Updated: Jun 11, 2020
I guess it’s only fair, since I’m asking you all to share your stories, that I share mine :)
So, jumping straight in … since the age of 14 I have always had extremely heavy periods, to the point where I would have to change my super/super+ tampon/pads every couple of hours. I was also repeatedly told the intense pain I experienced every month is normal. One of my worst nightmares was when I used to tentatively stand up in class, just in case I had leaked. Imagine my embarrassment when I did? Most months I would have to take a day off of school due to tiredness and the sheer pain I felt just before the flood gates literally opened.
My lovely mum repeatedly took me to the doctor until eventually I was prescribed the Jasmine contraceptive pill. To be fair, this did help to alleviate the heavy bleeding and severe pain, but horrors of all horrors I gained weight and had skin breakouts which isn’t fun when you’re a 14-year-old trying to figure your way through puberty. I felt completely isolated. But because periods and reproductive health isn't openly discussed in depth during school, I thought ‘my condition’ was a normal part of being a woman. Over the next couple of years, while the medication helped to relieve some of the more debilitating symptoms, there were also unpleasant side effects. So, I tried a couple of different pills to see if any helped, but to no avail. By then I had had enough and eventually, when I turned 18, I had the Nexplanon implant fitted.
For the first time in my adult life was I free from pain and joy of joys, I also had no periods for over three years. You cannot imagine what this meant to me. I had my dream job in TV in London, working and playing hard in equal measures. It was an amazing time, my life was pain free and non-stop, so when I started spotting again, I had another implant fitted before heading off to spend some time in Canada.
I spent an amazing year in Whistler and met Ollie, the love of my life (cringe I know!). Unfortunately,
whilst there, and I’m sure our lifestyle didn’t help, the pain started again. Weirdly, despite all that had gone before, I had forgotten just how bad it could be. While it wasn’t the worst I had ever experienced, it was still extremely painful with stabbing cramps and constant bleeding. But I wasn’t going to let this beat me, so I found the strongest painkillers I could, dosed myself and carried on having fun. Yet all the time, a black shadow of pain was always lurking in the corner, waiting to pounce.
Sadly, when I came back from Canada, the pain had almost become too hard to bear. It was a very stressful time as I was in the process of moving up to Manchester and trying to get freelance TV work. I spent my days dosed up on painkillers and every night I went to bed crying, huddled in a ball, desperately trying to find some relief from the black shadow that dogged my life. One night, mum came running in and wanted to take me to A&E, but I refused to go, because based on my previous experiences, I did not think they would take me seriously. Boy was I right. So, I kept going to see my Doctor who although he wanted to run some tests, my move to Manchester was in full swing, so I decided to register with a new doctor and go from there.
My first year in Manchester was a highly painful experience. My symptoms worsened, regularly unable to sleep, calling in sick to work and making excuses to get out of social events. I wasn’t in pain all the time, it was probably every three days or so and for around 24 hours, it was really bad. I went to see numerous doctors but no one took me seriously. Comments like, 'this is just part of being a woman', 'you're tired because you're trying to go to the gym and maintain a full-time job', 'it's IBS', 'it's gluten intolerance' 'maybe it's because of the weather' ‘You’re just doing too much’. Seriously! These were highly insulting, not too mention completely demoralising comments.
I kept asking if it could be endometriosis and despite having to fight to be tested, time and time again they came back as normal. At this point in my life, I withdrew into a very dark space and had some very black thoughts. I just wanted it to stop and began to believe it was all in my head. I remember sitting on my bed crying to Ollie, saying ‘It must be me, it must be all in my head’. This was hard for Ollie to watch, unable to do anything except comfort me. I will be writing about mental health in further articles.
At the end of 2018, my parents had moved up North and my boyfriend and I moved in with them to save money for a house. I registered with a new surgery and as a last resort had a coil fitted in the hope this would help. How wrong was I? After two weeks I felt like the coil had literally bored a hole inside me, and even though I have a very high pain threshold these days, it was unbearable. So, armed with my extensive research, off I went to see a new doctor. I vividly remember sitting in her office begging for help. I explained how much this was affecting my life and needed it to stop. Instantly she said, I think you’re right, this could be endometriosis. For the first time ever, I felt that someone was listening. I just burst out crying – it was such a relief!
2019 was a very tough year. I am so grateful I had my amazing Mum around to soothe me when I just didn’t know what to do with myself – let’s be honest, nothing beats a Mummy hug! My doctor started the long drawn out process of referring me to a gynaecologist, but this took ages. Living with Endometriosis is very very challenging. Everyday it’s like someone is constantly stabbing you in the stomach, then being wrapped around the toilet every night, crying because of the pain and the nausea has become too much. The seesaw bloating I experienced meant my self esteem plummeted to an all time low. In the morning I would wake up one size, then by the end of the day I looked three sizes larger, sometimes this could happen within a single hour. Baggy jumpers and leggings became my best friends! Even now, there are many times when planning to go out, I just sit on my bed in tears because I can’t get into anything I want to wear.
At this point, I had started a brand-new job which I loved. From day one I was completely honest with with my boss about my health and why my heat pack would be coming with me everywhere I went. The job was so full on I couldn’t and didn’t want to have to continually call in sick. Unfortunately, my work suffered massively and I became increasingly more frustrated because that bloody Endometriosis was stopping me from being the best I could be. It was a constant round of dragging myself into work after sleepless nights drugged up on a cocktail of painkillers. I was running on autopilot and because my brain was so foggy I was constantly messing up. Stronger pain killers helped to alleviate the pain but they didn’t help me. In fact, they made the brain fog even worst. A year on, when I look back at the work documents, I can pinpoint the exact days when things were really bad, as I genuinely can’t make head nor tail of anything I produced. I will be writing further articles about the toll on work too.
I became completely addicted to my heat pack. If I left the house without it or my painkillers, panic used to set in – I couldn’t be without them. When I got home I used to collapse in a heap because I had zapped all my energy just trying to function normally. I remember one day, calling my boyfriend to pick me up from work as I couldn’t get up off the floor. Unfortunately, he couldn’t so I just lay there, dosed myself up and sobbed. My life had become a living hell and I decided then it had to change.
My social life suffered. Just when I should have been making new friends, I used to make plans and end up cancelling at the very last minute. I hated that period in my life. Low energy levels meant I was unable to exercise, and when I did the pain worsened. Exercise used to be my saving grace and helped to keep my head clear. The impact of being unable to exercise was pretty dramatic and I struggled with the consequences in more ways than one. Our sex life was completely non-existent, anytime we even tried, I ended up in agony, bleeding uncontrollably and crying with frustration. I was slipping deeper and deeper into a black hole and struggled to believe there would ever be light at the end of that very unhappy tunnel.
The impact of endometriosis goes far beyond the physical, it is totally emotionally draining and can leave you feeling extremely isolated. I am one of the lucky ones as I have an amazing support network around me including my parents and Ollie my lovely boyfriend, both of whom have been my absolute rocks throughout this unhappy situation. Ollie listens and help as much as possible but even he too can feel helpless at times. I also have a great group of very understanding friends, but sometimes it must be really tough when all I seem to do is complain about my health. There have been times when I have ended up shutting myself away from a lot of the people who I love.
Eventually, my doctor sent me to an amazing specialist, who in turn sent me for all the right tests. Sadly, the only way to diagnose endometriosis is via a laparoscopy - how in this day and age is this still the best diagnostic option? I eventually had a surgery date and was counting down the days to becoming pain free. The day before surgery it was cancelled - I was crushed and could not stop crying. I was so devastated I ended up leaving work and had to wait another four weeks for this life changing surgery.
Finally, it happened and although it was a really painful procedure, the pain was nothing compared to what I had endured every day for so much of my short life. They removed the endometriosis from my left ovary but could see that I had adenomyosis (endos sister - yay! 🙄) within my womb which they cannot remove. The doctor said because it had been caught relatively early he wasn't particularly worried about the impact on my fertility, as long as we kept an eye on it. I am one of the lucky ones and so thankful that finally I found a caring gynaecologist who actually listened to me. I feel for you warriors out there who are suffering.
I had my surgery in August 2019 and I can truly say since then I have been on a journey of personal discovery. I know it may sound super weird, but after the operation I really struggled mentally. This was because I couldn’t relate to this new pain free version of me. The journey included having to ‘reconnect’ with myself again. I have also dedicated the new me to another voyage of discovery. Today my goal is to find ways to eradicate the unfair crap women have to endure. I am devoted to consistently learning and researching alternative therapies, to get a better understanding of the mind, body connection which I hope will help me and others to manage this appalling condition.
Pain wise, it has been a lot better although it is not the end of my story. At the beginning of 2020, the pain and bloating came back so I switched to a 99% pescatarian diet. Currently I am struggling with pelvic floor pain. Over a year ago I saw a specialist physiotherapist who told me I had extremely contracted pelvic floor muscles. He advised me to avoid anything that would cause them to contract further, such as ab exercises and although they wanted to start a course of treatment to relax them, unfortunately every appointment was cancelled. My first appointment was scheduled for March 2019, my first actual appointment took place December 2019. I desperately need this treatment as I continue to struggle with muscles and joint pain. I do daily stretches to try and ease it, with some yoga and walking, but my hip joints and lower back seize up which can be really painful. That’s my next challenge!
Any tips, please send my way! :)
I am still on multiple elements of hormones for my body – the Gederal pill and the implant again, just to keep everything in balance. If I miss the morning pill, by the afternoon I'm in terrible pain and bleeding profusely. Sometimes it’s very challenging and can be deeply upsetting, and other times everything feels fine, because I never know what each day has in store for me, it can get me down. But, I refuse to give in and I am determined to persevere. I have transformed my diet by becoming a pescatarian, which has helped with my pain. We are all human and sometimes I just want to go out and think sod it, it’s my birthday/friends are out/ let's have a few drinks’ and then I spend the next morning huddled up, unable to sleep and in agonising pain. I can never really let my guard down and always have to be thinking about how my body, and my mind, is going to react. You think you have taken three steps forward, start eating well, getting back to the gym, having a social life and staying up late (22.30 - that's now late!). Suddenly, you're right back to square one, with your body freaking out, feeling completely and utterly drained – from my personal experience it can take another week to get back on your feet again.
I am adamant this will not rule my life and I will live my life how I want. The biggest lesson is to listen to your body more and be forgiving and stop trying to ‘fight’ against it all the time. I’m naturally outgoing and like to be busy. So sometimes it can be very difficult to accept that I need to be kind to myself. If this means I need to rest or sleep, not go to the gym, just do gentle exercise and sometimes even cancel social plans, then so be it. I still have bad weeks, I still have sleepless, painful nights but I am figuring things out. I just hope and pray that we manage to find a cure for this someday. This is with me now and I have to accept that and find a way round it, hence the creation of Inner Woman Wellness being born.
I want to create a community for women to find reliable and engaging information on all types of conditions, not just endometriosis. I want all women and their supporters to have access to find what they require in one place, including the products and support that they require and for the trailblazers out there who are paving the way for developments in women’s health, I want this to be your platform to shout about your successes! We want to help educate the wider world and shine a spotlight on how serious the health equality gap is. It shouldn’t be this hard and stressful for women to get a diagnosis. Treatments should be further advanced than they are. More affordable, tailored options and help should be accessible to all women.
We have got this and are all stronger together. Please let’s spread the message far and wide and help us to shape this community!