Health Organization for Pudendal Education

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!
-Rebecca

A bike seat caused my problem in 95. I continued to ride for another 5 years; biggest mistake of my life.

Ray

Ray P. wrote:A bike seat caused my problem in 95. I continued to ride for another 5 years; biggest mistake of my life.

Ray

Thanks for your honesty.

I really just want to give up on everything right now.

Hi Rebecca. Welcome to the forum. I am sorry that you are struggling. Unfortunately, I too had my issues caused by long distance cycling &heavy lifting. I can also understand your frustrations about potentially losing a loved hobby. I would advise to hold off on any physical activity until you know more about your condition. Personally, I ignored my symptoms, as like yourself, I wanted to continue to push myself & thought "no pain, no gain..." I was very wrong & am still strugglin nearly four years & one failed surgery later. Hopefully, yours will improve with rest & less invasive treatments. I wish you luck with your journey. Andy.

Rebecca you are not alone. My first 3 seasons I had to give up biking I cried non stop. Missed my friends the exercise and just the beauty if being out side. The weather is getting better and another season will pass with no biking. It is something I will never get over. I now have to swim and do heated yoga which I do enjoy but it's not the same, especially when it comes to not seeing my friends. Check with your OB maybe give yoga a try, maybe your husband will join you.

Hi Rebecca,

Congratulations on your pregnancy. Once that little munchkin comes along I bet he/she will be the love of your life and biking might even fade into the background. You will then have a major reason to live again, even if you aren't able to go biking.

I have also been an avid exercise freak but I continued with it until the pain became so bad that I had to resort to lying on the couch most of the time. I don't know if you will ever get to that point if you continue with biking. Whether or not you want to risk that is a decision only you can make. There is a risk/benefit trade-off in almost everything we do in life, really. The one thing I can say is that after having gone through the worst of PNE, I am just so grateful to be able to enjoy the simple things in life without severe pain, that it seems trivial that I can't do quite everything that I was able to do before. I have found that I get more satisfaction from helping people on this forum than from just about anything else that I do, and the things that used to matter so much, don't really matter that much after all.

Maybe talk to your husband and see if he is willing to give up a little bit of biking to enjoy some other things with you too -- especially once the baby comes along.

All the best,

Violet

Hi Andy_Pablo & Patty,

I very much appreciate your replies although they don't bring me much hope of ever returning to biking. It feels like I'm losing a big part of me, as I'm sure you have experienced as well. I read a quote yesterday while looking at articles about PN

"The gross and net result of [excessive cycling] is that people who spend most of their natural lives riding iron cycles over the rocky roadsteads of this parish get their personalities mixed up with the personalities of their bicycle as a result of interchanging of the atoms (mollycules) of each of them and you would be surprised at the number of people in these parts who are half people and half bicycles.”
-Flann O'Brien, The Dalkey Archive

This is how I have lived - half human and half bicycle. It is seemingly impossible to change at this point -- it's such a big part of me. Like a mermaid being forced to swap her powerful, fluid tail for a paltry pair of stupid human legs

Hi Violet,

I appreciate hearing part of your story. If I'm honest, I know deep down that I am really really really lucky that I knew what PN was right off the bat (unfortunately due to my brother's condition and how he tried to "power through it" which does. not. work.) and that I took a step back so quickly. I am also a health care professional (I am a kinesiologist) and work for a company called the Canadian Back Institute. When working in clinics, I spent a lot of time helping people with nerve problems due to impingement, hypersensitization, chronic inflammation, etc. I do find it rewarding to help people, but biking has always been my recharging time. It's the closest a human get to flying. It's my zen, my happy place. The feeling of freedom, speed, sensation, connection with nature... and stress just melting away... I can't live without that (or finding some sort of viable substitute...)

As much as this pregnancy wasn't planned and is coming at a very stressful time, it is helping me to cope somewhat. My husband keeps reminding me that my life isn't solely my life anymore. I need to stay calm, strong, and positive and maintain a healthy internal environment for the baby too. It is also another reason to keep me off the bike right now, i.e. I will be less apt to cheat and go for rides despite the pain... My family are very involved in the mountain bike community here though, we have worked on major projects for the local organizations and have built a lot of trails. As soon as our little one can ride a strider I'm sure he or she will want to just go go go... and I guess I'll be left behind. No use worrying about this now -- I will cross that bridge once I get there.

I do have a lot of questions about pregnancy and PN (I'm sure labour and childbirth will not work wonders for my nerves...) but I will try to post those in a different section of the forum when I am in a better mental state to hear honest the replies.

In the meantime, I am going to try looking into recumbent bikes online and see if I can find a used one in town to go try. I am very lucky that I stopped aggravating my symptoms early on so they are not very bad - I can generally sit for long periods on any surface except when flared up, I can walk on level ground for prolonged periods (it's stepping up like in hiking that aggravates my pain), I can do yoga as long as I am very gentle with hip stretches, and I am able to use a Nordic Track stationary XC ski machine that we have as much as I want (it does not seem to aggravate my symptoms right now at all). Hopefully a recumbent bike will work at least for commuting. Until moving to our house the vast majority of days of my life had been car free - I biked EVERYWHERE. Part of the appeal of moving here is that it is right next to the river bike-path that connects Gatineau and Ottawa and leads to many places in the downtown core. I see this guy (KRISG19) had success switching to a recumbent! http://www.bikeradar.com/forums/viewtop ... t=12555324

Again I really appreciate your honest replies, even though they are really hard to hear right now. Perhaps I will write updates like konedog4 does to try and document trials and errors and successes too.

PudendalHOPE!! (Not pudedalhopeless)

Yes, KrisG used to be one of our directors. You can read his story from our homepage http://www.pudendalhope.info/node/70 and see a picture of the type of bike he rides. He links to it in the last paragraph of his story. He got well and moved on with his life. The recumbent bike sounds like it could be a good option for you to get around town. With the proper bike seat you may eventually be able to do some regular biking again, who knows? I never thought I would be able to hike again but last weekend I hiked for 12 hours straight and got to the top of an almost 10,000 foot peak. It's funny how something that stressful can actually help relieve stress. Go figure.....

Violet

I have to abandon biking because of the pain, i tries with comfortable seats cushioning but nothing seems to worK. Good luck for our newly coming member