PN atypical? + Atrophie Gluteus

[Maddin1]

Hello fellow sufferers,

Please excuse my poor English; I had to use Google Translate.
I would like to briefly outline my medical history here, which perhaps doesn't quite fit the classic presentation of pudendal neuralgia. I am a 39-year-old male from Germany.

It started in January 2022 following a stressful period and two days of passing very hard, large stools. During the second instance, while squatting, I couldn't get the stool out; I tried to apply some Vaseline between the anus and the stool that was already protruding. I likely hit a painful spot on the right side—at the "2 o'clock" position (viewed from above)—causing a brief, sharp pain, though it didn't result in an open wound. I was left with a persistent dull ache, and in the days that followed, I tried to figure out the problem by applying cream and examining the area rectally. Eventually, pain developed in the area of the ischial tuberosities (sit bones) when sitting; this lasted for eight months. After many doctor's appointments, a pudendal issue was suspected, and I received a pudendal nerve block (performed by Dr. Demmel in Munich). At the time, I felt it hadn't helped, but three weeks later the pain subsided, and I led a completely normal life for nearly four years. That’s the short version.

March 2026:
In early March, I developed a thrombosed external hemorrhoid on the left side. This caused me to adopt a protective posture that put extra strain on the right side. The following week, my wife was away on vacation, and I spent a lot of time sitting—both at work and at home while gaming. Additionally, I was doing a lot of manual work that required kneeling, placing further strain on the right side. There was also daily masturbation, and when my wife returned, we spent two days trying to conceive a child.
The combination of all these factors was apparently too much for the muscles in my right pelvis; the pain in my right ischial tuberosity returned when sitting, accompanied by mild pain about 2 cm to the right of my tailbone. I took it easy for the next two weeks, and things slowly improved. There was no pain when standing or lying down, and no pain when sitting with a special cushion. Without the cushion, however, the pain increased, and bending over was risky. Unfortunately, I then went for a 3 km jog—something that had actually done me good back in 2022 (though that was towards the end of that period). Two hours later, unfortunately, I developed more intense pain in the lower buttock, radiating towards the anus—or rather, not the anus itself, but the inner side of the gluteal fold, which also became very tender to the touch.

My next mistake was seeing a physiotherapist who initially showed me thigh-stretching exercises—targeting the inner, back, and front of the thigh—which went well. At the next appointment, he showed me kicking movements against a suspended balloon (sideways, backward, and forward). I was also instructed to alternate between kneeling on one knee (keeping the other bent) and resting my chest on the raised knee, performing three sets of ten repetitions for each. Unfortunately, this significantly worsened my condition—though the effects only became apparent about two hours later. The same thing happened after a deep-tissue massage (using an elbow) on the area 2 cm to the right of the tailbone. In late May, I returned to Dr. Demmel for a consultation, and we spontaneously decided to perform another pudendal nerve block in the area to the right of the tailbone (Alcock’s canal). My condition improved noticeably for about 2–3 days (I felt almost no discomfort in the ischial tuberosities while sitting). Unfortunately, things got significantly worse after that; I experienced sharp pain impulses deep at the injection site, and the overall pain intensified. That was about six weeks ago.

MRI Report (Late June 2026):

Given the clinical involvement of the pudendal nerve, along with mild edematous signal alteration on the MRI and slight atrophy of the gluteus maximus (compared to the contralateral side), involvement of both nerves within the infrapiriform foramen is suspected. The right sacrospinous ligament appears slightly thickened, suggesting a possible cause. An external preliminary scan from April 2022 also shows slight thickening of the right sacrospinous ligament and minimal edematous signal alteration in the right gluteus maximus muscle—indicative of mild denervation edema—though atrophy has developed since then; there is no fatty muscle degeneration.
Otherwise, no distinct pathology is observed along the course of the nerve structures of the sacral plexus. No mass lesion.

Current status:
- Pain while sitting (with a cushion): 2–5
- Pain while standing: 1–5
- Pain while lying on my side: 0–3
- Mostly pain-free at night
- Bending over or squatting = worsening of symptoms

Since the injection, lying on my back is unfortunately only possible for short periods at night. Short walks are only feasible if there is just a slight incline; otherwise, symptoms worsen. The same applies to climbing stairs or standing relatively still for, say, an hour. Generally, the musculature feels worse and has noticeably diminished (see MRI report: gluteus maximus atrophy, nerve compression, and/or compensatory posture?). I am also experiencing increased pain in the upper pelvic area—specifically around the greater trochanter, the injection site, and presumably the piriformis—which only started after the injection. I attribute this to the reduced gluteus maximus and the resulting strain on other muscles; climbing stairs and slight inclines used to be no problem but now feel very strange.

Thank goodness I haven't had any issues with the anus itself, the perineum, or the genitals.
So, my life currently consists of spending a lot of time lying on my side, standing a little, and sitting briefly to eat. I try to get some regular movement in the garden and the pool.

Does anyone happen to have similar symptoms, relevant experiences, tips, or words of hope for me? I know I really ought to rebuild the gluteus muscle and maybe others or stretch it, but that is difficult in my current condition, as it leads to a worsening of symptoms.

Ps. I write the same in the german Board in german, i hope that is ok.

[Violet M]

Hello Maddin1,

Welcome to the forum. It sounds like you have been through a very rough time. Some of the symptoms you are describing meet the Nantes Diagnostic Criteria for pudendal nerve entrapment described in this article
https://www.pudendalhope.info/wp-conten ... iteria.pdf
so it makes sense to at least consider that as a possibility. However, it is very atypical not to have any pain in the areas innervated by the pudendal nerve -- the anus, perineum, or genitals. It sounds like most of your pain is in the ischial tuberosity area, especially when you sit. Is that correct? Have your doctors ruled out ischial tuberosity bursitis? It would likely show up on imaging. I don't see it mentioned on your MRI but it sounds like they were looking for pudendal nerve related pathology. You might want to ask your doctors if it can be ruled out.

Unfortunately, MRI's aren't entirely accurate at diagnosing pudendal nerve entrapment. Initially, you said you had pain in the anal or rectal area. Do you still have pain at the 2 o'clock position of the rectum when pressed on there? That could be potentially related to the pudendal nerve. If you do have some pudendal nerve involvement, certain exercises can make it worse so you may want to be careful about rebuilding or stretching the glutes.
You could consider having a telephone consultation with one of the European PNE surgeons to get their opinion on whether you might be dealing with pudendal nerve entrapment. What did Dr. Demmel think after you had several days improvement but then got worse? Did you go back to him for a follow-up appointment? If not, you could try to get his opinion on why you might have gotten worse from the injection.

It sounds like you have done a lot of research so I hope you can get this figured out. You still have some options to try so I think there is reason for hope.

Violet

[Maddin1]

Hello Violet,

Thank you for your reply. Yes, I’ve done a lot of searching but haven't really found a comparable case where the pain is localized specifically to the area around the ischial tuberosities (sit bones) and the surrounding tissue. There is also atrophy of the gluteus maximus (it is about 20–30% smaller than on the left side; could this be due to favoring the leg or the pain itself? Or should I assume nerve involvement?). It is a dull, burning pain when sitting, and—when the area is more irritated—also when standing or lying down.
Following the injection and the noticeable shrinkage of the gluteus maximus, I’ve also started experiencing what feel like muscle pains, likely because the other muscles are being further overloaded. These pains are difficult to pinpoint or describe precisely.
Bursitis wasn't mentioned in either 2022 or 2026; I assume it would have shown up on the MRI, especially since I reported pain in the ischial tuberosity area. My blood work also shows no elevated inflammatory markers.
Yes, the 2 o'clock position near the rectum has been sensitive since 2022 (though I don't have a sensation of a foreign body in the anus or anything like that). A week ago, I had my first cautious internal rectal massage—only for about 15 minutes and reaching just to the first knuckle. That area is tender to the touch, too, but I didn't experience any worsening of symptoms afterward. The ischial tuberosities and surrounding tissue are, of course, close to the rectum. I tend to think the pain and sensitivity radiate from there toward the rectum, rather than it being true anal pain—though it’s hard to assess exactly. I also feel that my tight hamstrings are further irritating the area around the sit bones, as the hamstrings themselves feel tender in the gluteal region. Either the tendons themselves are irritated, or they are transmitting irritation originating from the ischial tuberosities.

I do not have a sensation of a foreign body in the anus or anything of that sort.

I have an appointment with Dr. Demmel next week. Over the phone, he simply mentioned that the temporary improvement experienced while sitting confirmed the pudendal nerve as the cause. I also have a potential appointment for a second opinion with a neurosurgeon from Günzburg, Prof. Dr. Maria Pedro, who is reportedly knowledgeable in this area. However, I am keeping the option of making telephone inquiries with others in mind (assuming any of them handle such matters over the phone)—thank you.

I view further treatments as difficult at the moment, as I do not want to subject myself to Botox given my already weakened musculature, and I consider surgery or a neurostimulator to be too risky—at least for the time being.
I am currently undergoing Pohl therapy, though we have to be very cautious due to the irritated state of the area.
Many thanks.

[Violet M]

Hi Maddin1,

Yes, I agree with what Dr. Demmel said that temporary pain relief after the pudendal nerve block could be confirmation of pudendal neuralgia. I am just curious why you got worse long-term after that. If they use a steroid in the block, sometimes it can cause a temporary worsening of symptoms for a few weeks, but it isn't typically long-term. So that would be something to ask Dr. Demmel when you see him next week -- why the worsening of symptoms seems to be long-term.

My experience was that over time more muscles became involved and the pain seemed to spread throughout the pelvis. It sounds like you are experiencing that too. The nerves and blood vessels are closely related because the nerves can control the constriction or vasoconstriction of the blood vessels so that could be affecting the muscles if you have irritated or entrapped nerves. Although there is always the question -- which is causing which, the irritated nerve causing muscle problems, or the tense muscles causing an irritated nerve. It is so closely related it's a trick to figure it out.
Since you still have rectal pain, there could be some inferior rectal nerve irritation. It is a branch of the pudendal nerve.

Sounds like you are on the right track with some doctor visits coming up. Hopefully they can help you figure out the root cause of your problems.

Violet