This morning I received a message from my sister-in-law, directing me to an article in the Guardian about Endometriosis. My initial response was caution, as so often this condition that has blighted my life since my early teens is so poorly represented in the media, if mentioned at all. But as I read through the article I was pleased to see that it was well-researched, quoting leaders in the field, and clearly expressed the challenges faced both by women suffering from it and the healthcare professionals fighting to find a cause and a cure.
I was even pleasantly surprised to find out about the 45 centres across the UK that have been accredited by the British Society for Gynaecological Endoscopy, as this is something I have never heard of. Just recently my GP and I have been searching for an Endometriosis Specialist, as we seem to have come to the end of the line in terms of treatment options. Yet neither of us managed to find out about this, nor did the gynaecologist who saw me last year.
This is why it is so important that awareness is raised through every means possible, so that those who are suffering (and those who are treating them) can access the best possible care, including an actual diagnosis for those who have never been properly diagnosed.
I’m no stranger to misdiagnosis – during my pregnancy my Hyperemesis was never officially diagnosed (or treated), and TJ’s Small Fibre Neuropathy was also misdiagnosed for several years as possible Carpal Tunnel. But I had always considered myself “lucky” to have been diagnosed with Endometriosis at 21, around 8 years after I first developed symptoms. A lot of this came from the fact that both my mother and maternal grandmother had suffered from it, and so we knew how important it was to fight for a diagnosis, especially through all the years of being told it was “normal” to be in pain.
But what the Guardian article clearly showed me this morning is that many of my other “diagnoses” since have most likely been a side effect of the Endometriosis all along (something I have long suspected but not had the courage to prove). Take, for instance, my IBS… I never had any trouble with my digestive system prior to my first laparoscopy in 2005, yet since that day I have struggled massively with pain and nausea that have consistently been attributed to IBS. Over the past 18 months I have been submitted to test after test including a CT scan, Barium Swallow, Endoscopy and Colonoscopy, all coming back clear. The latter, however, was somewhat problematic, due to my “very loopy” colon, and I cannot help but wonder whether some of this may be due to the adhesions which have previously “glued” my uterus to my bowel.
It seems I am far from alone in getting these “misdiagnoses”, as GPs and gynaecologists refuse to accept that the symptoms you’re presenting to them could possibly be connected to Endometriosis. Yet as the article itself states, “One woman in 10 of reproductive age has endometriosis, it is estimated, and yet often their primary care doctors do not know what it is and the specialists to whom they are sent are ill-informed.” Did you get that? The specialists that women are sent to are often ill-informed – no wonder getting treatment is so difficult!
I’ve said this before, but I’ll say it again – I consider myself “lucky” that my current GP has tried to find an Endometriosis Specialist rather than referring me to a general Gynaecologist. We didn’t have any luck in our search, but the fact is my GP is trying his hardest to get me the best possible care he can. To be believed and have that kind of support is incredible, though it should, of course, be standard!
I’ve seen enough Gynaecologists through the years to develop a certain amount of fear around appointments with them. Despite twice having surgery that has clearly shown Stage 3 Endometriosis, with adhesions attaching organs to each other, I have still had Gynaecologists suggest that “nausea is not ‘typical’ of Endometriosis” and “well, you’re not in too much pain, so bear with it”.
Again, I feel “lucky” that, for me, the Mirena coil actually stops my periods and so the agonising pain that accompanied me through my teen years and early twenties is a thing of the past. I no longer suffer from the pain so great that I cannot move, throw up, and develop a raging fever to boot. When I say that labour and childbirth was a cinch compared to the pain I used to suffer every single month, hopefully that will give it some kind of context! But just because I don’t have that intense level of pain any more, doesn’t mean I don’t suffer.
I get “tugging” pains around my ovaries and “stabbing” pains in my rectum, so sharp that they take my breath away. I get mild “cramps” and the awful nausea that feels almost like motion sickness and reminds me of the horrific weeks and months I suffered with HG during pregnancy. And all of this happens completely at random, meaning I find myself suffering 2 if not 3 weeks out of every month. Add in the migraines and complete exhaustion from struggling to hold down a job, raise a son, and generally have a life, and the picture is grim.
Now here’s where I’m going to sound like a broken record – I feel “lucky” that I still have a job. I have faced discrimination in the workforce before and had to put my career plans on hold many times because of how ill I am. In fact, I often make myself more sick by trying to ignore the fact I am ill and carry on just like everybody else. But the truth is I do have a job, I do have a son that I am well enough to play with most days, and I do have some life left to enjoy. Not much, but some. Many women are not so “lucky”.
[Edit: since writing this post, my health has gone downhill massively, which is caused by a combination of factors and health issues so isn’t just related to the Endometriosis. But it is a contributing factor in a complex situation that has left me unable to work and enjoy life with my family on a day-to-day basis. So even those of us who are “lucky” can be easily struck down at any time with worsening symptoms,]
But here’s the thing – this shouldn’t be what it feels like to be “lucky”… Every woman with Endometriosis should be receiving the best possible specialist care to ensure that the condition does not rule or ruin their life. That isn’t luck… it should be standard. But until we break this idea that “women’s troubles” should just be tolerated and actually begin to see it as something that we need to find better treatment for, “luck” is what it comes down to.
If you’ve read my blog for a while, you will know that I have campaigned tirelessly over previous years to raise awareness of and better diagnosis and treatment for Hyperemesis, because every woman’s health and wellbeing is important. But the percentage of women suffering from Hyperemesis is far less than that of women with Endometriosis, where an estimated 1 in 10 women (or 1.6 million women in 2012 in the UK alone) have the condition. To put that into perspective, “The numbers are comparable to diabetes – and yet there is only a fraction of the awareness of the condition and help for those afflicted.”
You may wonder why I am mentioning Hyperemesis in a post about Endometriosis, but to me it is all the same battle – women are being drastically failed by our society and medical profession through lack of awareness and lack of funding for research, development and education. Until we accept that “women’s troubles” are just as important as other conditions such as diabetes, women will continue to suffer, no matter what condition it is that they are suffering from. And that is why it is important that Endometriosis is in the news today!