Cycling with endometriosis – yes you can get on your bike with chronic pain

This is my bike (battery not pictured). It's a Kalkhoff Agattu C8 Impulse.

This is my bike (battery not pictured). It’s a Kalkhoff Agattu C8 Impulse.

When I’ve spent the last five years of my life explaining that I am in daily pain, I can tell people are thinking:

If your pain is so bad how come you can manage to cycle every day?

The answer doesn’t seem obvious at first, but after my first year of cycling now I can confirm that for me getting on the bike every day keeps my pain at a manageable level and has made my body stronger and more able to cope when the pain is at its worst.

It’s hard to imagine how that might be the case when you’re still in the worst throws of endometriosis pain, but I want to do my best to explain why cycling might be a manageable activity for some of us with endometriosis, and how it can be successfully accomplished despite pain and chronic fatigue. Crucially cycling has helped my mobility, fitness and independence massively alongside improving my sense of wellbeing.

I want to talk to those of you today who think an activity like cycling is impossible, too hard, too painful. The exact thoughts I had not one year ago, and why that might not be the case for every single one of you. If at the end of it it still seems too hard – that’s fine – but put this away for one day when that might not still be the case.

Lots of people say they’re willing to do anything to rid themselves of pain. So what I’m about to explain works for me. Ultimately though only you and your doctor know what treatments are best for you.

We all know exercise is good for you

I’m pretty sure that pretty early on in your treatment your doctor or consultant mentioned that doing some exercise to help with the pain might be a wise idea. Given your current pain level you thought “oh yeah wouldn’t that be nice”, and you logged it carefully in the many shelves of your mind never to be touched again.

That’s exactly how I felt when someone said those words to me (that’s nice, but there’s no human way I can do that right now) and that’s why this post comes with a huge caveat. I know just how hard getting into the mindset of exercising to combat pain is, and as it’s taken me months of work to settle into my new cycling routine.

I don’t blame you for thinking that it might be too much work for your current stage of treatment or pain. Exercise is a natural combatant for pain, you already know this and I won’t dwell on it, but the most important rule to follow here is that you can only start exercising when your mind is open to the possibility, and not when someone else says “now would be a good time to start”.

One day (hopefully now, but if not soon) you’ll improve enough with your existing treatment to remember that old idea of exercise from your doctor, and it’ll chime with you. This is when you’ll feel empowered to do something about your own treatment, so you feel more in control of your illness.

Two laparoscopys and two hormonal treatments later, this is how I manage with endometriosis at the moment.

So why cycling?

The reason I chose cycling was because it offers a double whammy of exercise and transport, and with a chronic illness you need all the time-saving (or life-saving) shortcuts you can get.

Cycling is often described as a low-impact type of exercise. Looking online you’ll find a lot of information about cycling with back pain, or even the health benefits of cycling, but nothing about barely anything cycling with endometriosis and chronic fatigue, but it’s entirely possible.

Having a bike of the right height (where your handlebars are not lowered) keeps your back straight and promotes good posture. Because of this I find cycling more comfortable than walking. On my worst pain days the cycle home from work is the only 10 minutes of relief I will get. So cycling is a more efficient way to get from A to B using less time and less energy (and meaning less pain).

A comfy seat post and saddle is recommended!

A comfy seat post and saddle is recommended!

A comfy saddle and seat post with suspension will dispel most of the bumps of a journey too if you’re worried!

Take going to my local shop. Walking that will take me 25 minutes each way, and carrying heavy items will cause me pain. Cycling that journey takes me 10 minutes, and leaves me with more energy when I get home.

The benefits of cycling with pain

Cycling improves your wellbeing too. Feeling miserable and isolated by illness is no fun. Getting on my bike I can join other people for bike rides or go shopping even travel to and from work. I’m more mobile, and the benefits I reap from cycling leave me feeling more able to do other activities.

Thanks to my first year of cycling my abdominal pain has become more manageable, and I have more pain free days. My lung capacity is improved and leg muscles are stronger. I feel better (and happier) for physically doing something, and it shows.

My sleep is improved too. Cycling means I sleep more deeply and more consistently, then there are the other great knock ons. You’ll find yourself eating better because of all the energy that cycling both gives and requires, (so you’ll need less sugar and coffee) and you’ll have the inspiration to try out new things and go new places.

I am now also living successfully without painkillers, due to the relief that cycling every day gives me – but I’m not a total fool. I still carry them around for emergencies.

Cycling has a lot in common with chronic illness, in order to cycle successfully on the roads you have to have confidence and tenacity to share the roads with people who only know how to drive and can be impatient. Like illness, cycling is all about going at your own pace and not being hindered by other people’s expectations.

You already have a thick skin as you’re living with a physical illness, so you’re most of the way there.

runkeeper-graph

The neatest thing for me has been watching and measuring my own improvement (I log all my cycling trips using Runkeeper) so I can measure how my fitness has improved over time. In short, I’m stunned by how quickly a cycling routine has led to an improvement in my fitness and overall strength.

Cycling makes me feel normal. I am not always chronically ill on my bike. I feel amazing. When I get out on the bike I focus solely on the journey, my mind empties and relax – forgetting about illness – forgetting about everything but the task at hand.

How do you start cycling with endometriosis?

Cycling with pain seems impossible to start to begin with, the trick (like anything with illness) is to break it down into parts. To pace your activity so you’re not doing too much.

Golden rule if you’re starting out: Listen to your body. As soon as you start to get uncomfortable or can feel discomfort coming – stop – rest and try again later. You can’t go from being relatively sedate to cycling 10 miles a day and expect your body not to complain.

I hope I’ve not made starting cycling sound too rosy, because it isn’t. There will be hard days. Days where your insides are sore, days where the pain’s too much. Do as you would do normally and rest. Your pain will play up as you get used to the new activity, listen to it and rest accordingly if you need to hopefully with time it will settle on the bike as my pain has.

It's really important to be able to comfortably touch the ground on your bike.

It’s really important to be able to comfortably touch the ground on your bike.

Firstly you’ll need a good bike that fits you well. I’d recommend a unisex bike with a low cross bar so you can get on and off the bike without having to be an acrobat. Start off with borrowing or renting a suitable bike (even get a fitting if you can!) so that the bike you use feels like an extension of your body rather than a object your body is being contorted to fit. Sitting on the bike, standing on the pedals and pedalling itself should all feel comfortable and easy manageable.

Basically any sort of activity with endometriosis relies on your knowing your personal pain threshold, what is normal and what is not. I can’t advise on this particular aspect as it is very subjective, but as we’re all experts in pain, you’ll come to know what I mean.

Always pace yourself

Start off with some short, slow distances while you remember how to cycle. Start somewhere flat if you are able. Maybe cycle to the end of your road, rest and see how you do. Then another further landmark. Practice turning and manoeuvring the bike to make sure you are comfortable. You’ll find the bike coming to a stop (where you have to put a foot down to hold it up) the most uncomfortable part of your cycle. This is why a good fitting bike (where both your feet can touch the ground comfortably) is important otherwise you’ll be stretching the muscles in your abdomen too much.

The key thing to remember with cycling is that you should definitely be following pacing principles every time you go out. Find a level of activity that’s comfortable, and keep doing it steadily, maybe start with just 10 minutes for example – try that. Wait to see how that feels a a day or two later, see what the payback is.

If that feels comfortable try 10 minutes again, and repeat for another day or two. If you can manage 10 minutes without too much subsequent discomfort try 20 minutes the next day, and follow your strict routine of waiting, resting, observing and repeating until you can steadily increase the amount of time you’re out on the bike.

Doing this, I was able to go from 10 minutes of activity at a time, to over two hours (with more to come!)

If you ever reach a point that’s uncomfortable, drop back to the level before that worked for you, and remain there until you’re ready to try the next level again.

Some specific starting advice

If cycling for a period of time becomes comfortable, you want to fight against the urge of doing too much too quickly. This will set you back a few days or more of pain. Take it slowly, and fight the urge to zoom off too quickly unless you’re certain your body can do it.

At this point it’s all about building up your confidence with this new idea. When you’re comfortable start to think of a small goal. Maybe half a mile, or a mile. A cycle to a nearby friends house. It’s very important that you plan your starting routes carefully, avoiding any downhills (as this will mean an uphill on the way back). You’ll be used to this from living with illness anyway but it’s doubly important on a bike.

Starting out you’ll find you are using muscles in your legs that have not been active in a while and after your first big cycle your legs will throb hugely. This is a normal ache, and it was personally magnificent to feel something other than endo pain for once, something that came from exercise and effort and had a genuine cause! Soak up in a warm bath if you need to, or just roll around in the painful joy of it all as I did 🙂

So what are the downsides of cycling?

Not going to lie. It’s not all sunshine and lollipops. Cycling is not a miracle cure for endometriosis. Let me be quite clear on this, it’s very hard work but it’s also immensely satisfying.

I always have a backup plan for my cycling trips. For example I am strong enough now to wheel my bike back if I ever felt unable to cycle home (although this has never happened). I also have at least three people I can call to rescue me.

I now cycle to work every day, but have two people I could rely on to grab my bike and get it home if I ever got stranded there too. There are days (tough, very painful days) where I cycle somewhere and experience a great deal of pain at some point in my day after my cycle and have to make a decision if I can cycle home. I have managed it every single time so far (and felt better for doing so which is great) but pain has a way of muddling your brain and I’d encourage you to cycle safely when this happens. If in doubt don’t get on the bike.

Hills are another big problem. I live in a bad place for cycling with a chronic illness (it is extremely hilly) so I cycle with a pedal assist electric bike. However less than a year in in I am already strong enough to consider buying a another road or hybrid bike as my electric bike is very heavy!

Fatigue is currently my biggest problem. Cycling in itself will generally keep you very alert as you’re out in all elements. However staying awake in any sedate time is occasionally very hard. I find my body is acting more normally than it did in regards to energy levels than before I started cycling. This is because I am burning more energy, therefore getting more benefit from foods and sleep than I did before. As sufferers of chronic fatigue though it’s very important that you pace your cycling as much for fatigue as you do for pain and never overdo it.

I’d highly recommend if you do get bitten by the cycling bug as I have that you resist the urge to push yourself. Always stop short of the higher level of what you can accomplish. If you find yourself thinking “I wonder if I can…” stop immediately and call it a day. It’s always the “extra mile” that causes me difficulty with fatigue and pain than a nice, short, comfortable distance.

A final thought

Above all you need to enjoy whatever exercise you choose to follow, it may not be cycling – it could be something else, but I think the combination of exercise and travel mobility is a very compelling argument in cyclings favour. Regardless if you enjoy whatever activity you wish to do, you’re far more likely to stick at it!

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About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

14 responses to “Cycling with endometriosis – yes you can get on your bike with chronic pain

  1. Zoe Richmond

    Hi Michelle,

    Just wanted to say I really loved your blog on cycling as i can really relate to it.

    I too have endometriosis and was diagnosed in 2009 after years of problems. I have had two surgeries to remove the endo but gradually the pain came back.

    I too really enjoy cycling and last year I completed the manchester to Blackpool cycle ride raising money for endometriosis. I never thought I could actually cycle all that way having not been on a bike since I was a child but I absolutely loved it.

    Also like you I found that cycling helped manage my endo pain, I too felt fitter and found that on days when I was feeling particular down or fed up I could cycle and it would clear my head.

    Thanks again for sharing

    Zoe x

  2. Really interesting post.
    I’ve been told to exercise for my health too but between the chronic pain and asthma, most forms of exercise aren’t feasible. I have a weakness in my left knee after dislocating the kneecap a few years ago and my doctor recommended cycling to build up my leg muscles. Like you, I live in a very hilly area and my office is a 40 minute drive away but I have been considering getting a second-hand exercise bike for the house for a while now. Now that my pain is more manageable I would like to get a bit healthier.
    Your post has just brought this to the forefront of my mind again. *googles exercise bikes for sale* 🙂

  3. This is great advice and well done for all your cycling. I did a little cycling a week or 2 ago and I was worried about my bladder symptoms but it was ok I need to do it more and you’ve given me inspiration to, thank you xx

    • Hi Sam, thank you!

      Just take it slow and see how your body adjusts to it, you’ll quickly be able to determine if cycling provides any long-term relief for you as it does in my case. I’m planning to cycle right through the winter it gives me that much relief.

  4. Hmm. I’m interested, but unsure. Currently I’m in the middle of a very bad flare, and I’m thinking of surgery and such again. However, having had 2 and having had the 2nd be not very helpful, I obviously don’t want to do it again. I want to exercise, but I’ve been testing the waters at my new job and I’m just not sure I can. I get tired from standing up long enough to do the dishes, or from carrying a crate of water up stairs. I *can* go up and down the stairs empty handed quickly and often, but that’s all I’ve got. I know you’re not a doctor, but you talk a lot about tucking this away if you’re not ready yet….I guess what I’m really asking is, how do you know when you’re ready to try? I’m guessing when you’re at a big low (like I am) it may not be a good idea, but I’m also more desperate for relief, which may be impairing my judgement. What do you think? Can you tell me a bit more about the state you were in when you started, or the state you were in when you knew it wasn’t time yet?

    • That’s a really great question Rachel, and I don’t mind elaborating at all.

      I think if the idea of exercising makes you wince, squirm or you get a spasm of pain while you think about it then it might not be the right time for you. The right time for me was when the thought alone wasn’t painful anymore, and the question in my mind wasn’t if I could, but how. I was already managing to work full-time so it was finding some time in the day to exercise, and cycling was the right fit for me. The priority for me was getting back to working well, then finding a way to improve my quality of life while working, if you’re still working on the former, then I’d recommend focusing on that for the time being. Very important to have one paced goal at a time.

      Basically you need to be well enough to persevere through the hard work so that something like cycling can help you improve, and not make things worse. Hope that makes sense.

      It sounds really corny, but you will know when the time is right for you to start using exercise to manage your pain, and that time is when your body is less focussed on the immediate struggle of pain. I would recommend it a few months after your next bit of surgery for example, when you’ve recovered sufficiently, and you’ve started to see what the improvement of your quality of life is, when you’re starting to retest what you can do without too much payback.

      For me, the right time was about 6 months after my last bit of surgery, I’d had a follow up with my consultant (who is brilliant), and my quality of life has improved enough for me to go back to seeing my doctor regularly instead.

      I was left with a distinct impression (by my doctor) of “that’s it” you’re fixed now, (welcome back to normality). Only life wasn’t normal, and I couldn’t believe I was being left to fend for myself when I was still in daily pain and heavily fatigued. I was left feeling better from surgery, but this mediocre life I was living couldn’t be it. That’s when I started to research cycling, and I started to try it using the pacing method above.

      Starting it all really is the hardest bit. Cycling clears my mind and I note now that my body and pain calms and eases even as I start to put my helmet and cycling jacket on, like it knows cycling is coming, and the peace of mind floats in, this is how I manage to cycle while in pain to help it too.

      I hope this helps, but my my general advice would be wait until you’re 100% sure, and if you struggle the first time, wait a little longer, you’ve really got to find that sweet spot.

  5. Erin

    A few weeks ago, I was finally able to run again after almost two years of not being able to consistently. I tried to start up a few times in the past year, but wasn’t able to sustain it due to flare ups. Now though, my pain is at a reasonable level, and I’ve been able to stick with it.
    I know it isn’t a low impact sport, but it’s a sport I’m in love with, and have been missing horribly. Luckily, I found a solution to the difficulty. I’ve found that running in water lowers the impact, and allows me do the sport I love comfortably. I’m able to run everyday as long as about half of the days are spent running in the water.
    I was afraid I wouldn’t be able to do something I really loved, but when you mentioned biking a month or so ago, I was inspired to try again. I had a few problems with pushing myself too hard, but found that reminding myself “I can finally run” helped me be happy with what I could do.

    • Erin that’s great – that’s exactly the sort of changes in behaviour I’m talking about – thinking of something that you used to enjoy doing and finding a slightly different way to accomplish it. I love the idea of running in water, that’s an excellent idea. Although I must admit that I find water extremely caustic and much prefer dry land. 🙂 I’m so pleased it’s working out for you. Any new idea with an illness is hard work, but I truly believe it pays dividends in the end – if you keep trying.

  6. Melissa

    I’ve just discovered your blog and I have to say I really like it! Having suffered from endo and fatigue for over 20 years (16 diagnosed) I struggle to find activities that I can do with my kids. While I am very thankful we were able to have children I often feel like I’m just too tired or in too much pain and can’t spend any time with them. My husband and I are shopping now for bikes and are really excited to make it a family activity. I’ve been pretty worried that I won’t be able to do it though. I am in a very bad spell and am considering a 9th surgery. Every time I think this one will be the last. 🙂 Every 2 years or so I get to such a bad place I can’t stand it any more. But this article has given me encouragement that I’m on the right track! Thank you so much!

    • You’re so welcome Melissa, remember to take it extremely slowly until you have a sense of what you can personally manage and have fun – cycling is really liberating once you get into it. Please do let me know how you get on.

  7. Pingback: How a military style boot-camp helps to manage my chronic pain from endometriosis. | The Endo The World?

  8. Pingback: Dear friends, – the endometriosis diaries

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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