As I slowly opened my eyes, blinking into a bright white light, I heard a soothing voice talking to me from above. I felt drawn to it, but a gentle hand on my arm made me suddenly very aware of being naked apart from my knickers under a rice paper-thin hospital gown. “The operation went smoothly,” said the voice, patting my elbow reassuringly. “I found endometriosis and adenomyosis, but we’ll speak when you’re properly awake.”
Adeno-what? But in that moment I didn’t care, because in a manner of speaking that voice was the messiah I had been waiting two decades for — a doctor who had not only listened to me but had finally answered my prayers with something tangible, something that wasn’t a “no” or “maybe” but an actual concrete diagnosis.
I don’t know exactly when my symptoms started. It might have been aged 15, when I leant against the school bus stop with cramps in my abdomen. Perhaps it was when I went interrailing at 18 and on going to the loo in a French hostel discovered that it hurt to pee.
Back home, I went to see my GP — the same GP who, when my teenage sister had asked for the pill, winked at her and said, “Have fun!” He diagnosed cystitis, dipping a strip of litmus paper into a little sample pot — a test still routinely used by doctors to see if a woman has a urine infection, but one that has been proven to give the wrong result in at least a fifth of cases. I was given the antibiotic trimethoprim and, when that gave me headaches, another called nitrofurantoin.
The abdominal pain didn’t go away. No, let me rephrase that: it did go away for a few weeks and occasionally months at a time. A third drug, cephalexin, appeared to knock it on the head without side-effects. So it became my crutch. Several times a year I’d go to the GP, my urine would be dipped and I would leave clutching a prescription. Three pills a day for seven days. Until next time. Have fun!
Gradually, the pain began to get worse and the gaps between so-called cystitis infections became shorter. There was a day, in my second year at university, when I couldn’t move from my boyfriend’s bed. I lay there, legs pulled up to my chest, as I dialled the number of a taxi firm to take me to the on-campus surgery — and we never called taxis, this being the pre-Uber era, so you knew it was serious when someone did.
“You’re just unlucky,” the doctor told me. Whichever GP I saw, wherever I was, male or female, I would be asked the same questions. Do you drink alcohol? Are you sexually active? Is your underwear too tight? If I heard another woman being relentlessly quizzed like that today, I’d probably call it victim blaming.
‘My initial relief gave way to anger that most of my adult life has been spent in agony’
I started to become anxious about going away, even for the weekend, in case an “attack” would leave me doubled over in pain. I would phone my GP, tearfully begging for a precautionary prescription. No, cranberry juice didn’t help. Yes, my underwear was cotton.
I began to recognise the early warning signs: dry throat, shivers, nausea. On a GP’s advice, I began to pop an antibiotic every time I felt a “twinge” and always after sex. Looking back, it seems incredible that no one thought there might be something else going on.
But when you’re told, over and over, that it’s just bad luck and that some women suffer more than others, you believe it. You put your trust in the professionals. You don’t advocate for yourself because you don’t understand that there’s anything that needs fighting for.
I’m sure this sounds like a cry for sympathy or a menstrual misery memoir. But I want to tell this story, even though it fills me with embarrassment and shame, because endometriosis affects one in ten women of reproductive age in the UK, yet takes an average of eight years to be diagnosed due to misconceptions around female pain that often see it dismissed as dysmenorrhea (period cramps) and the lack of a simple test to identify it. You probably know someone who’s suffering right now. I know that I’m constantly on the alert when my friends talk about pain, like a gynaecological hobbyist.
In both endometriosis and adenomyosis, the endometrium (the uterus lining that women shed every month) grows outside the uterus, where it shouldn’t. With endometriosis, it commonly spreads to the ovaries and fallopian tubes. With adenomyosis — the “evil little sister” of endometriosis — it grows inside the muscle wall of the uterus itself, making it swollen. This extra tissue can’t be shed during the menstrual cycle, so builds up, leading to inflammation, scarring, cysts and the reproductive organs “sticking” together.
There are many symptoms but the main ones cross over: intense period pains, pelvic pain, heavy bleeding, pain during sex, fatigue, headaches and, in severe cases, infertility. And if you have one disease, you’ve a 50 per cent chance of having the other. Not fun.
Given that this is a female epidemic, desperately little is known about either condition thanks to a woeful lack of money directed towards research. For context, endometriosis is as common as diabetes but the proportion of funding that goes towards treating diabetes is around 20 times higher. As the NHS website helpfully puts it, “The cause of endometriosis is unknown.”
Woman’s Hour presenter Emma Barnett, an endometriosis sufferer
Hopefully you have at least heard of it thanks to high-profile sufferers such as Woman’s Hour presenter Emma Barnett, model/presenter Alexa Chung and the late Hilary Mantel, as well as a 2020 parliamentary cross-party review that interviewed 10,000 women with endometriosis and found that 58 per cent had seen their GP more than 10 times before diagnosis. As for adenomyosis? I’ve got it and I can’t even pronounce it. Estimates suggest that anywhere between 20 and 60 per cent of women might suffer — that’s how little it’s understood.
There’s no cure either. Your options are: use a hormonal contraceptive, such as the pill or a coil; get pregnant for temporary respite; have a hysterectomy. Imagine if there were a condition that affected one in ten men and they were being told that the only way to get rid of it was to have a large and important organ removed (no sniggering at the back). It just wouldn’t wash.
That could be about to change. This autumn a trial, paid for by the Scottish government, is starting for the use of the cancer drug dichloroacetate to help relieve endometriosis pain. If successful, it would be the first non-surgical, non-hormonal treatment for the condition in 40 years. The government has also included endometriosis in its Women’s Health Strategy, published last August, saying that the “knowledge gap” around it must be closed.
But I am furious at my own lack of knowledge too. Sitting at my laptop, I just stumbled across a page on the Endometriosis UK website that revealed that “endo” and “adeno” — as these diseases are nicknamed — can masquerade as IBS. Throughout my twenties I experienced digestive problems that would have me racing to the nearest loo. Doctors blamed the salmonella I’d had at the age of 22 and I just nodded and accepted what, in hindsight, is clearly code for “dunno”.
Then there were the headaches. And fainting. I’m piecing together this painful jigsaw puzzle as I type. For years I would pass out without warning. I’d wake up on the floor. I fainted on the Tube and bus, where commuters ignored me, presuming that I was drunk, as I crawled off and phoned my parents in distress. In the pub one Christmas Eve, I suddenly couldn’t see and grabbed the back of what I thought was my boyfriend’s jumper — my fingernails digging into his skin in my panic — only to find, coming to, that I’d accidentally mauled some bloke at the bar.
I went to A&E that time, lying on a ward on which the only other patient was a man in a Santa suit accompanied by, I kid you not, another man in a Santa suit who was holding his hand. The doctor that time told me that I’d “grow out of it”. No one asked about my periods. How I wish I could step back in time and hug that girl, then demand some answers on her behalf.
Instead, that girl got comfortable with being uncomfortable. I would talk about my “normal pain” when I described how I felt to my family, even though it often drove me to distraction and made me want to kick things.
I didn’t, because I was shattered. I put it down to my demanding job on a newspaper. I had no idea that women with endometriosis are twice as likely to have chronic fatigue.
“You’re always tired,” my husband, Tim, has said on a loop in the decade since we met. As though I just needed to go to bed earlier with a Horlicks — which, given the number of times I had started to wake up in pain during the night, I actually did.
By now it was more than ten years after I’d first visited a GP in pain and asked for help. Instead, come 2am I would be lying on the bedroom floor, stifling my sobs so as not to wake Tim and kneading my abdomen with my hands — grabbing handfuls of flesh as though I could somehow pull the pain out of my body.
I could usually roll over and open the door to my bedside cabinet and shovel paracetamol tablets into my mouth. I didn’t need water, so accustomed was I to swallowing pills. Fill your mouth with saliva, pop them in, try not to gag.
It was a desperately lonely time. Reading back my WhatsApp messages from that period reveals just how much of an impact it had on my life as I cancelled plans, letting friends down again and again. Or went along only to spend evenings grimacing and wishing I was at home. There were days off work when I knew that sitting at my desk would be impossible.
In fact, it was work that finally pushed me to see a specialist. I was the women’s editor of a newspaper when endometriosis started to creep into the headlines and those famous women began to share their stories of unexplained pain and misdiagnosis. After commissioning multiple articles on this little-known disease and thinking no more of it, in pain and at my desk one day, I suddenly realised that it all sounded familiar.
Novelist Hilary Mantel had endometriosis
I found a private consultant who put me on a roulette of very strong antibiotics, none of which made a difference. There was talk of a bladder infection, after which came more drugs. The goal never appeared to be to locate the root cause of my pain, only to manage it. When, emboldened by what I’d been reading at work, I asked, “Is it possible that I could have something like endometriosis?” he dismissed the idea out of hand.
I wasn’t, at least, given weapons-grade painkillers or antidepressants as so many women are. Though by that point, I’d have taken anything to make the pain stop.
And the truth is, I didn’t even have it that badly. Most of the time I was fine at work. I had a social life. I didn’t have to move back in with my parents, give up on my dreams or accept that I couldn’t exercise — all things I’ve heard from other women. Plus I had private healthcare, something many can’t afford and must wait to be seen, let alone diagnosed.
A few months before the pandemic, at my wits’ end, I decided to see a different specialist. There were more pills, yes, but in a targeted way that actually started to make a difference. My daily discomfort morphed into absolute agony — but agony that had a pattern. When, during a Zoom consultation during lockdown, he suggested that I see a gynaecologist who specialised in endometriosis, I cried tears of relief and frustration.
I also cried during my first appointment with my gynaecologist when she told me that what I was describing sounded like endo and prepared to scan me with an ultrasound wand, which can pick up severe cases of the disease — something no doctor had ever thought to suggest. The only other diagnostic method is a laparoscopy, keyhole surgery that looks inside the abdomen and uterus to identify endometriosis and, should anything be found, laser it off there and then. It’s basically a case of “while you’re down there”.
My ultrasound didn’t pick anything up, but nonetheless all the evidence pointed one way, my gynaecologist said. She recommended I have the op. But I hesitated. Outwardly, I declared that it wasn’t the right time to take two weeks off work. In truth, I had been conditioned into believing that it wasn’t endometriosis and I didn’t want another “nothing to see here” from a doctor. So I put it off for six months, only nervously going ahead a year ago — and coming round from the anaesthetic to hear that bittersweet diagnosis after two decades of waiting: endometriosis that had been lasered, adenomyosis about which nothing could be done, fertility that looks fine but we can never say for certain.
And that’s where stories like mine often end, with validation after years of being told there’s nothing wrong. A few days after my operation, I wrote an article saying that, “Sometimes knowing you weren’t a ‘hysterical woman’ can be healing in itself.” And it can, for a time. But we need to talk about what happens next, when the glow of “I told you so” wears off.
My initial relief gave way to anger that most of my adult life has been spent in pain, some of which I could have been spared.
What have I lost? Years in which I never felt fully able to relax. And I must be immune to most antibiotics by now. Then there’s the stuff that feels too raw even to touch: my acceptance of my own suffering, how disassociated I feel from my own body when I look in the mirror, not fighting harder to be heard, the future. Because up to half of women who have surgery will see a recurrence of endometriosis in five years, which means you’re trapped in a twilight zone between relief at having been treated and the terror that your body will let you down again (when really it’s the doctors who did). Many will discover, too late, that their fertility has been affected — when, with earlier diagnosis, they might have frozen their eggs.
I might never know how many of my health issues were caused by endometriosis and her evil little sister, and I will probably never truly understand whether I had urinary tract infections, a bladder infection, IBS or whether it was these conditions all along. But what I do understand and am coming to accept is that none of this was my fault and that my underwear was never too tight.
BFF? The Truth About Female Friendship by Claire Cohen is published on April 20 by Transworld at £10.99
Styling Hannah Rogers. Hair and make-up Alice Theobald at Arlington Artists using Trish McEvoy and Drybar. Main picture: Claire Cohen wears dress, Self-Portrait (matchesfashion.com). Shoes, Manolo Blahnik. Picture 2: dress, Victoria Beckham (fenwick.co.uk)
What are the long term effects of endometriosis? ›
Impact. Endometriosis has significant social, public health and economic implications. It can decrease quality of life due to severe pain, fatigue, depression, anxiety and infertility. Some individuals with endometriosis experience debilitating pain that prevents them from going to work or school.Why is endometriosis hard to diagnose? ›
Endometriosis is particularly difficult to diagnose because it can have many different clinical presentations. In addition, some women may not even experience pain (asymptomatic). It's somewhat of a paradox with endometriosis that those with the largest amount of endometrial implants have the least amount of pain.How do you explain endometriosis pain? ›
The primary symptom of endometriosis is pelvic pain, often associated with menstrual periods. Although many experience cramping during their menstrual periods, those with endometriosis typically describe menstrual pain that's far worse than usual. Pain also may increase over time.Can endometriosis cause fainting? ›
Endometrial tissue present in the rectum or urinary tract can cause an obstruction. Endometrial tissues may also get lodged in the lungs and blood may be coughed up, especially during periods. Nausea, vomiting, dizziness and fainting.What is Endo belly? ›
Endo belly is the colloquial term for abdominal distension caused by endometriosis. Unlike the short-term bloating that sometimes accompanies your period, endo belly is much more severe, triggering physical, mental, and emotional symptoms.What's the worst that could happen with endometriosis? ›
Untreated endometriosis can cause significant pain, bloating, excess menstrual bleeding, and digestive distress. Over time, it can also affect a person's fertility. When endometriosis tissue grows outside the uterus, it can affect other organs — especially the ovaries and reproductive structures.What happens if severe endometriosis is left untreated? ›
While they are unlikely to be fatal, they can have a negative impact on your quality of life. Untreated endometriosis can lead to a variety of complications, including: Pain that lasts for a long time. Endometriosis can cause pain in the areas it affects as well as in other parts of the body.Why do doctors ignore endometriosis? ›
That's partly because there's a lack of awareness in the medical community about how the disease manifests and partly because doctors are especially poor at identifying painful gastrointestinal symptoms as potential endometriosis, she said.What disease mimics endometriosis? ›
- Bladder Infection. ...
- Pelvic Inflammatory Disease (PID) ...
- Irritable Bowel Syndrome (IBS) ...
- Sciatica. ...
- Uterine Fibroids. ...
- Polycystic Ovary Syndrome (PCOS) ...
- Interstitial Cystitis (IC) ...
- Pelvic Floor Dysfunction.
Ovarian endometriosis occurs in 2–10% of women of reproductive age and 50% of patients treated for infertility . Ovarian endometriosis is one of the most common localizations of this condition.
How painful is endometriosis on a scale? ›
1-3: Mild pain. 4-6: Moderate pain. 7-10: Severe pain, with 10 being the worst pain.Is endometriosis the worst pain? ›
The type of symptoms and severity of pain depends on where the endometrial-like tissue growths are located. Nonetheless, endometriosis is the top cause of painful sex and pelvic pain.What is the most common complication of endometriosis? ›
ovarian cysts – fluid-filled cysts in the ovaries that can sometimes become very large and painful.What is stage 4 endo belly? ›
Stage IV: This is also known as severe endometriosis. With stage IV, deep implants and dense adhesions are present. There may be superficial endometriosis and filmy adhesions, but the disease is more widespread than in Stage III. Any score greater than 40 indicates severe endometriosis.Why is my endo belly so big? ›
Endo belly occurs when you have endometriosis and your tummy becomes bloated. It is also called endometriosis bloating. Medications and changes to your diet can help ease your symptoms, as well as treating the underlying condition, endometriosis.How does Endo belly look? ›
Endo belly is a severely bloated abdomen common in people with endometriosis. Some people say their swelling gets so bad, they look like they're pregnant.What organs can endometriosis affect? ›
Nearby reproductive organs are often affected. Endometrial tissue can grow on or around your ovaries and your fallopian tubes. Tissue growth can spread to other organs in your pelvis, even if they're not related to reproduction. Some women have endometrial tissue growth around their bowels, rectum, and bladder.At what age does endometriosis get worse? ›
Endometriosis can affect women across all ethnic backgrounds and at any age, but it most commonly affects women during their reproductive years between the ages of 25 and 35.What are the silent symptoms of endometriosis? ›
Other Symptoms: Pain and menstrual irregularities are some of the most common symptoms. Women with endometriosis may also suffer diarrhea, constipation, nausea, abdominal fullness, cramping, and unexplained infertility.How do you treat Endo belly? ›
Certain surgeries may alleviate or prevent endometriosis and endo belly pain. These include laparoscopy and hysterectomy. Laparoscopy is minimally invasive, and a surgeon will carry it out to remove the endometriosis patches. Hysterectomy is a procedure wherein a surgeon removes the uterus.
What is dysmenorrhea? ›
What is dysmenorrhea? Pain associated with menstruation is called dysmenorrhea. More than half of women who menstruate have some pain for 1 to 2 days each month. Usually, the pain is mild. But for some women, the pain is so severe that it keeps them from doing their normal activities for several days a month.Can a 60 year old woman have endometriosis? ›
Extrapelvic endometriosis is a rare clinical condition in postmenopausal women. It affects a slightly older population due to the fact that it takes several years for pelvic endometriosis to metastasize outside the pelvis. Statistical data regarding menopausal patients are limited.Does endometriosis cause weight gain? ›
Pelvic pain is the most common symptom. But people with endometriosis report a range of other symptoms, including weight gain.Does untreated endometriosis get worse with age? ›
￼ Endometriosis occurs when uterine-like tissue grows in other places in the body. It's a progressive condition, which means untreated symptoms may worsen over time.What can an ER do for endometriosis? ›
The goal of the emergency physician is to provide pain relief and exclude life-threatening causes of pelvic/abdominal pain. Unstable patients require resuscitation and possibly urgent surgical consult. Medical management in the ED generally is restricted to pain control.Can you live with endometriosis without treatment? ›
Endometriosis doesn't always need treatment. Treatment of endometriosis is indicated to treat symptoms (including pain) or infertility, when your quality of life has suffered. If left untreated, sometimes endometriosis symptoms will improve, but most will stay the same.What are the signs of medical Gaslighting? ›
Signs of Medical Gaslighting
“It's all in your head.” “Your pain is manageable.” “You're just tense.” “You're too young to be feeling – ”
Although endometriosis is not commonly thought of as a disability, endometriosis symptoms can severely impact a person's life. If you can no longer work or earn a living because of your endometriosis, you may be eligible to receive Social Security Disability benefits.What autoimmune disease causes endometriosis? ›
The link between endometriosis and autoimmune conditions
These are: Systemic lupus erythematosus. Sjögren's syndrome. Rheumatoid arthritis.
An accurate blood test could lead to the diagnosis of endometriosis without the need for surgery, or it could reduce the need for diagnostic surgery to a group of women who were most likely to have endometriosis.
Does endometriosis show up on Pap smear? ›
A biopsy performed during laparoscopy is often used to confirm a diagnosis of endometriosis. Can a Pap smear detect endometriosis? No, a Pap smear cannot detect endometriosis. A Pap smear is used to diagnose cervical cancer and HPV.What is the first test for endometriosis? ›
An ultrasound through the abdomen can detect signs of larger endometrial implants and cysts. The bladder and other organs can also be examined. An ultrasound exam through the vagina is more appropriate for determining whether you have ovarian endometriosis.What is the classic pain in endometriosis? ›
Painful or even debilitating menstrual cramps, which may get worse over time. Pain during or after sex. Pain in the intestine or lower abdomen. Painful bowel movements or painful urination during menstrual periods.Do opioids help with endometriosis pain? ›
Endometriosis is associated with pain3,4 and substantial indirect costs (eg, lost work time and productivity). Up to 87% of women with chronic pelvic pain,8 defined as pain that persists for more than 6 months, have endometriosis. Over the past 20 years, chronic pain has increasingly been treated with opioid therapy.What deficiency causes endometriosis? ›
Vitamin D deficiency has been strongly linked to endometriosis. Research has shown that not only do low levels contribute to the development of the disease, but also its severity, and even the size of endometriomas, though this is now being debated.What lifestyle causes endometriosis? ›
Caffeine, alcohol, smoking and physical activity are known to alter sex steroid synthesis, which may affect hormone-dependent gynecologic disease risk, such as endometriosis; however, few studies have assessed lifestyle factors prior to endometriosis diagnosis.What are the red flags for endometriosis? ›
deep pain during or after sexual intercourse. period-related or cyclical gastrointestinal symptoms, in particular, painful bowel movements. period-related or cyclical urinary symptoms, in particular, blood in the urine or pain passing urine. infertility in association with 1 or more of the above.What is the most predictive symptom of endometriosis? ›
- Pelvic pain.
- Lower abdominal or back pain.
- Dyschezia (pain on defecation) often with cycles of diarrhea and constipation.
- Bloating, nausea, and vomiting.
- Inguinal pain.
- Pain on micturition and/or urinary frequency.
- Pain during exercise.
Interstitial cystitis/Painful bladder syndrome (IC/PBS)
The symptoms can be indistinguishable from endometriosis, including pain with a full bladder, pain during sexual intercourse and chronic pelvic pain – often more severe lower in the pelvis, just above the pubic bone.
Overview. One of the most common gynecological diseases, endometriosis often goes undetected for years because the abdominal pain associated with the condition is mistaken for menstrual cramps, or because there may be no symptoms.
What do the stages of endometriosis feel like? ›
The main symptom is pain in your pelvis, usually during your period. You might also feel pain during sex, bowel movements, and when you pee. Other symptoms include heavy periods, fatigue, diarrhea, constipation, bloating, and nausea. Most of the time, the stage and type of your condition doesn't affect your symptoms.What is stage 5 endometriosis? ›
Some groups may refer to category or stage 5 endometriosis when a patient has many dense endometrial adhesions on several organs and is at high risk of needing surgery or experiencing infertility. These categories can help your physician explain your condition and identify the best treatment.What is Stage 4 endometriosis like? ›
Stage 4: Severe
The most severe stage of endometriosis involves many deep implants on your pelvic lining and ovaries. There may also be lesions on your fallopian tubes and bowels. There can also be cysts on one or both of your ovaries.
Presentation and clinical course of endometriosis
Patients often present with symptoms such as intermenstrual bleeding, painful periods (dysmenorrhea), painful intercourse (dyspareunia), painful defecation (dyschezia) and painful urination (dysuria) . Pelvic pain may present before menstruation begins.
Untreated endometriosis can cause significant pain, bloating, excess menstrual bleeding, and digestive distress. Over time, it can also affect a person's fertility. When endometriosis tissue grows outside the uterus, it can affect other organs — especially the ovaries and reproductive structures.Why don t doctors know more about endometriosis? ›
Endometriosis is a complex condition. The symptoms vary so much between women that doctors used to think it was more than one condition. Therefore, it can be hard for researchers to know where to begin.What is the sister disease to endometriosis? ›
Adenomyosis, often referred to as the 'evil sister' of endometriosis, is a uterine condition in which endometrial cells from the inner lining of the uterus (the endometrium) migrate from that lining into the muscle wall of the uterus (the myometrium).What is worse than endometriosis? ›
With adenomyosis, the inside of your womb gets thicker and bigger, which doesn't usually happen with endometriosis. The enlarged uterus may: Put pressure on your bladder and rectum.