When I Say ‘Endometriosis’ you Hear ‘Infertile’, and I’m Tired of it.

TW: This article contains discussions of reproductive health and fertility.

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Seven months ago my consultant made the decision that it was in my best interests to be induced into chemical menopause. In the two years since my initial diagnosis via surgery, endometriosis had returned and spread to my bladder and was showing no signs of slowing down.

With the NHS waiting list for laparoscopy and cystoscopy looking dire, and my inability to finance surgery for excision privately, it seemed there was a ticking time bomb strapped to my organs – and medical menopause was my only feasible option. 

The concept of menopause at twenty years old is bizarre, though I trusted my consultant’s judgement. The injection I am taking, Prostap, has a concoction of side effects, alongside the existing unpleasant symptoms of menopause, but it feels the endurance of these side effects is the lesser of two evils.

I live with chronic pain and bladder issues – amongst other things – and frankly, I am willing to try anything to ease my pain. 

The recommended length of time to be on prostap is six months, though I have already surpassed this suggested time period – and will remain on it for the foreseeable future.

When talking to others about my endometriosis and the chemical menopause for the first time, the response has almost always been the same;

 “So… What are you going to do about children?”

Contrary to popular belief, the ‘poor yous’ and sympathetic pats on the shoulder are not the understanding gestures many believe them to be.

Though menopause is in my best interest, people seem to be more concerned about the potential implications it could have on my partner and I’s unborn – and frankly unplanned – children, rather than its potential benefits for me.

Am I nothing more than a walking, talking baby machine? 

For a presently fictional child to be held as more valuable and worthy of concern than the management of my pain is an incredibly harmful concept.

First of all, I feel it should go without saying that my thoughts and feelings about starting a family are not a topic that invites discussion. Medical conditions are not a free pass to pry into the private lives of others.

Secondly, endometriosis impacts my life on a daily basis. It is not just a conversation topic, or a matter of pregnancy troubles, but something that I constantly navigate my life around. Even though it is estimated that 60-70% of those with endometriosis can get pregnant spontaneously, the condition is still viewed as little more than a fertility issue.

To know that many people’s apprehensions lie with how my treatment could impact my life when it comes to trying for a baby, rather than the pros and cons it will (and has) had on my quality of life now, is hurtful. 

Fertility is often placed on a pedestal and considered not only a right of passage but also something that defines our worth. A life infertile is a life unfulfilled, or so we are made to feel. Why is this thought process so deeply ingrained within us?

The concept of the ‘nuclear family unit’ is still massively prevalent in our society, to the extent that the potential inability to have a biological family automatically leads us to believe there is no way we can truly be happy. Personally, I struggle to see a more narrow-minded view than this.

This is in no way a dismissal of the pain that comes with fertility struggles – no one knows more than myself how many times I have cried at the thought of it. However, a happy family does not rely on biological ties, it relies on love, support, and acceptance – which of which do not necessitate fertile parents.

This is what makes the protruding questions sting so much more. Placing emphasis on fertility – an already fragile subject for many – and disregarding a person’s body as their own home, and not just a baby-making factory, is incredibly harmful and isolating. Irrespective of your intentions, I have never come away from one of these conversations feeling seen or heard.

I am not in control of my endometriosis and how it spreads. Would you choose menopause in your twenties, just for the fun of it? Before asking difficult questions, please recognise that a person with endometriosis is not just a medical condition, but a living, feeling human. While it may be a conversation for you, it is a reality for us.

There are ways you can be curious about the condition, though, without being insensitive:

• Instead of asking us what our ‘plans’ are, offer us a listening ear. Invite us to open up to you, but do not assume that asking makes you entitled to know the ins and outs of our lives.
• Focus on the now. Endometriosis is a very real, exhausting condition. If I am struggling with a flare-up, the last thing I want to talk about is babies!
• Think about your own life. Are you making conscious decisions about family planning right now? If the answer is no, why would you assume that we are?
• Understand that irrespective of the condition, not everyone wants children in the first place. Even if they do, you should not make assumptions, nor presume that the topic is up for discussion in the first place.

Living with endometriosis is already a difficult reality. Accessing medical care is a struggle in itself, with many sufferers facing dismissive doctors, ridiculously long waiting lists, and a general lack of knowledge on the condition.

We do not need the extra weight of uncomfortable conversations – please just support us in the present rather than questioning the future. 

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For more information, resources and support; visit Endometriosis UK

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Image credit: PeopleImages / Getty Images

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