What it’s like living with endometriosis and premenstrual dysphoric disorder

illustration by Javie Huxley

TW: mention of suicide

Most people I’ve met in my life have definitely had something negative to say about their period. The inconvenience on date night, the money that is thrown away on sanitary products and painkillers, and the gut-wrenching pain. Not all people have periods that suck but, unfortunately, mine really, really suck. I am one of the chosen few who have been blessed with endometriosis and PMDD, and they make having a period as fun as having your hand stuck in a blender. At this point, I can hear the cogs turning in your head as you rack your brains to figure out what these acronyms and conditions mean but don’t worry, I’ll explain. Strap in huns, I’m about to take you on a reproductive and endocrinology journey!

In layman’s terms, and as defined by the NHS, “endometriosis is a condition where the tissue that lines the womb (endometrium) is found outside the womb”. And according to Mind, PMDD (premenstrual dysphoric disorder), is “a very severe form of premenstrual syndrome (PMS), which can cause many emotional and physical symptoms every month during the week or two before you start your period.” Together they work as Bonnie and Clyde, Thelma and Louise, Jay Z and Kanye West (pre-Kim K), to ruin my life. They debilitate me both emotionally and physically, whilst plaguing my mind with depressive and suicidal thoughts., Unfortunately, I am just one of many that are suffering: around one in 10 women in the UK are thought to have endometriosis, whilst 2-5% have PMDD. Research for people with periods who experience both conditions is few and far in between, although the odds are it would still be incorrect and not properly representative, as many are undiagnosed.

I’m a relatively happy young adult who works full time and has a decent social life. But, two weeks before my period begins, I am plagued with a dark cloud of depression”

The best way I could possibly explain my symptoms and how they affect me is by describing a month in my life. For the most part, I’m a relatively happy young adult who works full time and has a decent social life. But, two weeks before my period begins, I am plagued with a dark cloud of depression. I can barely function. I’ll miss work, I’m crying on the train, having panic attacks, feeling extremely suicidal, and experiencing a range of other physical symptoms including bloating, nausea, hypersomnia and fatigue. This will last anywhere from three days to about a week and this is only stage one – the PMDD. Other symptoms also include feelings of anger or irritation, feelings of hopelessness, feelings of tension or being on edge, difficulty concentrating, breast tenderness or swelling, pain in muscles and joints, or feeling bloated and problems sleeping. The only relief from this hell is when I finally get my period but then we move onto stage two – the endometriosis.

For me, endometriosis means I get extremely heavy and painful periods. Periods that make me nearly pass out from pain and give me a flow so heavy, I need to wear both a super tampon and nighttime pad. The bleeding will then go on for a few days and eventually, my reproductive organs will cease from stepping on my neck. If you suffer from endometriosis, you may also experience pain during or after sex, back and/or leg pain, prolonged bleeding and tiredness. The conclusion to this cycle is stage three, which is me reverting back to my normal state and salvaging the pieces of my life that I let fall to shit. I have to do damage control to any relationships, finances or opportunities I may have squandered, before starting this roller coaster all over again in two to three weeks time.

The bleeding will then go on for a few days and eventually, my reproductive organs will cease from stepping on my neck”

Now, luckily, I am super in tune with my feelings and my body after trying for years to figure out what’s up with me. I couldn’t tell you how many times I’ve been to the doctor in the past two years, but trust me, I’m definitely making the most of my tax. From reading symptoms online I knew I had endometriosis but convincing my doctors to give me a laparoscopy to confirm, was a taxing journey. Sadly, this is not surprising as the treatment of black people, and black women in particular, is pathetic. If it could happen to Serena Williams, then what hope is there for us, mere mortals who aren’t the greatest athletes of all time?

Nonetheless, I persevered. I had painful periods, pain during and after sex, I was fatigued, and had painful excretion movements. So, in March of last year when I finally underwent the operation and my gynaecologist confirmed I had endometriosis, I wept. After all these years of having doctors belittle and not understand my pain to finally be proved right was vindicating. It, then made me realise I had to continue to listen to my body and to also figure out what was going on with my emotional state.

Anyone who knows me knows I can cry – not a cute, single tear but like full-blown, fresh out the womb, sobbing. I have accepted I am a crybaby. However, around August last year, I noticed my moods and crying were out of control. There was a boy (obviously), that I had been seeing and out of the blue, he blocked me. Usually, I would have definitely had been upset, however, this time, I had a full blown panic attack at work. I left early, had a few crappy days but then went back to normal. I didn’t think much of it, because as I’ve said, I’m very emotional.

After all these years of having doctors belittle and not understand my pain to finally be proved right was vindicating”

A similar kind of breakdown happened the next month and the months after that. It got to the point I jokingly mentioned to my friend, “I’m just having my monthly breakdown”, and that is when it clicked – I was actually having a monthly breakdown. I backdated my conversations with her and realised every month around the same time, I was spiralling out of control. That is when I did some research and found a condition called PMDD. I had never connected with something so deeply and it was reassuring. I did a ton of research and realised that not only was I experiencing the emotional symptoms, but the physical too. At this point, I had already been misdiagnosed with depression and I was taking antidepressants which coincidentally are also a treatment for PMDD. However, I wasn’t satisfied, I wanted a PMDD diagnosis just for pure validation.

Fast forward to today and I am still without an official diagnosis but if there’s one thing I learnt from my endometriosis and being a black woman seeking medical advice, it’s to listen to my body. I believe I have it and I will keep pushing on for my diagnosis. I know damn well this is only the beginning of my journey especially considering I have about 40 years worth of periods to navigate through. Sometimes it can all be overwhelming and scary to say the least, I’m glad I listened to my gut and kept telling my doctors that I wasn’t and am not alright. Periods suck, yes, but they shouldn’t be affecting your day to day activities. If you think yours sucks more than it should, your doctor needs to know.

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