By Lauren Edwards
As March is Endometriosis Awareness Month, I thought I would share my endometriosis story and hopefully bring some comfort to anyone else suffering in silence and a bit of knowledge to those who are yet to know what endometriosis is.
For the past 30 years I have been living in denial, not willing to face the fact that I have a chronic illness. Despite having had four surgeries, numerous hormone remedies and reoccurring symptoms, I have always tried to mask my illness, treat it as an occasional unwelcome visitor and that if I ignored it then it would eventually go away. However, earlier this year, my symptoms returned with a vengeance and I have now had a diagnosis that has literally floored me.
The woman suffering is then led down a path of Band Aid style remedies or ignored and palmed off as a hypochondriac in equal measures.
Endometriosis occurs when endometrial-like tissue in its cunning disguise (this tissue – or the Hateful Bastard as I like to call it – resembles the tissue that lines the inside of the uterus) grows outside of the uterus, spreading and attaching its evil tentacles to various locations, sometimes venturing to organs such as the liver or bowel or just staying close to home and causing devastation to the ovaries, uterus and cervix. As it goes on its little path of destruction, it does so in the most physically painful and emotionally distressing way causing the host (me) to experience debilitating pain each month. Unfortunately, it can be a very hard to diagnose disease as it is often seen as just ‘difficult periods’ and the woman suffering is then led down a path of Band Aid style remedies or ignored and palmed off as a hypochondriac in equal measures.
Mine began at the ripe old age of 15. I was the last of my friends to get my period and it really bothered me at the time. I longed to join in the conversation in the school toilets about period cramps but, instead, watched with envy as my friends gifted each other paper wrapped tampons. I even booked a GP appointment to inform him that ‘something must be wrong with me’. He smiled and even attempted a chuckle as he told me that, “You should be thankful it is late as once they are here you will have another 40 years of them!” My relationship with my Doctor would hit some rocky road over the coming years on the subject of my periods but I will come to that later.
I remember the day of my first period well, excitedly informing my Mum, who literally dusted off the box of sanitary products she had been keeping for me for the past four years (she had her first period at the age of 11 so was prepared much earlier than was necessary). I was overjoyed to finally feel like a woman! However, my happiness at this milestone didn’t last long. No sooner had I got through the first few months then my periods became ridiculously heavy and painful. Not one to make a fuss (let’s just gloss over the doctor’s appointment I had made about my missing periods) I decided to just get on with it.
They were just like the women on the Tampax advert that could roller-skate and play tennis on their periods when I could barely walk.
SO WHAT if I was having to wear a tampon as well as a sanitary towel to stem the really heavy flow which I needed to change on an hourly basis. SO WHAT that I now felt faint most of the time due to the amount of blood loss and resulting lack of iron and that my pale complexion made me look like Wednesday Adams. SO WHAT if my period pain was so bad that I pretty much now walked with a stoop and had to sit down gingerly in every seat. And SO WHAT if my friends said that their periods were nothing like mine and they were just like the women on the Tampax advert that could roller-skate and play tennis on their periods when I could barely walk. But eventually I had to face facts. What I was experiencing wasn’t normal. So back to my GP I went.
We started off the appointment with the usual pleasantries, he congratulated me on now joining the menstruation club and I thanked him and then I explained that I wasn’t happy with my membership. Was it a case of my body making up for the four lost years my Mum had planned for me and perhaps I was doubling up on periods each month to make up the time? Or that because I had moaned so much about the lateness of my first one, I was now being punished with super heavy and painful periods each month for being ungrateful? He responded by saying that, “periods are not straightforward and some women will experience heavy periods and have pain more intense than other women, it’s perfectly normal.”
Now ‘perfectly normal’ is a phrase I have been told numerous times over the years and for anyone in my position my advice is to never believe it! There is no ‘perfectly normal’ as who knows what is perfectly normal for me and what is perfectly normal for all other women. We are all unique menstruating individuals. There is no perfectly normal. We are all imperfectly different. And if you feel that things are not right with your body then it is your right to find out why. Your request for a deeper understanding of your body should be ‘perfectly normal’.
I was blissfully unaware of the destruction that was silently being caused to my uterus.
My Doctor promised to solve all my period problems by prescribing me a contraceptive pill. Was this a magic pill? However, the trouble with ‘the pill’ is that it has side effects. I became anxious, tearful, argumentative, bloated, spotty (Ok I was a teenager so difficult to pinpoint if the pill was completely to blame). However, everything period wise appeared to be just peachy for a while. From my late teens and into my early 20s I was still chomping my magic pill and my hormones were chemically balancing my menstrual circle and I was blissfully unaware of the destruction that was silently being caused in my uterus. I embarked on a career in publishing in the West End and my life was all work and partying in Soho. Around this time, my Mum sadly was diagnosed with Breast Cancer but thankfully it was caught early and she was able to have the lump removed with minimal treatment. She had started her menopause and we had discussed the fact that I had been on the pill for a while now and it would be good to have a break, so I went cold turkey and retrained my hormones to do their own job naturally. It wasn’t long before the bad periods started to return.
If I wasn’t willing to go on the pill then there wasn’t anything else he could do.
Back to my GP I went. I explained how heavy my periods had become and that most months it was full on and I was unable to move for two whole days. He sympathised but tried to appease me by suggesting that at least it was only two days. Ignoring his attempt to side step me, I explained that the bleeding did go on for days with killer cramps and the mental anguish went on for weeks. He tried to persuade me to go back on the pill and said that, “if I wasn’t willing to go on the pill then there wasn’t anything else he could do.” I was now working at The Daily Telegraph. I loved my job but my health was deteriorating and it was becoming increasingly difficult to give my all when I didn’t feel like myself anymore. Thankfully, as well as an understanding editor, I also had private medical care with my job so I decided to get a second opinion and booked to see a gynaecologist.
My private consultant listened to my symptoms and within five minutes he suggested that I may have a condition called endometriosis. Endometri-what now? He explained how the endometrial like tissue (the Hateful Bastard) was wreaking havoc around my uterus and that he would need to do a laparoscopy with a view to removing any ‘lesions’. I was booked in a week later for the surgery.
The operation day arrived and I was asked to sign a consent for them to remove areas of endometriosis and any cyst/fibroids that they may come across. Basically, they were going in blind and I would find out the results after. The surgery would be keyhole so they would make a couple of incisions in my stomach and also enter through my belly button. They said that they would pump me full of air in order to perform the surgery so not to be shocked when I came out of the anaesthetic. If you have seen Charlie and the Chocolate Factory and remember the bit where Violet Beauregarde eats the everlasting gobstopper and turns into a blueberry, then you will know how I felt when I woke up groggy from the surgery and looked at my bowling ball stomach which was very sore and bruised. The consultant explained that the endometriosis was quite advanced and should have been diagnosed earlier (frustrating).
Paper knickers and bloated stomach aside, I did feel really thankful that I hadn’t been losing my mind.
Recovering from surgery to the uterus means that you cannot move your stomach and you soon realise how integral this part of your body is. It’s not just about being able to reach the Nutella at the top of the kitchen cupboard. It means you can’t get out of a chair, or in and out of a bath and it meant that I had to move out of my flat and back into my parents’ house so that they could care for me. My Dad even had to construct a pulley system on the back of their bathroom door so I could have a wee independently. I was also given some hardcore painkillers and a drug to help my stomach recover which I really can’t remember the name of but remember it had horrid side effects and made me pretty much vomit anything I tried to eat. Paper knickers and bloated stomach aside, I did feel really thankful that I hadn’t been losing my mind over the years with my period problems and in my naivety felt like I had solved the problem for good.
The surgery seemed to do the trick for over a year but, as I celebrated my 26th birthday, along came the gruesome tell-tale symptoms of the Hateful Bastard off on his pilgrimage around my uterus again. Thankfully, this time, I was able to rebook an appointment with the private consultant and within weeks (on Valentine’s Day – how romantic) I was back in surgery for a second laparoscopy and removal of further lesions of endometriosis.
Endometriosis cannot be cured by doing a rain dance in a field whilst burning sage.
I was then given the ‘good news’ that apparently endometriosis can be cured by being pregnant. Spoiler Alert: This isn’t true. Endometriosis CANNOT BE CURED by getting pregnant, or by hormonal treatments, or by surgery, or by doing a rain dance in a field whilst burning sage. Endometriosis is held at bay when your uterus is otherwise occupied growing a baby as your periods are on holiday.
Over the following five years, I had a son and boy/girl twins. Dealing with three children under five wasn’t always easy and by the time the twins were two and my patience and energy levels were wafer thin, my endometriosis decided to make its presence known again. I’m not sure if it was the fact that I was now in my 30s or that I had been through childbirth, but the pain was the worst it had ever been. On many an occasion, I can remember placing the twins in their cots and crawling to the bathroom floor, whilst I literally bit down on a towel, as the overwhelming pain came in waves and didn’t relent for sometimes hours.
I was getting to the point where I would stage a sit-in right there in his office.
I was so disappointed that it was back. I went to see my GP who tried his best to peddle me the coil, hormone pills and even Prozac to take the edge off, but I was now fearless in my determination to rid myself of this disease once and for all. I begged him for a referral. I couldn’t cope with hellish periods each month, along with potty training twin two-year olds, an energetic and insomniac six-year-old and a husband on shift work. It was surgery or nothing. He relented eventually, maybe he saw the crazed look in my eyes (he had offered me Prozac after all) or it was the fact that I was sobbing and was getting to the point where I would stage a sit-in right there in his office, but he agreed to refer me to a gynae at my local hospital and it wasn’t long before I was booked in for my third laparoscopy.
Third time unlucky in my case, as when I woke groggily from my anaesthetic, my consultant explained that the Hateful Bastard (he didn’t actually use this name) had caused quite a bit of a mess in my pelvic area and he had removed Endo lesions from a number of places, along with ovarian cysts.
The monthly cycle of hell was in full swing again and I was back on my hardcore painkillers.
Shortly after my recovery, we moved to the country and within a year I had started work at a local newspaper when my endometriosis decided to rear its ugly head again. The monthly cycle of hell was in full swing again and I was back on my hardcore painkillers, even taking a hot water bottle to the newspaper office (a tiny room above a kebab shop – the Telegraph it was not). I struggled on for a bit. Changed jobs and started working at the local High School. I started Pilates and Yoga, changed my diet and started a course of natural hormones to try and keep my illness at bay. I had a new GP and he asked me to give him a brief overview of my health, which had become pretty difficult to bullet point, but I gave it a go.
He referred me to a gynae fairly quickly. My first female gynae and although she was sympathetic, we did spend most of the consultation disagreeing over possible treatments. Again, I wanted surgery but she was reluctant. She performed a hysteroscopy which is a bit of a combination between a smear and an internal scan. She suggested that I have an endometrial ablation where the lining of the womb is lasered out by using a kind of lightsabre to dissolve it. It sounds barbaric and it is. The operation is quick but the recovery is excruciatingly painful.
It’s a bit like the end of Terminator, just when you think he has finally died, a hand pops up and starts moving.
And this brings me up to the present day. I have put into a chemical menopause to put my ovaries to sleep, along with HRT, and in the next few months (god willing and hospitals staying open) I will have surgery to remove my uterus and cervix, my left ovary and fallopian tube, along with further excision to the endometriosis; wherever it has dared to take up home. I’m thankful I have a plan. It should reduce the endometriosis from returning but any of the miniscule Hateful Bastard lesions that are still in me can still mean the return of the endometriosis. It’s a bit like the end of Terminator, just when you think he has finally died a hand pops up and starts moving. It is never really over and all you can do is keep an eye on your symptoms and hope that you can be seen quickly and believed.
I am frustrated that I am in such an advanced state of my illness and I think if there was better care for endometriosis sufferers, if I had been monitored more closely over the years, if quick fix solutions hadn’t been forced on me quite so often then maybe I wouldn’t be in this situation I find myself in. But I can’t change this and can only deal with it the best I can, be thankful for the doctors that did listen, be thankful for my friends and family that keep my mental health in check and who have seen me through many a rough patch, and encourage other women to keep talking about it and fighting for change.
And if you know someone who has endometriosis, I can guarantee that they are probably wearing a very good mask. A mask that is hiding the intense pain they are dealing with. A mask that is hiding their frustration and hopelessness. So, please, for me, celebrate those endo warriors and maybe get them some chocolate, give them a hug and tell them they are not alone.
Click here to read the full version of Lauren’s Endometriosis story or visit www.anounceofme.com for plenty more