“Endometriosis isn’t all about bad periods.” We speak to five women about their experiences with endometriosis, from what’s helped them to manage their symptoms to how it really affects their day-to-day lives
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When it comes to women and pain, it’s no secret that historically, some have found it can be a struggle to find the right support.
In fact, a 2021 study on gender biases in estimation of others’ pain from the University of Miami revealed that despite exhibiting and reporting the same level of pain, women were less likely to be prescribed pain relief than men. They were also more likely to be referred for psychotherapy, exposing a patient gender bias that could lead to disparities in treatments.
We explored this in our feature, ‘The thorny issue of women & pain’.
While in recent times, strides have been taken to close the knowledge and gender gaps, there’s still greater transparency needed when it comes to conditions like endometriosis, where on average, it can take up to eight years to be diagnosed, according to statistics from Endometriosis UK.
Endometriosis is a condition where cells similar to the ones in the lining of the womb are found growing in other parts of the body, like the ovaries and fallopian tubes. These cells form patches of endometriosis tissue that react to the menstrual cycle every time it occurs, and bleed during the period just like the lining of the womb. However, this blood can’t leave the body, which can cause pain, inflammation and the formation of scar tissue.
It’s estimated that in the UK alone around 1.5 million people are currently living with endometriosis. That’s approximately 10% of women and those assigned female at birth of reproductive age.
Symptoms can vary from person to person, but can include:
- Chronic pelvic pain
- Period pain that stops you from doing your normal activities
- Pain during or after sex
- Pain when weeing or pooing during your period
- Sickness
- Diarrhoea
- Problems with fertility
For people who don’t have endometriosis, it may come as a surprise to discover how common it is and how wide-ranging its symptoms and severity it can be.
To help you better understand what it’s really like to live with endometriosis, support loved ones and build a stronger sense of community for those who have endometriosis, we’ve spoken with five women who shared what they wish everyone knew about the condition.
The following stories are their own personal experiences. If you’re struggling, affected by anything mentioned or are concerned about any symptoms, make sure to speak to your GP.
“I was always at the doctors with painful cramps – the kind where you can barely stand – and was told that the reason was because I had inflamed ovaries. When I was 15, I went on the combined pill, which initially helped. However, this wasn’t a long-term solution and I had to come off it when I was going through a few mental health struggles. The consequences were dire. Each and every month I’d be in so much pain. I didn’t feel it was normal, but my doctor initially prescribed me pain relief.”
I had surgery when I was 22
“I was eventually referred to a gynaecologist, where multiple ultrasounds revealed signs of endometriosis. I was then referred for surgery, which confirmed it, and showed extensive endometriosis over my pelvis and reproductive organs. The fact that I wasn’t able to get surgery until so late in my journey says a lot about how difficult it was to get a diagnosis at the time.”
It’s so unpredictable, but there are things that have helped me
“When I’m experiencing a flare-up, I always reach for the same items. I pop on a BeYou monthly patch to provide comfort, I put a heat pad on my stomach and a hot water bottle on my back, and I take pain relief tablets.”
“I find rest is vital and my bed is always my best friend. My surgery and nerve-block injections have significantly reduced my symptoms. I have also found that for me having a plant-based diet and being alcohol-free has supported my wellbeing. However, as there’s no cure for endometriosis, the main aim of treatment is to help ease symptoms. They only tend to work for a limited amount of time before the tissue starts to regrow – something I’m starting to experience.”
“If you think you might have endo, my advice is to start a symptom diary and be consistent with it. Endometriosis is not just a bad period. Writing it all down can help establish a pattern of symptoms, which paints a clear picture to present to your GP and can help support having a treatment plan that supports and that you’re satisfied with. You don’t have to live in discomfort.”
Natalie Meagan-Blake, duty manager, 39
I missed so much school due to the pain
“I was nine when I started my periods. They were always heavy flowing (to the point that I’d bleed through my clothes) and came with debilitating pain, so I had to miss a lot of school. I was told that this was normal for some people. In fact, my mum experienced the same symptoms. I asked her a bit more about it when I was in college, and she told me she had something called endometriosis, but that she knew little about it. It was at this point I did my own research and went to my GP to see what could be done.”
“I was diagnosed with polycystic ovary syndrome in my early twenties and endometriosis 10 years after that. In the years leading up to my diagnosis, I experienced all-over pain, brain fog and even blood in my stool, but I was told that it was unlikely that I have endo, like my mum, who is white (historically, the condition was thought to predominantly affect white women).”
“My GP said it was ‘more likely fibroids’, which tends to be more commonly associated with black women, but I was eventually referred to a gynaecologist.”
I can be active one minute and floored the next
“It’s not a matter of taking things day by day. It’s hour by hour. My pain is chronic and can be unpredictable. I can be fine one minute and terrible the next. This has led to uncomfortable conversations between some friends and family who find it hard to understand how I can flit between the two opposites so quickly.”
“Dealing with endometriosis is like wearing a mask; pushing through the pain just to try and show up. This can impact your mental health as you can feel so alone. It’s important to find a support system and talk openly. There’s an amazing community out there.”
“In terms of symptom management, it’s important to recognise that everyone is different. What works for me is ensuring a healthy balanced diet, being active, tracking my menstrual cycle and recording my symptoms and pain. Heat pads and medication help provide symptom relief whilst warm baths and herbal teas help provide comfort. And I can’t forget the importance of a sunny day and laughter! I’d tell other people with endometriosis to not be afraid to do research and ask questions. And I’d also tell them to love themselves, live in joy and laugh through the tears. Tell yourself, ‘I can do this’.”
Jade Carrington, biomedical science student, 28
“I first suspected I had endometriosis in 2015. I had so many symptoms, including pain outside of my periods (specifically in my abdomen, lower back and thighs), heavy, painful periods with lots of blood clotting, painful sex, painful bowel and bladder movements, brain fog and fatigue.”
“My GP referred me to a gynaecologist, who suspected I had endometriosis, and I was given the choice of hormone suppressors that place you into a menopause state or to have laparoscopic surgery to get an official diagnosis. I decided to opt for surgery to confirm it and get any endometriosis tissue removed at the same time. The fact that this tissue was present confirmed I did indeed have the condition.”
I do whatever I can to relieve everyday stress
“I’m now awaiting another operation to remove more endometriosis tissue as it’s not one op and you’re sorted – sometimes the tissue regrows. It grew back within a year for me.”
“For me, having endometriosis means I have to take pain relief and hormonal contraception daily to be able to do the most basic things, such as eating, brushing my teeth or getting out of bed.”
“When it’s at its worst, it affects my ability to walk, exercise, work and even socialise. I've found that heat therapies and pain relief seem to help the most, while my symptoms are made worse by feelings of stress. When this happens, I’ll do whatever I can to calm down, whether it’s taking a long bath, indulging in a face mask, or listening to my favourite music.”
“I’d love people to understand that endometriosis isn’t all about bad periods. Far from it. It’s a condition that can potentially affect every organ in the body, including the brain, eyes and skin in some cases.”
“For that reason, we need to keep shining a light on what it means to live with endometriosis. Your pain is valid and you deserve to have answers – don’t forget that.”
Tanya Aumeer, housing pathway manager, 31
I was misdiagnosed with IBS
“I can first remember having symptoms of endometriosis while at university. I used to have pain before my periods, then really heavy, painful and irregular periods, which would leave me bedbound. I’d feel nauseous and I’d lose my appetite, but it took a long time for me to receive an official diagnosis.”
“Over the years, my symptoms progressed to fainting, vomiting, extreme fatigue and then bowel symptoms, such as constant bloating, painful bowel movements, bleeding from my rectum and not being able to retain what I ate. It was intense. “
“After being misdiagnosed with irritable bowel syndrome (IBS), it was finally confirmed that I had endo when I was 27 years old. Further investigations revealed that I had deep-infiltrating endometriosis on my bowel, bladder, urethra, pelvic organs, rectum and pouch of Douglas (the extension of the inner lining of the abdomen between the rectum and the womb), and that my organs had been stuck together due to adhesions between them formed by patches of endometriosis. I was then given an injection to induce menopause, which shut down my ovaries in preparation for surgery.”
“I had my endometriosis excised, organs unstuck, parts of my bowel removed (which formed my stoma bag) and temporary stents inserted. It was frightening, but day-to-day, my endo is more manageable since having surgery. When I do experience symptoms, it makes it difficult to work or socialise and I find myself having to call in sick or cancel plans. I’m fortunate that I have an understanding workplace, but there is a feeling of guilt at having an illness that’s unpredictable and is challenging, mentally and emotionally.”
“Changing my diet and exercising have helped since having surgery, but when I have a flare up, the pain is unbearable and only pain relief will ease it. A lot of rest, tea and hot water bottles also help bring comfort.”
No matter how bad it gets, remember you’re not alone
“You know your body better than anyone else. Always advocate for yourself and push for answers. I’d also advise keeping a symptoms diary, doing your own research and preparing questions ahead of any appointments.”
“Lastly, remember you’re not alone. I’ve been through so much but found so much solace and incredible support through social media and charities. Reach out to these warriors for support – they’ve got your back.”
Laura Russell, diagnosed at 16 via laparoscopy
“I started my periods around age 13, every single month I took time off school due to debilitating pain around the time of my period. I was struggling with my energy levels, brain fog and intense pain. The pain I experienced was an intense cramping pain in my lower abdomen, back and thighs. My abdomen would feel like it was being pulled and tugged inside.”
It’s affected every part of my life
“Endometriosis has affected my life in so many ways. I’ve had seven surgeries for it so far and will continue to need them repeating every couple of years until I have a full hysterectomy. It affects my mood and mental health, my energy levels and ability to make plans.”
I’ve made significant lifestyle changes to manage my pain
“Over the years I’ve tried multiple things to help my pain, from diet changes, for example, I limit dairy and am mostly gluten free. I also avoid red meat, as personally these things help with my wellbeing. I’m into holistic and alternative therapies like Acupuncture, Reiki and yoga and, on occasion, breathing exercises can help to calm me when I’m in a lot of pain.”
My endometriosis consultant is incredibly supportive and a fantastic advocate
“Over the years I have had mixed experiences with healthcare professionals. My endometriosis consultant is incredibly supportive and a fantastic advocate with lots of knowledge about my endometriosis.”
Advice? Find what works for you
“Find things that work for you and bring you comfort, learn your triggers. Keeping a pain diary can be really helpful for identifying triggers whether this is food, environments, activities, amount of sleep, medication etc. Once we identify some of our triggers we can then try to prevent as many flare ups as possible. Whilst it’s not possible to avoid them all, it gives us back a sense of control. For me personally I find heat therapeutic, so a warm bath, heat pad or patch is usually soothing for me. I also find music really helpful as something to distract me when I’m struggling with my pain and might be struggling to concentrate.”
If you think you might be experiencing symptoms of endometriosis, it’s important to see your GP, especially if the symptoms are significantly affecting your life. You may also find it helpful to reach out to a support organisation like Endometriosis UK for advice, information and details on local support groups.
