“The only answer is to steal its food bowl/And cut out the unborn children.”

– ‘Endometriosis’, Frieda Hughes

 

Endometriosis is a gynaecological condition causing chronic pelvic pain.  Endometrial tissue that should stay in the uterus implants itself at various points in the abdominal cavity. These implants grow and thicken along with the lining of the uterus in accordance with the woman’s menstrual cycle. When a period starts, with no way of leaving the body, they break down and bleed too, causing pain, inflammation, nausea, fatigue, severe bloating, back/leg pain and pain during sex.  Endometriosis can cause problems with fertility and increased chance of miscarriage.

One of the first words you are likely to hear when seeking treatment after a diagnosis is ‘hysterectomy’.  If you choose not to have children, then you are likely to hear this word more often than most other women. It will be suggested to you at almost every turn, by medical professionals certainly but also by friends, family, well-meaning strangers on message boards and the media. In whatever capacity it is suggested, the subtext is the same – what’s the big deal when you’re not planning to have children? My womb, it would seem, is more disposable than that of a woman who chooses to use hers as expected.

Hysterectomy may reduce the symptoms but does not guarantee their disappearance.  Nonetheless, the hysterectomy discussion begins and ends with the belief that the removal of my womb and its associated ephemera will make the pain of endometriosis stop. And, apparently, that is all that should matter to me. I have never, in all the times that hysterectomy has been suggested to me by doctors, also had discussed with me the enormous physical and psychological impact of such an invasive operation. Hysterectomy is life-changing surgery.  The sudden onset of menopause is a body trauma. Yet many medical professionals consider it acceptable to trade one kind of suffering for another. Perhaps they imagine that immediate menopause is something that a woman who is not planning on having children should be prepared to undergo to get relief from a disease that mainstream medicine has, until very recently, expressed little interest in researching, let alone curing.

The prevailing perception of the tragedy of the woman with endometriosis is that she cannot have children, rather than the fact that she is a human being living in chronic pain. The dialogue around treatment for endometriosis (and indeed most gynae conditions) consistently leans towards a goal of restoring fertility, rather than acknowledging that living with chronic pain is an intolerable condition in its own right. How do we fix this in terms of fertility, so that we can return you to the world in a way that makes sense to us? The societal status quo views a healthy woman as a fertile woman, rather than a woman simply able to live her life without suffering.

This is not to dismiss or devalue the very real and valid suffering of a woman who wants to be a mother potentially being unable to do that because of this disease. I am simply tired of the discussions around my treatment being dominated by the quick fix of hysterectomy, rather than an acknowledgement that my womb holds sway over a lot more in my body than just child-bearing.

As a society we still don’t quite know what to do with a woman who doesn’t want to reproduce. During my ten-year quest to get a diagnosis, a family doctor, whom I had told repeatedly over the years that I didn’t want to have children, typed up my latest ultrasound referral with a cheerful, ‘when you have a baby – and I know you will – things will be much better for you’. This made me furious. Pregnancy (like hysterectomy) is often heralded by doctors as a potential cure for endometriosis, and, yes, symptoms can reduce after a person has a child in some cases. But there is no guarantee of this.

Reproduction does not only dominate the discussion around endometriosis. The starting point for a woman’s medical treatment is always the same – are you pregnant or planning to have children? In the last five years, I have had the exceptional good fortune to have myriad health problems where medication was prescribed that, I was told, would not have been given to me if I wanted to have children. One consultant prescribed a course of drugs with a casual, ‘we can be less cautious, as you aren’t planning to have children’. As someone who doesn’t want to have children, I also don’t want less cautious treatment. I want the impact of every drug on my body and mind to be considered, whether it fucks with my womb or not. I want to make the choice if the impact of those drugs is acceptable to me as a human being, not as a potential mother.

Culture defines the menstrual cycle as a source of shame whilst at the same time revering motherhood, seemingly forgetting that you don’t get the latter without the former. It often seems that the only time we want to talk openly about menstruation is when we are talking about pregnancy or the possible lack of it. Motherhood is revered whilst the bleeding body is reviled, and ‘my periods are cripplingly painful’ does not garner nearly as much sympathy or understanding as ‘I might not be able to have a baby’. My status as a woman in pain is lower than that of a possible mother in pain. Pain is something that it is admirable for a woman to endure in the quest for motherhood, rather than having to endure it to live her life.

Bizarrely, whilst we don’t want to know about the problems that women and girls may have with their periods, we do want to crowd around a pregnant celebrity waiting for her cervix to crack open. We want to get as close to the pregnant woman as possible, almost crawl inside the woman who has a baby. Public entitlement to the body of The Mother seeks to depersonalise her, reduce her to function, in much the way the treatment narrative for gynaecological conditions suggests a woman who isn’t using her womb should be less antsy about having it removed.

Hysterectomy as a default cure-all solution to endometriosis is not good enough. Reproduction is a function of the female body, not the purpose. I don’t want to be a mother. I do want to live without pain. That should be enough.

By ‘E’/@vexslain

Paintings by Ellie Kammer, ‘Endo Champion’, Instagram @elliekammer