Endometriosis – the monstrous shadow

Endometriosis is unpredictable and capricious…a destroyer of careers, families and relationships, and it is worth more money and research effort – not only for what we would learn about the disease itself, but for the light that would be shed on infertility, immunology, and the connection between illness and psychological states,” says endometriosis sufferer Hilary Mantel.

Endometriosis is the UK’s second most common gynaecological disease, but have you ever heard of it? I’m a confirmed case with stage 4 “endo” (that’s bad by the way, almost off the scale), but before doctors probed into me during a surgical laparoscopy three years ago I had no idea it existed.

A modest estimate suggests 1 in 10 British women have endo; according to charity Endometriosis UK this is almost as many as women with diabetes but little public health debate is focused on it. It’s a disease that costs the British economy an estimated £8.2bn a year. There are 176 million sufferers worldwide; women of all ages living a kind of shadowy half-life, struggling to study, hold down jobs, raise children and keep up with social obligations.

At the extreme end of the symptom scale, women suffer such severe pelvic pain they pass out or haemorrhage so much blood they end up in hospital. Some spend their ovulation days bloated, fainting and vomiting. Many endure painful sex and spend days in agony afterwards. Endo can have devastating psychosocial effects: depression, isolation, sexual problems, marriage breakdown and suicidal thoughts. Some 30-50% of infertile women have it.

Endo is a story of concealment. There is an urge for sufferers to share every nuance of their symptom history but also an awareness that non-sufferers can be reluctant or too squeamish to listen. It’s hard describing the times you need to stay near a loo as blood soaks through pad after pad, or, as one woman told me, “when you’re passing clots the size of small satsumas”. Tricky to share the delights of menstrual diarrhoea or mood swings in extremis. It’s a Jekyll and Hyde existence; normal PMT doesn’t touch the sides.

Even trickier is admitting to painful sex (dyspareunia), in an increasingly sexualised society that posits the female body at centre stage. Despite highly contentious research that women who have Endo are more “attractive” try telling that to anyone who has the classic “endo belly”, where inflammatory bloating leaves you looking you’re six months pregnant.

Fact no 1: normal period pain (dysmenorrhoea) isn’t meant to hurt that much. Endometriosis UK advises that if you have bad pelvic pain, irregular or heavy periods, lower back pain, bloating, problems with your bowel or bladder, fatigue or pain during sex, you need to be referred to a specialist clinician by your GP.

What is endometriosis?

Endometriosis occurs when tissue similar to the endometrium (the womb lining) is found elsewhere, mainly in the pelvic cavity, on the ovaries, fallopian tubes, uterus, bladder and bowel. In some rare cases, it’s found in the lung, brain and even the nose.

This foreign cell tissue (fed by an excess of oestrogen) forms lesions and during the month, just like the womb lining it responds to hormone stimulation, builds up and bleeds. But the tissue has no way to escape, leading to blood-filled cysts, inflammation, nerve pain and more clusters of scar tissue or adhesions that can behave like glue, sticking and twisting organs together. Pain occurs throughout the month, not just during ovulation or menstruation.

Endo is slow to diagnose (the average is seven and a half to 10 years, for some women it’s much longer) as it mimics other diseases like IBS (irritable bowel syndrome), appendicitis and PCOS (polycystic ovary syndrome). The only sure way to diagnose is through a laparoscopy, an operation where a camera is pushed through the navel into the pelvis – but there is still only a small number of highly skilled clinicians.

Sometimes referred to as a “disease of theories”, endo has no known cure. You can find a summary of the various genetic, biological and environmental theories here.

Endo has been found in unborn foetuses, eight-year-old girls, women in their 70s and, rarely, even in a few men. Strangely, the severity of the disease does not necessarily correlate with pain. So a woman with stage 1 endo can suffer much more badly than a women with stage 4.

Various hormone treatments can suppress some symptoms but surgery to cut out or laser diseased tissue is often the preferred route. In some cases, parts or whole reproductive organs are removed to try and reduce the spread of disease (with mixed results). Complete hysterectomy is not necessarily a magic wand, as endo seeds and grows in deep tissue outside the uterus, which surgery can’t always reach. Pain can follow a women even into her post-menopausal years.

What strikes you when you scroll through social network Health Unlocked and find the endo section is the sheer level of desperation: it reads like a howling gallery of pain. “Help me” is a frequent title; “I’m in so much pain”, or “I can’t go on”. The women’s medical and surgical stories reflect the complexities of the disease; diagnosis is just the start of the battle, trying to find the right clinician and the right treatment to alleviate symptoms is a further challenge.

A common thread seems to be resistance and a lack of empathy from some quarters of the medical profession. Not all, but many GPS simply do not seem to recognise the severity of their patients’ pain or their pleas for help. Women I interviewed were told as desperate teenagers to go home and get into bed with a hot water bottle. Relax, it’s just the cramps, right?

It’s like your body’s full of razor blades all attached to fishing wire and they all get pulled at the same time.

Ellie’s story

Ellie will never forget her first period. The 29-year-old from west London, says: “I woke up one morning feeling funny, made it to the bathroom and collapsed. I thought my spleen had ruptured, that my insides were falling out. I imagine it’s like when a woman’s water breaks, when she’s giving birth. I thought I was dying. I remember saying goodbye to my mum.”

Ellie’s mum Sheila drove her to hospital, where she stayed for nine hours. She had lost so much blood doctors told her she had severe anaemia.

She says: “The hospital didn’t believe I was in pain. None of the doctors mentioned it could be to do with my periods until my mum explained that I’d started. They told me to go home, use a hot water bottle, have a bath and try to relax.”

Ellie explains what it was like to black out from period pain at such a young age. “When you’re 12 and it’s the first time, it’s terrifying. It comes in like a black shadow from the side of your eyes, you lose your vision and then your hearing goes. You get these white spots in your eyes, you can’t breath. You’re in this void and it’s really scary.”

Ellie bled on and off for two years after her first period in six-week or two-week cycles. For most of her teens and early 20s, life became an excruciating cycle of pain and isolation at her home in rural Guildford. Often missing school and marooned at home in case she had an episode, she grew increasingly despairing. When venturing out, she’d have to crouch down on the street in pain, frequently passing out in shops or in public spaces, relying on strangers to help.

She recalls: “I collapsed in a public toilet once and the paramedics who picked me up thought I was on drugs.”

The disease robbed Ellie of her teenage years. “I didn’t bring it up with friends for years because I was ashamed of it. No one my own age had it so it was very isolating. I was a very private person and didn’t let anyone see me in pain. It was like being like a vampire, I’d have to go and hide, lock myself away and draw the curtains.”

Doctor after doctor told Ellie it was “normal”. “I went to countless GPs, all male, all older in their 50s or 60s. They told me I was too young for endo, it was “psychological”, told me to be braver; one even said I was doing it for attention. My notes said I should be referred for psychological assessment, that I had hypochondria, that I was hysterical.”

Ellie’s fear of being labelled stopped her getting the help she needed. At 16, after conducting her own research into endo she was finally diagnosed with stage 4 of the disease and PCOS but the news from NHS doctors was bleak: “They said I had two options, have a baby or a hysterectomy. It was devastating.”

She saved up for private treatment and found a pioneering surgeon, Dr Renata Hutt at the Royal Surrey County hospital, who for the first time made her feel validated. “I was a broken person when I walked into her surgery. I’d lost my teenage years, had no friends, no boyfriend, hadn’t lived. When she confirmed I had endo and she could help me I burst into tears. I’d been scared to say the word, but I wanted to hug her.”

Ellie, who graduated with a first from Cambridge University, now works in the science communication unit at Imperial College, London. She calls herself an “endo warrior”, saying that women with the disease often “achieve more than others”. To prove her point, during a GCSE Latin exam she hallucinated while on strong medication (“I remember a cat dressed as Sherlock Holmes on the ceiling”) and wrote her second-year university exams from a hospital bed.

The disease is in her bowel, bladder and lungs; her surgeon told her she has one of the most aggressive cases she’d seen. She’s endured 15 operations, not without complication. Two-thirds of her bladder was removed in 2010 and she was left incontinent for six months the following year. After each operation she refers to the “magic window” after surgical pain subsides, three to five months when it feels great. “When I’m ok, it’s like meeting the real me.”

To cope with the pain, she’d been prescribed drugs since her teens, including morphine for 10 years, which she only takes when she feels like she’s “going to die”.

She says: “I’ve taken every drug and hormone imaginable, most of my 20s were spent not even knowing who I was or whether I could make it from my bed to the bathroom.”

At times, Ellie admits she’s felt suicidal; she has a padlock on her medicine cupboard which she locks after taking the required medication “…because there have been times I’ve wanted to take more”.

She tries to explain: “When it’s midnight and it starts, you know you’re facing eight hours of contraction-like pain, it’s the 17th time that month, you’re exhausted – you’re in a very dark place. I’m sure there are women who committed suicide because of it. If I didn’t have my mum, I don’t think I’d be here.”

Ellie has had some sympathetic and caring boyfriends, but is currently single. Her surgeon has told her she has only a 5% chance of pregnancy. She has stopped looking on Facebook as she says friends are constantly putting up posts about impending marriages and their first babies. People keep asking when she’s going to “find a man?”

For the moment her focus is to raise the profile of the disease. “I used to suffer in silence out of some misguided pride/shame. Now I shout to the rooftops to young people about endo so that no young girl has to feel as isolated like I was.”

My daughter had a party and I couldn’t take her. She said: “You ruin everything, you’re always sick.” I told her I wasn’t doing it on purpose. She said: “Well, you don’t look like anything’s wrong with you.” That’s the heart of it – it’s a disease you can’t see.

Valentina’s story

Former fashion PR Valentina, 42, from Chelsea says she’s lost half her life to endometriosis. It took 20 years for a formal diagnosis after doctors initially dismissed her pleas for help during her teens and 20s, diagnosing her with everything from kidney stones to IBS and ME.

She says: “From the minute I started my periods there was always something wrong. You go to your mum at 13/14 and she tells you that’s the way it is and don’t question it, but my periods were much worse than my friends’. My dad was a doctor, but even he just told me not to question anything. When I was 18 I bled so much my mum thought I’d miscarried.

“I remember watching Embarrassing Bodies years later and the doctor was holding up the normal amount of blood a woman loses every month, about half a litre – well that’s what I lose in one morning.”

Valentina’s case highlights the lack in early diagnostic tools for the disease. Despite asking her GP if she might have endo at 18, she was told no, the ultrasound only confirmed the presence of polycystic ovaries. “We now know an ultrasound can’t detect endo,” she says.

Regularly fainting from the amount of blood loss meant Valentina developed extreme anaemia. She would bleed for 10 days a month, developing infections, colds and fatigue. “I was always shivering, even in Italy in 40 degree heat I’d be wearing a cardigan.”

She married Richard in 1998 but couldn’t get pregnant for two years. After visiting University College Hospital she still wasn’t given a laparoscopy, but was told by one clinician she was probably “anxious” and “sub-fertile”. Finally, she tried the NaPRO fertility approach, took natural progesterone and luckily managed to have two daughters, who are now 12 and 10 years old. Juggling childcare, work and endo wasn’t an option so she was forced to leave a job that she enjoyed.

Valentina says one of the most difficult aspects of the disease is the pressure it puts on a relationship, especially when it comes to sex. “If you’re bleeding for 10 days a month then in lots of pain other times, sex takes a back seat. It became increasingly painful, especially in the last few years, and I wasn’t telling Richard. I can only describe it as stabbing pain like someone was shoving a knife up me. Once we had sex and the next day I was in hospital on morphine. Certain positions you just have to avoid.”

She admits: “It’s worn us down and taken its toll, affecting holidays, friendships, he’s always having to apologise for me when I can’t go out.”

After countless investigations and “dismissive” consultants, but still with no laparoscopy, Valentina was finally diagnosed with stage 4 endometriosis and adenomyosis (endo in the uterine wall) in 2011. She says: “Sadly, by that time, the disease was widespread and deeply rooted. I’m one of the unlucky ones who missed out on an early diagnosis.”

Last year, Valentina had a full hysterectomy and went into what she described as “full blown menopause, no sleep, night sweats, feeling very old”, so she was advised to take HRT. Despite some unlucky complications from the operation (which are now resolving), for nine months she’s been mainly clear of pain. But she admits: “I’m not naïve enough to think it won’t return.”

It’s not me, it’s the devil inside me.

Sinead’s story

Sinead, 41, from County Offaly, Ireland, describes herself as an “endo survivor”. The mum of three, a trained fertility practitioner, suffered excruciating pain and mood swings for years. She said she used to think she was just “a cranky bitch – a stereotypical redhead”.

She admits: “There are days when you feel like a devil, that you could fight with your own toenails because you feel so shitty. Endo’s a sneaky little disease in that you can look quite normal but you’re very sick on the inside. It cloaks itself in other illnesses. I got really good at hiding the pain, but at home I’d be on my hands and knees in agony.”

Sinead remembers her first bout of pain vividly, two weeks before her first period in 1984. “We were all sitting around watching a movie on a Saturday night and I just vomited violently and screamed. The pain was right up in my vagina. My dad had to carry me into the hospital. They thought I had appendicitis.”

Since that time Sinead was “back and forth to the GP”, all the while struggling to live with the disease. She describes her pain as “like flash lightning”.

She says: “For 20 years no one made a link between my periods and the pain. No one mentioned the word endometriosis to me. The message from our culture seems to be ‘it’s your period, just shut up and deal with it’.”

In 2005 she pushed for a gynaecological consultation and was admitted to the Coombe hospital in Dublin. “The surgeon was very flippant and let a trainee do the laparoscopy. Afterwards he said: ‘There’s nothing wrong with you, you need a psychological assessment.’ I thought my sister was going to jump over the bed and kill him.”

Finally, in 2008, she was referred to Dr Phil Boyle who helped Sinead get pregnant with her first child as well as diagnosing her with stage 4 endo with bowel involvement. The impact on her private life has been immense. “People get tired of you not turning up for stuff. I couldn’t make my best friend’s 40th birthday and after that the friendship broke down. My own family members don’t understand what it’s like.”

Her three young children have learnt to recognise it when she’s too unwell to function. “The kids know it as the days I lie on the sofa and ‘we watch TV’ and I’m not a TV watcher. They can’t have play dates and we listen to music. My six-year-old is very tuned in to me; if I get a bad dart of pain, she’ll squeeze my hand and comfort me.”

Since stopping breastfeeding her youngest child seven months ago (which helps with pain), she’s now considering a hysterectomy. “I’m crippled with pain again. It’s not a choice to live with. I have endo polyps, nodules like pebbles on different parts of my body. No one can tell me what they are. My uterus is creating more risk, why would you leave it in?”’

“I want to be able to enjoy my children, to get up in the morning and not to have to think to myself, what size will I be today?

Periods: the “icky” factor and research

Menstruation was in the news in January when tennis ace Heather Watson admitted to being off her game at the American Open due to a bad period. Periods are still a taboo subject, so it’s perhaps not surprising that diseases associated with them are an even deeper taboo.

Karen Houppert’s blog, The Curse: Confronting the Last Unmentionable Taboo: Menstruation, challenges the idea of “menstrual etiquette”, the furtiveness and concealment many societies have around periods as well as the womb’s historical association with hysteria.

With reference to endo she says: “When breast cancer awareness campaigns geared up, research dollars followed. It would be terrific to see menstruation talked about casually, so that women had a sense of whether their own periods were within the realm of normal. And it would be terrific to see those illnesses researched and treated with the same dollars and dedication that goes to Viagra.”

Matthew Rosser, a clinical researcher on endo at the University of Manchester, is calling for more openness around menstruation, which he believes would raise the disease’s profile and thus funding potential.

Out of all the grant money awarded for women’s health from the Medical Research Council in 2013/14, just over £1m was dedicated to researching endometriosis – out of a total of almost £8m.

Despite more papers being written on endo in the last five years than the previous 40, Rosser says: “When I start to talk about menstruation and periods, it cuts a conversation dead. For me it’s as mundane as talking about the weather but there’s definitely a level of squeamishness. We need to break down the barrier about this disease. A lot of men feel they can’t talk about periods but this is part of your partner’s life, many women’s lives. If you want to help them – start talking.”

The women I spoke to felt the disease still has an embarrassingly low profile and is undervalued.

Ellie says: “Last year was a good year for diabetes, lots of PhD grants available, adverts, a huge visible presence. Shouldn’t we be doing this for endo?”

Sinead advises: “A questionnaire highlighting risk factors for endo would help with quicker diagnosis. If doctors aren’t trained properly, they won’t find it and they won’t see it.”

Valentina is more strident: “The mainstream media treat endo as a very ‘unsexy’ disease. But if it affected men, I think enough money for research would be found.”

Resources

Accredited Endo clinicians

endometriosis.org

Endopaedia

Center for Endometriosis Care

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