Getting your period hurts. They teach us this from an early age. Every 28 days we curl up like snakes because the period hurts. We can’t get out of bed for days because our period has to hurt. We miss class because it’s ‘our time of the month’. We throw up, we get a fever and we feel exhausted because… that’s just the way it is. And they also teach us that we must put up with the pain without complaint. Because it’s normal. And because the only way to deal with it is to take a load of painkillers that maybe you don’t want to take.
What they don’t teach us is that sometimes period pain is hiding something else. An invisible, polyhedral, multi-systemic disease of unknown origin that is prevalent, incapacitating, highly complex and capable of having a brutal impact on the lives of one in ten women.
A disease that, in Spain for example, affects more people than hepatitis C and HIV: an estimated two million Spanish women currently suffer from it. And there is no treatment, no research and no specialised units.
Because endometriosis is a hidden disease – hidden behind period pain, taboos and society’s lack of comprehension.
That’s why EndoMarch was founded. Their mission is to bring awareness to endometriosis all over the world through a variety of initiatives such as marches and symposiums. In an effort to find out more about this commonplace – yet still largely invisible – disease, we spoke to gynecologists, doctors and patient groups.
I. Endo… what?
‘Endometriosis? OK… What is it?’ That’s how Lucia (34) reacted when she was diagnosed eight years ago. ‘I didn’t even know such a thing existed,’ she recalls. ‘I’d never heard of it.’ Something similar happened to Esperanza (39), who was diagnosed last year and has already been through surgery. ‘I’d been feeling unwell for a while. But they teach us that it’s normal for our periods to hurt. I only knew something was wrong when it started to hurt even when I wasn’t menstruating. I felt strange pains and I was tired all the time.’
María Luisa, a retired 63-year-old, found out that she had this disease just a few years ago, after suffering with symptoms half her life. She also brings up the problem of a lack of awareness. A lack of awareness that’s not just personal, but institutional. ‘I had nine miscarriages in five years. And nobody could tell me why. Nobody knew anything and nobody diagnosed me with endometriosis. I figured it out myself after reading, looking for information and attending a talk. It became clear that all my symptoms match the disease,’ she explains.
How can it be that a disease affecting one in ten women remains such a mystery?
For Miriam al Adibi, a gynecologist and endometriosis expert, the key issue is that ‘everything to do with feminine health has a trace of taboo and ignorance, combined with medical paternalism. ‘If someone goes to the doctor saying that their period is hurting them, they’re given the (contraceptive) pill and that’s that,’ she explains.
In Spain, endometriosis affects more people than hepatitis C and HIV – estimates say two million women suffer from it. But there’s no research being done and no specialised units for treatment of the disease
On top of these factors is the complexity of the disease itself. This chronic estrogen-dependent disease is highly prevalent (between 10% and 15% of women have it). And yet its origin, causes and mechanism are currently unknown.
Broadly speaking, endometriosis is characterised by the growth of endometrial tissue where it’s not supposed to be. ‘The endometrium is the innermost layer of the uterus, the one that flakes off and is shed during menstruation,’ Miriam explains. When a woman has endometriosis, this tissue grows outside the uterus, above or below the ovaries, the intestines, the bladder… As the tissue has no way out, it ends up forming inflammatory reactions, tumors and endometrial cysts or endometriomata.’
It’s a multi-systemic disease which affects various organs and systems of the body, not only the reproductive system
There are a number of theories regarding the causes. ‘The most widely-accepted is that it’s retrograde menstruation. In other words, menstruation that flows back through the fallopian tubes instead of out of the body,’ explains gynecologist al Adibi. ‘However, this isn’t sufficient to explain endometriosis because 90% of women have this type of period. There must also be some kind of immunological problem that prevents the endometrial cells from being reabsorbed, resulting in them remaining in these tissues and periodically becoming inflamed.’
Other theories used to explain endometriosis in places far from the uterus – such as the lungs, brain, intestines or rectum – ‘point to a transformation of pluripotent cells into endometrial cells,’ says Adibi.
Yes, you read that correctly: lungs, brain and intestines. Because one of the misunderstandings about this disease is that it’s a gynecological disease, when it’s not.
‘Endometriosis is a multi-systemic disease that affects various organs and bodily systems, not just the reproductive system. It has a genetically based component, it affects immunity and has many health consequences,’ warns Irene Aterido, sexologist, patient and founder of EndoMadrid.
II. Taboos, false myths and disinformation: a constant in the lives of sufferers
‘When I was 18 I started to get painful period pains,’ says Lucía. ‘I went to the gynecologist and his diagnosis was that I’d started ovulating. He said that I hadn’t been ovulating when I’d menstruated before. The solution he gave was to take Ibuprofen or birth control pills.’ ‘My gynecologist didn’t take my symptoms very seriously,’ Esperanza explains. ‘I started to get my period when I was nine. I’d get a fever, I’d be sick and I wouldn’t be able to get out of bed. But people told me it was normal. They told me it was natural for my period to hurt,’ says Alejandra.
The experiences of Lucia, Esperanza and Alejandra reveal some of the great myths of this disease: the supposed inevitability of period pain, the supposed benefit of birth-control pills as a treatment, and the psychosomatic component of endometriosis. These are the myths that EndoMarch wants to do away with. Starting with the pain.
‘There’s no reason for a healthy woman to feel unwell during her period,’ Irene explains. As far as she’s concerned, the main symptom of the disease is pain, not infertility. And not just pain during menstruation. ‘On top of period pain, patients also suffer other types of pain such as neuropathic, inflammatory and visceral…’ explains the founder of EndoMadrid.
EndoMarch’s annual international campaign aims to end some of the myths surrounding endometriosis – including the supposed normality of period pain and the psychosomatic component of the disease
Despite the fact that one in five women with endometriosis have an asymptomatic form of the disease, the majority of those affected suffer through periods of great pain which impact negatively on all aspects of their lives.
‘Pain has an intense emotional and isolating component. Couples break up because of pain,’ says Irene. ‘It’s also necessary to talk about the pain of sexual relations. If a woman feels pain when she experiences deep penetration, then this could be a sign. But it’s not spoken about because sex is a social taboo, like menstruation,’ the activist says. ‘Pain during defecation is another common symptom. As women, we’re educated to feel that our bodies are shameful and that we shouldn’t talk about natural physiological functions. If we did talk about them, we’d be able to diagnose far more people.’
These are two of the challenges: quicker diagnosis and ensuring that the pain of endometriosis is no longer dismissed as being purely psychological. Because one thing the women who have taken part in this report agree on above all else is there exists a lack of understanding from doctors, and from society in general, regarding their complaints.
‘Women have been reviled in medicine for a long time. And stereotypes painting us as being hysterical or complaining are still very common,’ Miriam al Adibi explains. Irene agrees: ‘Nobody ever says that lupus is psychosomatic, but they continue to send women with endometriosis to the psychiatrist.’
‘The classic treatment for endometriosis is still the same old story: painkillers, hormone therapy and surgery. We need more research’
To the psychiatrist or to birth-control pills. Contraceptive pills continue to be one of the ‘easy’ options that doctors use to treat endometriosis. This is a mistake, because these drugs have not been designed specifically to treat this disease.
‘Endometriosis continues to be treated as it was 30 years ago,’ says Irene. ‘The classic treatment for endometriosis is still the same old story: painkillers, hormone therapy and surgery,’ adds al Adibi.
Other myths that surround this illness have to do with fertility, pregnancy and the menopause. Patient associations want to draw attention to the fact that endometriosis is a chronic disease which currently has no cure. And that neither pregnancy nor the menopause can cure it.
‘I’m living proof that the two greatest myths about endometriosis are just that: myths,’ says Alejandra, who has suffered from the illness for many years. Alejandra became pregnant naturally two years ago – contradicting the belief that the condition causes infertility – and she continues to be affected by the disease. ‘People say pregnancy cures endometriosis. My son is two and I’m worse than ever.’
Endometriosis is a chronic disease which currently has no cure. Neither pregnancy nor the menopause can cure it
The menopause can help, but it’s far from being a cure. ‘Estrogen levels do get lower but they don’t disappear altogether. The menopause can cause the symptoms to become less severe, but the neuropathic pain (alteration of nerve conduction) doesn’t go away,’ says al Adibi.
‘In general, there’s a lot of misinformation about endometriosis. Even among healthcare professionals,’ says Irene Aterido of EndoMadrid. ‘We like to say that just as one in ten women are sufferers, there are also one in ten gynecologists who know about the illness.’
III. The importance of environmental factors
What you’ve read so far should help you to get an idea of the myriad internal problems of endometriosis. But there’s one important factor left to mention that goes beyond women’s bodies: the environment.
‘There’s a clear link between endocrine disruptors and endometriosis,’ says Dr Pilar Muñoz-Calero, expert in Environmental Medicine, President of the Alborada Foundation, and founder of the ¡Que no te alteren las hormonas! project.
‘There’s a clear link between endocrine disruptors and endometriosis’
‘Endocrine disruptors are substances outside the body capable of interfering with the normal functioning of the hormonal system. Most endocrine disruptors are estrogenic. In other words, they behave as if they were estrogens inside our body. They are, therefore, exogenous estrogens.
Estrogens induce the growth of endometriosis implants, so women with a high concentration of estrogen, both endogenous and exogenous, are prone to endometriosis and other diseases,’ says Muñoz Calero.
‘Many of these endocrine disruptors are bioaccumulable, they are magnified, they remain in the fat and they are persistent because they are not easily removed from the body. So, in many cases it’s the combination of various types of estrogenic disrupting substances that causes the disease.’
IV. A call for change
EndoMarch aims to shed light and raise awareness on the issue, as well as demand changes and improvements in the diagnosis and treatment of endometriosis. Changes and improvements that concern all women as potential sufferers of the illness.
‘We ask for healthcare with resources proportional to the importance, severity and chronicity of the disease,’ explains Irene Aterido on behalf of EndoMadrid. ‘There aren’t any resources. Neither in primary, nor specialised care. There aren’t any multidisciplinary state medical units where endometriosis sufferers can see their illness approached from different pathways. There’re no new or specific drugs for treating endometriosis. There’s no continuous training for professionals.’
Associations of women affected are also demanding a greater effort to be made in detecting the disease early on. Currently, it takes an average of nine years to diagnose.
‘Early diagnosis is an ethical obligation. We’ve encountered gynecologists who’ve said there’s little point in reaching an early diagnosis if no treatment exists. What about ethics? What about the autonomy of women?’ asks EndoMadrid.
‘Doctors have no qualms about telling some teenager with type 1 diabetes, ‘Listen, son, you’re diabetic. From now on you’ll have to take better care of yourself.’ It’s like not telling a cancer victim about what he’s suffering from because it’s incurable. Women with endometriosis also have a right to know and decide,’ says Irene.
Endometriosis is a chronic and tumoral disease that in some cases may require surgery and organ loss. Women need to know.
Priority inclusion in access to fertility treatments; a healthcare plan; for endometriosis to be considered a disabling disease and a public health issue and reported as such: these are some of the things that sufferers clamour for. But these women demand one thing above all others: more research.
We need to carry out an epidemiological study of the disease. How many of us are there? How do we get infected? How does it affect us? How does it impact on the quality of life of our families?
‘It’s not acceptable that there is still no serological test to find out if you have endometriosis or not,’ Esperanza complains. ‘We need to carry out an epidemiological study of the disease. How many of us are there? How do we get infected? How does it affect us? How does it impact on the quality of life of our families?’ says EndoMadrid. ‘We know how many people with hepatitis C there are in Spain, but we don’t know the first thing about this disease that affects one in ten women. It’s 2017. This discrepancy can only be explained as a gender issue,’ opines Irene Aterido.
‘More studies have been carried out on erectile dysfunction than on premenstrual syndrome, which is one of the symptoms of endometriosis and is often taken as an exaggeration. If this was an illness that affected 10% of men, I can assure you that we wouldn’t just have the cure by now: we’d have a vaccine. If a man suffered from sore testicles for five days a month during 30 years we’d have a vaccine for that,’ says Irene dryly.
And so, Lucía, María Luisa, Irene, Esperanza and Alejandra will continue to fight for endometriosis to no longer be considered ‘another women’s disease’. It might be too late for them, but we can still make certain that today’s young girls are not victims of an invisible disease that affects more than 176 million women worldwide.