We Need to Talk More About the Pain Women Experience as a Result of Endometriosis.
This week, new research revealed that it takes on average, 8 years to be diagnosed with endometriosis. The all-party parliamentary group (AAPG), surveyed more than 1000 women, and discovered the staggering statistic, which seems even more absurd when you consider that more than 50% of those with endometriosis have attended A&E ahead of their diagnosis. Chair of the APPG on endometriosis, Sir David Amess MP, said the report showed “the huge, life-long impact” of endometriosis. “It is not acceptable that endometriosis and its potentially debilitating and damaging symptoms are often ignored or not taken seriously — or downplayed as linked to the menstrual cycle and periods,” he said.
So what exactly is endometriosis?
Endometriosis is where cells and tissue usually found in the lining of the womb start to grow elsewhere in the body. These cells behave in the same way as those in the womb, but unlike a period, have no way of leaving the body. It is estimated one in 10 women have endometriosis. Charity Endometriosis UK says those with the condition “endure unrelenting pain” everyday as a result. It can be debilitating, have a huge impact at work, and those with the condition can need frequent access to a toilet due to bowel or bladder related symptoms.
So that’s the official description. I was diagnosed with endometriosis in 2019, after nearly a decade of fob offs from medical professionals in the UK. The only reason I found out I had it, was because I stumped up the cash to go private, and have an internal ultra sound, which is where a waspish nurse in her fifties, lubes up a flash light, pops it inside you and asks you if you’ve got any nice holidays booked, whist she rummages around inside you to try and give you your money’s worth. The bedside manner could do with some helpful pointers. In a cute ‘fuck you’ from my reproductive system to me, I opted for the one day only BOGOF deal, chalking up Adenomyosis too. By way of explanation; In endometriosis, the same type of cells that line the uterus, or womb, also grows outside of it. The growth can breach nearby organs like your ovaries, fallopian tubes, and bladder. Adenomyosis, on the other hand, happens when the same kind of cells that line the uterus also grows deep in the muscular wall of the uterus and thickens it.
What is so ridiculous about the entire diagnosis, is that it only really serves as relief, that you weren’t going insane, or being a total hypochondriac. Because there isn’t a cure, and there doesn’t seem to be much well funded research actually helping to find one. There is a misconception that means the condition gets lumped into ‘having a painful period,’ which, is one of the symptoms, but not the entirety of the impact. Of the predominantly male doctors that I saw over a ten year period, none could offer any explanation as to why it happened, whether it would stop, or, crucially, how to actually alleviate the monthly exorcism that happens in your abdomen. I didn’t even get a diagnosis until a year ago. Pathetic suggestions of Nurofen, or ‘if your mother has it, that might be why you have it,’ supply only ‘side of the M1 Fortune Teller’ science as a basis for their musings. The Doctors aren’t even convinced themselves. They spoke so softly that a strong wind would have betrayed them to silence. One, who had a daughter my age, looked at me like a burns victim, telling me to ‘be brave.’ He then proceeded to suggest that I should go on some form of contraception. The logic being that if you don’t have a period, you reduce the inflammation + symptoms monthly. The problem with that though, it you aren’t really treating the main issue, you’re just adding synthetic hormones to your body to try and deflect from its ‘failings’. As someone who has vehemently rejected contraception in the form of additional hormones, the pill, the patch, the coil, I was convinced by a nurse that the implant would be a good option for me. I was reluctant at first, but, her strong words of encouragement, that, ‘it might be better to take the hormones Dear, than the monthly pain’ seemed like the most reasonable suggestion at the time.
I have made some pretty bad decisions in my life. The fringe I had to accompany my head brace as a teenager wasn’t great. Almost everyone I’ve ever dated, also not great. Pretending to be an accountant called Jenny when I started my company and people would ask to ‘speak to finance;’ also not great. But putting the implant in my arm, that was a Podium bad decision. To cut a long story short, I had a period everyday for 6 months. Now, you might not be familiar with PMS, heavy periods, or the entire inside of your body just shedding for 5 days, every 28, but, I’ll help furnish you with some strong imagery. These are the official symptoms of endometriosis. They are exacerbated by your period.
- Severe, debilitating abdominal cramps.
- Pelvic pain, usually worse during a period.
- Long periods.
- Heavy menstrual flow.
- Nausea and/or vomiting.
- Pain/cramping during or after sexual intercourse.
- Bowel and urinary disorders.
In my twenties, I spent 50% of my periods passing out from the pain, something that became normality. I would be sick without fail every month, endure extreme abdominal pain, where I couldn’t uncurl my body from the foetal position. Tampons were almost useless given the haemorrhaging — a futon would have been a better shout frankly. The migraines would be a lovely touch, and ensure that the codine count was way past the recommended daily dosage. The bowel cramps and diarrhoea were more ambitious than I was. The dull back pain that followed you through the month would spike up, making it impossible to sit or stand up straight. The absolute worst feature though, is the uncontrollable mood swings. I’m not talking ‘she’s a bitch when she’s on her period.’ I’m talking about the large black hole that you dig for yourself, and then crawl into. The things we say to ourselves that we wouldn’t dream of saying to even our worst enemy. Cancelling all plans. Catastrophising even the most insignificant of issues. The on edge anxiety that causes panic attacks, and crying in the loo. Telling yourself you are a worthless piece of shit. That you are unlovable. That you’re a fat ugly pig and no one will ever see beyond that. That you’ll be found out. That you’re an embarrassment. Sometimes, I wouldn’t leave the house for days at a time. The fatigue was extreme; I wouldn’t have been able to walk up a flight of stairs. The black hole was dark. The pain was consuming, and it felt like a dirty little secret. I lied about where I was. I was running my business throughout my twenties, so I felt the need to ‘save face.’ I’d pretend to be at meetings but I’d be lying on the bathroom floor, curled up, bleeding, in pain. The doctors repeatedly told me, for nearly a decade, that some people get painful periods, and that I should go on the pill. Nutritionists told me to change my diet. I cut out dairy, sugar, caffeine. I lost 25 kilos. It made no difference. The implant put my symptoms on speed. I was bloated, uncomfortable, hot (my body was the temperature of an active volcano, all the time). I had no sex drive. I was anxious and on edge, and really struggling to balance my job with my life. It felt like I had a demon in my head, and I felt jet lagged all the time. Within 24 hours of removing the implant, I felt more normal. But I was also back to square one. What was suggested to me was to go back onto another form of contraception, or consider surgery, which would render me infertile — something that is not an option for me currently. Prior to getting a diagnosis, 58% of people visited their GP more than 10 times with symptoms, 43% visited doctors in hospital more than five times, and 53% visited A&E. Once diagnosed, only 19% know if they are seen in an endometriosis specialist centre. And 90% of those affected said they would have liked access to psychological support, but were not offered this.
The above symptoms and issues linger still, and each month is a lottery in terms of how bad it will be. It can be difficult managing the pain and fatigue alongside running a business, trying to accomplish fitness goals, and living a full life. Praying each month that the bad days are weekends, so you can be more discreet about them. The condition is real, polarising, painful, debilitating and damaging, and there seems to be no question that more can be done.
Recommendations made to the government include:
- A commitment to reducing average diagnosis times
- Establishing a baseline for the diagnosis, treatment and management of endometriosis based on NICE guidelines
- Investing more funds into researching the condition
Emma Cox, CEO of Endometriosis UK said the report “should be the final warning” to the government and NHS bodies.
“The average diagnosis time for endometriosis remains at eight years — shockingly, it’s not changed in a decade. Action must be taken to drive this down,” she said.
