For me, it’s normal to live with the type of pain that feels like your insides are being forcibly pulled out of you, when you can’t leave the house because you’re in agony and can’t string a sentence together.
It’s normal to keep a bottle of morphine by the side of your bed for the moments when you’re incoherent. To have to cancel plans and let your friends and family down at a moment’s notice. To have to ring an ambulance because you can’t function and know the only option is intravenous pain relief.
It’s normal to have operation after operation and to live with all this knowing that there is no cure.
I’ve suffered from endometriosis since my periods began at age 11. In hindsight my mother suffered from the same condition. She normalised it, with stories such as visiting the school nurse and being medicated with morphine.
I was always mindful of the heaviness of my cycle. I danced a lot as a teenager and was on all of the school’s sports teams and invariably missed events if they coincided with my period, which was of course hugely limiting and also disappointing.
I didn’t speak to anyone about what I experienced, no one around me discussed periods, and I assumed it was usual to hurt and struggle to take part in activities at that time of the month.
The symptoms got increasingly worse after I had my two children in 2004 and 2006. I experienced extremely heavy periods and was prescribed Tranexamic (a blood clotting agent) and Mefenamic acid (a strong painkiller) to help cope with the symptoms when my children were toddlers.
Despite the strength of these drugs, no one thought to refer me to a gynaecologist and investigate further. It wasn’t until a miscarriage of a much-longed-for third child in 2014 that my condition worsened to the point where I couldn’t leave my house during my period as the aching was so hideous and the bleeding so heavy.
I finally discovered what was wrong by researching my symptoms in early 2015 at the age of 36.
It didn’t take long for me to be able to identify that I had all of the symptoms of endometriosis – where tissue similar to the lining of the womb grows elsewhere – it’s just such a shame that it took more than two decades for the medical profession to be able to help me.
Fast forward several months to later in 2015, when I came around alone after an exploratory laparoscopy. The consultant said that I did indeed have endometriosis and that it was stage 4 – the most severe and advanced type – as well as adenomyosis, which is where the tissue that lines the uterus grows instead in the muscle of the uterus, which can cause severe pain.
The relief of being diagnosed was palpable, but I was also frustrated that I’d suffered for so long.
There followed many consultations, paid for privately to speed up the process, and I was told that my choices were stark. I could continue living with this excruciating condition or I could have what my gynaecologist tactfully referred to as a ‘clearance’. In other words, I was offered a hysterectomy, which would permanently rob me of my dream of that third child.
While I made up my mind, I was given an injection called Prostap, which essentially shuts off a woman’s ovaries and thus stops the discomfort within a few weeks.
But the Prostap injection created huge problems of its own as I was plunged into a premature menopause and the symptoms arrived within a month.
I remember going on a big (nine of us in total) family holiday to Florida a few weeks later, while being newly headfirst into the menopause, at 36, with absolutely no idea of what was happening to me.
No one at the hospital had offered me any information on what would happen once the injection had been given.
The hot flushes that holiday were horrific and I’m sure my children have not-so-fond memories of my mood swings.
The subsequent decision to have a hysterectomy was almost immediate; by this point I had suffered with so much agony that I would have done anything to take it away. It was an easy decision in that respect, but the impact of no longer being able to conceive took me years to come to terms with and a great deal of counselling.
I had a hysterectomy the following year. This left me torment-free for a year before the endometriosis grew back and the pain returned out of the blue one day.
The emotional impact was huge; I had viewed the hysterectomy as a last resort and was starting to make my peace with that. The impact of knowing that even this was a waste of time was devastating. At the time I was travelling all over the country for work and the pain returning in this way left me feeling incredibly vulnerable.
I lost count of the amount of times I was stuck alone in a hotel room, doubled over and not knowing what to do. I remember having to ring my then-husband to drive from Warwickshire to Guildford, abandoning a very important meeting to climb into the back of our car with a bottle of morphine and sleep all the way home.
These incidents were not isolated, and it felt doubly hard being self-employed and trying to avoid having to explain to near strangers what was happening to me when most people hadn’t even heard of endometriosis.
Now, I can go months before a flare-up hits me like a tornado and my life is once again placed on hold. I live in limbo.
I’ve lost count of the occasions I’ve missed over the years, the family holidays ruined; the number of times my children have had to visit me in the hospital because their mummy was ill again; the concerts I’ve not been able to attend. It’s so incredibly sad that this has become the norm now for my children, as well as me.
I’d like to say that there’s a completely happy ending to my story – that after seven operations, it’s all over and I’m pain-free. But I’m not.
In desperation, I underwent an emergency oophorectomy (where ovaries are removed) in 2019, as it’s an additional place where tissue lining can grow. This meant that at the age of 40, I was in a surgical menopause.
I’ve not even received a follow-up appointment and the only way I can manage the symptoms of menopause is through taking four times the normal dose of HRT and paying privately to see specialist doctors.
I still struggle when someone routinely asks when I give blood for example whether I could be pregnant.
I have to contend with disturbed sleep, temperature fluctuations, joint aches, dry eyes and crippling fatigue. There were times when I felt that I was losing my mind and the only way I could deal with what was happening was by throwing myself into my work and almost pretending it wasn’t happening.
It wasn’t until my marriage ended after 19 years, two years ago that it fully hit me how hideous the whole experience has been.
If I could ask for one thing: it would be for better education and increased awareness of this terrible disease. Had I known what was happening to me sooner I would have tried for a third child much earlier. Thankfully, I had my children in my twenties and I was told that I would most likely have struggled had we left it any longer. I now have private medical insurance for my children and I took it out as soon as I was diagnosed in 2015. I strongly feel that the NHS has let me and countless other women down and I can’t risk the same thing happening to my daughter.
My story is by no means unique – endometriosis will impact someone that you know, as it’s so common.
I’m a self-employed education consultant, and a big driver in working for myself was the fact that I felt that it would be unfair for me to be employed and to need so much time off.
The financial uncertainty weighs heavily on me as does the burden of not knowing when the next flare-up is coming.
In all, I live a happy and fulfilled life – and I enjoy supporting others as a volunteer with Endometriosis UK – but with the knowledge that things could change at a moment’s notice.
And that’s not normal.
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