Hi... where to begin? Sorry this is bound to be long...
I have been an avid cyclist, and especially mountain biker, for 16 years (since I was 12 years old). I also especially love biking for transportation/commuting and have biked through the winter for many years up until we moved out of the city last year.
My brother, who is 3 years older than me, developed PN in 2009 -- he had it confirmed with MRI and nerve block. I never thought I would develop it since, although we share a lot of DNA being siblings, we are so different. Wrong! Anyway, last April I had an inflammation/stress attack that caused systemic (full-body) nerve inflammation and a spontaneous recurrence of a concussion from 2012. Both my arms were going numb (I have broken both elbows in the past and developed nerve compression in the forearms from rock-climbing) and my left-side of my face was going numb (I used to be a pack-a-day gum chewer and have temporo-mandibular joint dysfunction on that side that seems to compress the facial nerve). I had to go off work fully for 6 weeks and then was on a gradual return for 12 weeks before resuming full time. At this time I figured "well, my brother has nerve problems in his butt, I have them in my arms and face I guess!" I meditated, relaxed, did physiotherapy, and slowly returned to activity. I am generally very competitive, push myself really hard... Type-A.
My nerve compression in my arms and face seemed to be resolving with meditation, gentle stretching/exercising, and dry-needling. I returned to mountain biking (my passion, the thing that makes me happiest in the world!) and ended up signing up for a couple of races. I won the races and the overall provincial race series. But one Monday in early August, after a long weekend of riding, I felt it for the first time on my left side. I knew what it was from how my brother had described it - a golf-ball in my left butt-cheek near my sit-bone. I stayed calm, rested, and it went away after a few days. Kept riding, no symptoms. Then I flared it up again riding and weight lifting about 2 months later. I rested, it went away. Then I flared it up in December doing a long hike and it didn't fully go away. Then I flared it up biking at an indoor bike park for New Year's and it's been present (in varying degrees) ever since.
I think my pain is more piriformis type initially as the type of biking I do (more downhill) requires you to keep your feet off-set/level (at 3 and 9 on a clock, not pedaling or at 6&12) and I've known I have weakness and instability in my front (left) hip since 2010 when I broke my arm and had to substitute biking with running. Running, a symmetrical sport, caused left-hip problems like ITBand Syndrome. I kind of just figured "well, whatever, I'll just stop running" but never dealt with the underlying problem of evening out my hips.
Anyhow, now I am almost 4 months pregnant and my pain is not very bad. I have a sit-stand desk and I am careful about my movements. Buuuuut... it's biking season. I can't not bike. I lose my friends, my identity, my will to live when I can't bike. I own 6 bikes: a carbon road bike, a dirt-jumping bike, a fixed-gear, a steel-frame road bike for commuting, a downhill bike, and a trail bike. I know right now I'm pregnant and dangerous biking is out of the question, but I want to at least feel the freedom of biking to work or to the grocery store and not relying on my car and on fossil fuels
I ordered the Spongy Wonder seat a little while ago and on Thursday I was so depressed and lonely (my husband was out mountain biking with our friends of course) I threw the saddle on and tried it without properly setting it up. Now I have pain on my right sit-bone too. WTF is my pelvis so inflamed it is suddenly going to develop on the other side?
I saw a pelvic PT for an assessment this past week and through intravaginal testing she found I have a very weak pelvic floor. She also observed the imbalance in my glutes (left side is weak) so she has prescribed clamshells (hip rotation/stabilizing exercises) and kegels. Maybe it's partly my mental state this week (the nice weather and not being able to bike distressing me), but the exercises seem to flare me up so I am discontinuing them. I will stick with stretching (I mainly find relief with hip flexor stretches and figure 4s).
Anyway, there seem to be no success stories on the forums here where people actually go back to riding -- from searching the forums for "bike, biking, bicycling, cycling, etc" it seems that most people kind of say it's not worth the risk. I just can't imagine living without being able to ride to the grocery store or ride to work or go for a mountain bike ride with my dog alone in the woods. I would consider ANYTHING over a lifetime without biking.
I plan to continue with physio and, luckily since I live in Ottawa, will look into starting ShockWave Therapy as soon as I'm no longer pregnant (due late September).
But what will I do this summer? My husband will be out riding... he just can't understand. He hasn't felt this. He hates that I call myself "defective" but it's how I feel. We have hundreds of friends who ride bikes pain free and never develop this. Why me? Perceived injustice is bad for healing, I know, and I do believe in the mind-body element but I already feel so angry and alone and hopeless. But mainly angry right now.
Sorry for the rant. Just had to get that out. Thanks for any suggestions and support!