Endometriosis and Me

1 in 10 women (or people with uteruses) have Endometriosis. The average time for a diagnosis is 7 years, that is 7 years of pain and confusion. We are often disbelieved when we go to seek help, told our pain is normal. Things are changing and awareness of the condition is growing, but not fast enough. I posted about this on my twitter account several days ago, it received a huge response and so many people shared their stories with me. I was heartened but also saddened that this is still such a problem for so many. Here is my story.

I started my period in my first year of Secondary School. I was well prepared, the women in my family have always suffered with their menstrual cycles and I’d seen it so I knew what was going to happen. However, I found the pain really hard to handle, my mother was sympathetic and treated me with painkillers and a hot water bottle.

The first inkling something might be different about came from the length of my period. At first they were very erratic, I wouldn’t have one for ages then I’d bleed for a fortnight. Eventually it settled into routine of a two week period every, single month. I was in so much pain, often very weak and suffering from an inability to focus during it. My mother took me to the GP. The male GP told us that might be something serious, like leukaemia. There were bloodtests and diaries and several appointments. Eventually they ruled out the nasty things and settled on “Oh well, periods are just hard”. There was also some mild anemia so I upped my iron intake. He also suggested I went on the contraceptive pill to control my periods.

My mother said it was my body and my choice, she talked through it with me doing her best to give me all the information. I was so embarrassed talking about it with her and I was not yet sexually active. None of my friends had these issues and I didn’t hear anything about this stuff at school. I was worried about taking the pill as I’d heard some things about cancer, and I just didn’t understand enough. I felt messing with nature was wrong. So I opted not to take it and carried on weathering the pain. I was around 12 years old at this point. At 14 it got much worse, so I told my mother I did want the pill after all. It didn’t help the pain but it did stop me bleeding for two weeks at a time and I could control when my period came. It meant I could begin to organise my life a bit. I made sure not to plan anything during the 7 day period break in the pill cycle. If something big was coming up, like a night out or an exam, I could run the pills packets together essentially skipping the period. I would still bleed a little but I could cope with life. I had some control back.

Things settled and I coped. I was keenly aware my friends did not need to stay home when they had a period. I felt like I was weak, periods are natural, everyone has them, why am I such a baby? At university it carried on, I went back to the GP a few times but they insisted nothing was amiss. They gave me slightly stronger painkillers but that was it, I just had to learn to live with the snarling beast that lived in my womb.

In 2005/6, in my mid 20s things really kicked off. By this time something was really, very wrong. The pain was often unbearable, the periods so unbelievably heavy, the pain was not limited to cramps either, it was everywhere. Sometimes it was so intense I fainted so I often had bumps, scrapes and bruises from that. I also started to get recurrent kidney infections which also brought a world of extra pain for me. This time the GP was a woman and she thought I might have PCOS and so a consultant appointment as set. In the meantime the kidney infections kept coming, at one point the presumed PCOS was masking the kidney infection so they didn’t realise it was still there and I ended up dehydrated and hospitalised.

Image by Julio César Velásquez Mejía from Pixabay 

You might have assumed that being admitted to hospital might finally find me some answers. They treated my kidney infection and a really lovely consultant spent a lot of time drawing me diagrams and explaining what was wrong in my biology that was causing my repeated infections (leaky valves between the bladder and kidney). He also seemed very sceptical about the PCOS diagnosis. There were tests and more tests and assurances I’d be fine. I spent a majority of this year lying o a sofa, convinced I must have something seriously wrong with me and feeling frustrated no one would listen to me.

Around a year later I finally was able to see a gynaecologist, I have no idea why it took so long. She was a woman, not that it should matter, but she was so incredibly kind. She could see the toll this was all taking on me and she re ordered all the tests again. For months I kept going back (I was living in rural Wales at the time and my nearest hospital was a 45 min drive away, so if my boyfriend wasn’t able to take me I was begging lifts from friends and family) with no answers. Obviously I had been doing my own googling and proffered my suggestion of Endometriosis. I was told this seemed unlikely, but various other things like cancer were occasionally thrown around and seemed less likely to me! Eventually the gynaecologist suggested I should have a Mirena Coil or IUS to control my periods.

As I was under the care I went to hospital to have this done. I had always struggled a bit with tampons and pain during sex but I just thought that was normal. I’d never had children so she warned me this would be ‘uncomfortable’. It was one of the most horrific experiences of my life. She really fought to get it in, I was writing and screaming in pain. Actually screaming. Two nurses held me down, one was trying to be reassuring and kind, the other was dismissive and essentially told me not to make a fuss. Suddenly I went floppy, the gynaecologist realised my heart rate had dropped and I had gone into cervical shock. She quickly aborted the attempted insertion and they dipped the table so my head was very low. Once they thought I had come back round enough they attempted to help me off the table but I collapsed a little. They kept me there for hours and fed me sweet, black coffee until I was able to walk. I went back to my boyfriends house afterwards so he could keep an eye on me. And thank god I did because he found me collapsed on the bathroom floor later that night, in pain and bleeding.

The gynaecologist suggested I should have the coil inserted under anaesthetic and that’s what happened. It did infact help as, although I bled a small amount, my periods were much reduced. Over time they would go completely. I still had random pain that I was unable to explain, I still had pain during the time I should have had a period but the medical professionals assured me this was normal. I was discharged from the care of hospital.

I moved to Bristol, it was now 2012, I was still having problems but had come to believe that I was just really bad at dealing with pain. My large tattoos should be enough evidence that this is not true, but I thought this was the only explanation. I was assured it was ‘normal’ by doctors, they must know. I was also dealing my diagnosis of Obsessive Compulsive Disorder for which hypochondria can be a symptom, so I told myself my obsession with this pain was not normal.

One day I was at my new GP in Bristol talking about my OCD. I explained my mood was low and I was worried I was obsessing unhealthily over tis pain. She immediately started to question me about the pain, I told her everything, about the pain, the heavy bleeding, the brain fog, the fatigue, the fainting. I told her I often threw up from the pain and would spend at least a day a month curled up in my bathroom wanting to die. I told her the doctors at the hospital had discharged me after ruling everything out. In a moment I will never forget she reached out and touched my arm, “Fainting regularly because you are in pain and spending time curled up crying on your bathroom floor don’t sound normal to me”. I wept in relief. She suggested Endometriosis immediately, I told her I had suggested that but no one had believed me. She also suggested other things and said she would refer me to the hospital. I was so unbelievably happy to know in that moment I wasn’t mad.

I swiftly saw a consuktant, a few tests later and they were reasonably sure it was Endometriosis. To know it was real helped me process it so much better. I now knew I had soething that doesn’t just go away, is hard to treat and would likely cause me problems having a family. But I also knew that it wasn’t in my head, that the extreme pain was actually extreme pain. Far from being weak I was strong and brave to have got this far. Suddenly I felt more powerful and in control of my life again.

There was the end of one relationship and the start of a new one (with my now husband) at this point. The added complications of this condition meant I had to have uncomfortable conversations early on with him about my body and it’s problems, about my fertility. Something I didn’t really want to do in a young relationship.

Scans had convinced my consultant that it was endometriosis but the only way to accurately diagnose it is with a Laparoscopy. I have now had a lap and two surgeries so far with my endometriosis. The last one being the most successful leading to three blissfully pain free years. Unfortunately in 2018 it came back and we are now watching and waiting, because of it’s very inconvenient location, to see if more surgery is an option.

The main point in recounting my story is to impress upon people that if you feel something is wrong, keep pushing, don’t just put up and shut up. Excessive pain ruins your life and it is not normal. I have learnt from this experience to advocate for myself and my newer diagnoses of Asthma and Hashimoto’s Disease have benefitted from this and I have received help swiftly.

We deserve good care. We shouldn’t have to beg for it. Believe women in pain, don’t dismiss us.

For transgender people there are often other barriers to diagnosis and care as medical professionals may not immediately recognise it or offer it as a diagnosis.

Find out more and how you can help here: https://www.endometriosis-uk.org/understanding-endometriosis

Little women grow up

I have just returned from the cinema where I saw Greta Gerwig’s version of Little Women. As a child, Louisa May Alcott’s book Little women was one of my favourites and I read it many times over. My husband suprised me with a ticket for tonight after it was sold out when we tried to watch it at the weekend.

Watching it transported me straight back to reading my dog-eared copy by torchlight under my duvet. I allowed the loving March family to take my hand and bring me with them on their tale of love, betrayals, family, strife, hardship and sisterhood. As an only child myself, I was always drawn to the tight bond between the four sisters.

I desperately wanted to be a writer, so I understood Jo’s passion and admired her gumption. I also wanted to be kind and good, like poor sweet Beth was. I was a little prissy and overly dramatic, like Amy, and I wanted to marry for love, like Meg. I longed, in my idyllic country childhood, to struggle through war and sickness and turmoil, just like they did. Coming through well-rounded, full of wisdom and tall tales! (I told you I was dramatic…)

When you stop to think about it, they were the Sex & The City girls or Spice Girls of their time. I know, a fairly horrifying thought, but each character possessing a trait you can identify with personally, so you can see yourself as one of them, or even parts of yourself in all of them.

The book has love stories and shows love in many different forms, but it’s not a romance to me. It is about learning how to become a woman and where you fit in, and about the bonds of family. Greta’s version places feminism and choice at the forefront and perhaps she saw in the story something I connected with before I had words for it.

Now as an adult I still have fondness for Little Women, though in my real life I know I would have less patience for the foiballs and drama of the heroines. I have enough of my own very real troubles to wish myself anything as deadly as war, famine and life on the bread line. I’ve grown up. I’ve lost touch with that feisty Little Woman I once was and perhaps it is time I remembered her a little.

A promise I have made myself is that I will write more this year. When I was reading about ink-stained Jo in this novel, I was so sure that I would have books published by the time I was 30. I’m pushing 40 now and finding the blog hard enough to keep up with! But Jo’s furiously scribbled pages, the plays she writes for her family and her sheer determination are calling from the backroom of my childhood memories. They are reminding me we are all Little Women, even when we grow up.

I am thankful I did marry for love, and that he is the kind of man who can give me a thoughtful gift like a night with myself and this treasured childhood memory. I am thankful to live in a world where even though I’m sickly like Beth, I likely won’t die from it. I am thankful I live in a world where I don’t have to fight to publish my stories or pretend to be a man. I can write and be heard as me and I should use that privilege. I am sad that we don’t yet live in a world where the stories of Little Women are always treated as equally, or given as much prominence, as men. And where Little Women of Colour are fighting to be heard and represented still. But I’m thankful I see the fire of change in so many Little Women’s eyes and I am it, is pushing it’s way through.

If this story tells us anything, it is that we should love our sisters – even when we don’t understand them or don’t like them in that moment. It tells us our stories are powerful, no matter how ordinary or how dramatic, they all have a place.

Happy New Year / Blwyddyn Newydd Dda

Trigger warning: Diet talk, eating, weight loss, body image

Insert typical “new year, new me” mantras here and add in some additional unachievable resolutions. Is that what you’re expecting? Well, prepare to be underwhelmed!

I don’t actually hate new year’s resolutions, like some people seem do, and in recent times I have found a new year is a great driver for making successful changes in my life. But they have to be tied to some kind of measurable success criteria, or significant motivation. Otherwise I can lose interest, or worse still get sidetracked into some unwelcome behaviours.

For example, in 2018 I was all about getting fitter and healthier, and that was mainly driven by health concerns. I actually achieved that pretty well and was driven further by my engagement to my now husband. Actually not for our wedding, but our honeymoon! I wanted to be able to go somewhere warm and be able to cope with it, and have enough energy to do all the things we wanted to do. A previous holiday in Berlin had us experiencing a heatwave and I just couldn’t cope, it was unbearable. I was so sweaty and uncomfortable and I had to sit down every half an hour because I was so unfit. It was then that I realised how far I had fallen from where I was comfortable being.

I’m strongly into body positivity, but in a very much “do as I say, not as I do” kind of way! I have always been bigger than other people. I’m short but have big hips, bum and breasts. So even when I’m actually pretty thin, I don’t look that way. And my weight has fluctuated terribly over the last two decades, ranging from a size 12 to a size 24.

When I was a teenager in the 90s it was cool to wear 70’s-style clothes like flares, Adidas striped jackets and collared t-shirts. All my friends were tiny waif like girls (because we were young!), and they looked so much like the girls in bands on posters on my bedroom wall.

I always wanted to be thin like them, and even though I did dancing classes and played sports, I never was. In part this is because I like food, especially cake and chocolate, and I eat a lot of it. Unapologetically, mainly. But what I didn’t realise then is that it’s also just my body type.

Many of those friends tell me now how they wished they had my curves back then. I wished they had told me that at the time, it would have helped. My dad used to joke about my ‘thunder thighs’ and ‘footballer’s legs’, but I never realised then that these are because my legs are powerful, strong and full of muscle. Now I am proud of them.

I applaud people who are powerful, confident and are at home in their own skin. I want to be that way, but I’m not (not yet anyway). I realise that I have for too long focused on the scales, the numbers, the fat rolls. But it isn’t about that. For me the question is: what is it about inhabiting my body that makes me feel good? I feel good when I’m able to do the things I want to. I feel good when I feel I look good. I like feeling strong and powerful. I like feeling sexy sometimes.

So I realise I need to work on doing the things that make me feel that way, not dieting or trying to lose weight. That is what works for me, but everyone is different.

I’ve really beaten myself up this last year because I lost all the progress I made in 2018. The scales stopped going down, then eventually they went up. I was unwell for a large portion of the year, only finally getting a diagnosis recently of Asthma and Hypothyroidism. A lot of my time was spent feeling angry at myself for not being able to get off the sofa, when in fact I wasn’t giving pause to consider why that was.

So am I going to be starting a new diet or fitness regime? Is that what I’m really trying to say, and all of this is just waffle? Well, in a way…

I’ve lost where I was a year ago in my fitness levels, there is no denying that. I was happy then with where I was, what I could do physically and I’m keen to get back there. I also want my clothes to fit me again as I’ve gone up a dress size and I can’t afford a new wardrobe!

What I DON’T want to do is be obsessing about how many pounds up or down I am. So, I’m removing unhealthy accounts from my social media (meaning those obsessed with weigh ins and counting) and I’m concentrating on eating well and doing exercise, when I can. I’m not going to beat myself for not feeling well enough to do something. I’m not going to focus the scales, but how I feel. And, sometimes buying a nice dress or eating a piece of cake might be what I need.

Sometimes a big salad or a HIIT session at the gym might do it. Sometimes I might need to go to bed for two days. But overall it’s all about me feeling better in myself, and exactly how I achieve that doesn’t really matter. As long as I treat myself with love and patience.

That is my new year’s fitness resolution: finding comfort and peace in my own skin.