Health Organization for Pudendal Education

Hello all,

I'm trying to figure out if what I have is Pudendal Neuralgia or Pelvic Floor Dysfunction. I understand both can be related as PFD can cause PN or at least similar symptoms. My issues first started in January and they were urinary, stomach, low back and tailbone pain. My urinary issues were pain in my testicle and pain with erections. In the past I've had epididymitis so this type of discomfort wasn't uncommon for me. I usually get it every few years since having a vasectomy in 1999. I figured this was it. My stomach issues were basically like having symptoms of IBS. Lots of loose stools, thin stools, diarrhea, etc and also lots of bloating. I had some straining with BM's and sometimes I felt like I couldn't completely empty and I also would have burning pain in my rectum after a BM that would last for several minutes. Not to be too graphic but sometimes...not all the time...when I would wipe I would experience a sharp shooting pain up into my lower back. I've dealt with hemorrhoids all my life so I figured the burning was related to it. I had a colonoscopy in April and they found a few non-malignant polyps and told me to come back in 5 years to have another one.

My low back and tailbone pain came on in the middle of January. For the past 30+ years I've worked a desk job and I sit a lot and I've been overweight/obese for most of it. I'm 6'2" and have weighed as much as 275lbs at various times. Currently I'm 230lbs. The past year I've been trying to exercise more, walk more and dieting and have dropped over 30lbs since last March. I've always had discomfort sitting for long periods of times and use a seat cushion. Back in 2009 I fell on my butt so I'm not sure if my tailbone pain is related to that incident or not. But I never had pain that bad before when it came on in January. It was definitely my tailbone because when my Doctor pressed on it, it hurt. I was prescribed Meloxicam and I dealt with it for probably a month before it went away. Following that I started having some low back pain on my left & right side - it was weird. It started on my left side kinda where the SI joint is and it lasted for about a week and then went away. I then had it on my right side in a similar spot and it also lasted about a week. I didn't see a doctor for it just put heat on it and icy hot patches and took Aleve and eventually it resolved itself.

In April I started having some different urinary issues. It would burn right at the tip of my penis when I would start peeing and sometimes my urinary flow was slow or it would split/spray. I got in to see a urologist who did some tests that were clear. I was diagnosed with an enlarged prostate(BPH) in 2019 and have my PSA checked yearly which has stayed on the low end of normal(0.7ng). My urologist suggested a Cystoscopy to rule out any obstructions in my urethra. I had that done at the end of June and basically he told me that my enlarged prostate was responsible for my urinary issues and it was causing me to have urinary retention in my bladder which had started to damage the lining of the bladder. My 2 options were surgery or taking Flowmax. I opted for the medication and within a week I noticed an improvement.

So I thought things were pretty good at this point. Then around the second week of July, two weeks after my Cystoscopy, my tailbone pain started coming back at least I thought it was my tailbone. While the pain was similar to what I experienced in January it felt a little higher up. I also had more burning when I peed. So I went back to the Urologist and they did urine work which found trace amount of leukocytes in my urine. They sent off for a urine culture but immediately started me on antibiotics. My culture came back negative. After about 3 days I started feeling better and by the weekend the burning was gone and so was the pain in what I thought was my tailbone. I ended up getting a flat tire that weekend and was sitting on concrete for almost an hour trying to change the tire. The next day after the tailbone pain and burning with peeing returned. I went back to the urologist who thought possibly I had a kidney stone so they had me do an ultra sound for my bladder and kidneys. That came back fine - no stones. I tried to explain that my pain was in my tailbone and I didn't think it was a kidney stone but I guess it wasn't registering. He told me to continue taking the antibiotics to treat what they diagnosed me of having - bacterial prostatitis. Even though my urine and cultures were negative the 3 times they tested it following their initial diagnosis they maintained it was prostatitis and to keep on taking the antibiotics. They did absolutely nothing for me in the month I took them.

However, something I figured out was the more I sat the more I felt the issues coming on. So for one weekend(2 days) I stopped sitting. I only would stand or lie down. After 2 days my pain went away and so did the burning with peeing. I figured I had solved my problem. It was sitting! So I got a standing desk at work and one for home. By the first part of August things were great. No pain. So I decided to go back into my workout routine of exercising. I do crunches and running for about 20 minutes before I go to work in the morning and had stopped doing them in early July because of my issues. Well after 3 days of doing my workout routine the tailbone pain and the burning with peeing came back and I've pretty much been dealing with it ever since.

I had an MRI done in August of the pelvis which revealed nothing other than I had mild tendonosis of the gluteal medius muscles. My doctor said this was nothing and not related to my issues. He wants me to do another MRI to look at the nerves which I'm going to have done in October. I hope this will give me some answers. I also started physical therapy with a pelvic floor therapist last week. Not sure yet if this will help with my issues but I'm hopeful. I really just want to know what I'm dealing with so I keep not thinking its other things.

Speaking of which, I probably should mention that I have a history of anxiety. And since I started having these issues my anxiety has been off the charts. When I thought I had figured out my issues(sitting too much) and got better, my anxiety went away, but when I started having them again in August after working out then my anxiety came back and I've pretty much been dealing with not only my pain but also anxiety ever since. Googling my symptoms doesn't help anxiety much either as everything is tied to cancer and so my mind goes to that's what I have every single time.

Anyways, since about September 6th I haven't had any tailbone pain which has been a relief. Mainly my symptoms now are a burning in both my left & right butt cheeks that I can sometimes feel into both thighs and it will usually come on or get worse the longer I sit. Also have a raw like feeling in my genitals and inner thigh. Sometimes when I walk too much it will feel like pins and needles. It's hard to describe it's like the skin on my butt and into my thighs, groin and genitals is like hypersensitive. I also will sometimes get this dull ache like right in my anus or where my tailbone is but it isn't my tailbone and it usually comes on later in the day/evening and then is gone by the next morning. Pretty much all my symptoms are worse towards the end of the day/evening and then when I wake up I'm usually good until I start moving. I sleep fine and don't need to take anything to help me sleep. I will sleep on my side though with a pillow between my legs as sleeping on my back is uncomfortable. Any extended pressure on my buttocks region will cause discomfort. I also still have the burning with peeing. It's not terrible but it's noticeable - I would probably say it's a 1-2 on the pain scale. I notice the burning feeling in the tip of my penis before I have to pee. You know how your body sends a signal that hey you need to pee. Well I feel that as a burn into the tip of my penis. Sometimes I'll have a burning feeling in my urethra randomly. Sometimes it will happen after I pee, sometimes if I go from sitting to standing or standing to sitting I'll get like a shock/burn into the tip of my penis. Generally though I would consider my symptoms on the milder side - they're not intolerable just more annoying and sometimes a little discomforting and since I'm standing and walking more I don't notice them as much until the evening when I generally just want to lie down and put heat on my butt.

Sorry for the wall of text. I'm just looking for answers at this point and I know I'm not going to get them here but its been frustrating to deal with. I saw my urologist yesterday and explained to him I was still experiencing burning as well as my other issues and his thoughts were pretty much to continue physical therapy and get my anxiety under control because there's nothing more he can do. All my tests with them have been normal. I've been lurking here for the past couple months or so and reading other people's experiences with PN and some of their experiences have been similar to mine so I finally decided to create an account and share mine. Any advice or feedback would be greatly appreciated. Thanks for reading!

Hi Setzer,

Welcome to the forum. This sounds frustrating. It's so hard when you don't know what's going on. The burning with urination is common with pn (I have that when I'm in a flare), and the increase in pain when sitting is common. Do you have burning pain? And it loosely matches the location of the pudendal nerve? The uptick in pain when you did crunches is also consistent with pn. (I basically stick to walking and swimming as my only forms of exercise to avoid triggering it with extreme motions.) I don't know much about pelvic floor dysfunction, so it's hard for me to compare the odds of one over the other, but many of your symptoms are consistent with pn. Have you brought this up to your doctors? The pelvic floor therapist might be able to help with diagnostic issues. Keep us posted.

April

April wrote: ↑Mon Sep 30, 2024 5:48 am Hi Setzer,

Welcome to the forum. This sounds frustrating. It's so hard when you don't know what's going on. The burning with urination is common with pn (I have that when I'm in a flare), and the increase in pain when sitting is common. Do you have burning pain? And it loosely matches the location of the pudendal nerve? The uptick in pain when you did crunches is also consistent with pn. (I basically stick to walking and swimming as my only forms of exercise to avoid triggering it with extreme motions.) I don't know much about pelvic floor dysfunction, so it's hard for me to compare the odds of one over the other, but many of your symptoms are consistent with pn. Have you brought this up to your doctors? The pelvic floor therapist might be able to help with diagnostic issues. Keep us posted.

April

Hi April,

Thanks for your response! It has been super frustrating not knowing what is causing my issues and it creates a lot of anxiety for me which doesn't help anything. I do feel like my issues are nerve related though. I don't have the burning with peeing all the time - it varies, but I do notice it almost every day. I notice it more when I have the burning/aching in my buttocks. Sometimes I don't even need to be peeing - I'll just feel a burning sensation in my urethra. The thing with my burning pain in my buttocks is that I don't know where it's originating. When I sit or stand for long periods I can feel it coming on, moreso when I'm sitting. I'll start to feel this uncomfortable burning feeling in my butt that feels like it goes across both butt cheeks and sometimes into me thighs. It's almost like the feeling of a sunburn and I don't want anything touching my skin. It's uncomfortable to even have underwear on. The skin around my inner thighs and my genitals also feels weird - it's like a raw feeling and sometimes if I walk a lot it will feel like pins and needles. It definitely feels like someone cranked my skin sensitivity in those areas to max. I can't sit for more than 20 minutes - even on a cushion - without it becoming uncomfortable and I need to stand up. As soon as I stand and start walking I immediately have relief. The frustrating thing is I have to sit to drive to work every day which is a 20-25 minute drive so usually by the time I get to work I'm already in discomfort. The aching pain I get later in the day feels like it's where my tailbone is or in my anus....I really can't pinpoint where it is exactly.

I saw my Doctor at the end of August and he ordered an MRI of my pelvis to look at the Pudendal nerve so I'm hoping it will show something. He also ordered an ultrasound of my bladder because he thinks it's possible it could be IC but I don't think my issues are related to my bladder. Aside from the burning I have no other issues that would be consistent with IC and why would I have burning in my butt and tailbone pain from sitting at the same time if it was bladder related. I already had an Ultrasound of my bladder in July and I had a Cystoscopy in June where my Urologist looked at my bladder then so I'm unsure as to his thought process there.

I'm just trying to figure out how I was able to completely relieve myself of all the symptoms twice in July but haven't been able to since. Sure, I have some days that are better than others but I've been pretty much dealing with it since the middle of August. It's frustrating because I tried doing the same things I did in July where I stopped sitting for 2-3 days and I can't completely get rid of my symptoms like I was able to then so I'm baffled as to why that is and maybe it's my anxiety playing a role in all of this. I'm hoping I can get some answers. I think getting a proper diagnosis will help my overall mental health as well.

Hi Setzer,

Like you say, you could potentially have pelvic floor dysfunction with overly tense muscles and pudendal neuralgia at the same time. I agree with what April said so I won't repeat it. You will probably need some more diagnostics to figure this out with more certainty but since you have burning pain in the genital area you are smart to be considering possible pudendal neuralgia. When you see the physical therapist, they should be able to check a number of things. They will be able to evaluate your pelvic floor for muscles that are overly tense. If your muscles are overly tense, they could be irritating the pudendal nerve. Or, conversely, if the pudendal nerve is being irritated by something like a ligament impingement, the irritated nerve can cause the muscles to become overly tense. It's the chicken and the egg scenario -- which came first.

The pelvic floor PT typically evaluates the muscles via the rectum in males. They can also press on the pudendal nerve at the ischial spine via the rectum to see if there is tenderness in that area, indicating a possible pudendal nerve entrapment. It is entirely possible to have pudendal neuralgia without an entrapment though. The PT will also likely evaluate your pelvic alignment. Since you are exercising, it is possible to develop strained ligaments and your pelvis can become misaligned. You can also be evaluated for SI joint dysfunction with a hyper or hypo mobile pelvis. An overly mobile pelvis due to lax ligaments can result in sagging ligaments that press on the pudendal nerve. Since your pain seems to be somewhat related to exercise, you also have to consider whether you might have a genetically tight ligamental grip at the ischial spine that is keeping the nerve from gliding freely when you move. Other possibilities are that the nerve can be trapped in fascia in the muscles along the Alcock's canal. If you just have tight muscles without a nerve entrapment, there is a chance that pelvic floor myofascial release will be helpful. You should know within 6-12 sessions if it is going to help. When I did pelvic floor internal myofascial release, it made my symptoms worse. This was because the nerve was entrapped and just became more irritated with PT. So, PT didn't work for me, but it helps some people.

The MRI you have may or may not show a nerve entrapment if you have one. It isn't very accurate at determining things like SI joint dysfunction or pelvic hypermobility though. There are other things that can cause similar symptoms as pudendal neuralgia. For instance, you can have a spinal radiculopathy up in the spine rather than down in the peripheral nerve. If that is the case, hopefully it would show up on an MRI.

If your symptoms are distressing enough, you may want to consider seeing a pudendal nerve specialist and consider a pudendal nerve block for diagnostic purposes.

Violet

Hi Violet!

Thank you for your response and valuable input!

The MRI I had done in August showed no entrapment of the Pudendal nerve and normal appearance of the SI joints but like you said, MRI's aren't very accurate in determining things like SI joint dysfunction. I do believe that if my Pudendal nerve was being entrapped then my symptoms and pain would most likely be greater than they are now so chances are the nerve is being irritated.

I had PT earlier today and she was pressing on my piriformis muscle on both sides and that created some discomfort for me and there was a couple of times while she was massaging that area where I could feel like a sting into the tip of my penis. I'm guessing the area she was pressing on was probably in close proximity of the Pudendal nerve. She says that it's possible the Piriformis muscle is the source of my issues. She gave me several Piriformis stretches to do this week so we'll see how it helps. She hasn't done any internal work on me yet but today was my first session after the consultation but I'll bring up the things you suggested next week.

I've also reached out to Dr. Attaman in Washington State where I live. I have a consultation with him next week so I'll see how it goes. I don't have debilitating pain but it's discomfort enough that by the time I get home from work I just want to lie on my side and not do anything. It sucks having to stand all day and not be able to sit without pain. Hopefully he'll be able to help or at least help me get to the bottom of my issue.

Hi Setzer,

Some of the PN doctors also say that MRI's aren't very accurate at determining a nerve compression, not just things like SI joint dysfunction. But hopefully that's not what you are dealing with, and PT will help you get back to feeling well. You should know fairly soon whether it's going to help. Maybe 6-12 sessions?

You say that you don't have debilitating pain but if you just want to lie on your side and not do anything after work, that sounds kind of debilitating to me. And if you have to stand all day, that seems somewhat debilitating too. You sound like you aren't much of a complainer, even when things are tough.

Violet

Hi Setzer,

I was just going to throw in a couple of additional points to the thread. You said you were confused about the fluctuations in the pain. PN pain can fluctuate a lot and for unknown reasons. In my first couple of years, I sometimes went days and even weeks without pain, and then it would kick in for reasons I never understood. Later it was a bit more continuous. And these days (6 years after surgery) I have pain far less often and less extreme, but I still do not understand what triggers it. The other thing I thought I'd mention is that both heat (heating pad on high) and ice can provide good non-medicinal pain relief.

April

Thanks April & Violet for your responses!

My MRI didn't reveal anything helpful but I met with Dr. Attaman and have scheduled pudendal nerve blocks so I will see if they will provide me with relief. This past week I have noticed a significant improvement in my pain. Since last Monday(Oct. 7th) I haven't needed to take any ibuprofen or tylenol for my pain in the evening. Yes, I still notice it but it's not nearly as bad as its been. I'm still avoiding sitting as much as possible but this past week I haven't felt the need to lay down on my side as soon as I get home from work. So obviously physical therapy is working. My only issue with my PT is that she's yet to do any internal work on me. We're 5 sessions in now and she's mostly done deep tissue work, a myofascial release and used a tens unit. Do PT's normally wait several sessions before starting any internal work?

My PT started internal work right soon after diagnosing me but the internal work flared things up a lot and I had to quit doing it. If you are getting better with external myofascial release and a TENS, that's a good sign. Did your PT evaluate your pelvic floor muscles via internal exam yet? If they aren't tense, and if the external PT is working, maybe you don't want to flare things up with internal PT?

Violet

My situation is the same as Violet's. My pt did try internal---probably sooner than 5 sessions in--but it was clear that it flared me so she never did it again. I recently (about a year and a half ago) tried pt again, and she did internal work to diagnose me and it flared me again, so it's clear that creates a flare for me. As Violet said, if you're improving with those external measures, that's a great sign. Your pt may not think it make sense to change course with the treatment since the external work is working. But you can ask her to try it and/or to do it for diagnostic purposes, as Violet mentioned.

April