For the past 30 years I have been living in denial and attempting to navigate through a ‘normal life’ and not face the fact that I have a chronic illness. My name is Lauren and I have Endometriosis and Adenomyosis and 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.
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. Each month when you have your period, the Endometriosis cells build up, break down and bleed in the same way, but unlike your period, it has no way to escape. Then, 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.
This year, having endured eight months of excruciating pain, lengthy begging phone calls to my GP (trust me to get a flare up during a Pandemic), a panicked blood test result indicating the possible presence of Ovarian Cancer, I had an ultrasound which revealed that I have a very sizeable cyst (also known as an endometrioma or chocolate cyst) on one of my ovaries, which we have named Colin (not the medical team but my children and me). Following this, an oncologist gynaecologist sent me for an MRI which then confirmed the presence of Colin and that he and his Endo lesion friends had caused my ovaries to ‘stick together so that only one was visible on the scan’, further lesions of deep Endometriosis in my pelvic area and on my bowel as well as Adenomyosis in my uterus and lots of other complicated medical terms that I may need to start re-watching ER in order to understand what is actually wrong with me. It feels inconceivable to me that there is so much going on in there which has been left undiagnosed for so long.
For anyone who also lives with Endometriosis or Adenomyosis, you will know that it is often a fight to be heard and understood, that you need to become an expert in the field of gynaecology as most doctors still do not understand this disease. Frustratingly, there are no regular check-ups to monitor your illness and therefore when you do finally get a diagnosis your condition is often advanced and all very complicated. I have lived for 30 years with this illness and it has been a fight at every junction to achieve the care that I should automatically receive and I would like to see this change for Endo sufferers like me. So, I have decided to share my story and to hopefully bring some comfort to anyone else suffering in silence and some knowledge to those who are yet to know what Endometriosis is.
It all began with my first period 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 and instead watched with envy as my friends gifted each other paper wrapped tampons. I even booked an appointment to see my GP 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’. I managed an uncomfortable smile as, well, if he wasn’t worried then why should I be? 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 and how I excitedly informed my Mum that ‘there is at last blood in my underwear!’ She then 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. SO WHAT if I was having to wear a tampon as well as a sanitary towel to stem the really heavy flow and also convince most of my teachers that I didn’t have a bladder problem when I needed to change my sanitary set up 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 with one of his smiles and then said 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 deeper understanding of your body should be ‘perfectly normal’.
My Doctor went on to suggest that if I was really suffering I could solve all my problems with a magic hormonal pill and although this is a contraceptive pill (and I was only just 15 and my Mum was sitting with me) he pointed out that I was taking it purely to ‘sort my periods out’. Wow, a magic pill, I was so up for this. All my problems solved by just taking a pill every day. Or so I thought. See, the trouble with contraceptive pills is that they have 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 (I had changed brands at this point – onto a mini 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. Now, I’m not saying that the pill was a cure but rather a really good disguise for what was really going on inside. My periods started to become increasingly heavy again and very lumpy and I was back to doubling up with my tampon and sanitary towel combo. My commute to work was about 50 minutes, on the London Underground to Tottenham Court Road. On one occasion, during my period, whilst stood on the Central Line, I flooded straight through my clothes. Thankfully, I was wearing a long raincoat so could mask my stained clothes but had to then stop to buy a new outfit and find a public toilet in the train station to change.
WARNING – Yucky bit coming up. The bleeding was nothing like I had experienced before, I was passing huge lumps and thought I had passed my own kidney at one point. Along with this delightful experience, I was also passing bright red blood. The pain was far more intense as well. I wasn’t just doubling up on sanitary products now but also with pain relief, paracetamol and ibuprofen chasers were the norm as I tried to manage the pain that was purely unbearable at times. The best way to describe it was like a pinching pain, which was also stabbing, with a burning sensation inside and also a dragging feeling. It didn’t make any sense. I missed my bog-standard period cramps. There were also additional symptoms, I often felt nauseous during my period and exhausted in a way that wasn’t due to too many nights out but more of an internal fatigue – a jet lag feeling but without having been on holiday.
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 2 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 but I didn’t want to mask the problem as I felt like something else was wrong, but he 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 5 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. I then went to see my Doctor in smug mode with lots of research that I had collated on Endometriosis. He agreed with the diagnosis and explained that he was not an expert on this condition and it’s not always easy to detect it from a patient’s explanation. Now I really don’t wish to blame my Doctor completely as I do believe the problem with women’s health in general is that there really isn’t enough funding and research carried out into Endometriosis and they must be inundated with women complaining about their periods. However, 1 in 10 women are diagnosed with Endometriosis so how did he not even consider this as a possible cause to my misery?
The operation day arrived and my consultant explained that the scans he had taken did not give a very good indication of where and how the Endometriosis had spread so 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 bellybutton. 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). The Hateful Bastard had suctioned itself to my stomach which was why the pain had been so intense and the blood had been so red. He had removed an extensive amount of lesions throughout my pelvic area and said the recovery would be quite painful.
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.
At my follow up appointment, my consultant gave me the unwelcome news that Endometriosis is a chronic illness and would come back. He recommended that I started thinking about having children as soon as possible as my chances of conceiving or even carrying children were now reduced. However, at this point in my life I was living with my girlfriends, working in my dream job and enjoying the single life. My biological clock should not be ticking at the age of 24!
The surgery seemed to do the trick for over a year and as I celebrated my 26th birthday, along came the gruesome tell-tale symptoms of the Hateful Bastard off on his pilgrimage again around my uterus. Thankfully, this time, I was able to rebook an appointment with the private consultant again 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. In my follow up appointment, my consultant put further pressure on me to consider trying for children as my chances of falling pregnant were even more unlikely now. I was in a serious relationship and thankfully my partner was very understanding that we may not be able to see children in our future together. So, we stopped being careful. And within one month, whilst I was on holiday in America with a friend, I discovered I was pregnant! It was a huge shock and not the best timing. I was a year into a new job at ITV News and I wasn’t even living with my partner at the time, but it also felt like a miracle gift after what I had endured.
I went to see my GP who gave me 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. But as soon as the baby is born and your periods return then your hormones are back and the Endo inflammation makes a comeback. But that was the last thing on my mind. I was now terrified of how my damaged uterus would cope over the next 9 months, it had been lasered twice now and my chances of miscarriage were heightened, so I was paranoid and coddled my bump more protectively than Meghan Markle whilst on my daily commute on the central line. For those of you that have travelled the London Underground during pregnancy, it is not always a welcoming experience. Very seldom are you offered a seat and you have to engineer ways in which to be noticed. On one memorable journey, I was waiting on the platform at Liverpool Street and had let three packed central line trains go by when a London Underground operator came up to me and asked if everything was okay. I explained that I was nervous about being barged in my bump so was waiting for a quieter carriage. As the next tube came out of the tunnel, he grabbed my arm and got on the train with me and said loudly ‘this young lady is pregnant and needs a seat to Chancery Lane, please may I have a volunteer.’ As I turned a shade of scarlet, about six seats were offered to me. I thanked him and sat quietly in a seat cringing for the next six stops.
On Christmas Eve we welcomed our son William, a healthy beautiful boy. Endometriosis was the furthest thing from my mind as I was now under the misinformation that as a parent I was now cured! Needless to say, my periods did return to unmanageable after a short while but I found ways to ignore my symptoms, as surely this wasn’t Endo. I found that my monthly cycle was now accompanied with irritable bowel symptoms, headaches, nausea, fatigue, anxiety, pain and bloating. Like a weird collection of the seven dwarves. But still I chose to ignore these symptoms and put it down to working part-time and dealing with a baby. I had put the birth of William down as a mini miracle, not exactly the second-coming but close and had accepted our family unit of three. A year later, I discovered I was pregnant again. We were overjoyed. Unfortunately, our celebrations were short-lived as 6 weeks later I sadly miscarried. I was convinced that this was further proof that William would be our only child.
However, within a year I was pregnant again. The morning sickness came throughout the day, my stomach popped out almost immediately and I was terrified that I wouldn’t be able to carry this child too. I was working evenings as a sub-editor at The Times from 6.00pm till 2.00am three evenings a week and I was finding it impossible to cope with the early pregnancy hormones, night work and a toddler during the day. When the day arrived for my scan I was stunned to discover that we were expecting twins! Me, the one with the bad uterus, the probably won’t get pregnant one, the let’s be thankful for one child, would now be a mother of three! The pregnancy was tough but we welcomed a boy and a girl into our household the following August.
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. Now, in between juggling the parenting of three young children, I had to also deal with debilitating pain and heavy periods. 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 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 did offer 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. My first experience of cysts, these were Colin’s grandparents perhaps but they were small and caught early. I had agreed that I would have a Mirena coil inserted after the surgery as this would release the hormone progesterone which would thin the lining of the uterus and partially supress ovulation and apparently stop Endo from returning. Another promise of a cure! Remember what I said earlier – there is no cure – but hey a girl can dream!
As I recovered from yet another surgery, I began to find myself with some newfound unsettling symptoms. My heart was beating irregularly, I was grinding my teeth, I felt wired, I couldn’t sleep properly, I was losing weight and I was really anxious. I went to see my doctor. I had a blood test and he referred me to a heart specialist and I was told to wear a 24-hour heart monitor. The results were clear and my heart was fine apparently. But my heart beat was not. It was horrible, constantly jumping and I was obsessed with it. Every time I tried to relax I could feel it and hear it more loudly in my ear. I then found that I was feeling faint all of the time. Back to the doctor I went. My blood pressure was very low and I had more bloods taken. About a week later, I was at a Superhero party with my twins and whilst trying to wrestle my youngest son back into his Batman costume, my mobile was ringing on repeat. I was eventually able to answer it and my GP was on the other end asking me where I was? He said that my blood results had returned and my thyroid was ‘off the scale in overactive mode and I needed to get to the hospital as soon as possible’. He had organised a bed for me and asked that I get to the arranged ward straight away. I rang my husband and we dropped the kids at my parents and sped to the hospital. I was then subjected to a day full of tests from the standard to the ridiculous. The standard being blood tests and blood pressure and the ridiculous being asked to walk in a straight line whilst touching my nose (was I suspected drunk driver in the USA?) and then having my knee tapped with a tiny hammer and eventually a CAT scan. No-one would tell me what was wrong and I was convincing myself of a brain tumour.
Eventually, it was confirmed that I had an extremely overactive thyroid so I was referred to an Endocrinologist (different kind of Endo) and prescribed a huge amount of drugs to try and calm my thyroid. No-one seemed to understand how my thyroid had spiked the way it had. I decided to do my own research and started looking for links between Endometriosis and an overactive thyroid and there were many. Lots of Endometriosis sufferers described the Mirena coil side effects as ‘hellish’ and there were numerous connections of Thyroid problems. I contacted my Endocrinologist to discuss it and she refused to believe the link. I asked my GP, who said that the hormone released each month was so minute that it couldn’t be the reason for my overactive thyroid. I had only had my Mirena coil for six months with the view to keep it in for 5 years but I wanted rid of it immediately. My doctor tried to persuade me to keep it and that I was wrong about my theory, but it was my decision and so I had it removed. Within a few months my symptoms had stopped. I had a blood test and my thyroid levels were normal. I came off the thyroid medication and was discharged by the Endocrinologist. I still have my thyroid checked regularly but it has never spiked again yet still my GP would not agree that the hormonal coil was the reason.
Shortly after my recovery, we moved to the country and 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. See, the thing is with being a sufferer of Endo is that you don’t want it to define you in life. I didn’t want to start taking time off work in a new job. I just didn’t feel like I could be honest about how bad I was feeling. I didn’t want to be seen as weak even though when you suffer from Endo it is definitely the opposite. My pain threshold was super high now and my ability to cope with heavy periods had become the norm.
However, when my best friend turned 40 we decided to go away to Bath for the weekend and I treated us to a spa day at a prestigious spa hotel with four swimming pools (including a rooftop pool) and amazing facilities. Of course, when there is something this perfect to experience, my period was bound to arrive that weekend too. My bestie was also on her period and it quickly became clear that our monthly experiences were poles apart. She was not bent over popping painkillers, nor was she changing a doubled up sanitary set-up on an hourly basis. She was horrified at how I was suffering. We went to the spa and I was unable to go in any of the swimming pools and spent most of the day panicking about staining the plump white dressing gown that we had been given to wear. It was time, yet again, to go back to the doctors and get back on the road to ridding my body of Endo. 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 hormonal treatments. The trouble I have always found with having Endometriosis is that you always have to fight your corner about how bad it is. Most doctors I have been in conversation with will try and trivialise my symptoms and exhaust all hormone treatments before investigation options are even on the table. I have always felt (and have voiced this) that this is the wrong way round. Surely an investigation should be paramount before any treatment is discussed, but with Endometriosis it seems that this is not the case.
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 had 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. She said that this would stop my period for 5 years and by this time I would be 45 and could discuss an hysterectomy. She also said that the ablation would stop my Endometriosis. Another cure! Remember there is no cure!! I hadn’t heard of ablations before but felt like this could be a great option for me. The trouble is for most sufferers of Endometriosis, as it feels like there is no interest to solve it, we tend to put all our eggs (not those eggs) in one basket and believe what we are told without question as why shouldn’t we? They are the experts. But I know now that the ablation definitely was the worst thing I could have done as it then masked all of my symptoms thereafter and allowed the Endometriosis to become Adenomyosis, which is where the Endometriosis becomes deep set into the uterus and a hysterectomy is then the only option.
And this brings me up to the present day. I have started Zoladex injections each month to put me in a chemical menopause and I am also taking the HRT oestrogen pill Tibolone to counteract any menopausal symptoms. The Zoladex will apparently shrink my uterus and slow my Endometriosis and stop Colin from getting any bigger. The next steps are in three months (god willing and hospitals staying open) I will have surgery to remove my uterus and cervix, my left ovary and fallopian tube and Colin can take a long walk off a short pier. I will also have extensive surgery on the Endometriosis that is now twisted around my bowel. I should expect a team of three surgeons, a long surgery, a shedload of drugs and I expect a tough recovery. I’m thankful I have a plan. It will help and the hysterectomy 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 who have seen me through many a rough patch and encourage other women to keep fighting for change.