Womb Warrior: Exploring Endometriosis

Disclaimer: very raw and real content, sensitive and squeamish readers please be advised   

In the UK, 1 in 10 women suffer from endometriosis. It is a chronic condition where tissue similar to that found in the womb grows in other areas of the body. Like in the womb, these endometrial cells break down each month. As opposed to the womb, however, where blood is expelled through menstruation, this blood is trapped in the body. This leads to: inflammation, the building of scar tissue and often the main symptom, intense pain. Sufferers are aptly known as 'Endo Warriors'.   

The line "You don't look sick" is often hurled at victims. For those who have battled to even be diagnosed, such comments are insensitive, but commonplace. Just because we can't see a condition doesn't discredit the seriousness of it. Although endo awareness has spread over the last few years, it is still considered a bit of a taboo topic, I think because of its relation to periods. Steeped in a history of religious taboo, 'period' remains a dirty word to many, and the avoidance of the topic reeks of our misogynistic patriarchal norms. It is no wonder that our understanding of what constitutes an 'irregular' or 'abnormal' menstrual cycle is so lacking, when 'regular' periods are glossed over in Period education with minute mentions in Biology classes. We would not want to offend the boys with something that does not directly impact them - why should they bother learning about the struggle of others? With this mindset, period poverty will only continue to grow. 

Over the Coronavirus lockdown, period poverty in the UK rose significantly. Over a three month period, the charity Bloody Good Period were forced to increase their distribution of sanitary products from 5,000 to 23,000 to meet soaring needs. Some women who were unable to gain access to necessary products instead resorted to using items such as tea towels, newspaper, pillow cases and their children's nappies. This is unacceptable.  

The 5% Tampon Tax on sanitary products may be coming to an end later this year, after a 20 year battle, but the expense spent on period care is still extraordinary. Luckily for me, aside from the odd month of excruciating pain, I am lucky with the heaviness at which Aunt Flo visits me, "I've [not] got a heavy flow" (or "a wide-set vagina"- I had to!) and don't need to rely on endless amounts of products. But for endo victims, they often have to invest considerable funds on their period care per month. In a lifetime, the average woman spends £5000 on sanitary products alone. For an endo sufferer, I imagine this figure is far higher. This figure also does not factor in the pain and symptom relief products that someone with endo or severe period pain might also purchase: prescription pills, CBD oil, hot water bottles, heat pads to name a few. Imagine being born into a household that can't afford 'luxuries' like Tampax AND develop endo. The ultimate menstrual short straw.  

Due to the progressive and recurring nature of the disease, a typical working life is also not always conducive to battling a chronic condition (although MANY do successfully.) The amount of sick days, and therefore use of sick pay by employers adds up for some. The lack of payment for 'excessive' sick days or if the sickness lasts less than three days (which affects SSP), can have a further financial impact on endo sufferers.

For some, endo can also lead to fertility problems. The condition can cause blockages in the fallopian tubes and can create a hostile environment for eggs and sperm to survive. As women, endless societal pressure is heaped upon us. As a gentle reminder, there is never an appropriate time to ask someone "When are you going to have a baby?", however well-meaning your intentions. You do not know what someone might be going through: perhaps grieving a past miscarriage, dealing with fertility problems, health issues or simply a desire not to have children. Our wombs are not public property. We are not Handmaids. An explanation for their expectation is not mandatory.      

Endometriosis is an invisible illness with no tangible, outward sign and is thus for some, incredibly isolating. Keen to develop my understanding of the wider impact of endometriosis, I asked my friend and blogger Beth Motley some questions about the condition. Beth utilises her social media presence to spread awareness of the illness after being diagnosed at just 18. A true warrior.    

What were your symptoms? How were you diagnosed?   

My symptoms were the usual for endo sufferers: terrible period pain, bloating, sickness, crippling back and stomach ache. My thighs hurt, my vagina would ache, I had terrible headaches and suffered from really heavy periods, which caused dizziness and made me lightheaded too. I attributed all this to just 'being a woman'.

When I asked my friends or my mum, they all said it was normal to suffer from pain and brushed off my symptoms. In their defence, they didn’t really know any difference. We were never told or taught about endometriosis. I remember frequently bleeding through my school skirt which was incredibly embarrassing for me. I started keeping spare underwear in my bag and practically carried a pharmacy of pain killers with me at all times.

I was diagnosed in my final year of school. I was 18 and taking my A-Levels. I spent a large amount of time in and out of hospital, so much so, that my school suggested I retake my final year because they thought that I wouldn’t be able to pass any of my classes. I spent a month in a wheelchair, and had a total of six incisions from two surgeries, eight months apart.

But rewinding to the beginning of those eight painful months, I had contracted a sick bug from a friend. It wasn't unusual for me to be ill, I probably spent more time with my school nurse than I did with my own mum! For my friend, this sick bug was a 24 hour thing, a quick puke and stomach ache, and it was over. However days of feeling low, turned into weeks. After numerous GP visits, coupled with several hospital trips- only to be discharged on pain killers and "rest” - I was taken in to have emergency surgery for an appendicitis. 

Once I came around (and let me tell you being allergic to general anaesthetic and having to be resuscitated on the surgery table really does take it out of you!), I was told that I had a lot of adhesions and blood in my pelvic area, along with puss from a burst cyst. I asked what could have caused it, but my surgeon didn’t know.

So, began my road to recovery, or so I thought. A couple of months passed by, and I still wasn’t feeling myself. I was low, sore and unhappy. I went back to my surgeon who referred me to an IBS specialist, who then referred me to a gynaecologist. Because of all the time it took to get referred and then get an appointment, I ended up going private in order to just see someone who understood what I was going through.

In those few months, I was at my worst mentally and physically, I have never been so depressed or unhappy in my life.

I finally saw a gynaecologist who performed my second laparoscopy (where they make 3-4 incisions: one on your hip, one on your bikini line and then one in your belly button where they insert a camera to see what is going on.) It is not a super invasive surgery, but it hurts and it is very uncomfortable because they puff CO2 into your stomach, so you are swollen for at least a week afterwards. 

They found endometriosis in my uterus and pelvis, and used laser to burn it out. I felt so relieved because it proved I wasn't crazy (the amount of people who told me that my pain was just in my head was insane). Then I was scared, because I had never heard of this condition before. I cried a lot, I felt so isolated and some girls at school made fun of the fact that I had a disease for the rest of my life. I had never felt so alone.

The trial of management then began. I was told that I had 3 options:

1. Have kids ASAP in case my fertility was affected (I was 18 at the time, single and still at school...)
2. Use or take a contraceptive to manage pain and symptoms (this is not a cure and does not always work for everyone)
3. Have a hysterectomy

As yet, endometriosis does not have a proven cure, so these treatments purely manage the symptoms. I took the second option.    

I finally found a contraceptive that worked for me (after a long trial and a 6 week period!) and I’ve been on it ever since. I had another laparoscopy in December 2019 and I was pleased to hear that my endo has not grown back...so far!

What effect does endo have on your everyday (and future) life?

Endo has definitely made me rethink my life. I had a lot of goals and visions for my future and I had to change the course of my life, which was not only upsetting, but also really opened my eyes to how serious this disease is. It is not just a one off, you have to function with it for life. 

When I used to have a monthly period, I would have to take days off every month and it would really take everything out of me. I found that sport became more effort, chronic fatigue meant that I slept a lot and I would spend a lot of my time exhausted, not having energy for simple tasks like cooking or shopping.

I am currently a freelancer so I can take leave without the risk of losing my job for having too many sick days. Even though I may not have endometriosis right now, my body still suffers from multiple problems that make it hard for me to fully function.

A common symptom of endometriosis is also pain during sex, which can put a strain on relationships too. If you experience this, don't sit in silence, go and see your GP or gyno.  

What is the worst aspect of living with endo?  

The worst aspect of living with endo is definitely the way it can just cripple you at any moment. I am scared that my friends won’t want to be friends anymore when I end up cancelling plans last minute, or complain about feeling ill.

You use Instagram as a platform to spread awareness. What response have you had and which endo accounts would you recommend following? 

Spreading awareness on Instagram has actually given me a voice. I spent 3 years in denial about my disease. Partly because I didn't know anyone else who suffered with it so I felt like I couldn’t talk about it, and partly because I didn’t want to acknowledge that my life and my future looked different to what I had envisioned before my diagnosis.

I have actually received amazing support from both friends and strangers on the Internet. I posted a very raw photo of my before and after endo tum and the feedback was crazy, lots of accounts popped up in my comments saying that my image was so real and honest. It felt empowering spreading awareness and creating a community where it is okay not to be okay.

There are so many accounts on Instagram about endo, but a few of my favourites for good information and tips are:

• -  @endohealthhub

• -  @endometriosis.uk

• -  @endounites 

• -  @endo_graphics

• -  @endometriosismemes (we all deserve a giggle, even about our problems!)

What tips do you have for others living with Endo? 

I think it is hard to advise others how they should live their lives. The effects and severity of the disease differ from person to person, so I don't want to push a certain lifestyle on anyone. There is no 'one size fits all' approach. 

If you are suffering from any of the symptoms I have mentioned, definitely speak to your GP or gynaecologist because you shouldn’t be suffering in silence. It can be a tough road ahead, but peace of mind and being in the know will definitely make it easier. Plus, there is a whole online community to support you if you want it, so please do not reduce your symptoms to just a “bad period”. Trust your instincts. 

How equipped have you found the NHS with dealing with chronic conditions? 

The NHS is amazing for some aspects of my life, but for an under-researched and underfunded disease like endo, it is not there. I know a lot of people who have been forced to go private and self-fund their own consultation and surgery because the NHS has simply taken too long or sent them to the wrong specialist.

What are three things that endo has taught you? 

Endo has taught me a lot of things and I am sure I will continue to learn even more. My top three takeaways are:

1. Patience and sympathy. Not that I was the Grinch before, but I used to be less forgiving when someone said they felt ill, had a belly ache or flaked out on plans because they weren’t feeling well. I have become a more understanding person through my own experiences, and that has been a very important lesson for me.
2. Trust my gut. When every doctor was saying that crippling stomach ache was 'normal' or having such a heavy period that I had to change my tampon more than once at night is 'natural', that is when I really had to trust myself and listen to my body. It told me something was wrong and I had to fight to get the answers I needed. 
3. Don't self-pity. Yes, it sucks but you can't wallow in it. I need to look at my life from a different perspective and take advantage of different opportunities, I can't let life pass me by. You never know, sometimes it could be a blessing in disguise!

There has been no improvement in endometriosis diagnosis times in over a decade, according to a new report published by the APPG in October. On average it takes 8 years for women to be diagnosed. A shocking statistic. It was found that 58% of women visited their GP more than 10 times, 43% visited doctors in hospital over 5 times and 53% visited A&E before diagnosis. The report calls for the government to commit to halving these diagnosis times by 2025 and ensuring a baseline of diagnosis, treatment and management across the UK, alongside other requirements. 

It is clear, more than ever, that the government needs to wake up to the debilitating impact of endometriosis on all aspects of sufferers lives. This is especially true following the suspensions of necessary healthcare services during the worst of the Covid pandemic. Action is required now to ensure that future generations are provided with better treatment for chronic conditions. "People with endometriosis deserve better. Period." 

Let's talk about Bridget Jones...

A guest post by Keira MacAlister 

The first time I was called ‘fat’ I was 9 years old. Up until that point, I don’t think I had even realised I was potentially ‘bigger’ than other children in my class, and as an adult, I can objectively say I was not fat, I was chubby and there is definitely a difference. I felt a shift that day, I had become defined by something outside of how I viewed myself. I had genuinely never considered my appearance until then; I was far too busy doing normal 9-year-old stuff like playing with Bratz dolls and dancing to Girls Aloud. From that day my weight would be an all consuming issue throughout my life until the ripe old age of 23. That's now.  

When I think back to certain moments in my life, and the value I placed on the size of my body, it makes me feel two things. One, sadness for my past self as she was so overwhelmed by her desire to dissolve, she stopped living and two, angry. Angry about what the world has told me about myself, explicitly or implicitly since forever. 

Now, before I carry on, I want to make sure I acknowledge my privileges in this space. I am a white woman and therefore, whilst I am fat, I know that I carry a certain level of privilege just because of the colour of my skin. The people who taught me to love my fat body were Black women, beautiful incredible fat Black women who helped create a movement for marginalised bodies- in particular fat Black bodies. So, let me first point you in the direction of some incredible Black women who are far more qualified than I am to talk sense: Stephanie Yeboah, Aja Barber and Lauren Leavell (all three of these women have helped me immensely!) There are far more incredible Black body positive women out there and I’m also still learning, so have a google, diversify your feeds, and check out the origins of this movement (hint: fat Black women helped start this whole thing).

Okay, here we go. Since I was a teenager, I’ve been hyper-aware of my body and the limitations it has caused me. This probably sounds strange but let me explain. I always wanted to be an actor, as a child I never wanted to do anything else- my mum actually says I was born dramatic and she’s probably right. I noticed in school and beyond that I was overlooked for roles and pushed into the background until… well, I got thin. Suddenly I was catapulted to the front, cast as the lead in the musicals and given solos in showcases. Everything I had longed for for so long was suddenly mine. Except, nothing had changed really. My voice was the same, my acting ability was the same, but suddenly I looked like a lead. I looked like someone who could be desired. 

Whenever we see fat actors on stage or screen, we aren’t told to view them as lead character material or as sexually desirable. Look at Rebel Wilson for example, in Pitch Perfect her character is literally called ‘Fat Amy’. We’re sold this name as if it’s a mark of power for her character, taking away the word ‘fat’ from her potential bullies. However, doesn’t using this marker only reinforce the links between fat and bad? What if Amy had just been a beautiful woman who also happened to be fat? Her character is portrayed as overly sexual and we’re invited to laugh at her because fat people can’t be sexy can they…? Not in Hollywood they can’t.

Now if that’s not bad enough, what about all those characters we were told were fat when really, they most definitely weren’t. Top of this list for me has to be Bridget Jones. Why were we sold this idea that a successful woman, who weighed 9st nothing and had her own central London flat was a hot mess? Follow that fib with Martine McCutcheon’s Natalie in Love Actually, and the constant fat girl gags, and we’ve got ourselves a one-way ticket to slim tummy tea and appetite suppressant pops. I can laugh about how ridiculous this stuff is, but the scariest part is that it’s actually so damaging. When I first saw Bridget Jones, I believed the fat narrative they told me. I weighed about the same as her at the time and I was mortified. All these stories do is teach women to hate their bodies and tells us that beauty is a size 8 or below, pretty worrying stuff when the average UK woman is a size 16. 

We need to start seeing fat people on stage and screen in stories that aren’t about them being fat, or them being fat isn’t a comedic device. Being fat doesn’t mean you shouldn’t be the lead character. Fat people are people, they have complex and interesting lives that shouldn’t be forced into these narrow stereotypes that, from experience, just aren’t true. We need to stop casting non-fat people to play fat characters. If a character’s whole storyline revolves around their sudden realisation that they were never really fat and ugly, but thin and beautiful, what message is that sending? Hollywood and co have been successfully selling us the idea that fat is bad for decades, and honestly, it’s boring. It shouldn’t be political to be fat and live life unapologetically. The irony of getting a bigger person to feel invisible isn’t lost on me and I refuse to conform to it. So, take up space, be happy, don’t put your life on hold till you’re ‘skinny’, and be the beautiful complex creature you are. Hollywood doesn’t know a thing.  

Keira is studying her master's degree in Participation in the Cultural Sector and is passionate about all things body positivity. She is the only person I trust to takeover this blog... (currently!)