Feature: Do I suffer because women’s voices aren’t being heard?

I recently went to the premiere of a documentary made by the Norwegian Endometriosis patient organisation. The film is called Blodig Alvor, which was translated into The Painful Truth, though Bloody Serious might be a more direct and accurate translation. Arriving at the event, my husband and I joked about how pretty all the women there were, how one could see how those much-mocked Italian doctors got the idea – they decided to research the attractiveness of endometriosis patients compared to other women, by ranking them according to the doctors’ subjective opinion of their allure. Their conclusion: this patient group is indeed more beautiful than the average female population.

Novelist Karen Havelin.

The Endo organisation had brought their mascot Endolores to the event, a big stuffed fabric uterus with an angry and unhappy face, mounted on a pole. I wanted to take a funny photo with it for Instagram, to begin to bridge the difference between the curated life there and the issues I actually write about, like chronic pain. There was a crowd though, and we didn’t get a chance until after the film, by which point it all felt a lot less funny.

The film featured interviews with specialists and many girls and women who in the typical fashion for endometriosis patients had gone years and years without getting a diagnosis or any treatment. Several of them had needed extensive and repeated surgeries to try to fix those years of untreated endometriosis, which can lead to cysts, terribly painful adhesions and scarring. One girl told of almost passing out from pain when using the toilet, before finding out she needed to have several parts of her colon removed.

At one point the documentary follows a girl in her early twenties who has waited months to have surgery and has been in severe pain for a long time. After the surgery she had four wonderful painless days. Her face softens and changes entirely when talking about those four days.

“…Then, it was back on.”

The surgery hasn’t led to the longed for reduction in her pain levels and now there isn’t any other solution on the horizon except wait a bit and hope for the best. She tries to sum it up in a tidy and positive way that clearly echoes what she has been told over and over:

“…so now I have to try to live with this. I just have to grit my teeth and relax more… not take pain killers for every little ache.”

Right. Months of uninterrupted pain somehow become “every little ache.” And all you have to do is figure out how to grit your teeth and relax at the same time, and there’ll be no problem.

There was something about seeing other women and girls matter of factly sum up painful years so similar to the ones I’ve had that really brought the message home for me. I felt nauseated, and quietly sobbed through much of the film. Your own experience of pain can in your own mind be rounded down, reasoned with, made into something you are somehow responsible for. However, when you see so many other women tell the same story it becomes horrific. It becomes clear why “medical gaslighting” is such a hideously useful term. It is not a question of dry statistics, but of grotesque amounts of female suffering.

Endometriosis and adenomyosis affect as many as one in ten women. Many are told by doctors that periods are supposed to be painful, that it’s normal, or even that they should just have a baby and that will solve it (by the way, pregnancy is in no way guaranteed to improve endometriosis). Serious period pain, missing school despite painkillers, starting on the Pill because of period pain – all these are strong indications that a patient might have endometriosis. It takes a skilled doctor to recognise the signs via ultrasound and the only definitive diagnosis is made by surgery. Women often struggle to make their way to a specialist and to have that initial surgery – to even get started on the path to finding a treatment that works for them. For some, the pain persists even after surgery to remove their ovaries and uterus, even after treatment with very serious medications.

The documentary also showed these women working, riding horses, climbing, having good partners and taking charge of their lives. But during the discussion afterwards, when one of the specialists referred to this patient group as being “demanding,” all I could think was “God damn it all to hell.”

When I was 29, I had surgery, after years of severe abdominal pain which had been repeatedly explained as irritable bowel syndrome and psychosomatic stomach aches. Via ultrasound, the doctors had seen two small ovarian cysts, but the problem turned out to be endometriosis so severe that I had a condition called frozen pelvis. My entire pelvis and abdomen was hard, from scar tissue, adhesions and endometrial tissue from the illness, which had been allowed to develop freely for years. The organs were fused together. Since, I’ve had three more surgeries and tried all kinds of treatments for chronic pain, as well as a lot of different medications for endometriosis, some of which have very strong side effects.

When I needed to find documentation to apply for disability benefits, I found the word endometriosis mentioned in my GP’s records, six years before the diagnosis, when a young female doctor was filling in for the summer. That was years after I had started having symptoms.

In recent years, the term medical gaslighting has become more widely known. The term gaslighting “comes from the 1938 stage play Gas Light, in which a husband attempts to drive his wife crazy by dimming the lights (which were powered by gas) in their home, and then he denies that the light changed when his wife points it out. It is an extremely effective form of emotional abuse that causes a victim to question their own feelings, instincts, and sanity, which gives the abusive partner a lot of power.”

Every time I see a doctor, I’m relieved if it goes well, though I keep getting better at advocating for myself and have a better vocabulary with which to do so.

I’ve been talking a lot about pain and endometriosis because my debut novel recently came out, and my main character, like me, has endometriosis. Living with pain that doesn’t go away is like the figure skating moves I use as a recurring motif in the book. The strange poetry of the descriptions of jumps and pirouettes seem like instructions for something that simply can’t be done, like levitating. It clearly cannot be done – sometimes staying alive even for another minute in pain is way too much – yet we find ourselves somehow doing it.

I can accept my own suffering to some degree, but – if it is just an illness that hasn’t been researched enough yet because women’s voices aren’t being heard…

If it’s the equivalent to Dr Semmelweis’ colleagues in the 1840s who didn’t want their authority challenged, didn’t want to be told what to do – badly enough to keep refusing to wash their hands between touching corpses and women in the process of giving birth, even when his research numbers showed that mortality in the clinic went down 90 per cent when handwashing was introduced… yet another case of women dying, women’s bodies made unbearable, uninhabitable because someone just didn’t want to listen - well! Then what are we going to do?

Please Read This Leaflet Carefully by Karen Havelin is out now, published by Dead Ink Books at £11.99