According to the Royal College of Nursing, endometriosis affects 1 in 10 women and those assigned female at birth in the UK (around 1.5 million). It's the second most common gynaecological condition (after fibroids), and it takes 7.5 years on average from the onset of symptoms to get a diagnosis.
It's this last point, in particular, that's staggering. Which begs the question: why? For starters, endometriosis can often be confused or misdiagnosed as other conditions, like Irritable Bowel Syndrome. And the only way to definitively confirm the condition is through a laproscopy (surgery which involves a small camera being inserted into the pelvis via a small cut near the navel to look for the presence of endometrial-like tissue outside the uterus). Even so, one of the biggest problems women report coming up against, is feeling that their symptoms are being underestimated and under-treated, and many feel that the gender health gap often stands in the way of women getting diagnosed.
We spoke to four women who shared their experience of getting diagnosed with endometriosis.
Emily Maddick, 42, Margate
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“I had dull, throbbing pain on my right ovary sporadically throughout the month, but it heightened when I was ovulating or on my period. The pain was more pronounced on my right ovary, but it would spread to my entire pelvis and lower back when it was really bad. My whole stomach was really swollen too. In 2017, just before Christmas, I had to be rushed to A&E as I was in such agony. I was bent over double and had never experienced pain like it. I remember the bumps in the road causing me excruciating pain on the way to hospital. Not even morphine helped with the pain when I got to hospital.”
"It took around four years to finally be diagnosed. No one took my pain seriously. But this was between 2015 to 2018, so no one was talking about Endometriosis much back then, nor medical misogyny. I remember being in my GP office begging for an appointment and having to cry to get seen. Even then they dismissed me and gave me prescription painkillers and told me it was just bad period pains.
Eventually, I had a colonoscopy to see if it was related and the endometriosis had spread to that part of my body. It was incredibly painful and they had to stop the procedure halfway through. I felt dismissed. At A&E in 2017, I remember the A&E nurse looking at me like he didn't believe me when I told him the morphine wasn't working. I saw him whispering to a colleague and got the vibe that they thought I was being dramatic or faking it. It was only when they gave me a suppository that the pain subsided. I was referred to a gynaecologist then, who eventually diagnosed the suspected endometriosis. Funnily enough it was a male gynaecologist who made the final diagnosis. A female gynaecologist I saw at A&E also dismissed it as menstruation related.
Six months after the diagnosis I had keyhole surgery – two laparoscopies – to remove the endometriosis. There was a significant amount, mainly around my right ovary unsurprisingly, which also had a small cyst on it. The gynaecologist told me that surgery wasn't necessarily a cure and he was right. Over the next year it built up again and, as before, for 2-3 days a month I was in screaming pain. My mood swings ahead of my period were also awful. I was irrational beyond words and it really upset me how angry I used to get – I couldn't control it and knew it was entirely due to the endometriosis. Eventually, in May 2020, the gynaecologist suggested I have a Mirena coil fitted, which has really, really helped. The symptoms are about 90% less. I still have pain and swelling around my period and ovulation, but I am very grateful for having the coil fitted. It's a game-changer. I wouldn't have surgery again."
“The gynaecologist made me cry when I asked him if the diagnosis would affect my fertility (it can affect fertility) and he said, rather insensitively 'the only way to find out is to try' to which I responded, I would like to try, but I haven't found anyone to try with yet. I still worry all the time that it has affected my chances of conceiving. I was angry that it took so long and I definitely felt dismissed. The pain was excruciating. But I am so glad I have had the coil fitted.”
“I'm still worried about my fertility and I wish I didn't have a protruding stomach, but I'm grateful for the coil.”
Priya, 33 from Hertfordshire
“I mid 2016, I started getting flare ups all of a sudden. I was a size 8, with a flat stomach, and my flare ups were so huge I looked about 6 months pregnant. They were happening all day, everyday. My tummy was so hard, stretched, and heavy, I would struggle to stand and walk. I struggled to put socks on, or turn over when sleeping, and everything I wore felt uncomfortable. I was fatigued and tired everyday, no matter how much sleep I got. My body was finding it hard to digest my food and I was suffering with nerve pain down my legs and sharp pain in my right pelvic and abdominal area. I started to experience severe ovulation pain, along with nausea and painful bowel movements during my periods. I would be lucky to have two or three good days in the month. These were all signs to me that something wasn't right as before this started to happen, I was full of energy and smiles. I was known as a social butterfly.
As the years went by, I was given no help and in 2018, my symptoms worsened and I had nine periods in three months, which was a big sign something wasn't right. I started suffering from hot flushes, irregular periods, brain fog, insomnia, hormonal imbalance, constant cravings, blurred vision, dizziness, memory loss and so much more, which made me worry that I'd hit early menopause. My joints were weakening and I felt like an 80 year old in a 28 year-old's body. My periods became heavier, my flare ups became worse and I suffered with excruciating contractions, daily. I'd fall to the floor and felt like my organs were being ripped out of me. I was constantly in and out of hospital for scans and tests. I just knew something was wrong with my reproductive organs but this was the one area the doctors were ignoring."
"The process to get help was tough. I knew there was something wrong however, I continuously got dismissed from A&E and my doctors. The first time I got taken to A&E, in tears with a flare-up and struggling to stand, I was seen by an older male doctor who told me ‘I needed psychological help’ and ‘there was nothing wrong with me’. When I went to my doctors for help, I was told I just had UTIs and continuously put on antibiotics, which made me feel worse. A lot of the time, I wasn't even tested.
As I kept fighting and going back to the doctors, the one good thing they did for me was referrals to check for cancer. The symptoms that are experienced with endo are similar to cancer, therefore it was nice to have peace of mind. However, it didn't help with my problem, as each time the results thankfully came back clear, I was left to get on with it. I was even told it was IBS. Finally in 2019 (nearly three years later), I got referred to a gynaecologist after experiencing those 9 periods in such a short time.
I was seen by a female gynaecologist who told me I had deep endometriosis on my bowels and right pelvic area (shown on my MRI). She gave me three options: 1) take the pill, 2) have a baby or 3) agree to have a laparoscopy, which she was not a fan of as my bowels were involved and she mentioned it could be very complicated. It was quite a lot of information to take in as she told me I may not be able to have children if I waited too long (I was 29).
I opted for the pill treatment for three months to give me time to figure out what to do. In those three months the pill made my symptoms worse and my flare ups became bigger, so I stopped. Each time I went back for an appointment, I was pressured into considering pregnancy as a cure. Physically, I felt unable to carry a baby. I was struggling to look after myself and had a lot going on in my personal life, so I felt more could be done to manage it another way.
When I'd ask about dietary triggers, I told to ignore the research I'd found on how much diet can help manage the pain for endometriosis. Then, I was discharged from my appointments by mistake by the NHS and Covid hit so it became a seven month wait to get a phone call appointment with my gynae. Eventually, I was referred to a new gynaecologist. In those seven months, I took it upon myself to try natural remedies and dietary cuts to help manage the pain, an I finally saw positive changes and started to live life again slowly.
When I finally received a call from my new gynae, I was pressured into having the laparoscopy as I hoped to start a family the next year. I was told it needed to be done and was put on a six month waiting list, but I wasn't allowed a pre assessment appointment for my questions and they didn't have a bowel surgeon booked in for the day, which I didn't feel comfortable about. I cancelled my surgery the week before finally getting help from my new gynae. The new gynae agreed with my cancellation as I could have ended up having 2-3 surgeries back to back: one for my endo, one for my bowels and possibly one for my reproductive organs. She also mentioned to me that my previous gynae had written that I was 'infertile' in my notes, which was wrong as no tests were done. I felt like everything was all over the place and I was getting mixed messages. I'd learnt more about the condition through research and the endo community online so I chose to take it back into my own hands.
After hundreds of scans and tests, all the while fighting to be referred to an expert, it took six and half years to finally get a phone call from an endo specialist in September 2022. He was shocked at all the hurdles I had to go through to get to him, but he was happy I took my treatment into my own hands. I'd started acupuncture and my pain had disappeared. He mentioned my scans showed very deep endometriosis on my bowels and right pelvic area, and some of my organs had fused together to my cervix (which was discovered in a 2019 scan, but never disclosed to me, and would have changed my decision to go ahead with surgery). I also found out about a cyst on my right ovary, which my acupuncturist had mentioned to me on my first session. The endo specialist was very positive and pleased for me to continue on this route. He told me to go back to him if needed in the future, should I struggle to conceive."
“I felt relieved and emotional as I finally had a name for what was happening to me. I finally felt like it wasn't all in my head. At the same time, I was disheartened and felt misled. When I was told I may not be able to fall pregnant, it took me a while to grieve the thought of maybe never being able to carry my own baby. I was also worried about having to live with this condition for the rest of my life and how I would survive it. I hadn't thought it would be something I would never get better from. It was like waking up sick one day and never being well again. At the time you have no hope as you're so lost along the journey of fighting for help."
“Since 2022 I have taken the illness into my own hands again and have taken the natural healing route. This time I combined my own natural home remedies and lifestyle changes with seeing a private experienced acupuncturist trained in Japanese herbal medicine. It's a slower process, however it truly focuses on internal healing, through gut health, to remove all the toxins from inside and re-boost the organs that have been affected. Amazingly, I have my life back and feel like me again after six and half years. I'm feeling more positive than ever and managing the illness very well. Internally, I feel so good. Acupuncture has literally saved me. I'm so glad I chose the natural healing route as there is no cure, even after surgery, but at least this way all my hormones are balanced and my organs are now functioning again. My pain and symptoms have all disappeared and I'm now an expert with managing all the changes.”
Temi Labinjo, late 30s, Sheffield
“Right from when I was a teenager, I have always had menstrual pains which got worse in my twenties. After a few years, I noticed that the pains were getting worse, so I decided to visit a doctor. The pains got worse from my teenage years up until my early twenties with symptoms of heavy bleeding, clotting and severe pains. While in my early twenties, I started experiencing heaviness on the right side of my tummy and after undergoing an ultrasound I was told I had ovarian cysts which grew from about 3cm to over 11cm. By 2014, I had to undergo an open laparotomy but was never told that I had endometriosis.”
"After several misdiagnoses, I came to the UK in 2015 and a laparoscopy was conducted which confirmed a diagnosis of severe stage 4 endometriosis. Over the last ten years, endometriosis has affected me terribly. I was diagnosed officially in 2016 but have been having the symptoms since 2009. Within the last five years, I have undergone five major surgeries. The pain got so severe that the painkillers were not working anymore. I had to leave a job some years back because of severe pain. The manager told me that because my condition 'is not cancer’ the organisation would not be able to provide any support. I had to resign for the sake of my sanity.
It also impacted negatively on my fertility as I struggled to get pregnant. Being a Nigerian woman, there are a lot of cultural perceptions and expectations about having children. When this does not happen soon after marriage you are seen negatively. As a couple, we had to hide our decisions due to stigma and stereotypes from people around us. I also had feelings of guilt and disappointment as a woman for not being able to do what other women do naturally due to the condition.
It was a very isolating experience due to the low level of awareness, especially among black and minority women like me. I felt like I was the only black woman battling with the condition. Some women might say every woman experiences menstrual cramps, so what’s so special about yours? I couldn’t share my experience, except with my husband, but sometimes you can’t understand until you have experienced it yourself."
“Even though I felt bad, I also felt validated. In the African culture, we usually tend to spiritualise everything. When you are sick or infertile there is this perception that you are possessed or have a bad omen. However, after my diagnosis, I felt validated that I was sick and not possessed by evil spirits or whatever. My major concern was the inability to conceive after several fertility treatments due to the cultural stereotypes and stigma in our culture and society.”
"At the moment I am on hormone injections that put my system into clinical menopause. I cannot afford to be on my period as the symptoms are so bad. At the moment I am thriving with the help of the hormonal injections.
I am passionate about creating awareness among black and minority ethnic women like me who are going through similar issues because endometriosis can be a very isolating and traumatising experience for someone to go through alone. This is even worse when you have no idea of what’s going on with your body. Having a network of support helps improve the well-being of women, enables them to share their experiences and support each other, and find ways that can work or relieve their conditions. Endometriosis is a complex disease being that what works for one person may not necessarily work for another and there is currently no cure for the condition. All I have to do is hope that my condition continues to improve."
Anya Meyerowitz, 33, London
“I was diagnosed with endometriosis four years after my symptoms first began at university. By this point, I was struggling with intense abdominal and back pain that often prevented me from getting out of bed around the time of my period. It often brought me to tears. I also had swollen legs that made walking painful, a constant, low-level feeling of nausea, and I struggled to go to the loo whenever my endometriosis flared up, which made me constantly uncomfortable. Up until my second year of university, I’d barely noticed my periods, only ever having to wear light pads and experiencing little to no pain each month.”
“It was first suggested to me that I might have endometriosis when I went for acupuncture to try and help the pain. I’d never heard of it before, but was advised it would be useful to go and see my doctor. I found the first appointment, with a male doctor, pretty humiliating and felt my symptoms were belittled (“do you drink a lot at university?”, “do you normally have a low pain threshold?”), so I didn’t go back to the doctors about it for a good few years. When I did, the process was much smoother, and after several appointments and a colposcopy, I was diagnosed with endometriosis and prescribed medication.”
“My reaction was one of relief. At university I could afford to take time off in bed when pain flared up, but now as a working adult, taking four or five days off each month was no longer feasible and had caused me issues at work, as well as heightened anxiety and stress. My main worry was that I was told it could impact my fertility later on (though I’m happy to say that I am now six months pregnant). At the time, the doctor advised that if I did struggle with getting pregnant or my symptoms continued to get worse, I could opt for keyhole surgery to remove some of the cysts around my ovaries in a bid to reduce symptoms and increase my chances of falling pregnant. I began taking mefanamic acid and found that, although it by no means relieved me of all pain, it allowed me respite, made it easier to sleep and certainly helped take the edge off the abdominal and lower body discomfort. I also bought a mini rechargeable hot water bottle so that it was easy to carry around and use constantly wherever I was.”
“I wish the process hadn’t taken so long and that there had been more resources and research out there to help me manage symptoms, rather than it so greatly impacting my life. Eight years on though, I have managed to build a life – and a support network – that makes managing endometriosis much easier. Would I wish it upon anyone? No, and I’m desperately hoping that my symptoms are greatly reduced post-partum (which my doctor informed me does often happen) but, if they’re not, I’m mainly pleased that there is greater awareness now than there used to be, rather than my workplace or friends just shrugging it off as ‘bad period pains’.”
If you think you might have endometriosis, seek help from your GP and for more resources, check out endometriosis-uk.org.
For more from GLAMOUR's Beauty Editor, Elle Turner, follow her on Instagram @elleturneruk
