Why haven’t we found a cure for endometriosis?

You might have heard about endometriosis more recently thanks to Demi from Love is Blind UK, who talks about how the condition has impacted her relationships, and also Tonya in the latest series of Waterloo Road, whose symptoms are dismissed by doctors and her mum, likely linked to how young she is, which is an experience shared by many young people with menstrual conditions.

Endometriosis is a chronic, painful condition where tissue similar to the lining inside the uterus (known as the endometrium) grows outside the uterus. It’s not that the uterus is turning inside out, it’s that the cells usually found in the inside lining also begin to develop outside of the uterus.

These misplaced endometrial-like cells typically grow on the ovaries, which is where eggs are created, the fallopian tubes, where the eggs travel down to the uterus, and the outer surface of the uterus. But they can also spread to other parts of the body, such as the bowel or bladder. These cells act like they do in the uterus, shedding each month with the menstrual cycle, but there’s nowhere for them to go, so they end up causing inflammation in the body.

This inflammation can cause significant pain. This is pain that can cause you to pass out, vomit, have constipation or diarrhoea, have muscle spasms, and pain radiating down your back and legs.

Other common symptoms of endometriosis include painful intercourse, heavy periods, feelings of fatigue, and digestive problems. And there are also fertility issues related to endometriosis, which means that those with the condition may have trouble conceiving a baby, and the condition can also increase the risk of miscarriage.

There’s lots of information about endometriosis symptoms in theory, but what does a real endometriosis journey look like? Here’s Wellness Coach Livvy Franks talking about her personal struggle with endometriosis.

Livvy’s journey

“My journey started age 9. I woke up with excruciating pain and, quite graphically, very heavy blood falling down my leg. I was absolutely terrified. I had no idea what was going on. It was PE day at school, and I was just handed some large knickers pads and sent to school. So it was quite a traumatic introduction to something that is normal to womanhood. This continued for quite a few months. Every month I would have headaches and excruciating pain. I would be at school, and my mum, who at the time was in and out of hospital with depression (which we later discover is linked to this story), finally took me to the doctors just before my 10th birthday. I was asked no questions. I just expressed that I was in pain, that this was a period, and I was just straight away put on the pill.

“I took this pill every single day, religiously, I didn’t ask questions, and I had regular periods. They came every 21 days. I had minimal pain, but I had other symptoms starting to arise. So between the ages of 10 and 22/23, I stayed on the pill. I was very minimally monitored, so I had a blood pressure test maybe a couple of times when I had an infection and I was sent for doctors antibiotics, but it was never because of the pill. Between those ages, I had unexplainable symptoms. I developed random spells of severe epilepsy, chronic fatigue, glandular issues, which all put me in hospital, back pain, respiratory issues and depression which lead to an eating disorder and I very frequently suffered from UTIs, which would put me in bed for weeks at a time, and I would go on and off with antibiotics.

“There was a particular incident that stood out around the age of 20/21, when all of a sudden the symptoms would come on really suddenly. And one morning I woke up and I felt really, really ill. This was just before a period, and this was when I would suffer the most. So I would spend the week before my period really suffering, then I’d have a week of excruciating pain, and then I’d spend the rest of the time recovering and getting ready for the next cycle. So it just it was a continuous cycle, recovering and going through it. And I woke up, and my whole throat was inflamed, I had severe pain. I kept going in and out of consciousness. I had blackouts, and I developed such a high pain threshold because of the reoccurring incidents from such a young age that I could go through with quite a lot. I could persevere. But on this occasion, I went to the doctors. I said I feel really, really poorly, and she was very worried and sent me to hospital. I just kept deteriorating, and I straight away from the emergency ward. I was there in hospital for two weeks. I had numerous tests. They couldn’t find anything, so they put it down to suspected glandular issues and immune system symptoms, and when I managed to take about three mouthfuls of warmed up bran flakes, I was allowed to go home, and I spent three months in and out of bed. I had to learn to walk. I developed a stutter. I was getting inner ear infections, and these random symptoms just kept hitting me.

Connecting symptoms and the pill

“I couldn’t get anywhere, and I just felt like I was continuously asking questions. I was fit at the time, I was really healthy and eating healthy. Yes, I was going out partying and being a normal young person, but I couldn’t pinpoint what was causing this. So at age 23, I remember my sister and I were in the living room together, and she told me, “I’m pregnant”. We were overjoyed, and she started to explain to me that for the past year she had come off the pill, and this sparked my interest. I asked, “Why did you come off it?”, “Did you experience anything?”, and she explained to me that she was experiencing headaches, that you have to come off it to be able to conceive. And this was just an overload of information, and I had to sit and digest this. And suddenly things started to connect to my mind. And I started to wonder if this pill could either be contributing or covering something up.

“So I decided, at age 23, to go cold-turkey. I thought, maybe my symptoms will regulate. But that’s not what happened. I immediately was hit with the most aggressive form of the symptoms that I already had. Life became unbearable. I couldn’t talk, I couldn’t see, I would completely black out. It made my epilepsy so incredibly bad, I had chronic fatigue, my eating disorder became worse, my mental health just deteriorated. I exhausted the NHS system completely. Every month, I’d ring them for an ambulance. I just didn’t know what else to do. My mum and dad didn’t know what was going on. Nobody could give me an answer or help. I honestly questioned my sanity, because I honestly believed that this is something that everybody goes through, and I’m just not strong enough to go through it.

A misdiagnosis

“I went back and forth to the doctors. I was then misdiagnosed with cancer. At the time, nine or 10, years ago, endometriosis wasn’t well known. Now, you see it in the media quite regularly. And our local doctor said, “I believe that you’ve got cancer. I didn’t even think to question it. I was in a state of shock. And I guess at the time, it made sense to me, because the only thing I was familiar with. I was told I would never have children. I wouldn’t live into my late 30s. I would have to give up driving, and I was in a driving job at the time that was funding me being able to sustain some sort of life with treatments. I was struggling to talk and was having to go to clinics to re-learn these things. My fits were so bad that, I worked in sales at the time, and I was going in and out of appointments having fits in people’s homes.

“I thought, this is going to catch up with me. This isn’t sustainable, and I don’t want to live like this. I became suicidal. I started to question my sanity and life, and I remember quite vividly taking myself to my mum and dad’s for the weekend, and I went down to this spot of beach, and I prayed. I begged. I asked my higher self. I quite abruptly shouted at the ocean, “if you want me to live, you’ve got to give me a sign”. A clear sign, a reason, something that sparks my curiosity, that gives me the momentum to keep going. Because this doesn’t make sense, and this can’t be how I live forever. I really surrendered in that moment.

Going down the private healthcare route

“I laugh at it now, because I look back and think it needed to happen. Because after that, the signs came, and I’m here now. So a few days after that, my dad called me and said, “I’ve booked your private doctor’s appointment. I really think we need to go the private route”. I couldn’t afford it at the time. The private doctor’s appointment was £400. It was the same doctor I would have waited for on the NHS for two years. I was extremely grateful for this, and I went to the appointment. I took my journal, and everything I could think of. I had a half hour consultation, and he lined up some tests. He gathered all the tests I’d had before, and he said to me, you have stage four endometriosis. You have severe PMS. And although I was very confused and wasn’t exactly sure what that was (I didn’t exactly get an explanation), I had my first answer, my first sign. And I felt, weirdly, a bit excited, because I thought I’ve got something here. I can work with this, and I can try and discover what I can do about it, because I can’t be the only woman, and I wasn’t. I kept meeting people who were talking about the same experiences, the same pains and stories, and I kept getting more and more curious and hungry.

A new journey

“The next sign was that my partner at the time had a family dinner, and his cousin came very randomly. She, last minute, booked a flight down from Scotland, and she brought with her three books. She said to me, “I had a conversation and I’ve heard that you’re having all the symptoms, and it’s exactly the same as me. And I can tell you that it’s actually endometriosis and part of Epstein-Barr Virus (EBV).” She handed me these books, Medical Medium by Anthony Williams. I experienced such joy and happiness at this point, because they were answers, and I didn’t really care what those answers were. Because before, I would turn to the highest dose of Ibuprofen, morphine or whatever I can find. I was taking it to numb the pain, to work, to be able to support myself to live. So this was a different approach. This was this was really healing, rather than masking.

“This was the beginning of journey which I don’t always look back on and enjoy, but I can sit here and confidently say that I’m glad I’ve been on it. My path would take a holistic turn. I was introduced to a new world of healing, linking my traumas to my symptoms, meaning that I didn’t just discover foods that would heal, but I would also have an incredibly eye opening process of releasing traumas and physical ailments in the body and help my nervous system. It was a mind, body, soul approach. It unlocked my ability to live and enable me to reconnect with the version of me that hadn’t been able to live a normal life before the age of nine, so it was like rediscovering myself, and re-living part of my live that had been overwhelmed by this.”

Follow @liv_with_balance on Instagram to follow her journey and find out more about her work as a Wellness Coach.

How was endometriosis discovered?

The progression in understanding endometriosis has been slow, with major strides occurring more recently. Through the 20th century, medical professionals began associating its symptoms – such as chronic pelvic pain and infertility – with the presence of endometrial-like tissue outside the uterus. Advances in diagnostic tools, such as laparoscopy which emerged in the 1960s, have since improved the ability to identify and treat endometriosis more effectively.

Despite this, the condition remains under-researched and often takes years to diagnose, which means more awareness and funding is required.

What causes endometriosis?

The exact cause of endometriosis is still not fully understood, but several theories exist.

Who else is at risk of endometriosis?

Males, females and intersex people can all get endometriosis. In males, it is rare, with only around 20 documented cases, and it’s possible that some of these men may have been exposed to oestrogen as a results of taking certain medications, as endometriosis is predominantly an oestrogen-dependent condition.

Those going through perimenopause may experience more severe symptoms as their periods become more irregular or heavier, but the symptoms will usually stop upon reaching menopause, when your periods stop. In 2 to 5% of cases, endometriosis symptoms continue after menopause and this is usually linked to hormone placement therapy (HRT).

The onset of endometriosis can occur at any age. It’s common to appear during puberty, and there are even cases of occurrence in prepubescent girls. But it is more commonly diagnosed in women in their 30s and 40s, and this could be due to the fact that it can take around 10 years for women to receive an accurate diagnosis.

How many people have endometriosis?

Endometriosis is considered to be a common condition, possibly affecting approximately 10% of women and those assigned female at birth (AFAB) of reproductive age worldwide. This equates to about 190 million women and AFAB people globally, making it one of the most prevalent gynaecological conditions. But we don’t know that for certain, because there are many cases that go unreported or undiagnosed. That’s due to several factors, such as a lack of awareness and education – a lot of people still don’t know about endometriosis and therefore can’t attribute their symptoms to it. Some people believe their pain to just be a heavy period and they might think it’s normal. Some doctors may not be fully educated on endometriosis and so don’t know to order further tests. Then, there’s the indisputable fact that symptoms of serious diseases are more likely to be dismissed if the patient is a woman. Here are a few studies to back that up:

In 2022, the Journal of the American Heart Association reported that women who visited emergency departments with chest pain waited 29% longer than men to be evaluated for possible heart attacks.

Another study in the Journal of Women’s Health showed that middle-aged women with chest pain and other symptoms of heart disease were twice as likely to be diagnosed with a mental illness compared with men who had the same symptoms.

There are also many reported cases of IUD insertion and removal where women have been refused pain relief, even though they are in excruciating pain.

A lot of this is connected with how women’s pain is perceived by others, rather than women overinflating their pain. A review article published in the journal, Pain Research and Management, shows that men in chronic pain tend to be regarded as “stoic” while women are more likely to be considered “emotional”, “hysterical” and accused of “fabricating the pain.” The article was called ‘Brave Men and Emotional Women’.

Going back to endometriosis itself, there’s also the fact that currently the only way to diagnose endometriosis is with a laparoscopy, which can be expensive. Privately, laparoscopies can start from £3,900, and it’s even more if followed by surgery to remove the endometriosis. It’s uncertain the costs line up exactly for the NHS, but it’s not a cheap procedure, so it’s unlikely that it will be the first investigation that a doctor orders.

How do you treat endometriosis?

There is currently no cure for endometriosis, so we asked Valentina Milanova, women’s health expert and founder of gynaecological health company Daye, about why no permanent cure exists and what treatments are currently available:

“Endometriosis remains without a permanent cure due to several factors. Historically, there have been significant gender research gaps and biases in understanding diseases that primarily affect women and AFAB individuals. This is partly because female participants were only allowed to take part in clinical trials in 1993. Which means that we’ve been left with decades of missed opportunities for research. Still to this day, it’s much harder for clinical trials to recruit female participants than male participants, because the infrastructures that we have in place to recruit clinical trial participants are geared towards men.

“Additionally, in the specific context of endometriosis, it presents diagnostic challenges. There’s currently an average of 8-12 years’ delay before a patient receives their diagnosis. This delay not only prevents the patient from receiving their diagnosis, but also means that they are less able to find the right treatments for them early on in their patient journey.

“Endometriosis is a very complex disease. It’s a condition that’s not yet fully understood, again going back to the gender research gap, which makes it challenging for us to develop a cure to address all of the different components and aspects of the disease.

“Another factor is that there has been a lack of progress in developing new medications for endometriosis. We haven’t had any new drugs being developed in the last 40 years. Granted, over the past three years, there’s been some movement in the drugs for endometriosis market, but we’ve been more focused on repurposing existing solutions such as hormonal contraception over developing a new and targeted treatment for endometriosis. And, obviously, the stagnation in treatment development has contributed to the absence of a permanent cure or a permanent solution for managing symptoms.”

Current treatments for endometriosis

“In terms of what treatments are currently available for endometriosis, they’re mostly focused on symptom management. Pain management is a big focus; most endometriosis patients experience not only menstrual pain, but also painful intercourse and, in some cases, painful urination. Traditional painkillers and hormonal contraception are the traditional and common approach, however, they don’t work for everyone.

“More recently, there have been more innovative solutions, like Daye’s cannabidiol tampons, which have shown promise in relieving pain for some endometriosis patients. In addition, lifestyle modifications like heat therapy, using tense machines, pelvic floor stretches, and acupuncture, have also been shown to alleviate discomfort and help patients manage their symptoms.

“Hormonal treatments, however, are still the main prescription for managing endometriosis symptoms. They’re obviously not suitable for those who want to conceive, and they do come with side effects. But some endometriosis patients do experience relief from their symptoms when using hormonal contraception to stop their periods.

“In some cases, depending on the severity of endometriosis, and the stage of the progression of the disease, surgical intervention may be recommended to remove endometriosis lesions. This is, however, not considered a cure, and the endometriosis lesions can come back after surgery.

“Some of the emerging therapies that are coming up when it comes to a pharmaceutical point of view include dichloroacetate, a potential non-hormonal and non-surgical treatment which has shown promise in reducing the size of endometriosis lesions and the frequency of new endometriosis lesions coming up. Another approach is FimmCyte, which is an antibody based therapy currently in development, and the way that it works is that it targets endometriosis cells for clearance by the immune system.

“It’s important to note that treatment effectiveness can really vary among individuals, and this is why a personalised and holistic approach to pain management in endometriosis is key. This is why, at Daye, we created the world’s first period and pelvic pain clinic which not only helps patients speed up the time to diagnosis for their endometriosis, but arms them with a wide array of tools which they can use to manage their endometriosis symptoms, whether that be painful menstruation, painful sex or overall chronic pain.”

Despite biases, a lack of trial participants, very little progress in drug development, and the complexity of the disease, many medical professionals recognise the need for better treatment for those presenting with endometriosis symptoms. In 2017, NICE, which is the UK’s National Institute for Health and Care Excellence, called for GPs to look out for the symptoms of endometriosis, with new guidelines saying that doctors should suspect endometriosis in women and teenage girls presenting with one or more symptoms in a list provided. That was seven years ago, and many people believe that the progress that has been made is too small, and is even smaller for those in the LGBTQ+ community, disadvantaged backgrounds, and people of colour.

Today, endometriosis remains an under-researched condition, and many patients experience a delayed diagnosis, sometimes waiting years before receiving proper treatment. However, increasing awareness and advancements in research are helping to improve the management of this condition, and hopefully, one day, find a cure.