I’m new here. I wanted to seek out support from this community given what I’ve been dealing with. I’ve been struggling with pelvic pain for about a year now. I’d like to share my experience with pelvic pain here in hopes that others might find it helpful.
Here’s a little bit about me, for context:
- I’m a male in my early 30s living in the Atlanta area.
- Prior to this I mostly did not have physical health issues, although I have struggled with anxiety in the past (I was on a low dose of Lexapro daily from 2015-2022).
- I work from home at a computer in an often a high-stress job.
- I began experiencing symptoms consistent with pudendal neuralgia/levator ani syndrome ( https://en.wikipedia.org/wiki/Levator_ani_syndrome ) after about a year of relatively intense bike riding.
- I’ve undergone treatments including physical therapy, medication, and nerve block injections but as of yet I have not experienced relief.
- I purchased a bike in March 2022 and began riding regularly in April of that year. I participated in group rides 1-2 times a week which were each typically around 2 hours long. I would also ride on my own 1-2 times a week for approximately 45 minutes-2 hours at a time.
- In April of 2022, I began tapering off my anxiety medication (Lexapro/escitalopram). I stopped taking it entirely in the beginning of May 2022.
- By October 2022 I was beginning to notice symptoms in my pelvis/abdomen. This was primarily on the left side of my pelvis, focused on the inner thigh where the leg meets the pelvis, as well as the left side of the scrotum. Sensations were of heat and throbbing/dull ache. Pain was increased with sitting and reduced when lying down. I thought this was due to a varicocele ( https://en.wikipedia.org/wiki/Varicocele ).
- Paused most biking in November 2022.
- By December 2022 — January 2023, I had seen 2 urologists and had imaging done (ultrasound). Identified very mild varicocele in left testicle, nothing significant enough that it should be causing me much pain. Urologists advised managing with ibuprofen and trying different underwear. I had also begun to notice odd sensations of heaviness in the center rear of the pelvis (what I would later learn is the pelvic floor), but this was not noticeable enough at the time for me to understand/investigate as I was focused on the suspected varicocele.
- Started biking again in January 2023. Rode ~120 total miles in January, ~100 miles in February, and ~180 miles in March.
- In March I began experimenting with different bike saddles as I suspected a saddle/bike fit issue.
- By the end of March of 2023, my symptoms had shifted and were no longer focused on the frontal left side of my pelvis. This is when I began to get nervous researching perineum/pelvic floor/pudendal nerve issues that can arise from cycling, however I wasn’t ready to give up my hobby. I had made friends and found a sense of community with others riders and spent a good amount of money on my bike setup at this point.
- I dialed back my riding in April (only about 35 miles) and continued to experiment with different saddles. I rode ~115 miles in May. Some saddles made the frontal pelvic pain worse, some reduced it. I bought a suspension seatpost thinking that bumps from the road might be exacerbating the issues.
- Mid-June 2023 is when I finally realized I needed to stop riding. Symptoms had become significant and consistent enough by this time that I needed to test whether taking a break from riding would help. I began tracking my pelvic discomfort/pain using a spreadsheet. By this point my symptoms included:
- Involuntary twitching of the pelvic floor (specifically the muscle above the anus and below the tailbone). After too much time twitching this would cause fatigue of the muscle which felt like burning, or a feeling of fullness/heaviness as if I needed to defecate, even when I didn’t actually need to.
- Pain in the sit bones when sitting (bilateral, so on both sides) — as if I was sitting directly on my bones or nerves, with no padding.
- Pain was always low in the morning and worsened throughout the day.
- Lying down/sitting on the toilet would provide some relief.
- This pain or discomfort was consistently in the 3-5 range out of 10, but could spike up to 6-7 if I had to sit a lot (such as on flights) or was low on sleep.
- I went to Pelvic Rehabilitation Medicine ( https://pelvicrehabilitation.com ) in July and saw Dr. Yogita Tailor. She recommended PT, suppositories (diazepam/bacflofen/gabapentin), and a series of nerve block injections. I was not ready for the injections yet due to cost and apprehension about the procedure, but I did start taking the suppositories as needed.
- In August 2023 I began physical therapy with a pelvic floor physical therapist. I have been in PT with the same therapist since then.
- My PT has consisted of stretches and strengthening/relaxation exercises, massage of the glutes/sit bone area, cupping, one session of dry needling (did not noticeably help and I dislike needles, although I might revisit this), and some internal muscle examination/maniupulation of the pelvic floor.
- Symptoms stayed about the same through December 2023. This is when I decided to revisit Pelvic Rehabilitation Medicine and proceed with the recommended course of 6 nerve block injections. I started injections mid-December and had the last one on in mid-January. At Dr. Tailor’s recommendation, I began using the suppositories nightly during this time period (previously I had only been taking them during flareups of pain).
- A note about the injections: The injections were of a lidocaine/steroid combination. At each appointment, 2 injections were done on each side of my pelvis targeting different nerve/muscle groups each time. So one appointment would only be for the right side, then the next would be for the left side, etc. for a total of 3 injections on the left side and 3 injections on the right side. I never had both sides numbed at once.
- Injections did not help me much. Lidocaine certainly numbed me for a few hours after the injection, however once this wore off I mostly felt achiness from the needle. Pelvic floor twitching continued regardless of the injections. For a few days after some of the injections (I believe the 4th and the 5th), sit bone pain was noticeably, although not completely, reduced.
- On January 19th, I began taking duloxetine 30mg daily at Dr. Tailor’s recommendation to help with nerve pain/anxiety.
- On January 30th, I began tapering off the suppositories (only taking them every other day).
- Pressure and stabbing pain in the sit bones when sitting (on any surface but especially on hard surfaces).
- Involuntary, rapid twitching of the muscle between the tailbone and anus (pelvic floor muscle) during/after sitting and/or during periods of stress and anxiety.
- Occasional sharp, stabbing pain near the sit bones when I sit too much or shift in my seat.
- During/after periods of pelvic floor twitching, I experience burning pain in the pelvic floor. Also experience fatigue of the pelvic floor as if it is holding a heavy load. Feeling like I need to defecate even when I don’t.
- Sitting on hard surfaces (benches, bleachers, un-padded chairs) results in increased pain for the following 24-48 hours. Typically a tingling/burning nerve pain on the interior sides of both of the sit bones.
- Pain is relieved/reduced by sitting on the toilet or by lying down, especially on my stomach.
- Sit bone pain was reduced in the days after the nerve block injections. Pelvic floor twitching was not affected.
- Pain is higher in periods of high stress and anxiety.
- Occasional, momentary muscle twitches extend to the front of the pelvic floor (at the base of the scrotum) and the back of the legs and inner thighs. These are just momentary tremors, not continuous twitching.
- I do still have the occasional frontal left pelvic pain, (what I initially thought was a varicocele). This comes and goes and is usually fairly mild at this point, but it is exacerbated by too much walking/standing or by stretching the front of my pelvis too much (such as lying down on my stomach with pillows until my chest).
- I have a standing desk, which has been a huge help with this issue, although not a solution.
- I’ve tried several seat cushions, however I can’t sit comfortably with any of them for more than a few minutes. I have an Aeron chair at home, which is very uncomfortable with no seat cushion.
- I also have an exercise ball that I sometimes sit/roll on, although this is not much more helpful than the cushions (can sometimes help with massaging the pelvic floor muscle, however).
- PT exercises done on my own typically help release the muscle tension/twitching for at least 1-2 hours afterwards.
- Biofeedback/conscious relaxation of pelvic floor muscle. This does not always help with the twitching as I’m sometimes unable to stop it.
- I suspect pudendal nerve entrapment due to scar tissue/ligament thickening due to extensive riding on a bike that was not properly fitted for me. I believe my saddle was too high and I was riding with bad posture. I was sitting too far forward on my saddle and with my back arched inwards instead of outwards, which was putting a lot of pressure on soft tissue in my pelvis.
- I suspect the frontal pelvic pain is more of a muscle injury, although it might also have a nerve/entrapment component. The frontal pelvic pain has improved since I stopped cycling, although it can still flare with a lot of standing/walking.
- I also believe stress/anxiety is a factor, especially for the pelvic floor twitching. When I got off my anxiety meds I was at a fairly stable point in my life, but I’ve experienced significant stress in the last year, not to mention all the anxiety that this condition has caused me (more on this below). I think getting back on anxiety medication has been the right choice, thought it hasn’t significantly affected my symptoms as of yet.
- I believe I’ve always had an overactive pelvic floor in retrospect, as nowadays I often notice myself involuntarily tensing my pelvic floor when moving (or even when still). It did not bother me in the past as the rest of my pelvic region was healthy, but I think now it contributes to the muscle feeling fatigued/overworked.
This has been the most challenging health issue I’ve ever faced. I’ve been lucky in that I’ve typically been physically health before this, but I’ve long been sensitive to (real or perceived) health issues, probably due to the aforementioned anxiety that I’ve struggled with. When I suspected this was a varicocele I was very stressed about the idea of my fertility being affected, having to live with the pain forever, the possibility of requiring surgery, etc. While I no longer believe this is due to a varicocele, I’m still struggling with those same questions. There’s been a surreal aspect to this entire experience, where I almost can’t believe that this has happened to me and that this is my life now, even with the amount of time that has passed.
I underwent a difficult separation from biking and the cycling community. I lost a hobby that brought me joy and that I had begun to incorporate into my identity. I had made friends with other cyclists and shared this interest with other friends of mine. I found a sense of community in cycling and I lost that.
I struggled very much (and still do) with guilt in feeling that this is a self-inflicted injury which has cost me so much time and money and has so reduced my quality of life. I sometimes blame myself for not being more careful going into biking, etc. I know this is a negative line of thinking, that there’s no way I could have known, etc. but I can’t help going there in my mind sometimes.
The lack of treatment providers for this issue who know anything about, let alone specialize in, pelvic pain for men has also been a major challenge. Urologists do not specialize in pelvic nerve issues, and most chronic pain treatment is orthopedic or for the spine/back. Women can typically turn to an OB/GYN for pelvic pain, but there does not seem to be a particular type of doctor for men to start with when experiencing this issue.
I was secretive and closed off about my condition to most of my friends and family until recently. I felt that this was a very personal issue that most people wouldn’t understand, and I wasn’t sure if it was something that would go away on its own. However given my continued struggles, in the last few weeks I’ve begun opening up to friends and family about this, which has been difficult in some ways but mostly a huge relief. Struggling with this on my own, with only the support of my wife and my care team, was very difficult.
My pain and discomfort bothers me daily. This condition has changed some things about me in ways that I really dislike. I’m more sedentary. I’m much more of a homebody as I’m reluctant to go out to restaurants/bars/coffee shops for long due to wanting to avoid sitting on hard surfaces. I don’t see friends as often these days for the same reason. I tend to sleep more (or I try to) because sleeping is the main time when I do not experience pain or discomfort. Pain and discomfort have been a distraction at work and get worse when work is stressful.
All of that said, I’ve tried not to give up hope and to treat this as a temporary health problem that I’ll eventually overcome through treatment and my body healing itself. I have better days and worse days, but I try to avoid believing this is something that I’ll be dealing with forever. Despite all the challenges, I’m also grateful that my symptoms aren’t worse (no incontinence or sexual issues). I try to be brave and keep seeking treatment, even when it seems scary or intimidating (as injections initially did, and as the idea of surgery does).
I’m grateful to anyone who’s taken the time to read all of this, and if you’re experiencing your own pudendal neuralgia/chronic pelvic pain, know that you’re not alone.
What’s next for me, treatment-wise:
- I’m currently investigating having an MRI done to rule out anything that might have been missed (hernia, some sort of pelvic floor muscle issue, tailbone injury, etc.)
- Dr. Tailor is recommending that I see an orthopedic/spinal doctor next, although I’m somewhat skeptical about this as he does not specialize in pelvic issues and probably is not familiar with pudendal neuralgia.
- I’m planning to increase my duloxetine dose to 60mg as I’m still experiencing pain and anxiety symptoms. Apparently 60mg is the typical dose and I have been on a low dose ( https://www.mayoclinic.org/drugs-supple ... g-20067247 ).
- I’m investigating consulting with Dr. Hibner at AZCCPP ( https://azccpp.com/ ), although this will be costly and time-consuming.
I’ll try to come back and update this thread in the future with my progress — perhaps not with the play-by-play, but with any major updates.
P.S.: Notes to other cyclists, especially new ones:
- If you are just getting into cycling, I highly recommending paying for a professional bike fit, especially if you intend to put in a lot of hours in the saddle. Many bike shops offer professional bike fits by certified bike fitters. Yes, they often cost in the $200-$300 range, but you could be saving yourself from a host of medical issues later. Examples in the Atlanta area include:
- https://www.pnandcycling.com has also been a great resource. My thanks to Kate for creating and maintaining this site.
