1 in 10. Let's start with the end-o
Sorry please excuse the pun. And I will try and keep this to a nutshell, I'm sure as all my thoughts and ideas flood on to the page/screen as this blog progresses we will cover it further. To be fair, this may be quite a large nutshell!
So what is endo, the dictionary defines Endometriosis as:
A condition resulting from the appearance of endometrial tissue outside the uterus and causing pelvic pain, especially associated with menstruation.
Let me tell you this covers the bare bones. The symptoms vary from woman to woman and the severity does not correlate to the pain. By this I mean you could have very mild endometriosis but be in absolute agony or you could be riddled with it and show no symptoms at all.
For me I have always struggled with hideous periods, massively irregular and painful. I went on the contraceptive pill at 14 to manage them. What I now know is that pain like that is not normal! Menstrual cramps where you are still able to function as you usually would albeit a bit tender and sore are normal. Debilitating, bent double, can't breathe and rolling on the floor cramps - not normal.
I wish I had known and pushed for it to be looked in to further. Instead what followed were a whole host of different contraceptives, you name it I've tried it! The pill - both mini and full, the implant, the depo injection, the mirena coil etc. I've tried it and I've had months of no periods at all and months of continuous bleeding (thank you depo!). I have begged my GP and every nurse unlucky enough to land me as their patient to please help me, surely this isn't right!
It wasn't until a past relationship where we tried to conceive did I start to get answers. I came off of all contraception excited to try and make a baby and was in agony, not just when my period was due, especially as it had a mind of its own, but always. After several trips to my new GP and a couple of A&E visits I was referred to Gynae - this time I was asked have you heard of Endometriosis? Endo-who now? She explained and I listened but I did as we all do and googled the hell out of it once I got home and discovered a massive community of everything I had felt and gone through for about a decade! This must be it, this endo business, I had an answer! I wasn't going crazy or being a big wuss! It wasn't that my pain threshold was limp compared to every other woman I knew, there was actually an answer, although still no diagnosis and still no baby!
So after several scans, inside and out - fun, and an MRI that showed no endo, all while still in pain I started to doubt myself again, if it was so obvious why couldn't it be found and my gynaecologist suggested a laparoscopy to both diagnose and whisk away any endo they found lurking. A laparoscopy is currently the only absolute way to diagnose Endometriosis.
About 6 months later I was gowned up and whisked in to theatre, and they did indeed find and blast away a large amount of endometrial tissue sucking away where it had no business being. This wasn't the end of my endo journey, I was upgraded from here to GNRH analogue drugs (chemical menopause) and a whole host more but that is for a different time.
It horrifies me that it takes on average 7 years for a woman to get a diagnosis of endometriosis. 1 in 10 women in the UK have this horrid illness, that means it is more common than people that have diabetes (1 in 16 for those of you that like the stats) yet most people haven't heard of it, or hear that it is a gynae issue and clam up, you'd think in this day and age we would be able to talk about a cervix without people freaking out!
All of this is why it is so important that we discuss it! For the next generation of young girls in agony and thinking they are alone, for the women with silent endo (no symptoms) who have been trying for a baby for years until you get inside and find it is all siezed up with the stuff. For the men out there, dads and husbands, that watch their girls suffer and might see this or hear people in a coffee shop or see a post on Twitter, and go back to their girl and say "could it be this?". Or just to shut up the rubbish GP that told you to take a paracetamol and go back to work, this is what happens to all women ( did happen to me by a female GP and still makes me mad!).
So what is endo, the dictionary defines Endometriosis as:
A condition resulting from the appearance of endometrial tissue outside the uterus and causing pelvic pain, especially associated with menstruation.
Let me tell you this covers the bare bones. The symptoms vary from woman to woman and the severity does not correlate to the pain. By this I mean you could have very mild endometriosis but be in absolute agony or you could be riddled with it and show no symptoms at all.
For me I have always struggled with hideous periods, massively irregular and painful. I went on the contraceptive pill at 14 to manage them. What I now know is that pain like that is not normal! Menstrual cramps where you are still able to function as you usually would albeit a bit tender and sore are normal. Debilitating, bent double, can't breathe and rolling on the floor cramps - not normal.
I wish I had known and pushed for it to be looked in to further. Instead what followed were a whole host of different contraceptives, you name it I've tried it! The pill - both mini and full, the implant, the depo injection, the mirena coil etc. I've tried it and I've had months of no periods at all and months of continuous bleeding (thank you depo!). I have begged my GP and every nurse unlucky enough to land me as their patient to please help me, surely this isn't right!
It wasn't until a past relationship where we tried to conceive did I start to get answers. I came off of all contraception excited to try and make a baby and was in agony, not just when my period was due, especially as it had a mind of its own, but always. After several trips to my new GP and a couple of A&E visits I was referred to Gynae - this time I was asked have you heard of Endometriosis? Endo-who now? She explained and I listened but I did as we all do and googled the hell out of it once I got home and discovered a massive community of everything I had felt and gone through for about a decade! This must be it, this endo business, I had an answer! I wasn't going crazy or being a big wuss! It wasn't that my pain threshold was limp compared to every other woman I knew, there was actually an answer, although still no diagnosis and still no baby!
So after several scans, inside and out - fun, and an MRI that showed no endo, all while still in pain I started to doubt myself again, if it was so obvious why couldn't it be found and my gynaecologist suggested a laparoscopy to both diagnose and whisk away any endo they found lurking. A laparoscopy is currently the only absolute way to diagnose Endometriosis.
About 6 months later I was gowned up and whisked in to theatre, and they did indeed find and blast away a large amount of endometrial tissue sucking away where it had no business being. This wasn't the end of my endo journey, I was upgraded from here to GNRH analogue drugs (chemical menopause) and a whole host more but that is for a different time.
It horrifies me that it takes on average 7 years for a woman to get a diagnosis of endometriosis. 1 in 10 women in the UK have this horrid illness, that means it is more common than people that have diabetes (1 in 16 for those of you that like the stats) yet most people haven't heard of it, or hear that it is a gynae issue and clam up, you'd think in this day and age we would be able to talk about a cervix without people freaking out!
All of this is why it is so important that we discuss it! For the next generation of young girls in agony and thinking they are alone, for the women with silent endo (no symptoms) who have been trying for a baby for years until you get inside and find it is all siezed up with the stuff. For the men out there, dads and husbands, that watch their girls suffer and might see this or hear people in a coffee shop or see a post on Twitter, and go back to their girl and say "could it be this?". Or just to shut up the rubbish GP that told you to take a paracetamol and go back to work, this is what happens to all women ( did happen to me by a female GP and still makes me mad!).
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