Endometriosis – (en-doe-me-tree-O-sis) – a disease that a staggering 1 in 10 women has to live with, but almost no-one knows what it actually is and most have never even heard of it.
In simple terms it is usually when the lining of the womb grows outside the womb, forming lesions which often attach to other places such as the ovaries, fallopian tubes and bladder which can cause extreme pain, fatigue, bowel issues, bladder issues and fertility problems, to name a few. There is no known cause or cure, many women have very different symptoms and the treatment is invasive and not without its own problems. I’m pretty sure if 1 in 10 men had such a chronic disease there would be more research on it, but that’s a post for another time! I have always been quite private about my health, but a while ago I shared an Instagram post for Endometriosis awareness month and had such a great response from friends, that I reconsidered. I realised awareness wouldn’t change unless people like me who actually have it, talk about it more. It was one of the reasons for starting this blog, I’m sure everyone knows at least ten women, so if it helps one person reading who thinks they might have it, or knows someone who might have it, then it’s worth it.
I have had Endometriosis (or Endo for short,) since I was 16, but I was only properly diagnosed when I was 38 by laparoscopic surgery. At 16 I was hospitalised three times with suspected appendicitis, but I was sent away twice with a ‘it’s just her period’ (the most frustrating and most common misconception,) and given some prescribed painkillers which didn’t work. After the third time, I was given the contraceptive pill which is the main treatment for Endo which helped hugely. My periods reduced in length to five or six days, (they were previously sometimes two weeks and I became anemic a few times,) and also in severity and pain. There I stayed, on the Pill for twenty years, ignorant of the condition I had.
At 36, I was seriously considering my life choices, whether I was going to have children and how I’d go about that if I did, so I came off the Pill. I thought it would give my body a chance to regulate itself to a more natural state, and, should I be lucky enough to meet someone, I would know how it behaved without medication. I was not prepared for how my body would react.
My periods got worse each month, the familiar pain from my teens back with a vengeance that was debilitating and life altering as I couldn’t stand or move. I went to the doctors and eventually found someone who listened and got referred to a gynaecologist. My first gyne experience was not great, I had to practically beg to have the laparoscopy, (the operation that can diagnose endo and treat it through burning or cutting out the legions,) which I had in March 2014. My lesions were burnt off which I have since learnt is not as effective as cutting and can cause Adenomyosis which I now also have, and the aftercare was very minimal.
This image I’m using with permission from Sophs_endo as its one of the best visual depictions of Endo I’ve ever seen.
Within a few months of my op my pain was back and getting worse each time. I was prescribed Co-codamol and when that stopped working, Tramadol. At my worst, I was on six Tramadol a day, which made me lightheaded and dizzy. I worked through almost all of it, trying to disguise a hot water bottle under my clothes, my own stubbornness at not wanting to give in to the pain. There were a few horrendous occasions when the Tramadol didn’t work, I would vomit a lot and have to have an ambulance where I was given Entonox and once, Morphine. The pain was acute; it felt like someone was tearing through my womb with a knife, I had back spasms, hot and cold sweats and literally could not uncurl my body to stand up, spending hours rolling on the floor. I have not given birth, but it’s what I imagine labour be like. I have heard many women who have Endo and have had babies say Endo pain is worse than childbirth. These episodes would last anything from five to eight hours and the next day I would feel like I’d been run over by a bus. I went through some kind of intense pain every single month, always on the first or second day of my period, which I obviously began to dread.
During this time I decided to try and help myself with alternative medicine. I tried acupuncture, kinesiology, synthetic hormones, all at great expense, but nothing worked. I went back to my GP who prescribed the mini pill, (I was 39 by this point and most GP’s won’t give the combined Pill to over 35’s which is the best treatment for Endo). The first one made me bleed continuously for a month, the GP’s cure for this was ‘take two a day’ which I duly did for a week or so and stopped bleeding. I called back to ask what I did going forwards, as surely the number of hormones in the pill wasn’t wise to take two a day? Eventually a GP called me back and said her and another GP had been arguing about what to do with me and that it was maybe it was time to consider a hysterectomy. That was definitely the rock bottom moment. The shock that a hysterectomy was something I had to consider was winding, a punch in an already bruised stomach that I couldn’t process. A hysterectomy is obviously so final and I wasn’t ready for it, to accept that the decision not to have children wouldn’t be mine, and also, that I would be suddenly ‘old’ – going though early menopause, not a woman in her sexual prime, loving life.
That option, give over the phone, shows how little GP’s know about the condition, only a Gyne can really make that recommendation after all other treatments have been exhausted. I did go back to the doctor and went on a different mini pill which I was on for a year and a half, but didn’t make me feel good. I went back in June 2017 to say I couldn’t cope anymore and needed another operation, I was referred to Guy’s hospital which is one of the best for Endo, but I didn’t get the operation until a year later and that year was awful. I didn’t know that extreme fatigue was a symptom and I some days I could literally not get off the sofa. I’m generally a person who has a full life and is very active, so I didn’t recognise myself.
I’m sorry this post is long and maybe too graphic for some, but I hope I have illustrated that Endo is so much more than ‘just period pain’. I am actually not one of the worst examples of this disease by a long mile either. High profile women like Lena Dunham have done a lot to help recognition of the condition, Dunham had a hysterectomy at 31 and has talked openly and frankly with her usual eloquence about it, read her story here, but more people need to follow suit.
I’ll continue with this story in another post, I had the second operation in May 2018 which was much more successful and have tried to educate myself with ways to cope and improve my health which I want to share, it does get better, I promise…!