Endometriosis and exercise: a personal story of triumph over pain

These cells can migrate elsewhere within the pelvic cavity and beyond into the wider body, where they behave in the same way as they would in the womb, causing bleeding each month. Unlike in the womb, this blood cannot leave the body as a period, leading to lesions, scarring and extreme pain.

Endometriosis affects each woman differently, but for many women, it can have an impact on their work, how often they can socialise, their ability to have children and to lead a healthy, fulfilling and active life.

We spoke to Hannah de Gruchy, a freelance writer, about how having endometriosis affects her ability to exercise.

Getting an endometriosis diagnosis

It can take women many GP and specialist appointments to get a definitive diagnosis of endometriosis, myself included. It’s thought that the average time from the onset of symptoms to getting a diagnosis is around seven and a half years. It took me around five years.

I have a degree in Human Biology and many years’ experience working in labs and private healthcare, so I had an idea of what endometriosis is and its symptoms.

This is why I’m so passionate about sharing my message – that it’s so important to seek second and even third opinions from different doctors if you struggle with extremely painful and heavy periods – the most common symptoms of the condition.

The importance of a diagnosis

Like many women with endometriosis, I was initially told to self-manage my symptoms with over the counter painkillers. Some women are offered the oral contraceptive pill, which can help to relieve the symptoms of endometriosis, but I wasn’t suitable for this treatment – prior to getting a diagnosis, I’d undergone two failed rounds of IVF and was almost 40 years old.

I was then considered a candidate for surgery to both diagnose and treat endometriosis.

Endometriosis after surgery

There is no blood test or scan for endometriosis – the only way a doctor can give a definitive diagnosis is by performing keyhole surgery during a process called a laparoscopy.

This involves a surgeon making two or three small cuts in the abdomen to pass long, thin instruments into the pelvic cavity, including a camera. If endometriosis is present, they will see patches of inflammation and scar tissue where the condition has caused bleeding and lesions. They can then use a laser device to effectively burn away these lesions during the same procedure.

There is no guarantee this will help to treat all of the pain – in fact, there is no cure for endometriosis. But it should help to relieve the symptoms for a number of years.

The recovery from this kind of surgery takes around two weeks – I know for me it was ten days, as ten days after surgery, I was hosting Christmas Day for ten people!

But, a couple of years on, my symptoms have returned after never really going away (but for the first year after surgery, they definitely eased). However, I got a diagnosis and this is so important. Knowing why I suffer the symptoms I do was important to my understanding of the condition, and for managing it.

My ‘normal’ is living with two days of extreme pain every three and half weeks, plus a lower level of pain for days either side of my period, but now I know why.

Managing all aspects of life with severe endometriosis

I consider myself one of the luckier ones. I’m a freelance writer, working from home full time. My symptoms got so bad in my late 30s that I could no longer work in an office for someone else, as I needed at least a day off sick every month.

Now, when my bad days hit, I can work from bed with a hot water bottle and painkillers and take it easier than I would having to commute and act ‘normal’ in an office environment.

I can plan my social life around my menstrual cycle, and if I do have to cancel something or curl into a ball in front of loved ones, they understand – I have a chronic condition that rules my life.

… Except exercise

But the one thing I can’t fully get to grips with cancelling is exercise. I wouldn’t say I love exercise, but I love how it makes me feel. Running, especially at first light in the morning when I feel like I have the world to myself, is one of the most freeing things I can do. Doing High Intensity Interval Training (HIIT) and practicing yoga also make me feel on top of the world. But not when I’m in the grips of endo.

Because it isn’t just during my period that I feel uncomfortable. During my period, my pain is at its worst, but in the two weeks leading up to it, I experience a dull ache and bloating and fairly regularly, I suffer with nausea. Plus, after a period which is always very heavy, I’m exhausted for a few days. I have around a week and half each month where I feel good, womb-wise.

As we’re all told, exercise is something that should be done regularly. The NHS advises us all to do 150 minutes of moderate intensity exercise, such as jogging, each week, plus a couple of sessions of resistance exercise such as HIIT or yoga.

Opting to do this for less than half of each month isn’t ideal. So, it’s very much a case of feeling the pain and doing it anyway.

My top tips for endometriosis and exercise

When the last thing I want to do is pull on my trainers and go for a run, here’s how I give myself the motivation to do so:

• Remembering the post-exercise high and the feeling of achievement I get when I’m done
• Promising myself a reward when I get back, such as coffee (which I live for) in the garden before starting work
• Using mantras, such as “my endometriosis doesn’t define me”, which I repeat to myself several times before exercising
• Knowing how good my day will be, if I start off on the right foot by exercising

I also choose different forms of exercise at different times during the month. Running and HIIT workouts tend to be on my good days and weeks, whilst yoga tends to be on the days when I need to be gentler on myself. I also love walking so on the really bad days, when I can, I go for a long walk.

I find that using tracking apps such as the Nike running app or Strava also help with motivation, because seeing my stats mount up makes me push myself forward in spite of endometriosis.

Exercise during my period is an absolute no-no. Quite aside from the pain meaning I can’t uncurl and stand upright, the fear of leaking blood whilst being active is so very real.

But during those other uncomfortable times throughout the month, I’m kind to myself. If each strike my feet make with the pavement sends a dull jolt into the depths of my womb, then I’ll stop. If moving into a high lunge prayer twist feels like I’m contorting my fallopian tubes like spaghetti on a fork, I’ll stop. If burpees make me feel sick… Well, burpees. No one likes burpees, least of all my pelvic cavity, so I tend to avoid them at all costs.

It takes all my might to get up and exercise when my stomach is screaming no. Pelvic discomfort, bloating and nausea are exhausting but they’re also confidence crushing. For someone who can’t have children, looking four months pregnant and pulling on Lycra leggings takes a lot of mental preparedness. Pushing through the mental and physical discomfort is something I’ve taken a few years to master. But I have.

The benefits of endometriosis and exercise

Exercise is actually very good for dealing with endometriosis symptoms, although it doesn’t feel like it at the time. The mental health benefits of exercise are plain to anyone who’s ever exercised – it makes me feel like I’ve conquered Everest every time. Exercise releases feel good endorphins, that can heighten our mood and also help to relieve pain, and I certainly feel better both emotionally and physically after exercise.

Living with endometriosis: Even if you feel like it, don’t give up

I take health and fitness very seriously, I always have. I choose to eat a plant based diet, I understand my body and what it needs and I like to keep fit for its physical and mental health benefits. So that’s my raisons d’être for exercise when I’m feeling awful. Despite the lure of painkillers and a hot water bottle.

Endometriosis might be my nemesis, but it doesn’t define me, and it doesn’t have to define you either. So don’t give up. Don’t give up on getting a diagnosis and don’t give up on exercise.

More information

• If you’re suffering with symptoms that you suspect are from endometriosis, your GP is a good place to start. (Don’t have a GP?)
• If you’re struggling to get a diagnosis, or you’d like to explore your treatment options further, our specialist Endometriosis Centre will be able to help you.