Living with endometriosis: what 4 women wish everyone knew

“Endometriosis isn’t all about bad periods.” We speak to four women about their experiences with endometriosis, from what’s helped manage their symptoms to how it really affects their day-to-day lives

When it comes to women and pain, it’s no secret that historically, some have found it can be a struggle to be taken seriously and receive 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 and more likely to be referred for psychotherapy, exposing a patient gender bias that could lead to disparities in treatments.

As explored in our feature, The thorny issue of women & pain, this may result in symptoms being overlooked, particularly in the realm of women’s reproductive health. 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.

For those who might not know, 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, such as the ovaries and fallopian tubes. It’s estimated that – in the UK alone – around 1.5 million people are currently living with the condition, 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 pelvic pain, period pain that stops you from doing normal activities, pain during or after sex, and when peeing or pooing during your period, sickness, diarrhoea and fertility issues.

For those of us who don’t have endometriosis, it may come as a surprise to discover just how common it is and how wide-ranging its symptoms can be. So, for those wanting to know more about what it’s really like in order to better support loved ones (as well as help provide a sense of community for those with the condition), we speak with four women living with endometriosis to find out what they wish everyone knew about it.

Here are their stories.

Ami Spalding, content creator, 25

“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 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.

“When I’m experiencing a flare-up, I always reach for the same items. I pop on a BeYou pain relief patch, I put a heat pad on my stomach and a hot water bottle on my back, and I take pain relief tablets.

“Rest is vital and my bed is always my best friend. My surgery and nerve-block injections have significantly reduced my symptoms, as well as going plant-based and alcohol-free. However, as there’s no cure for endometriosis, the main aim of the treatments is to ease symptoms and 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 establish a pattern of symptoms, which paints a clear picture to present to your GP. Don’t give up until you have a treatment plan that you’re satisfied with. You don’t deserve to live in discomfort. Keep pushing.”

“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 I couldn’t 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. I believe I’m often not listened to and, sadly, I know this is not a unique experience among people of colour. I was grateful when I was eventually referred to a gynaecologist who listened to my experiences, what my pain felt like, my words and didn’t make me feel like it was all in my head.

“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 symptoms management, it’s important to recognise that everyone is different. What works for me is ensuring a balanced diet, tracking my menstrual cycle and recording my symptoms and pain. Heat pads, medication, baths, herbal teas and exercise all help with my symptoms and improve how I feel. 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’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.

“Having endometriosis means I have to take strong painkillers 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 painkillers seem to help the most, while my symptoms are made worse by 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 disease that has been found on 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 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 bed bound. 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 peritoneum between the rectum and the posterior wall of the uterus), and that my organs had been stuck together. 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, bowel resection (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 strong painkillers will ease it. A lot of rest, tea and hot water bottles also help.

“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.”

If you think you may be experiencing symptoms of endometriosis, see your GP, especially if they're having a big impact on your life. You may also find it helpful to contact a support group, such as Endometriosis UK, for information, advice and details about local support groups.