that the doctors need to share with the community more data on this. It's unfair practice and seems unethical to hide this data from us when we are considering a potentially life altering surgery. But, for anyone who has made it this far reading my post, has anyone undergone surgery with Dr. Conway or Hibner with a total cure as a result?

Anyways, I'm new here, but not new to PN. I look forward to reading through the forums (except I notice most topics have no responses?) and would be happy to answer any questions from my experience. I know everyone's experience is SO individualized, the cause, the cure, the pain level, the response to treatments and medications. I just wanted to share my personal experience.

Good luck and stay strong/positive...I know it isn't easy.

Hi,

I developed PN in 2004 and tried many different treatments including surgery. I had about five years almost free from pain from about 2008-2013. My pain then returned worse than it had been before. I saw many of the same doctors as you, but PT (including as an out of town patient with PHRC) was not successful for me. I had cryo in 2016 and it failed to relieve my pain. In 2017, I learned about PN pain coming from the spine when I discovered that I have Tarlov Cysts. After all this time I don’t know exactly why I have this pain I am sorry you have found yourself with these issues again.

Stephanies

Hi Stephanies,
I'm so sorry to hear that your pain has returned as well. I had not heard of Tarlov cysts so had to do a quick google search. Do you think this is the cause for the return of your pain? Did they discover the cysts via MRI? Are there surgeries for that condition as well? If I do not respond to treatment this time, perhaps I'll say something to my pain management specialist about these to rule that out as a contributing factor. I did see in my search that oftentimes they can be asymptomatic and that an event (such as a fall) will lead them to start causing issues.
The good news is that you did go through a period of time where you were pain-free. Hoping you can get back to that again! Good luck.

Thanks for your response.

Hello Luvnature,

I love your username -- I love nature too. Sounds like you are the outdoorsy type. Are you a hiker/active person? I'm sorry about your miscarriage.

From what I have read on this forum over the years, I would agree with the literature that PRP, stem cells, cryoablation, and DRG neurostimulation have mixed reviews. You can do a search on Kit's posts on this forum to read about his success with DRG neurostimulation.

Since you are only one month out from your re-injury I'm not sure DRG would be the place to start. DRG would mask the pain but not solve the root problem and you still have some options to try to get to the root of the problem. Since your pain is primarily on one side, your assessment that you have something anatomical on that side makes a lot of sense. My pain was primarily on one side too. After trying PT with no success, I had successful PNE decompression surgery from Dr. Bautrant over 16 years ago but I'm not sure he is still doing the same approach I had. My one-sided pain was related to exercise with chronically strained ligaments, pelvic instability, SI joint dysfunction, and pelvic misalignment. Dr. B. shaved off some of the sacrotuberous ligament at the falciform process, opened up alcock's canal, and cut the sacrospinous ligament. After surgery, I had prolotherapy which helped stabilize the pelvis. I still have to be careful but I have a great life now. I know of a number of people who had excellent success with surgery from Dr. Hibner. I heard he is opening a new practice and is working with Sarton PT in southern CA. But since you are just one month into this new pain it doesn't seem like you would even want to consider surgery yet.

In answer to your question about Tarlov cysts, I have known some people who had surgery to have them removed. Some were successful, some were not.

Since you recovered with PT previously, that seems like a smart place to start again, although I know it is very expensive and time-consuming. But you could at least get an evaluation to see if you have tenderness to touch, when pressure is applied at the ischial spine or along alcock's canal where the PN runs. They could also evaluate you for pelvic misalignment, SI joint dysfunction, or pelvic instability as a possible anatomical cause for the left sided pain. You might also want to consider a 3T MRI or an MRN, to rule out anything obvious, although some of the surgeons have said that the MRI/MRN is not always accurate for determining if you have a nerve compression.

Unfortunately, it's hard to predict which treatments are going to help before you try them so I think a good rule of thumb is start with least invasive first. One exception would be if all of your symptoms, diagnostics, history, and clinical exam are pointing toward a nerve compression, and if your quality of life is pretty bad, to the point where you are willing to risk possibly getting worse, it might be worth it to try PNE surgery before resorting to neurostimulation, even though neurostimulation is less invasive.

Were you able to get any good advice from your pain doc?

Violet

Hi Violet,
Thank you for your thorough and kind response! I'm so happy to hear that you have a good quality of life now following your decompression surgery. Are you still on medications or pain-free without them?

I do love nature and would consider myself to be outdoorsy. Since my baby was born 2 years ago, I don't get to hike as often any longer, but we do (did until this re-injury) still take daily walks outside. I've taken her "hiking" with me a few times to try to instill a love and appreciation for nature at an early age. The tranquility of being outside where it's quiet and away from all the activity of every day life is so important.

My pain specialist was very reasonable and had a great deal of recommendations that I agree with based on my research. He did not order an MRI or MRN to start with since he said those are often inconclusive. I do think they'd be good for diagnosis neuromas (maybe?) or the Tarlov cysts though. He wants me to start with 6 weeks of intensive PT (3x/week) and go from there. I hopefully will at least get some time away from work with FMLA leave to try to get this sorted out. I restarted my lyrica and imipramine (though he wanted to change my meds I was reluctant due to just being in an emotionally unstable state at the moment). He added something to help me sleep at night (tramadol) and also Flector anti-inflammatory patches to wear over the course of the nerve every 12 hours. Beyond that, he wants to inject my S2, S3, S4 nerves directly where they branch from the spine with steroid. If I still haven't found relief, he suggested the Sprint temporary nerve stimulator for 60-90 days. Then he'd try the prp or stem cell infusions (he was very strict on saying he trusts very few of these practices and most are 'evil empires' out to make money on the desperate). After that would be pulsed radiofrequency and beyond that either DRG implant or nerve decompression surgery. I'm hoping I can find relief from a combination of the above treatments. He did say, for those who have been asking about cryoablation, he does not recommend that for the Pudendal nerve. He said that since this is an autonomic nerve, that he didn't want to disrupt those important processes. He also does not believe in completely 'burning' the nerve (I forget the name of the treatments) for the same reasons.

I do think that it's important to note something that I have discovered this week. MANY PEOPLE ESP WOMEN ARE GETTING PN DUE TO THE LITHOTOMY POSITION THEY ARE IN DURING PELVIC SURGERY!! For me, I now know that I cannot tolerate being in the lithotomy position and for me personally, this is what is leading to my pudendal compression/neuralgia. Here is a link I found that I think could be helpful. If you are a woman and have experienced PN as a result of pelvic surgery, I would take a look at this information AND I would avoid being put under anesthesia for pelvic surgery in that position. If your doctor doesn't agree with finding a position that will work for your body, look for a new doctor/surgeon/practice; I know I will. I really feel the medical schools should be screaming this info to their students and a PSA should come out concerning the potential for neuropathies as a result of positioning during surgery/procedures. If I hadn't been placed into this position AGAIN for my D&C, I'd probably still be pain-free today. https://www.uptodate.com/contents/nerve ... ic-surgery

The Dr who suggested DRG, I would check out what money he is getting from the company that makes them.
I did that when I went and had the doctor SALESMAN try to sell me on the idea. I found out he was getting 400K one year and over 300K the year after, mostly from the company making the device.
I also looked far and wide to see who had long term luck with this device and was not able to communicate with anyone who did regarding PNE.

Ray

Hello Luvnature,

In answer to your question about pain medication, no I do not take anything now. I love to hike in the mountains and I am able to do that again.

I agree with you that the lithotomy position can be problematic for some women. But many women tolerate it without a problem which makes me wonder if there is something in our anatomical make-up, something mechanical, or a genetic predisposition to developing PN. Then when we are exposed to a certain trigger, such as lithotomy position, or heavy exercise, we get PN whereas someone else might not. Dr. Bautrant told me he feels it can be genetic because he has seen it run in families -- one in particular where a grandmother, mom and daughter all 3 had PN.

Violet

Hi Ray,
Thanks for the heads up on the DRG. That was the pain management doctor's very last recommendation if all other options were exhausted. I know that DRG is relatively new, and especially for a rare condition such as PN, so very limited data (one study published in a journal in 2019). I had no idea that doctors were still allowed kick-backs from pharmaceutical (or devices) companies though...that is good to know. My best friend is a practitioner in that office so I'd be able to find out more.
Anyways, I got much better with intensive PT + pain medication + lifestyle changes + tons of gentle yoga before so I'm hoping that will be the case again this time (even though finding the time and money with a little one while also trying to remain employed is a challenge!). Wishing you well!

Hi Violet,
That is so amazing! I'm so happy to hear this! Thank you for all you do for the PN community. I think as much as it's comforting to know we aren't alone in this pain, it's even more amazing to hear of success stories, so thank you for sharing yours.

And yes, I agree that there must be some anatomical predisposition for developing PN and then something sets it off. It would just be nice to be so lucky in our lives to never have that event occur to set it off! For me, I always studied for years and years on my floor sitting with my left knee bent almost like a pigeon pose in yoga. I have no idea why I chose this over sitting at a desk, but it's just something I found comfortable and I was able to write with my right hand. Sometimes I wonder if I didn't change my own anatomy on my left side by doing this. I never had true PN pain until after my first lithotomy-positioned surgery, and now again 14 years after the first time.

Thanks for your responses. Take care.

Violet M wrote:Hello Luvnature,

In answer to your question about pain medication, no I do not take anything now. I love to hike in the mountains and I am able to do that again.

I agree with you that the lithotomy position can be problematic for some women. But many women tolerate it without a problem which makes me wonder if there is something in our anatomical make-up, something mechanical, or a genetic predisposition to developing PN. Then when we are exposed to a certain trigger, such as lithotomy position, or heavy exercise, we get PN whereas someone else might not. Dr. Bautrant told me he feels it can be genetic because he has seen it run in families -- one in particular where a grandmother, mom and daughter all 3 had PN.

Violet