By Monika Armet
March is the official endometriosis awareness month. As a person who suffers from it, I decided to share my story, and increase the knowledge of this condition, as many people still don’t know about it.
Firstly, here are some facts about endometriosis:
Every month, a female ovulates – an egg is released from an ovary, but if the egg doesn’t become fertilized, menstruation occurs: the lining of the womb breaks down causing bleeding, or what is commonly known as a ‘period’. In a ‘normal’ scenario, blood (or cells) is released out of the female body, however in endometriosis, some of the blood flows upwards into fallopian tubes and stays there. These cells react to menstrual changes of the female body and they also bleed, however this blood has no way of escaping, therefore it causes inflammation and pain.
To give you an idea of what I’m talking about, here is an image, courtesy of Mayo Clinic:
In some instances, the cells are also found in the bladder or the bowel.
Endometriosis affects 1 in 10 women, where the average time of diagnosis in the UK is 7.5 years, and in Poland, where I am originally from, it takes 10 years to be diagnosed. Symptoms of endometriosis include: painful and heavy periods, painful ovulation and intercourse, infertility, depression, fatigue, bowel and bladder issues – naming only a few, as each woman is different so symptoms will vary. Some women will experience all of the above symptoms, some only a few. Most of the above apply to me, with the difference that I am sore every day – every day is a ‘period’ day for me, even though there is no blood. The other bothersome symptoms of endometriosis, for me, are: exhaustion, as I am tired most of the time, and I need at least 9 hours of sleep to function; and mood swings: I have to take antidepressants for that.
Currently, there is no cure for endometriosis.
And now back to my story. We are going back to 1998, the year where it all began.
Two months before my first period, I was in excruciating pain in my lower abdomen – I was bent in half, clutching my stomach, and tears were streaming down my face. The school nurse upon seeing me, phoned my mum, who came straight away and we went to hospital. Mum was worried I might have a burst appendix, and the doctor sent me for an ultrasound, which revealed an inflamed ovary. Everyone breathed a sigh of relief, I was discharged home and told to rest. Looking back, I was probably experiencing my first ovulation.
My periods were always heavy and painful. It wasn’t just the lower abdomen that was sore, it would be the whole of my tummy area, as well as lower back (what I call ‘the belt of pain’, as it encompasses my body in a circle). I remember that when I was at school, I went to see a nurse for some painkillers for the pain – she asked me where exactly I had the pains. I told her: lower and upper abdomen and the pain goes round to my lower back, to which she frowned and scolded: ‘When you have a period, you don’t get a pain in your back. Don’t lie to me. Now head back to the class!’ And that was it – I never got the painkillers.
This was the start of my ‘battle’ with the doctors, I’ve met some right ‘stinkers’ over the years, who told me to ‘have a bath’, ‘take a paracetamol’ (like they thought I was stupid and never tried that before?) or one even had the audacity to tell me that ‘it is all in my head. Mind is a powerful thing, so think happy thoughts and the pain will go away’. At that moment my only thoughts were to slap him.
I was lucky enough to have two children: Lily, who is 8 and Jake, who is 6. I was so happy when I was pregnant, as there were no more periods and pain! However, because I didn’t breastfeed, the periods returned 8 weeks on the dot on both occasions, and with a vengeance. Ever since 2011, my condition deteriorated very quickly. As well as feeling extreme pain, I would often feel faint and nauseous – one time, when I was in a supermarket, I had to sit down on the floor as the pain got so bad.
Some of you might wonder how I managed the pain for all these years. Well, I’ve tried heat, so hot baths, hot water bottles and hot patches you stick to your body (I spent a small fortune on them), I’ve tried painkillers: Mefenamic acid (which didn’t work), paracetamol and ibuprofen combined – but I got to the stage when I was overdosing on painkillers because the pain was so bad. You’re allowed to take 16 paracetamol and ibuprofen tablets each day – that’s 32 tablets a day. I was doing nearly double than that and I was still in pain.
I’ve tried every contraceptive method that I could: pill, implant, which didn’t help at all, the two of them combined, which sent me on a warpath with the world, as the hormones circulating in my body turned me into a fire breathing dragon. Then in 2015 I tried a Mirena coil, which worked wonderfully for 6 months: no periods, one or two days of pain a month. One day in October 2015, the pain returned. I was sore every day. I had an ultrasound which revealed nothing (you can’t see endo on the scan). I was referred to a gynaecologist, who said that the only way to see what is going on is to have laparoscopy (key-hole surgery).
In March 2016, after 18 years of painful periods, I finally got a diagnosis of endometriosis. I also had a Mirena coil, and for two years I was pain free, with the occasional twinge for a day or two. In 2018, the pain returned – I was sent for an ultrasound, which revealed that one of my ovaries was ‘stuck’ to the uterus wall. I was also advised by the gynaecologist to try Zoladex injections for 6 months, a GnRH analogue, which stops producing oestrogen and puts the body in a menopause-like state. I was offered HRT patches to combat any unpleasant symptoms. Zoladex worked to a certain extent – it stopped the pain for most of the time, however it had left me with bad acne and a dodgy stomach, where I had to take Omeprazole on a daily basis. You can only have GnRH analogues, like Zoladex for 6 months at a time, because of the increased risk of osteoporosis.
From January 2019, I’ve been keeping a pain diary – in those 69 days, 10 of them were pain free. The other days vary – sometimes it’s just the stuck ovary that is painful (and that would be a great day for me), but the other days it is the whole shebang – paracetamol and ibuprofen don’t work for me anymore, as my body got used to it. I have to take codeine instead. I first started on codeine in 2013/2014 and I would take 15mg at a time, now 45mg. The max I am allowed to take at one point is 60mg. One day, my body will get used to 45mg and I will have to up the dose. I dread this day.
At my last visit with the gynaecologist, he mentioned a possibility of another op, to ‘free my ovary’ and see if there is any more endometriosis, so it could be removed. However, because I’ve had Zoladex, which masks the appearance of endometriosis, I’ve been told to wait until May to see the gynaecologist again, and then I will have to go on a waiting list for another laparoscopy. So probably I will have to wait until summer until anything gets done.
What I know what won’t get done is a full hysterectomy with ovary removal – I was told I would hit surgical menopause straight away and I am too young to deprive my body of oestrogen, and HRT won’t help with that. I’ve done my own research too: early menopause carries many health risks, such as a higher likelihood of early strokes, heart attacks and dementia. I would like to be sane when I am 70 and enjoy my retirement! Removing the uterus but leaving the ovaries wouldn’t help – it’s the ovaries that are the ‘problem’.
For now, I wait. I’m turning towards alternative therapies in the meantime. I’m currently trying some essential oils and using different blends. So far, I’ve found a blend of geranium, nutmeg, rose and clary sage oils to be soothing and relaxing (or it could be a placebo effect, who knows).
The story has been written to raise awareness of this condition – if you think you may have it, don’t suffer in silence. Go and see your GP and get help. There might be no cure for endometriosis, but there are ways to manage the condition. I remain hopeful.
For more information, visit https://www.endometriosis-uk.org/