The thing about my story is that it is neither special or unique. In fact it is quite common. That is strange way to start a story I know, but perfectly sums up just how frustrating and scary it is.
Endometriosis is the U.K.’s second most common gynaecological disorder, but despite this fact, it takes on average 7.5 years to diagnose. For me, it took over 15 years.
15 years of being told that my pain was normal, something I would grow out of, would be better once I had a child or that it was just in my head. How could this be? How could my pain be dismissed so easily by health professions I trusted to help me? How could a disease so common be such a mystery to both my doctors and to myself? Why had I never heard of Endometriosis or know the signs of what to look out for in regards of my health and my periods? How could I have thought that much pain was normal?
Endometriosis was for me, a stabbing tearing feeling, a deep, dark pressure. Like bared wire twisting in and around my womb and stomach then out spreading across across my hips, down my legs and and up my back.
My name is Kaye from OhhhKaye.co.uk and I started my period when I was 9 years old. In a field, surrounded by sheep, while on a camping trip with school and it was horrible in every sense. I had felt odd all day. Tired and with a dull ache, in what I thought was my stomach, my lower back and in my legs, which I put down to stomping over fields all day with my classmates. However, that night, tucked up in my sleeping bag I suddenly awoke to the feeling that someone was stabbing me in my stomach. Nauseous, wobbly and in pain I started to weep. I remember distinctly one of the teachers in the tent next to me and my friends saying “Oh do shut up Kaye”. Feeling guilty that I had woke my teachers and friends, I got up, left my tent with my torch and went to the loos (thank heaven they had free standing loos in that field!). I was promptly sick as a dog and then, there it was. Blood. My PJ bottoms where soaked in it. I simply did not know what to do. I decided that I needed to tell someone, but they where all grumpy with me. Luckily for me one teacher had the sense to investigate where I had gone.
I can remember her face so clearly when she saw me and my current state. All her grumpiness of being dragged out of her tent in the middle of the night vanished from her face so quickly and she almost looked at me with pity. “Oh Kaye.” She said, “Don’t worry. It’s all very normal.” And that was that. I was put in a taxi cab with the teacher, driven back to actively lodge the school was staying at and had a bath, while my teacher talked to me through the door trying to explain what a period was.
Not long after that my class mates arrived back all full of gossip. Was I sick? Had I hurt myself? Someone said there was blood?
“No. I just have had my period” I said.
I was the height of curiosity then.
“What’s it like?”
“My sister has those. She said it hurts.” Etc.
“It’s normal” was all I could think to say.
Puberty isn’t kind. You are thrown so much information from either your “slightly uncomfortable” science / sex ed teacher, your parents, by text books and doctors about how your body is going to start to react and change. Your period is one of those areas where information is very generalised. I was told what will happen during my period, why it happens and the basic ways you can function while having them. I was told about sanitary products, pads, tampons etc… I was told when the pain is uncomfortable, you can have some paracetamol, and or do light exercise like swimming. Pain was normal. Everyone gets it.
So the next day, I was given paracetamol, and handful of sanitary pads and told to join back in with the activities, as it would do me good.
But it seemed from day 1, my periods where not playing by ‘those’ rules. My handful of pads where used up with the first few hours (“But I gave you enough for the whole day Kaye! You’re wasting them.”). The pain did not dull with light exercise or the drugs but instead got worse as the day went on (“Now come on. It’s only a period Kaye. Don’t be a wimp.”). I felt the pain down my legs to my toes, around my stomach and back, I felt exhausted and sick and all I wanted to do was curl up and cry. (Now come on Kaye. You are a woman now. You need to grow up. Stop all this crying.)
And this is where the trouble started for me. That voice. Those words.
I know now it was not her fault. That teacher was not a doctor. She could not have known.
However, as another women I stupidly expected her to understand what I was feeling. To see me hurting and say “I know it hurts. Don’t worry”. Instead, I was a wimp. Unable to cope with a silly, normal, little thing such as a period. Silly, weak Kaye. Oh Shut up Kaye.
So I did. I shut up.
I never told my Mum, my friends or my doctor at first, just how bad my periods where. How heavy I bled, the blood clots or how the pain would cause me to throw up, pass out or want to curl up and disappear. That I got migraines, pain when I went to the loo and at times wanted to “bear down and push” with every cramp. That I bleed for weeks on end, not days!
By the time I was 13, all my friends had now started and seemed to breeze through the whole thing. Why was I finding this also hard?
When the migraines got so bad and started to effect my daily life, I took the opportunity to tell my GP about my periods as well.
“Migraine pain and periods are not related.” I was told.
“Okay” I said, “So there are two things wrong then.”
“Pain with a period is quite normal. A lot of ladies have. You might just be unlucky. Have you tried paracetamol?”
“yes, it doesn’t touch it”
“Try it with codeine. That should take the edge out”.
“What about the bleeding? Should it be that heavy?”
“Oh some ladies are unlucky with that. Just change your pads regularly. Try tampons. ”
So I did what I was told. It was normal. I was unlucky. Just get on with it. Nothing changed.
I was aged 14 when I was first hospitalised with a period. My mum was away and my poor dad was at lost at what to do. I was taken onto a women’s only ward where I was asked over and over again if I could be pregnant. Despite my protests that wasn’t, nor could I be, I was made to take a pregnancy test as a nurse explained that the doctor thought I was having a miscarriage.
“No, this is just my period!” I exclaimed
“But it can’t be. You are having contractions” said the nurse. “Do you know what they are?”
“It’s why you want to push”.
“But this is normal isn’t it?”
“No sweetie. It isn’t.”
“I want my dad”
“He is not allowed on the ward sweetie. Doctor will be with you soon. We are just trying to find you a lady one.”
A lady doctor could not be found. Instead I had to see a male one with three lady nurses.
If I am honest, I don’t remember the talk much. Only that I was not pregnant and that he was going to discharge me with pain relief and a referral for an ultra scan to be carried out asap. I remember feeling relieved that I was home, but confused about what had happened.
My scan a few days later showed nothing… so nothing more was done. However, Mum was getting more and more worried about me. She knew something wrong. So at her insistence I went back to my GP.
Once again I was told it was normal, there was nothing was on scan, maybe I was a bit low on iron if the bleeding is that heavy. Have some iron tablets. I was just unlucky. I would grow out of it.
And so my life went on. Sort of.
I watched my friends go out, meet boys, have hobbies and a life outside of school. After a day at school, I would just want to go home. I had nothing left. No energy at all, I had used it all just to get through the day. I seemed to be constantly ill, finding myself backwards and forwards from local health centre. The receptionists knew me just from my voice on the other end of the phone. There was never need to say who was calling.
Time and time again I was greeted by doctors who carried themselves with an air of boredom.
“Well sweetie, how are you doing?”
“Never mind, these things make us stronger”
Hell, I was surprised they never patted me on the head and just said “there, there”.
I lost the joy and freedom of doing the things I loved, like swimming due to the worry of embarrassing myself in pool all because of the extreme length and heaviness of my periods. I started to get frustrated and angry on top of feeling like death warmed up.
By the time I was 17, I had been hospitalised three more times due to passing out from either pain, exhaustion or blood loss. Again, nothing could be found on a scans, blood test etc and I was dismissed with various analgesics, and anti-spasmodics.
I went back to my GP.
“Maybe you just have painful periods. Everyone pain levels are different. You just struggle. Don’t worry, it will soon go off. Maybe once you have a baby. I hear that helps.”
Being told time and time again that pain was normal, I put a brave face on it. I was to ashamed to admit I could not cope. I developed my “Happy – everything is normal face”.
I used it as a mask and sometime as a shield from the questions on why I was tired or ill all the time. I got really good at it! I made many masks, so it looked liked I laughed and joked all the time, pushing a persona of a normal, joyful, hardworking, healthy, fun, woman.
I went to college and then to art school while also working Saturdays and Sundays at my part-time job, never showing how much it all hurt. Carefully executing my daily routine of putting on “my armour” of Heat pads, pain relief pills, nausea patches, all carefully hidden under layers of clothes just to get me through the day. Endless supply of tampons and towels where needed as I needed to change both every few hours.
However, this disguise came at a cost.
Constant migraines alongside a weakened immune system meant I caught every virus and cold going. I developed panic attacks and other anxiety conditions, I wore a UK dress size 4, weighed under 40kg and I had little to no social life outside or further education or work. I could not hold down a relationship as I was terrified that they would not only see how broken I was, but how much I bled! I also truly felt like I didn’t have the energy for it all. After the pain, one of the hardest things to cope with was just how exhausted I was. And sex? Ppppfffft! I never seemed to stop bleeding, how was sex going to happen, ever!
I moved to Bath for University and made wonderful friends, but all the time I tried to hide just how bad it was all getting. Again pushing myself to do as much as I could to hold the illusion that I was normal. Working every weekend while taking part in full time studies and then a going out with friends. What every student should do right?
Every evening I would have to retire to my my room alone, put on loud music and just sob. I would say I was “dancing my stress out”, while in reality I was trying to get my pain and frustrations all out and then I would find time to fix my cracking/breaking “Everything is normal” face.
But something had started to change. While living closely with other ladies I began to realise that what I was going through could not be normal. It just couldn’t. I started to ask the University GP if this pain was normal.
“Gosh, that bad. You need some stronger pain relief. Maybe some antidepressants too. All sounds like it is all getting a bit much. Doesn’t sound like anything to worry about thou. You are doing a lot. It’s normal to sometime struggle.”
So these pills where added to my armoury. But they did not make me feel stronger, in fact these worked alongside everything else that made me feel like such a weak and useless human being. I needed all this stuff to get through a normal day.
I graduated and went to work. Nothing changed except the feeling that I was stuck in an endless cycle of work, pain, exhaustion and loneliness. So I broke that chain by packing my bags and went traveling.
This was the only time in my young adult life that things got easier. A change of diet, lot’s of swimming in the sea, walking while surrounded by stunning backdrops was food for the soul and lifted my mood and spirits. I am not saying I still didn’t struggle. No, there where bad days. Some really bad days! But I put on a did of weight, I remember being so proud that I weighed 45kg for my bungee jump! One day just before the new year, I was having a horrific period with a margarine and once again found myself staying on farm! The pain so bad I worried I would weep and disturb others in the dorm room. Two of the girls came in to check on me later on in the evening. They said something to me that I would never forget.
“That…. That is not normal Kaye. Are you sure it’s a period? You look terrible. Can we get you anything?” – “Are they always like that? You should tell someone when you get home.”
Two women, whom I had only known for a few days just told me that what I was going through was not right. So was I right. Was this something else? I will add here, that these two women are still a huge part of my life even now and for that I am so greatful.
So when I returned home I went back to my GP and again, nothing. No response or reaction to my calls of this is not normal or why is this happening. Instead the question was raised on why I had I stopped the antidepressants.
“But I am not sad! I am in pain”
“They will help”.
And I was put back on them.
But months after being back home, all the good work I had managed to gain while traveling was undone.
My poor Mum tried everything she could. I finally opened up to her and told her just how much and for how long I had been struggling. She was a tower of support.
I found myself in a temp job sitting for hours behind a desk, slowly feeling that my world was disappearing again. I lost weight, the pain became more and more acute, margarines returned full force along side the nausea and sickness. I tried going to a gym to keep active, but the exhaustion made it harder and harder. The bleeding suddenly got so heavy I was in a constant state of worry to would show. I was changing tampons and pads worn together every 2 hours. The clots where so large that once again I got these “false labour cramps” and started to bare down and push during my period.
I stopped going out or seeing friends. I was tired and fed up trying to explain, or lie about why I was ill all the time. Why I seemed to be taking pills all the time. Why I was not eating with them or being sick softly after. Why a carried the blasted wheat pack everywhere with me! I really thought they would not believe me. That this could was being caused by just a period.
So was this it?
Would I go through my life constantly bent double, vomiting and exhausted from the pain and it was with that thought it real depression crept up and got a hold on me.
Just over a year later, my temp job was now full time job with a growing career in management but I had been running on empty for so long now, that there was just no hiding from it and I was signed off with work. Thou I was depressed and so very tired all he time, I knew the reason why, but I just could not seem to get anyone in the health profession to listen me. Then, after a disastrous return to work, I took myself from the railway station to my GP office and begged to see someone, anyone.
My regular GP was away; would I like to see the new GP? It turned out that GP was to be my hero. I sat in the room with him, sobbing and trying explaining what had just happened and then I went back to the start of it all and explained about the history of my periods.
“Have you not see a gynaecologist?” he asked. “No” I replied.
He picked up the phone called the hospital and said he need an appointment now. He got one for 3 days time.
“Go. Take your Mum. I am signing you off work. Just rest. Relax. We will get this sorted.”
What was this? Someone believed me! Someone who could possibly help me. Thou there a part of myself that still believed that they would dismiss me as just weak, ill and feeble. That there was nothing wrong.
The gynaecologist, who took one look at me, my history and after one very failed attempt of an internal examination exclaimed “It’s an exploratory op for you young lady” and that was that. At no time was any suggestion made that endometriosis or any other condition might be a cause, at this stage, but I didn’t care. I was being taken seriously! Someone from the health profession believed I was in pain.
I was booked in for both a Laparoscopy and Hysteroscopy in just under two weeks.
It was shocking to be still groggy from anesthetic and to hear the Doctor asking me if I have a partner and looking sad when I said “No”. He then said “ You want kids?” – “Yes” I answered. “It’s a case of sooner rather than later…“ he replied. It dawned on me he was referring to my fertility and I suddenly felt numb. This was serious.
My exploratory op had become more complicated once the surgeon had seen the damage. After two and half hours of surgery, a full D&C, extensive laser treatment, two very badly damaged ovaries and a fitted Mirena coil… it was Stage 4 Endometriosis. The Mirena coil was my best cause of treatment and was given my 5 year window for a child. How ironic that the very process that doctors had once recommended would relieve my symptoms, was now the one thing that may never be available to me.
Post surgery I had so many questions and I was left feeling so very angry and almost numb with shock. Secretly after all these years of being told “It was nothing” I had honestly expected them to find nothing.
However, there it now was. A reason for my pain. It had a name. It was not in my head nor was I feeble. But why didn’t they listen sooner? Would it had made a huge difference? Will I ever be a Mum now? My god. What had just happened to me?
I had hundreds of questions, but one thing had become every clear. The damage had been done. Not just to my internal organs, but to my whole life. To my friends, my reputation, my social life, my career, my family and even to my chance of a future one. I grieved for what I had lost and what I may continue to lose.
My anger and frustration grew further once I realised that the condition of Endometriosis and it’s slow diagnosis process was a common problem.
One quick google search once I was home and there it was. Forums filled with hundreds of ladies whose stories mirrored my own. Support groups, Facebook groups, a UK charity, facts, figures and statistics. I was shocked.
Millions of women had this. Almost all of them had to fight to be seen, understood and helped. So many dismissed, ignored and fogged off by doctors and health professionals.
Which brings me back to my opening paragraph. My story is not unique, but my story is a true representation of what it is like to have Endometriosis and not been taking seriously enough when I said I was in pain and needed help with managing my period.
But just because my story isn’t special, it doesn’t mean it should not be heard. In fact, it means that it should be heard, alongside the hundreds, thousands of others worldwide. This can not simply go on.
My life has completely changed since that operation and diagniosis. I am married, I have a great group of supportive friends, (many of which of course knew something was wrong and told me off for never telling them just how bad it was). I weight 70kg am a UK dress size 10/12, I swim, do yoga and enjoy going out again. I run my own business and have a career ahead of me.
Yes, I still have bad days. I still struggle with pain and exhaustion, but they are far fewer and less disruptive then they where. I have had other issue related to the surgery and the endo. I sometime still get a moment of hurt/ache when I see friends or family members surrounded by their new babies, but it passes quickly as I get to spoil the cute bundles, hug them and play with them but I also get to give them back and have a lie in at the weekend!
But mainly, I have learnt to not stay silent and to tell my story in the hope that it will help someone to find their answers.
I help the UK charity Endometriosis UK with their design work and have met up with so many inspiring women on marches, forums, sets of video documentaries and through my own awareness work like my (2011) photo-shoot called “The Roses of Endometriosis” or my new (2016) eBook “Living with Endometriosis” which you can download totally FREE and is full of tips from me and health professionals on looking after yourself while living with this condition!
Visit this page to download your Free PDF book
Do leave me a comment if you do download it!
I have a defiant attitude to living with this condition, its chronic pain and emotional stress; I will continue to be as strong as I can and not let endometriosis define me.
I’m learning to accept the diagnosis and finding ways to support others and as well as myself.
So I will ask you to share/like this story as well as writing and sharing your own.
Let’s be heard. Let’s make a change. Let’s End Endo.
Love and hugs