Endo WTF?

26 March 2017

Let’s start with a big, fat, juicy cliché, shall we?

The pain came out of nowhere.

One minute, I was part of the inevitable festive season mass exodus down to the South African coast; the next, I was pulled over by the side of the road, screaming like a wounded animal, while my 16-year-old sister stared on in mute horror. Without any prior warning, I was experiencing what the replacement of the car seat with two scorching hot pokers would surely feel like – somehow the Spanish Inquisition seemed a vivid, searing, maiming reality.

Somehow, I managed to eventually restart the car and merge back into the traffic, and a few hours later I was seated in the waiting area at an out-of-hours medical centre. I couldn’t have realised at that point that this would be the first of five different doctors in six months to give me some unhelpful, and at times bizarre, diagnosis of my symptoms. On this particular occasion, I would be told, ‘I’m fairly sure this is a classic honeymooner’s complaint – you’ve just been having too much sex’. The fact that my boyfriend lived in London, over 8,000 miles away, didn’t seem to shake this particular GP’s conviction that he’d hit the nail on the head. An accomplished display of simultaneous incompetence and slut-shaming, to be sure.

The next doctor was equally helpful, giving me antibiotics for the infection he suspected had ‘crawled up’ my IUD when I’d been swimming in the sea… A month later, I moved to London, and while my next two GP visits didn’t lean quite so much towards the wacky, they were equally unsuccessful in providing any clues as to what the hell was going on. After six months of almost fainting with pain three weeks out of four (to the point where Mac often had to meet me at the train station near my office, and help carry me home at the end of the day), I had a lightbulb moment, remembering that a friend at university had also suffered from similar symptoms the year before.

Reader, I Googled it. I couldn’t remember the exact name, but after a search for my symptoms, along with the knowledge that it was something hard to pronounce, I quickly found the bastard – endometriosis. One quick GP visit and a referral later, I was finally on my way to an answer. This is also the point at which I discovered that the only proven way of diagnosing this disease is with a laparoscopy, where a tiny camera is inserted into your abdomen under general anaesthetic. It had taken ten months, but after my laparoscopy, I finally had a firm diagnosis, and the reality of what I was dealing with started to sink in.

Endometriosis is a condition where tissue similar to the lining of the uterus (the endometrium) is found in other parts of the body, mostly in the pelvis, but in some rare cases even as far north as the brain. Obviously this tissue is not designed to be anywhere else in the body, and when it bleeds at the same time as your normal period, you experience bleeding that has no way of escaping. Cysts and adhesions can also form on and between your internal organs. The resulting pain can be severe beyond description.

For a condition that is estimated by Endometriosis UK to affect as many as one in 10 women in the UK, and 176 million women worldwide, it is still a condition about which an astonishing number of doctors seem to have little to no understanding. I was actually one of the profoundly lucky ones when it came to my diagnosis – a ten month wait at 21 years old pales into insignificance when you consider that the average time of suffering before diagnosis is eight to 10 years, as the excellent documentary Endo What? highlights. Because the symptoms can vary considerably depending on the individual, along with the ingrained idea that painful periods are a natural part of womanhood, women find themselves misdiagnosed with digestive conditions such as IBS, or dismissed outright as simply prone to exaggeration because of their attempts to describe just how bad the pain is.

The pain, often a major factor for women with endometriosis, is a tremendously complex and problematic part of this condition. Some women experience no pain at all, but after struggling with infertility, are then diagnosed with the disease and found (through laparoscopy) to be absolutely riddled with it. Others, like myself, experience absolutely debilitating pain, which affects all areas of their life, but show only small amounts of endometriosis in their laparoscopies. This was the case with my first laparoscopy, but the second (a few years later) showed a significant increase in endometriosis and adhesions – so much so that the surgeon had to leave one of my ovaries stuck to the organs around it, as it was too far gone to release. At six weeks pregnant with each of the boys, I had to have an ultrasound as it seemed so unlikely that my ovaries could successfully release an egg without it becoming ectopic – both times, somehow, miraculously, they had.

The problem with pain like this, so unseen and so little understood, is that you feel like a complete drama queen trying to describe it. It is NOT anything remotely like period pain. Not even the worst period pain you’ve ever had. This is burning, twisting, relentless knives, pokers, graters. It is beyond imagining, and that’s a big part of the problem. Sex, social life, work, self-confidence – all these can become completely overwhelmed by the pain. I was so fortunate in my last job before having kids, as my boss knew early on about my condition. In order to make it to work most days, I would have to take codeine on a consistent basis, but she understood that I was working hard even when my eyes were glassy and my pupils were pinpricks. I would go and throw up between phone calls, and wear heat packs under my jumpers. Had I worked in a client-facing role, I would have lasted five minutes rather than five years.

In Endo What?, one of the points that really hit home was, ‘When you have chronic pain, you don’t know what to say anymore.’ The culture of silent suffering around endo is something that seems to settle on so many women after they’ve lived with it for any length of time. There is no cure – hysterectomies are not guaranteed, and pregnancy, if you’re lucky enough to not suffer infertility from your endo, can give you a pause at most. Cancelling events, disappointing partners, missing work, and being the one at every party who has to pass on the Pimm’s because it would interfere with your pain meds, all because of something that no-one can actually see, starts to wear you down emotionally. The fact that you’re already exhausted by the physical toll of being in pain, means you’re low on resources all around.

I realise that this all sounds very depressing, and it tends to get even more depressing when you start talking about the side effects of all the forms of medical management of both the condition and the pain. And the infertility. And the emotional fall-out. And the other conditions that can creep in when endometriosis is playing merry hell with your hormones and innards.

However, as you saw from the numbers I quoted before, if you have this condition, you are not alone. Every day, there is more research and understanding of this disease, and how to manage it through conventional medicine, as well as holistic approaches to exercise, nutrition, proper sleep, mindfulness, acupuncture, and the use of the right supplements (to name just a few!) to help the body cope with and fight these rogue cells. There are books, websites, support groups, and now this excellent documentary (which you can download from the website below); and the big message from all of them is this – we need more awareness of this disease.

If more women understood exactly what they were suffering from sooner, and doctors were better primed to offer proper diagnosis, treatment and pain-management plans, years and years of suffering could be avoided. The fact that women in the 21st century are still looked upon as clearly experiencing a fit of the vapours when they try to articulate their suffering, because somehow for women ‘pain is normal’, is frankly unacceptable. If you have a uterus, or you love someone with a uterus - sister, girlfriend, wife or daughter, please look at the symptoms below and commit them to memory:

  • severe period pain, including in the pelvis, back or legs
  • heavy or irregular bleeding
  • painful bowel movements
  • pain during sex (or afterwards)
  • difficulty conceiving, or infertility
  • fatigue

There are other symptoms that can come into play, so if you suspect that you may have endo, take a look at the Endometriosis UK website for more information. I will probably write again about my own experience with endometriosis – not as an attempt to garner sympathy or attention, as those with chronic illness are so often assumed to be doing – but rather to try and continue a conversation that needs to be had. I have been so fortunate to be diagnosed so quickly, and to have surgeries and hormonal treatments that may well have contributed to my huge luck in being able to naturally conceive two beautiful boys. I am conscious that it’s all because of one lovely friend who’d suffered from, and brought my attention to, this disease.

Hundreds of women (and, encouragingly, several men) dressed in bright yellow, like an army of loud and feisty spring daffodils, marched through central London yesterday for the annual Worldwide EndoMarch. The reality is that many of the people who saw them go past will have never heard of the condition they were marching against.

This insidious foe might have an almost unpronounceable name, but awareness and openness are our best weapons against it.

C x