5 Women Share Their Experiences Of Living With Endometriosis
5 Women Share Their Experiences Of Living With Endometriosis

5 Women Share Their Experiences Of Living With Endometriosis

Endometriosis is thought to affect 10% of women of reproductive age across the world. A debilitating condition that causes tissue similar to the lining of the womb to grow elsewhere – like the ovaries and the fallopian tubes – it can result in severe, chronic pain. What’s more, women in the UK wait an average of eight years for a diagnosis. From its under-the-radar symptoms to ways they’ve found to manage the condition, we asked five women about their own experiences with endometriosis…
By Tor West

Kayleigh Attwood, 36

I spent 15 years looking for answers. I’ve had painful, heavy periods for as long as I can remember. As a teenager I was prescribed medication for heavy periods and, not long after that, the pill. In my mid-20s I was experiencing IBS symptoms around my period, and my doctor suspected endometriosis, switching me over to the mini pill to stop my periods completely. Not having a period for a few years was great but I felt disconnected from my body.

I’ve been off the pill for six years. My periods have got progressively worse. PMS starts two weeks before my period and cramps a week before. The pain is also much more intense, at times making it uncomfortable to move. I couldn’t handle it anymore, so I went back to my doctor and asked to be referred to a gynaecologist.

Diagnosis is complicated. I’ve had endless bloodwork, scans and MRIs but endometriosis scarring is hard to detect, so my next option is a laparoscopy. Although my gynaecologist is confident my symptoms are endometriosis, it’s now a case of figuring out where it is in my body as they suspect it’s also in my bowel. It was helpful to have my expectations confirmed, but unfortunately the treatment options are still so limited: hormonal birth control, surgery, a synthetic menopause or hysterectomy. I don’t want to go back on the pill, so their recommendations were more holistic, looking at stress management, nutrition and alternative therapies like acupuncture. It has felt quite daunting to know where to begin. 

Pain management is my priority. Daye’s CBD tampons are game-changing and I go through tubs of Forage Botanicals Belly Balm. Not drinking alcohol has also helped. I’ve never been a big drinker, as my period pain would be so much worse. If I drink now, I often get period-like cramps on top of a hangover, which is tough. Taking supplements like magnesium and DIM (great for premenstrual dysphoric disorder, which I also have) has also helped regulate my cycle. 

I’m worried about my fertility. I’m in my mid-30s and I don’t have children. Going through this process, and having my gynaecologist confirm this could be an issue, has affected me more than I realised. I often tell people I’m okay with whatever happens, but I’m beginning to understand this is partly down to deeper-rooted fears that it might not happen for me.

Talk about it. If you have endometriosis and need to reschedule a meeting or can’t see a friend, tell them why. I spent so many years thinking people wouldn’t believe me or think my periods ‘couldn't be that bad’. The first time I was honest about why I couldn’t make a meeting, the person I was cancelling on replied to say that she has endo too. It’s permission giving, and helps you and others feel seen. 

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Yana Miladinova, 27

I was diagnosed two years ago. I was 13 when I got my first period, 14 when I was told to ‘man up’ by the school nurse, and 15 when I was prescribed paracetamol. At 19, I started experiencing pain during sex. For six years I had all the symptoms of endometriosis, but doctors refused to treat me. After years of endless appointments, I was diagnosed with endometriosis in 2021 via laparoscopy. It took around two weeks of resting and minimal physical activity to allow my wounds to heal. I was left with three minor scars in my stomach area – they remind me daily of my condition. 

I’m currently preparing for surgery. As an initial treatment, I was given the contraceptive pill to control my hormones and stop my natural cycle. It worked for a year, but in November I had a period for 28 days and developed an ovarian cyst. After seeing a different gynaecologist (I had to go private as the NHS waiting list is more than three months) I have since switched pill but continue to bleed daily. Some days the pain is so extreme that I can barely get up, let alone get to the office. There have also been times when I start cramping or bleeding on a night out with friends. 

Endometriosis has affected me more emotionally than physically. No doctor prepares you for the emotional toll. You start blaming yourself and I feel anxious most of the time, thinking about the future. I recently self-referred to MIND Counselling and have been having weekly sessions. They have helped me reframe my outlook on the condition and control my reactions to my emotions. Some days, I feel very much in control – I take my pill at a specific time of the day, I cook healthy meals and I exercise – but as soon as the pain kicks in or bleeding starts, that all goes away.

Listen to your body. There are millions of articles online telling you how to manage your symptoms, and what to eat and drink, but your experience is unique to you. Learn to recognise what feels good and right for you. Don’t be afraid to talk about the process with friends or family, as sharing will help you let go of negative thoughts. Some days will be better than others, so appreciate those, and let yourself rest when your body needs a break.

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Olivia Brierley, 31

There’s a huge stigma around women’s health. At school we’re taught that we bleed every month, but that’s it. It’s vital that we normalise discussions on periods, fertility, the female anatomy and body image. Until then, many women will continue to feel too embarrassed to seek medical attention or be unable to identify their own symptoms. When I was diagnosed, I’d never heard of endometriosis.

Being on the pill for years masked my symptoms. In March 2021 I decided to come off the pill in the hope that my partner and I would conceive. During my first post-pill cycle I was struck with debilitating pain, bent over double on the bathroom floor. I made an emergency private appointment to see a gynaecologist the following week – the NHS waiting list was too long. I experienced months of traumatic pain, missed work and hospital appointments. I was finally offered an MRI, but it didn’t show any signs of endometriosis. 

I felt a sense of relief when I was diagnosed. An extensive, two-hour excision laparoscopy surgery confirmed stage two endometriosis, adenomyosis and PCOS. I felt relief that none of this was in my head – the pain was real. 

Holistic practices have helped. What a lot of people don’t prepare you for are post-operative complications, which I experienced a lot of. Cycle syncing has been a game-changer – this is the practice of changing your diet, exercise and lifestyle habits to align with the stages of your menstrual cycle. The idea is that by changing these factors during each stage of your cycle, you're able to meet the hormonal needs of your body, making the menstrual phase and hormonal imbalances such as endometriosis easier to manage. Since I started cycle syncing, I have more energy, higher productivity and fewer mood swings. I also rely on Ayurveda – the ancient healing system – to reduce pain and inflammation. 

Don’t give up. Keep fighting for a diagnosis. There’s still so much the health industry needs to learn about this chronic illness – there’s a lot of misinformation and a lack of support from top specialists. I had to work hard and spend hours searching for information online, in forums and on social media, connecting with other endo warriors around the world, merely because the information and guidance isn’t out there. 

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Sarah Markulevicius, 36

My biggest concern is that I’ll pass it to my daughter. Endometriosis doesn’t equal infertility, but by the time I fell pregnant at 33, I’d had four laparoscopies with excision of endometriosis each time. By the time I started trying to conceive, I had a lot of scar tissue so wasn’t sure how my body would adapt to pregnancy, or if it could happen at all. When I did fall pregnant, a lack of periods gave me a bit of a reprieve, and I chose to breastfeed partly because I knew my periods wouldn’t return while I was doing so. One of my biggest fears is that I’ll pass the condition to my daughter and have no answers for her – endometriosis is still such a mystery. 

My symptoms are coming back. Despite being told having a baby could help, pregnancy isn’t a silver bullet. Prior to having my daughter, I found exercise helped, but it’s something I’m struggling with now I’m balancing motherhood and work. I’m currently taking tranexamic acid for the heaviness of my periods – I often experience flooding as well as cyclical diarrhoea and constipation – which is helping without major side effects, and I’m managing the worst of the pain with over-the-counter options, while I debate starting the journey towards having a hysterectomy. 

You’re not alone. When I was diagnosed over ten years ago, there wasn’t much support out there, but it’s vital to have someone who knows what you’re going through. For me, it was my mum. Support groups or forums can also be an incredible source of support – Endometriosis UK have been amazing. 

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Alice Bennett, 27

I was told it was IBS. I experienced debilitating pain from my very first period. I missed days of school because of intense contractions which would cause me to be sick and faint. I guess I knew straight away it wasn’t right as my friends didn’t suffer in the same way, but I was told by doctors that it was ‘just a bad period’. Over the next decade, I went on the pill, which helped initially, but I then developed stomach problems and severe stabbing pains in my womb and vagina. Every few months the pain would be so awful that I would be bed bound for days, wrapped in the foetal position and unable to move. The first time I had this, I dragged myself to A&E where I was told it was ‘IBS’ and sent home. I now recognise this debilitating pain as an endometriosis flare-up.

In the last four years, the pain has been uncontrollable. It felt as though weights were constantly piled on my womb and that barbed wire was being wrapped around my womb and slowly pulled out of my vagina. Deep hip pain radiating to my knees, localised stabbing pain in my lower stomach, nausea, lower back pain, and tiredness were also daily occurrences for me. The monthly flare-ups became more regular, and when those came no medication could even touch the sides. 

Since being diagnosed, I have physical and emotional relief. My diagnosis was far from straightforward. Every NHS consultant I saw fobbed me off and made me feel as though the pain was all in my head. Between 2020 and 2022, I fell between the cracks of NHS healthcare and felt like accepting defeat because I no longer had the energy to keep fighting. Last year, I got access to private healthcare through work and finally got an official diagnosis after laparoscopic surgery. 

My daily pain has gone. I occasionally experience pulling sensations and discomfort, but it is minimal. I have acupuncture weekly to keep pain at bay, and do cycling and gentle yoga. My triggers are stress, lack of sleep, too much alcohol, and dairy. However, I fear how quickly the endometriosis will grow back. 

For more information on endometriosis, visit the NHS. You can also get support from Endometriosis UK, the country’s leading endometriosis charity. 

Listen to SL Talks Endometriosis – a discussion with SL editor Charlotte Collins, Dr Shahzadi Harper, founder of the Harper Clinic and Lisa Potter-Dixon, sufferer and advocate for those with endometriosis – here


DISCLAIMER: Features published by SheerLuxe are not intended to treat, diagnose, cure or prevent any disease. Always seek the advice of your GP or another qualified healthcare provider for any questions you have regarding a medical condition, and before undertaking any diet, exercise or other health-related programme.

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