Health Organization for Pudendal Education

Hello,

I’m reaching out to share my complex journey with chronic pain and seek advice from others who may have similar experiences. Over time, I’ve experienced various symptoms affecting multiple areas:
• Perineum pain, particularly at the base of my scrotum, with a slight burning sensation.
• Chronic scrotal pain.
• Pain at the back of my thigh.
• An aching sensation in my heel.
• Pain behind my knee, where the hamstring and calf connect, especially when crouching.
• Pain at the tip of my penis, primarily on the right side.
• Loss of sensation in certain areas.

I’m an active individual, going to the gym daily, and I’ve wondered if my high pain tolerance has contributed to the progression of these issues. I’m at a point where I’m considering surgery as my quality of life is deteriorating and I can’t fathom things getting worse then where they are currently.

I’ve been diagnosed with bilateral pudendal neuralgia, pelvic floor dysfunction, and bilateral neuropathy of the posterior cutaneous nerve of the thigh. I’ve also been on medication for about six months, including gabapentin and baclofen.

Considering surgery has been on my mind, but I wonder whether addressing my pelvic floor dysfunction first would be more effective, or if both should be tackled at the same time. I’ve consulted with various specialists, including Dr. Michael Hibner, who suggested Botox as a treatment option. However, I’m uncertain about the best course of action.

I’ve also consulted a doctor in Russia, Dr. Organes Dilanian, who, alongside a team of specialists, identified scar tissue. This finding has added to my uncertainty, as I’ve been told by others that scar tissue isn’t visible through an ultrasound.

Given my ongoing symptoms and the mixed information I’ve received, I’m feeling lost about the next steps. I’m eager to hear from others who might have faced similar challenges or have suggestions on how to navigate these complex issues. Any advice or shared experiences would be greatly appreciated.

Symptoms:
- Pain in the tip of the penis (predominately a dull ache on the right side and hurts to the touch)
- Discomfort
- intermediate pain in the side and back of the thighs
- Scrotal pain
- intermediate pain during defecation (stabbing pain)
- Loss of sensation in the tip of the penis

Current medication:

- Gabapentin 1500 mg/day
- Baclofen 30mg/day

Diagnosis:

- Pelvic floor dysfunction and myofascial syndrome
- bilateral pudendal neuralgia
- bilateral posterior cutaneous nerve of the thigh neuropathy


Best of health to everyone

Hello,

I'm sorry to hear you are on this journey. I can relate to your love for being active as weightlifting is what got me into trouble.

I'm not sure what the best course of action would be for you, but I do have a couple of questions and ideas that might help you with your decision. What type of surgery are you considering? If you are considering pudendal nerve decompression surgery, you would want to be quite certain you have pudendal nerve entrapment (PNE) and not just pudendal neuralgia before going ahead with surgery.

Betterdayscoming wrote: ↑Fri Nov 22, 2024 9:14 pm I’ve also consulted a doctor in Russia, Dr. Organes Dilanian, who, alongside a team of specialists, identified scar tissue. This finding has added to my uncertainty, as I’ve been told by others that scar tissue isn’t visible through an ultrasound.

Was the scar tissue identified by Dr. Dilanian's team discovered via ultrasound? If so, you could consider an MRI too if you haven't already done one. I had MRI's of the lumbosacral area and the lumbosacral plexus. It's important to rule out anything obvious in those areas. You can now get an MRI of the pelvis that enhances the images of the nerves and can sometimes show scar tissue/entrapment of the pudendal nerve. I don't know where you live but if you go to our website at pudendalhope.org and from the homepage go to the list of doctors you can find Hollis Potter's contact info in the US doctors and find out if there are any doctors near enough to you who use her MRI protocol. If you already have scar tissue, having surgery could potentially cause more scar tissue. Does your doctor have a plan to prevent more scar tissue from forming and just re-entrapping the nerve? Some people tend to form more scar tissue than others.

Even MRI's don't always show an existing entrapment so it's important to have pudendal nerve blocks before considering PNE
surgery. How you respond to nerve blocks can indicate whether you might have an entrapment. You may want to read the Nantes Criteria for determining if you have a nerve entrapment.
https://www.pudendalhope.info/wp-conten ... iteria.pdf
I don't agree with the criteria 100% but it is sort of a guide for helping you to determine whether to have surgery. Entrapments often present as unilateral pain.

Since you have a diagnosis of pelvic floor dysfunction, I'm assuming you've been evaluated by a pelvic floor physical therapist? If so, did they find any contributing factors such as sacroiliac joint dysfunction, pelvic misalignment, or hypermobility? If your pelvis isn't stable, the ligaments can press on the pudendal nerve and entrap it. This might not show up on an MRI or ultrasound. When they do a rectal exam and press on the pudendal nerve at the ischial spine is there tenderness there? That can be a sign of nerve entrapment. Does internal myofascial release help or does it irritate the nerve more? One of the ways I decided I had a nerve entrapment was that internal work caused a major flare-up of the nerve instead of calming down the muscles.

Sorry for so many questions. I am not trying to get you to answer them here, but just throwing them out there as things you would want to consider before heading into surgery. Another question you want to ask yourself is whether your pain and life are so bad that you are willing to risk getting worse with surgery or Botox. Usually people do fine with treatment but there are some slight risks involved and you need to know what those are from your doctor before you go ahead with treatment.

Wishing you the best with your decision.

Violet

Hi Violet,

Thank you so much for taking the time to write such a thoughtful reply. I’ve been following this forum for over a year now, just reading everyone’s stories, and I finally decided it was time to share mine and ask for advice. I also want to say how much I’ve appreciated your replies over the years they’re so full of care and thoughtfulness, and it really shows how much you want to help. It means a lot to me and, I’m sure, to everyone else here.

To answer your questions:

The type of surgery I’m considering is transgluteal decompression with Dr. Aszmann. It feels like a big step, but the scar tissue they found has been a major push for me. Dr. Dilanian’s team seems pretty confident that scar tissue is involved, and after dealing with this for eight years (I’ve had symptoms since 2016), I can’t ignore how much worse things have gotten. I’m 24 now, and the idea that pelvic floor spasms or myofascial issues could have caused scar tissue compressing my nerve really resonates with me. I’ve read that surgery becomes less successful after the ten-year mark, and with my symptoms getting exponentially worse over the past two years especially in the last eight to ten months I feel like I need to act now if it’s the right option.

Yes, the scar tissue was identified via ultrasound, and I also had an EMG with Dr. Dilanian’s team. The EMG confirmed nerve-related issues, which adds to my belief that surgery might help. I also had an MRI of my pelvis and lumbar spine, but nothing significant showed up there. I’m not familiar with variations of pelvic MRIs, but I’ll definitely look into Hollis Potter’s protocol as you suggested thank you for pointing me in that direction!

I understand the concern about surgery potentially causing more scar tissue, and it’s something I’ve thought a lot about. I do trust Dr. Aszmann he has a strong reputation and is known for his expertise—but I haven’t had a chance to discuss the specifics of the surgery with him yet. I’ll be sure to ask about how he plans to manage the risk of scar tissue formation when I meet with him.

Regarding pelvic floor dysfunction, I’ve been diagnosed with it, but I haven’t worked with a pelvic floor physical therapist yet. Ironically, I was supposed to have my first appointment tomorrow, but my therapist got sick, so it’s been rescheduled for next Monday. I’m definitely looking forward to it. Honestly, I’ve avoided pelvic floor therapy for a while because it wasn’t something Dr. Dilanian’s team emphasized, and I’ve read a lot of mixed success stories about it. Part of me feels like my issue isn’t that simple, and with how long this has been going on, I’m worried that therapy alone won’t be enough. That said, I know I need to explore every avenue, and I’m keeping an open mind going into this appointment.

As for internal myofascial release or anything like that, I haven’t tried it yet, so I can’t say if it helps or makes things worse. A lot of the questions you raised about contributing factors like pelvic misalignment, SI joint dysfunction, or hypermobility are things I plan to discuss with the physical therapist when I see them.

And please don’t apologize for asking so many questions! I actually really appreciate how thorough you are it shows how much you care, and it’s helping me think through everything I need to consider. This whole journey has been overwhelming, and having someone like you guide me with such thoughtful questions means so much.

Thank you again for your kindness and support. I’m sure I speak for everyone here

I'm sorry to hear you are going through this at such a young age -- not that it's good at any age, but you have so much of life to look forward to. I sincerely hope you find a treatment that works for you. Dr. Aszmann has a good reputation from what I have read so I expect he will be able to advise you well. Does he require diagnostic pudendal nerve blocks before doing surgery? I don't know of many people who got permanent relief from them, but they can be a valuable diagnostic tool to confirm your diagnosis. New guidelines by some major organizations are showing that there is no evidence for using steroids in them.

Regarding PT, I think sometimes just the thought of being assigned a bunch of exercises, which is what often happens, is not appealing. I don't think pudendal neuralgia is something that calls for a lot of exercise. But it would make sense to at least be evaluated by a PT who knows what they are doing just to be sure you haven't overlooked something. But I agree, if you have been battling this for several years now and you are getting worse, you don't want to waste a lot of time on PT unless it's obviously helping right away. I knew pretty quickly that it wasn't helping and I moved on to surgery.

Since you've already had MRI's and the ultrasound did show scar tissue, I'm not sure I would spend a lot of time and effort on another MRI if everything is pointing to a nerve entrapment, especially since it sounds like you don't live in the US and it would be really hard to travel here for a specialized MRI.

Hope to hear some good news from you before too long.

Violet

Betterdayscoming,

Have your doctors imaged both your lumbar spine and your pelvis (which would show your sacrum)? I asked because spine issues in these areas can create waist down symptoms like you have and it may be good to rule them in or out before considering PN surgery. I am sorry you have been dealing with these issues for so long and at such a young age.

Stephanies