Or to steal a recent headline from the Guardian:
'I'm not a hypochondriac. I have a disease. All these things that are wrong with me are real, they are Endometriosis'
If you don't know what Endometriosis is, you might want to follow some of the links at the end of this post. It's an incredibly debilitating disease that affects 10% of women.
If you think this post is going to be "too much information" or that "it's just women's issues" then I'm afraid you are part of the problem. Please read and educate yourself.
You may remember that I was diagnosed with Endometriosis a few years back.
The diagnosis followed a few years of tests and investigations into why I was suffering with chronic pain, especially in my abdomen, and suffered with much of the unpleasant stuff that comes with bowel disorders. I had a CTscan and an MRI and a variety of scopes and all sorts of blood tests and they still haven't been able to determine what's wrong with my digestive system. They've simply said I have IBS (which is not news; that diagnosis came over 20 years ago) and that by process of elimination I should work out what foods irritate me, and avoid them (again, habit of a lifetime).
The MRI did reveal something that might be gynaecological, and I was referred. The Gynae department started their tests, which in turn led to a surgery, numerous biopsies and a clear diagnosis of Endometriosis. It was quite bad - my uterus and bladder are fused, and the bowel had stuck to my tummy wall. The consultant cut the adhesions on my bowel but refused to do the other work, as the surgery was too risky.
And for a while, the pain was much more manageable and my food issues improved a little. That might be because I'd cut certain foods out, or it might well be because my bowel was no longer stuck. Neither of these are rocket science.
As it does, the Endo crept back, and last year I had an ovary removed as I'd developed an endometrioma. The chances of needing surgery again are pretty high - surgery leads to scar tissue which leads to adhesions which leads to yet more surgery.
And in the meantime, I've been researching and reading and trying to look at the bigger picture.
I started my periods when I was 10. I was in pain for a few days at the nurses room in my primary school, with no-one knowing what was wrong with me until the tell-tale sign showed itself. From that young age my periods were always heavy, and invariably pretty painful. I often got dizzy or passed out, or would spend time curled up on my bed in agony. Constipation and/or diarrhea were common and I'd dread that time of the month. In my 20's and 30's things improved a little with hormone contraceptives but by this time I'd just learnt to deal with it anyway - the line "some women have painful periods, you just have to live with it" sounds incredibly familiar.
Looking at it now, it's rather likely that I had Endometriosis from a young age.
I've also learnt that the Endo might be the reason why Aran had such a difficult birth that resulted in an emergency Caesarian and all the complications that followed. I certainly can't have any more children because of it.
And all this suggests that major abdominal surgery might be the reason why the Endo notched up a gear and became the major problem that it is now.
It might also be the reason why I've had so many allergies and sensitivities to foods - I've started to keep track of how bad my reactions are in relation to consultant visits and timing of surgeries. Things do improve afterwards, that's for sure. And if all this is connected, it's likely the Endo is misbehaving and surgery will be on the cards in the not too distant future.
And it might also be the reason why my immune system isn't all that strong and why I seem to get ill so easily. I was diagnosed with CFS (chronic fatigue syndrome) some 16 or 17 years ago and I've struggled since then to feel truly 'well'. I don't get as tired as I did then but I'm hardly bursting with energy (unless I've had wine).
And it might also be an agent in my depression, too. Not the cause - I'm fairly certain where the root of that lies, but hormone imbalances and digestive issues and immune problems are not going to help.
After the surgery last year I was given the Mirena and the pain went - it was amazing! I could walk without hip pain or constantly feeling skewered; I could sit or stand during my period without the agonizing shooting pains or the feeling of my innards being turned inside out or dread of the 'mess' I'd leave behind. No more nerve pain or cramps that would double me up. But I also went into a major depressive cycle, feeling suicidal every day, and it wasn't until the spring came that I started to add all this up. The Mirena has now gone - my head is in a better state but the pain is back. The pain isn't as bad with one ovary less, and day to day life is more manageable than it has been over the last few years, but it's still there, nonetheless.
All of this is to say that yes, I live with chronic illness. Chronic illnesses that relate to metal health and 'women's issues' and the sort of things you're not supposed to talk about. I'm learning about my health issues and I'd like the people in my life to understand, too.
And I'm very glad that the Guardian published a series of articles on Endometriosis, as now the dialogue has started. No more patting of the head and being told to live with it. Endometriosis IS a disease, a horrible, horrible disease, and just like mental health it needs a lot more understanding and funding, and a lot less necks in the sand. Many thanks to Joanne Scrace for bringing these articles to my attention.
"I'm not a hypochondriac. I have a disease. All these things that are wrong with me are real, they are endometriosis"
"No-one believed I could be in such pain from a period"
"20 things every woman and doctor should know about Endometriosis"