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How Can I Go Bicycling With Vulvodynia?

Since 1996, I had not ridden a bicycle… until now. After a great deal of planning, saving, and wishing, I rode this past weekend.


In 1996, I attempted to ride a tandem bicycle with my husband (who was then my boyfriend). His parents had a tandem and he was really into biking. Even though I hadn’t ridden in quite awhile, I gave it a try in 1996. Let’s just say it was a short ride. While I had not been officially diagnosed with vulvodynia yet, I knew that riding a bicycle had become extremely painful. The brief 1996 ride on the tandem made it clear to me that riding a bicycle with a traditional seat was physically impossible. Thus began my 15 years without any bicycle riding at all.

I haven’t written much about vulvodynia. Why? Well, all of the treatments I tried were useless. While I have a very capable doctor, he has been unable to find anything to effectively treat my symptoms. So, writing about vulvodynia isn’t really my favorite thing to do. I simply haven’t had much to say about it. After all, who wants to read me listing off all of the failed treatments I have tried for it? Today, however, I wanted to share some good news regarding engaging in an activity I had given up on… simply by finding the right equipment to accommodate my needs.

For several years now, my husband and I have discussed how I might possibly ride a bike again. He suggested that we look into a recumbent trike. This was not a purchase we had the luxury of just jumping into. Unfortunately, this type of bicycle (or tricycle, actually) is not inexpensive. We have been planning for this for awhile and looking at it as an investment. Rather than me being left behind at home for bike outings, I will now be able to participate.

Here is a quick aside about vulvodynia, which can cause tremendous, debilitating pain:

“Like many other people suffering from pain disorders, those afflicted with vulvodynia may often be impacted by the frustration of finding a diagnosis, subsequently confronted with an area of medicine that is still in relative infancy. The cause is still unknown and treatment success varies. Therefore, many become frustrated and sometimes depressed with a lower quality of life”.

Biking is a great way for me to get exercise. This is absolutely huge because my fibromyalgia and neuropathy make exercise very difficult. I can’t even tolerate gentle yoga due to the fibromyalgia. So, to have a means of getting exercise that my body is handling well is fantastic. Granted, my leg muscles were noticing that I was asking them to do things they are not used to when I took this for the first couple of spins. However, my body tolerated it quite well. I had discussed recumbent trikes with my physical therapist recently and she thought it was a great idea.



While I don’t normally make it a habit of referring to specific brand names on my blog, I am linking to the model I got so that if any other patients are looking for a recumbent trike, they will be able to see the model that is working well for me.

I should probably explain that I cannot tolerate sitting on any hard surface anywhere. When I am at the computer, like I am now, I am sitting on top of blankets that are folded and placed on my computer chair. So, for me to find the seat of this recumbent trike comfortable is nothing short of a miracle. The seat also has a back rest. It is amazingly supportive. With my history of back problems, this is important.

So, in writing this post today, my goal is not to say, “hey everyone who has vulvodynia… you would love this recumbent trike”. I know that it may not be feasible for (or desired by) everyone. Goodness knows it took years of planning for us to make it happen. My intent is to give people – no matter what their chronic illness(es) may be – hope that there are solutions available to solve many problems posed by chronic illnesses. I myself had given up hope for many years that I’d ever ride again.

It wasn’t until my husband and I began discussing this type of bike that I realized it might be possible for me to ride again someday. When we went to the bike store and I tried out this bike, I couldn’t believe how comfortable it was. After a short ride on Saturday and two short rides yesterday, I am learning how to properly shift the gears and am thoroughly enjoying simply being able to ride again.

As I coasted down a hill yesterday, memories of riding a bike when I was younger came back to me. It felt good to get fresh air and exercise. I’m really excited about having a safe means for getting exercise. I just wanted to share this story here. When I picked the title for this post, I tried to pick something that would be seen by vulvodynia patients who, like I was, are searching for ways to ride a bike despite the pain of vulvodynia.


This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: How Can I Go Bicycling With Vulvodynia?

18 comments

1 Jenny H.No Gravatar { 05.09.11 at 11:00 am }

Happy Biking Jeanne! I foresee a fun summer for you!

2 DarleneNo Gravatar { 05.10.11 at 9:45 pm }

This is a God send Jeanne. I am so happy that you can feel part of your family again, and will have many fun adventures. You really deserve to feel the very best that you can. I totally empathize with how you were feeling. <3<3<3 Darlene

3 JeanneNo Gravatar { 05.11.11 at 10:36 am }

Jenny:

Thank you! I am really excited. We’ve talked about this whole bike situation for a long time. All the planning finally paid off. With my various illnesses, it is really difficult to exercise. With the fibromyalgia being so severe, I can’t even tolerate gentle yoga. I’m thrilled to have a safe way to exercise.

Darlene:

I am really happy to be able to get fresh air and exercise. It was difficult to miss out on biking. Now I can participate too! ;)

~~~

Jeanne

4 Jannie FunsterNo Gravatar { 05.11.11 at 7:58 pm }

Yay! Who says a banana seat bike is the only way to go??!!

Your legs must be in great shape!!

Have fun on that, Jeanne of the recumbent hills. Or plains??

Xxxooo

5 JennNo Gravatar { 05.12.11 at 10:29 am }

I was sooo happy to see you sitting on your bike with a big smile on your face! Yay!

Here’s to getting back on a bike again! I am so excited for you. It is always encouraging to learn of other people’s creative ways to manage life with chronic illness.

Thanks for sharing your story!

6 JeanneNo Gravatar { 05.12.11 at 3:37 pm }

Jannie:

You’re too funny. I knew you would have a comment like this in light of the fact that you wrote a whole song about banana seat bicycles! (Yes, my dear readers! Jannie wrote a song for her yet-to-be-released second CD called Banana Seat Bicycles).

If you click that song link (above), you’ll see a video of Jannie singing the song. At the 1 minute and 30 second mark, she says “Jeanne’s was green“. Jannie is singing about my childhood bicycle:

Jannie added that caption (above) to the photo I had dug up of my childhood bicycle, The Dill Pickle. (Huffy named it that. It actually said “The Dill Pickle” on the side of the bike). Jannie wondered if I had a photo of my green bike after we’d had a conversation about bikes (banana seat bicycles in particular).

Anyway, if you haven’t heard Jannie’s awesome song about banana seat bicycles, please check it out:

HERE

I can’t wait to hear your second CD, Jannie! I’ve never been mentioned in a song before. How fun! ;)

My legs are in nowhere near great shape but I have a feeling they are going to be in better shape now that I have my recumbent trike. (Alas, no pressure about writing a song about recumbent trikes, Jannie). LOL ;)

I must admit that I prefer plains to hills at this point. I am still learning how to use the gears but my poor legs are very out of shape. So, it is quite a workout for me but in a good way. My ability to exercise has been severely limited by fibromyalgia these last few years. I am beyond excited that I now have a way to safely exercise. This is huge! I have to be careful not to overdo things all at once. This transition to spring is a tough time of year for me with fibromyalgia pain. So, I will have to really take it slow. I’m really excited, though. xoxoxo

Jenn:

You’re so sweet. Let me tell you… I was soooooo happy to take my first ride in 15 years! You should have seen me. I swear that I had a little “speed demon” thing come over me the other day. That trike can do sharp turns. At one point, I was in a parking lots doing circles and figure eights and it was so fun! Yay!

I really am excited. My husband and I have been talking about this recumbent idea for years now and all that planning was worth it. I just love it! Yes, my hope in sharing my recumbent trike story was that it might helps someone else find a creative way to solve the problem of how to ride a bike when a medical condition is standing in the way of doing so in a more traditional way. For many years, I thought I’d never ride again since a traditional bike was out of the question for me. I’m glad I was wrong.

When I titled the post, I tried to pick the type of phrase someone like me might Google if they were looking for a way to make riding a bike work. I know that my husband and I had searched online for various options before we finally went to a local bike shop and found the one that I got. I know there are other people out there who would like to ride a bike but who find it physically impossible. If this post helps even one person find a way to get back on a bike/trike again, I will be really happy.

Thank you, Jenn! ;)

~~~

Jeanne

7 Getting Back In The Saddle — ChronicHealing.com { 04.16.12 at 2:19 pm }

[...] getting “back in the saddle” I’m speaking in a figurative sense (as anyone who has read my blog regularly [...]

8 MichelleNo Gravatar { 10.06.12 at 10:42 pm }

Thank you for writing this article – I am also struggling with vulvodynia (over 3 years now) and have recently begun various treatments which may or may not be successful. My husband loves to bike and I try to go along (I have one of those seats with the hole in the middle) but still struggle. We did stumble across this article while looking up information about the disease & biking so good call! I feel for you with your various diagnoses and hope that you are finding a way to cope and live a somewhat normal life. Thanks for the valuable information.

9 JeanneNo Gravatar { 10.11.12 at 1:27 am }

Welcome Michelle!

I’m very sorry it took a few days for me to post your comment. I haven’t been online at all lately. I am afraid that I don’t have time to post a detailed response now (as I would like to) but I greatly appreciate your feedback and hope to post something more shortly. For now, I wanted to at least get your comment up.

I hope to reply in more detail as soon as possible. Thank you for your patience!

Jeanne

10 JeanneNo Gravatar { 10.12.12 at 1:46 am }

Michelle:

Thank you for your comment! I’m sorry that you are struggling with vulvodynia. I know it can be quite a challenge. Recently, I have attended some events where bleachers were used for seating. Let’s just say that my special cushion (something I got from a durable medical equipment store) really helps me survive the bleachers!

I hope that the treatments you are getting are successful. I’m sorry that the seat with the hole in the middle isn’t enough to keep you from suffering. I’m glad you found this post.

A recumbent bike (mine’s actually more of a trike) is definitely an investment. It’s unfortunate that it’s so much more expensive than a regular bike… and we had to give serious thought to the purchase (i.e. what sacrifices were we willing to make to come up with the money to buy it). I have no regrets, though, and I’m grateful to have found a way to ride again.

If your husband loves biking and if you would too (given a bike that makes it less of a struggle), it might be worth investigating recumbent bikes. I wish they were less expensive but things that are custom tend to be pricy, I’m afraid.

In 30 years of living with chronic conditions/pain, I have learned many coping mechanisms and have learned of many treatment options. It’s not always easy, of course. That’s for sure. However, I try to make the most of things.

Thank you for the valuable feedback and best of luck! Please feel free to stop back with any additional feedback you have. You never know when another patient with similar symptoms might be reading. You might encounter info that could help others.

Take care!

Jeanne

11 MichelleNo Gravatar { 10.12.12 at 6:54 am }

Jeanne –
Thanks for the kind words. I’m currently trying pelvic floor therapy, which I never even knew existed. Anyone have any luck with this? I’m optimistic … we’ll see what happens.

12 JeanneNo Gravatar { 10.18.12 at 11:06 pm }

Michelle:

When you say pelvic floor therapy, do you mean you’re seeing a physical therapist with special training in addressing pelvic floor dysfunction and such? If so, I had that a few years back. I had never heard about it until a local endometriosis support group member told us about how much it had helped her. Then several of us from the support group tried it. Many who did so found it helpful. Whatever the specific treatment you’re getting for the pelvic floor, I hope it helps! I know that my pelvic floor muscles were way out of whack from what they were supposed to be. The resting levels – when it was measured – were not at all what they were supposed to be. I hope the treatment helps you. Please stop back and share your results with it. Thanks!

Jeanne

13 Kyle ElizabethNo Gravatar { 07.24.13 at 5:22 pm }

Thanks so much for this post! I also have a vulvodynia and really miss biking so I’ve been thinking of a recumbent. I’m curious: how come you went with the trike vs a two-wheel recumbent? Is there something more comfortable about a trike? Wishing you well!
Kyle

14 JeanneNo Gravatar { 08.01.13 at 1:58 am }

This is just a quick message for anyone who has posted recent comments on my blog. I have been stuck offline (for too many reasons to begin to describe!) and I’ve never been so behind on moderating blog comments – but I will reply to each comment just as soon as I am able. Thank you very much for your patience… especially anyone who is new to my blog. I promise I’m not usually so slow at posting and replying to comments. Thanks for your understanding!

Jeanne

15 JeanneNo Gravatar { 08.05.13 at 2:01 pm }

Welcome Kyle!

I apologize for the delay in replying. I have been stuck offline for awhile now and I’m just now getting to moderating a few comments.

Years ago, my boss had a 2-wheel recumbent bike and he brought it to a company picnic one time. We all took turns trying to ride it. “Trying” being the operative word! Everyone is different and he loved that bike like there was no tomorrow. However, I (and most of my co-workers) found it quite difficult to ride. I had a hard time balancing on it! Anyway, years later when my husband and I talked about finding me a bike, he thought the recumbent trike would be a good option for me. (My husband used to ride a great deal. He used to ride “centuries”… where people ride 100 miles in a day. So he was familiar with the trikes from the bike club he used to belong to). Anyway, recumbents are not cheap and we needed to take the time to check them out before making the investment. Fortunately, there is a large bike store within a hour’s drive from where we live and I was able to try it out before we made the purchase. (I know some people buy online but I wouldn’t have wanted to do that for this).

Anyhow, the seat on my recumbent trike is about a million times more comfortable for me than any other bike seat I’ve seen. Again, everyone’s different but with the medical conditions I have this has really worked out to be better than any other bike I had tried. After many years of not riding a bike (because regular bikes were simply too painful for me), it was really nice to find a way to ride again. There are enough activities I miss out on due to my illnesses and the limitations they bring. It was just really nice to find a workaround that enabled me to ride again after so many years of not being able to do so!

Not only is the seat (bottom) on my trike very comfortable but the seat has a back portion to it and this helps support my back as well. This make an enormous difference for me.

Again, for anyone who is contemplating getting a recumbent bike or trike… I would strongly suggest finding a place to try it out in person before making a purchase. Something can look great online and sound great in a description but the only way to really get a feel for it, in my opinion, is to try it out in person and see how it feels.

Thank you for your patience on the reply and I hope you find something that works well for you. Good luck!

Jeanne

16 Kyle ElizabethNo Gravatar { 08.05.13 at 2:03 pm }

Thanks so much for your reply Jeanne – really helpful info! Do you mind sharing what brand and model bike you bought? Your rave review about the comfort of the seat makes me want to check it out too!

Happy Riding :) ,
Kyle

17 JeanneNo Gravatar { 08.05.13 at 2:11 pm }

Kyle:

It’s a Sun EZ Tad SX. Some people refer to it as a “tadpole”. If you click the hyperlink in the post for “recumbent trike”, it’ll take you to the one I have. I love it!

Jeanne

18 JeanneNo Gravatar { 08.05.13 at 2:13 pm }

Kyle:

Hmm. The Sun link isn’t working and I’m not sure why. Hopefully they didn’t discontinue that model. I’ve seen others around besides mine.

Jeanne

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