Cardiac physiologist Liz has suffered with endometriosis since she was a teenager, but wasn’t officially diagnosed until she was 34. Now 42, she refuses to let it stop her doing triathlon. Here’s her story of exercising with endometriosis.
Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes. It can affect women of any age and it’s a long-term condition that can have a significant impact on your life, this is how it’s impacted mine and what I’ve done about it…
The fight to be believed
My mum had endo, but wasn’t diagnosed until she was 42. She had a full hysterectomy shortly after, and her abdomen was riddled with adhesions; the extensive damage to her bowel resulted in her using a stoma for two years.
My periods began when I was nine and were always painful, but I didn’t seek a doctor’s help until I was about 17. After repeated visits, being put on the pill, which didn’t work, I was eventually listened to when I was around 26. An ultrasound came back negative, but this is common, depending on the stage of endo that you’re at.
I told the GP about my mum’s history (it can be hereditary), she looked me in the eye and said I categorically didn’t have endo, making me feel so ashamed that I didn’t seek further help until my husband and I were struggling to conceive.
The GP we saw was the first to believe me. I was 34. Three years later, I finally had an ablation [a procedure that surgically destroys the lining of your uterus], which stopped the pain for a long time. But I’ve got an appointment to go back in November because it’s coming back again (I’ll be 43).
- 1 in 10 women of reproductive age in the UK suffer from endometriosis
- 10% of women worldwide (176 million) have endometriosis
- The prevalence of endometriosis in women with infertility is as high as 30-50%
- On average it takes eight years from onset of symptoms to get a diagnosis
- The cause of endometriosis is unknown and there’s no definite cure
- Source: Endometriosis UK
Wildly different symptoms
Every woman has a totally different experience and mine varies wildly from month to month. My symptoms include massive, painful bloating. I’ve even bought maternity trousers for those days – for someone who can’t conceive, the irony isn’t lost on me!
I’m in pain a lot, especially when I ovulate, which is also when the bloating is worst. Sometimes this can double me up in pain for a day, like someone grabbing and twisting my bowels in a very specific spot. Once the twisting pain stops, I have a steady ache that gradually builds for a couple of weeks until I start my period. It doesn’t end until my period ends, so it’s often three weeks of pain.
I can be wiped out for a day or two, on many occasions being close to, or passing out. My heart rate can be erratic, too, sometimes it can be very slow (34bpm on the days of my period when I was in training for a half marathon). Sometimes it just runs a bit high all day; I work in cardiology so I’ve worn every testing device, but I can’t figure out why it does that.
Before the surgery I’d been extremely stressed. I’d often bleed during heavy exercise and had exhaustion akin to having stayed up all night, even though I’d had a quiet week and couldn’t keep my eyes open beyond 6pm.
Knowing your cycle is key
Tracking my cycle, and the variations in patterns and where and when the pain occurs, was key, as was understanding what pain is significant and what caused the pain. For example, I did a 100-mile bike ride on the day of my ovulation, tired and with poor nutrition, which resulted in a huge bleed (the white saddle wasn’t a great choice, in hindsight).
I still don’t know what caused it but once it was out of my system, I knew I’d be okay to continue. If I put in a very hard effort when I ovulate, this will happen again, so I don’t, I ease back the pressure on myself. But I don’t think you need to change your training in advance, because things can change.
It’s better to just listen to your body and adapt based on how you feel on the day. It can also vary during the day; I often feel better in the morning than the evening, so if I can get training in early I’ll do that.
Exercising with endometriosis
Triathlon is the perfect sport because of its flexibility. I can’t stick to a plan 100% of the time, which can be mentally tough to feel like you’ve ‘failed’ at training, so it’s important for me to listen to my body. If I’m in pain, running is the worst exercise, because the pounding of pavements seems to carry up to jolt my insides. On those days I might swap to a walk, or a cycle or a swim.
Sometimes with the pain you’ve just got to admit defeat and take another rest day. My heart rate sometimes rises really quickly, and it can be demoralising to try to keep in HR zones when your hormones are raising your HR anyway! Instead, I train using Rate of Perceived Exertion (RPE) 4-6, being able to hold a conversation but out of breath.
I know my finishing times will be lower, but I congratulate myself for getting out there. Knowing my body has been key. When to adapt a training run/ride/ swim. When to take it easier, slower, fewer hills, cutting it short. When to have a rest day or do a gentle yoga session or a walk.
It’s not always the pain that stops me. I struggle with feeling like I’m going to pass out occasionally, so I just take a rest day. I’ve also noticed that when I swim in cold water during my period I really don’t react very well. My core temperature drops quickly and I take longer to recover, so I make sure to reduce my swim time to keep safe. Also knowing that hypothermia happens after you get out of the water, I don’t wait to get cold either.
Managing energy levels
The exhaustion at certain times makes it really difficult to train hard. I’ll push myself as far as I can, but I know I’ll pay for it for a couple of days later, which makes the following two days poor quality too. Sometimes it’s sensible to take an extra rest day and come back stronger, than having three days of poor quality.
It’s mentally hard to acknowledge that’s okay, especially if you’re following a plan with others and you know they’ve trained. Pain, bleeding and anaemia all have a massive effect on my energy levels. I often don’t realise I’m anaemic until I’m exhausted and feeling dizzy, which impacts on everything, but especially training.
It’s no fun coming back from a cut-short run and feeling sick from dizziness. I’m trying to keep up with iron supplements daily to ensure they don’t drop too low. I’m trying to improve my sleep routine too, following all the usual advice.
Liz’s tips to managing endometriosis:
- Listen to your body, adapting and conquering along the way, but also being prepared that on days when you need to rest, do just that.
- Work on your mindset, accepting your body’s limitations; pushing through isn’t necessarily the best approach.
- Know and really understand your symptoms, triggers, menstrual cycle – each woman is different.
- Investigate all aspects of your lifestyle to really optimise your health and training – nutrition, hydration, training, sleep, recovery, stress and mindset.
- Don’t let the endo define you – you can still train/race as a triathlete.
- Advocate for yourself and do your research. A lot of GPs have limited endo knowledge. If you have very heavy periods and/or crippling pain and/or any symptoms, ask to see a gynaecologist. Print off the latest NICE guidelines to take with you.
- Useful resources: Endometriosis UK; NHS.
Preparing for an event
Stress is a big factor in my flareups, so I do everything I can to reduce it! I’m very organised, laying out everything I need a few days before, ticking it off a list, avoiding a last-minute scramble. I find meditation and journaling helpful, keeping a gratitude diary, affirmations, and using whatever’s in my toolbox to reduce stress and remind myself to do my best on the day, even if that might mean coming last if my body says no!
Getting to know my body, what causes flare-ups and actions to take has been empowering. This sometimes means taking painkillers for a couple of days before; understanding that I’m at a time in my cycle where I’ll need more iron, from supplements or food; knowing that I’m at a time in my cycle where I’ll feel more dehydrated than usual and upping water intake before a race and taking extra water and electrolytes; assessing nutrition and packing what’s required for me in said phase of my cycle – for example, it might be better to take solid food rather than a liquid supplement to avoid extra loo stops, or it might be better to use liquid supplements because solid food may upset my bowels.
I also use a menstrual cup and it’s been wonderful, more comfortable and I don’t have to change it as often as tampons or sanitary towels. I usually take a low dose painkiller the day before an event to get it in my system and then take them as normal on the day of a race.
Be aware of the dangers of NSAIDs (such as ibuprofen) on the kidneys when you’re dehydrated, though. I take paracetamol, which often doesn’t have a huge impact. I had to find out what worked for me through trial and error. Personally, cutting out gluten, alcohol and following an anti-inflammatory whole foods diet has had a huge impact.
Magnesium spray on my tummy helps me relax my muscles and I sleep better. And when my cramps are bad I use an anti-spasmodic, which probably works because the bowel is often a site for endo. Compression shorts help my insides to feel supported when running and cycling, and I’ve even used one of those post-partum bands designed to help pull the muscles back together after pregnancy!
Not letting the endo win!
I know that being stronger physically helps me feel stronger mentally, and most of the time, gentle moving helps with bad pain. I feel happier for doing exercise as endo can be a depressing place to be. It’s also great to be able to train with others on the good days when I can keep up. Being in nature is another big de-stressor, so I’ll try and choose a run/ride/swim/walk with a view. My motivation to train and race is driven by not letting the endo win, not letting it beat me.