Being Diagnosed
I want to share with you my experience with an illness that has affected my life since I was 18 - well actually I was diagnosed at 18 but the symptoms started when I was 16. During these years, I was in the process of completing my A levels and found that I was becoming increasingly tired at the end of the day. This was accompanied by periods that were becoming increasingly more painful, heavier and lasting for longer. My sister suggested that I go to my GP and ask them to check for endometriosis. She had been diagnosed a few years earlier. So I booked an appointment and shared my symptoms with the GP - I asked if it could be endometriosis as my sister had it. The GP said that he would refer me to the hospital for further tests but pointed out that endometriosis is not hereditary so it may not be endometriosis at all! (For those of you who know about this illness, you may already be spotting some of the misinformation I was given over the years but I want to tell the whole story as it happened!). I was prescribed some tablets to reduce the heaviness of the periods and tackle the pain as by this stage, normal painkillers were having no effect!
A few months later, I attended a hospital appointment and was informed that the only way that I could be diagnosed with endometriosis would be through keyhole surgery so I was booked in to have the operation a few weeks into my first term at university.
Let me pause here to explain what endometriosis is.
"Endometriosis is a gynaecological condition where tissue similar to the
lining of the womb, grows in other areas of the body, most commonly in
the pelvic region. This tissue responds to hormones in the same way as
the lining of the womb but with no outlet it can cause inflammation,
scarring and adhesions, leading to severe pain and many other symptoms."
(Taken from the Endometriosis UK website)
This is a very basic explanation but I will explain how it affects my life in more detail later. In October of my first year at uni, the doctors operated and confirmed that I had endometriosis. They used lasers to burn away the patches they could see and then prescribed a six month course of Zoladex.
Zoladex Treatment
Zoladex is a monthly injection that deposits a pellet in the fleshy part of your tummy. The pellet slowly releases chemicals that puts your body into a pseudo menopause. Yes - at 18, I experienced six months of hot flushes, night sweats, insomnia and excessive tiredness. It was brutal but so long ago that I don't really remember it clearly. I do remember that excessive tiredness and insomnia are not a good mix at all! During this time, I asked the GP if endometriosis could affect my fertility but I was told that I was only 18 and shouldn't worry about such things! The course ended - I became a normal teenager with normal hormones and my periods became more manageable. I was healed! But I was warned that the endometriosis would grow back.
Not Again!
Fast forward about 12 years and I had just married my wonderful husband. My periods had started to become a little more painful now and I was starting to experience bleeding between periods. I went to see my GP who said that it was likely that the endometriosis had returned. I had read that getting pregnant could help the symptoms, as during pregnancy your body is not producing the hormones that encourage the growth of the endometriosis patches. DH and I wanted to have children and decided it was time to start trying. We tried for one year with no luck and as advised sought medical help. You know the story from here as it led to the creation of this blog, but I do want to take a moment to explain exactly how endometriosis has affected my life aside from the devastating blow of infertility!
The Pain
This is probably the most obvious of the symptoms. The period pains are severe and crippling but what many people don't realise is that with time, the pain is not only during the period but becomes continuous. I have recently completed a second set of Zoladex injections but prior to the treatment I was experiencing severe period pains for 3 weeks out of my 4 week cycle. The level of pain is difficult to describe but it radiates down my legs and through to my back. I can feel my uterus cramping and it is so painful that I often feel faint and nauseated. The worst pain is the stabbing pains which can shoot through my uterus or in the rectum - it is literally like someone is stabbing you with a knife!
The Blood Loss (*Warning - TMI, graphic alert!)
It was initially difficult to tell if my periods were too heavy as it's not easy to determine what is "normal blood loss" but it was when I started to lose what was my daily amount of blood in three hours that I started to worry. The blood loss climaxed in "flooding". I would feel a severe cramp and then have a few seconds to get to the bathroom before a rush of blood. Whatever protection I had on would not be enough to contain it and I would often have to change my clothes and mop up blood from the floor. Not great when you're trying to get through a day at work (especially when I have a cramp in the middle of a lesson!). This rate of blood loss obviously leads to extreme tiredness and anaemia.
The Tiredness
I've already explained that the pain and blood loss can lead to exhaustion but what I was not aware of, until recently, was that endometriosis can lead to Chronic Fatigue Syndrome. Once again, finding the words to explain is difficult but when I've tried to explain to DH, I use this description. It feels like I haven't slept in days and that I have done a strenous workout the day before so my muscles are aching, but all I've done is get out of bed after a full 8 hour sleep, showered, got ready for work and completed the ten minute drive to work. By the time, I get to the door, I am so tired that I just want to cry. On some days, I struggle to get out of bed because my limbs are like dead weights. The most annoying thing is that this tiredness/exhaustion can hit at any time - even when I'm not on my period! I only found out about it this year that chronic fatigue is a symptom of endometriosis through research. My GP kept sending me for blood tests to check for viruses, and even suggested that my tiredness was due to depression!
The Awkwardness
OK, so what do I mean by awkardness? It is really hard to get people to understand that it's more than a bad period. Most men just don't get it and many women think you're just making a fuss! After all, we all have periods, right? Many sufferers feel very emotional when talking about this illness because it can really get to the point where it takes over your life and you struggle to function normally. I know of sufferers who have ended up on morphine for the pain and are trying to battle through the exhaustion to hold down their job! At the end of it all, it just feels ridiculous to say that you can't go to work because you're on your period but this can be a reality for endometriosis sufferers. Most of us push through and go but some sufferers just simply can't!
So why this post?
I have repeatedly stated that this blog is a place where I will be honest and hopefully help to inform.
Endometriosis is often misdiagnosed and many women suffer for years before it's picked up! As someone who has suffered from this illness since the age of 18, I have learnt so many new things about this illness in the last year that would have helped me understand what my body is going through. I've learnt that my tiredness is not laziness, but a sign that my body is fighting the inflammation caused by the internal bleeding! I feel that it's only right to try and raise awareness of this illness. There are 2 million sufferers in the UK alone and those are just the ones who have been diagnosed!
I hope you have found this post helpful. If you have any more questions, please write them in the comments below and I will endeavour to answer each one. If you want more information, pop over to Endometriosis UK and have a read!
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Cece
xxx
what a absolutely brilliant post. I had a colleague who had severe endometriois (if there is even such a thing as non-severe?). Until then, while I knew of the disease, I had no comprehension of just how difficult the symptoms could be. After 20 years of living with the condition (diagnosed like you in her teens) she ended up having a full hysterectomy and part of her colon removed. Until then I had no idea that the adhesions could form virtually anywhere in the body (even the lungs and nervous system). Hers were throughout pelvic region, colon and kidneys. What shocked me the most was that her symptoms had been pretty much been ignored by various corners of the health care system and it wasn't until she was finally referred (after 20 years!)to a brilliant specialist that she stopped being fobbed off. He told her (somewhat specifically) that it was the 3rd worst case he had ever seen.So I think your post, in raising awareness of this condition, is fantastic as I am sure there are lots of women out there who are quietly living with this condition while the rest of us take our "normal" periods totally for granted.
ReplyDeleteGemma xx
Thanks for your comment, Gemma! I really hope that this post raises awareness more. It is silent disease that very few people actually understand!
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