Seeking Advice

[darwin]

Hi all! I'll be honest, I have been too nervous to really dig into the site since my symptoms are consistently not severe and I don't want to freak myself out. I apologize if I have missed any rules or guides that are meant to be read first.

My primary goal is to get off of medication so that I can go back to work. I'm currently on medical leave until the end of November. I am a 35 year old male and I live in NYC.

I have several inter-related issues, primarily on my left side: my SI joint is hypermobile, I have pudendal neuralgia, and I have IBS.

The SI joint hypermobility began in September 2013. It took years to diagnose and seemed to be caused by weak glutes. Through MRIs, diagnostic nerve ablation (L4-S1), PT (primarily core and glute strengthening), and chiropractic, I have made significant progress in this area. As of 2024, I feel that this issue is mostly under control. I am able to mobilize the joint myself when needed and regular running keeps the pain to a minimum. I no longer take any medication for this issue.

My IBS-D had several causes. I took NSAIDs and PPIs to help with the back pain for several years and then swallowed a chicken bone in 2015. These combined led to SIBO (treated with antibiotics) and stomach ulcers (treated with antibiotics). I followed a strict low fodmap diet roughly from 2015-2022 and took viberzi. In 2023, I tried an FMT from humanmicrobes.org and had significant improvement, allowing me to significantly expand my diet and stop taking viberzi. Although the effects of the FMT have worn off, I am still about 50% better than I was. It is unfortunate that the FDA is no longer allowing human microbes to sell stool for FMTs and I am investigating international options.

My pudendal neuralgia began in 2021. I tested positive for a UTI (resolved with antibiotics) and rode a bike with a damaged bike seat for several months. I initially started with a urologist, who performed a cystoscopy and ultrasound of the scrotum, both of which came back negative. He referred me to a pelvic PT, but the first office I tried was not helpful. This PT referred me to Dr. Nel Gerig in Denver. She performed nerve blocks and trigger point injections, as well as prescribing suppositories. She was excellent but unfortunately retired over a year ago and had no real replacement. She did refer me to PT Chelsey Vasquez, who is by far the best pelvic PT in Colorado. Nel Gerig recommended Dr. Kenneth Peters in Michigan and I have an appointment set up in February 2025.

I moved to NYC and have tried to build a network of support for these issues, but have not had great success. I went through the 6 course hydrodisection/steroid block with Dr Reutter. The hydrodisection had temporary relief, but did not stick. He suggested an MRI, which showed "potential" pudendal neuralgia on the left side. For PT, I initially went to BB, but had a bad experience. I ended up at Solstice PT and have been very happy with their work and knowledge. They recommended botox of the obturator internus which reduced the pain level by 25-50%, performed by Dr. B. They recommended pulsed ablation of the pudendal, which had minimal effect (Dr. Witkins).

Solstice also recommended Dr. S, a regenerative medicine doctor, who believes that the SI instability is causing the pudendal neuralgia. He is performing a course of bilateral prolotherapy of the SI. I have completed 2/4 procedures but have not have significant change in pain levels for either the pelvic floor or SI joint. He also did a diagnostic block of the pudendal which resolved symptoms but only lasted for a couple of hours.

I have gone through a variety of medications. It seems that I am extra sensitive to many of them, which has made working difficult. While I was still working, I was on a course of 300mg 4x/day of gabapentin and a suppository of tetracaine, baclofen, cyclobenzaprine, and gabapentin. This allowed me to function mentally at 75% and provided just enough relief to get through the day. I am convinced that there is both a muscular and nerve component to the issue, and I started medical leave to try a diazepam/baclofen/gabapentin suppository. This has significantly reduced muscle tension but does not resolve the nerve pain.

I think that is most of the relevant historical information. My current baseline pain level is 2/10 and I have no ED. I'm currently on the diazapam suppository and the oral gabapentin. I am following this for my SI joint instability since I have had some success with it in the past. As mentioned, I am currently undergoing prolotherapy. I see Solstice PT weekly and Dani Luna (IPA PT) weekly. I try to run daily and am starting yoga to try to help with core stability. I am going to try a pubic rectalis trigger point injection and potentially retrying botox in the obturator internus.

I don't feel like I have a doctor that is helping drive this overall. Dr. B is excellent at injections, but provides a buffet of options without much guidance. Dr. S bases his approach on diagnostic orthopedic injections doesn't seem to have a holsitic view of the problem. I am looking for recommendations on things to try as well as recommendations for true experts in the field. I'm willing to go anywhere to see them.

I apologize if this rambles or is unclear; the diazepam gives me pretty significant brain fog.

Edit: I anonymized some names since I don't want to upset any doctors that I'm still working with.

[Violet M]

Hi Darwin,

Sounds like you've been through a lot already. I can relate to some of what you are experiencing because I had a hypermobile pelvis and SI joint dysfunction with pain significantly worse on one side than the other. I don't know if this is what is happening with you, but for me the SI joint and pelvic instability were related to chronically strained ligaments that weren't providing enough support to keep the pelvis stable and in alignment. Due to the lax ligaments and misalignment, pudendal nerve was compressed between two of the ligaments (the sacrotuberous and sacrospinous ligaments) at the level of the ischial spine. You can see where the ischial spine is located if you go to our anatomy page: https://www.pudendalhope.info/category/anatomy/
That is the site where pudendal nerve injections are typically given. They can also be given in the Alcock's canal. Unfortunately, in 20 years of moderating this forum, I don't know of many people who have gotten permanent relief from pudendal nerve injections. Recent guidelines have come out from some major organizations saying there is no evidence for using steroids in pudendal nerve injections. So, I see them as primarily valuable for diagnostic purposes. See this thread for more on that topic. viewtopic.php?t=11593

Pudendal neuralgia is kind of a general term that describes pain in the areas innervated by the pudendal nerve, but it doesn't necessarily tell you what the cause is. Pudendal nerve entrapment (PNE) is a more specific term that describes one of the possible causes of pudendal neuralgia. Some general criteria for determining whether you might have PNE are discussed in the following article:
https://www.pudendalhope.info/wp-conten ... iteria.pdf 

In my case I had PNE, and after having pudendal nerve decompression surgery, I am 95% better. I did some prolotherapy after PNE surgery that seemed to help stabilize the pelvis a bit, but I think it was the PNE surgery that really gave me back my life.
Given that fact that what you are describing meets many of the criteria listed in that Nantes Diagnostic Criteria article, has anyone suggested that you might possibly have pudendal neuralgia that is caused by a nerve compression? You say you have pudendal neuralgia, so I'm assuming that means your pain is in the distribution area innervated by the pudendal nerve. If that is the case, it might make sense to at least see one of the surgeons listed on this website and get their opinion.
https://www.pudendalhope.info/united-states-physicians/
There may be other good surgeons that I'm not aware of. There are also some excellent surgeons in Europe.
If surgery isn't something you would even want to consider, one of the options it looks like you haven't tried yet is neuromodulation. Some people get some relief from it.
You say your pain isn't that bad, but it sounds like it is severely affecting your life, given the fact that you have had to take medical leave and take medications. I wish you the best in finding the right treatments. Hopefully some of our other forum members will have some words of wisdom for you.

Violet

[darwin]

Thank you for the detailed response. At your recommendation, I have set up an appointment with a surgeon from the list for tomorrow.

It sounds like your experience has been largely similar to mine. I have been proceeding under the assumption that I have PNE, though I was unaware of the name. Based on the general criteria

• Pain in the Territory of the Pudendal Nerve: From the Anus to the Penis = Match

• Pain is Predominantly Experienced While Sitting = Match

• The Pain Does Not Wake the Patient at Night = Match

• Pain With No Objective Sensory Impairment = Match, though I'm not 100% sure I understand this. I don't "feel" less in the area even though there is pain

• Pain Relieved by Diagnostic Pudendal Nerve Block = Match

I skimmed through the complementary criteria, of which most (but not all) match as well.

Additionally, here is the result from the pelvic MRI:

EXAMINATION:
MRI OF THE PELVIS WITHOUT INTRAVENOUS CONTRAST

CLINICAL INFORMATION:
Left pudendal neuralgia

TECHNIQUE:
3 Tesla MR Neurogram of the pelvis without intravenous contrast using multiplanar multiecho technique.

FINDINGS:
Nerves:
Lumbosacral roots: L4-S3 nerve roots are unremarkable.
Obturator: Unremarkable.
Femoral: Unremarkable.
Pudendal: There is questionable enlargement and increased signal of the segment of the left pudendal nerve between the sacrospinous and sacrotuberous ligaments and the proximal margin of Alcock's canal. There is no evidence for extrinsic mass compression. No significant sacrotuberous or sacrospinous ligament thickening is present. The right pudendal nerve is unremarkable.
Sciatic: Unremarkable.

Muscles/subcutaneous tissues:
No parapelvic muscle atrophy or denervation is present. The piriformis muscles are symmetric and unremarkable with no muscle hypertrophy or accessory muscle slip. The quadratus femoris muscles are unremarkable with no evidence for ischiofemoral impingement.

Subcutaneous tissues are unremarkable.

Tendons:
There is mild bilateral hamstring origin tendinosis. The iliopsoas and rectus femoris tendons are intact.

The adductor tendons are intact. There is no tear in the rectus abdominis-adductor aponeurotic plates.

Osseous structures:
No fracture is present. The hip joints are well maintained with bilateral femoral cam morphology. Sacroiliac joints are preserved.

Pubic symphysis is well maintained with no evidence for osteitis pubis.

Other:
The visualized pelvic viscera is unremarkable. There are tiny bilateral fat containing inguinal hernias without significant accentuation on Valsalva.

IMPRESSION:
Questionable left pudendal neuritis; no evidence for extrinsic mass compression

I have tried some neuromodulation with limited success but pretty extreme side effects. I'm definitely ready for surgery at this point. Thanks again for the input and let me know if you have other ideas.

[Violet M]

Hi Darwin,

It sounds like you have done a lot of research and that you are well-informed. I hope your appointment went well and that whatever treatment you pursue, you will have success.

Violet