A story of suffering

I have now been in pain for four hundred and forty three days. I have been in pain all my adult life for one week in every four, so I should be used to the feeling, right? Well, no. It turns out that pain is not something you get used to. Not ever. Every minute of agony is as acute as that first one. And it hurts. A lot.

I thought all girls were like me. I thought my experiences were part and parcel of being a woman. I thought all other women were braver than me for enduring their monthly pain in silence and getting on with their lives so easily. Now I know that that I’m not like other women. Now I know that I’m not well.

I have endometriosis. Welcome to my world.

My world of endometriosis involves the following:

• PAIN: I’m in pain. I’m in pain during the day and I’m in pain at night. The pain is so bad that often I can’t sleep. Walking is a struggle. Getting on with my life is impossible. Ibuprofen is not enough.
• LOW MOOD: I get very sad; I cry a lot; I worry about what has been, what is and about what will be. I don’t want to go out. I can’t face seeing my friends, I can’t face seeing people. I clam up in my shell, with a dizzy head, feeling sorry for myself. And there the mist that is difficult…impossible to shake off. I feel like I’m wading through treacle and it’s not funny. It’s damn scary.
• CHRONIC FATIGUE: I’ve been so exhausted that sometimes lying down is hard work. Imagine that! I’ve been off sick for over three months now; it makes me worried about my future. I haven’t seen my friends for ages – they’re busy getting on with their lives – I don’t blame them, I want no less for myself. But then again I’m too tired to do anything about my isolation.

When I’m experiencing only one of the above symptoms, it’s a good day. When all three conspire against me, it’s a bad day. My good days tend to be bearable. My bad days tend to be very bad.

Endometriosis can’t be cured and although more common than you’d think, with one in every ten women being a sufferer, and as common as diabetes, it’s had relatively little press.

So when you see on the doctor’s screen that seven-centimetre lump in your tum, it’s your-face-goes-all-green-and-white-and-green-again scary. It changes things. “Please don’t worry, but you have an endometrial ovarian cyst.” Please don’t worry, my…er.

And then you think, endo….what? So you go home with your heart in the soles of your feet and you Google it. And then you see the word INFERTILITY. Many women with endometriosis fall pregnant naturally, however the condition can and does cause severe fertility problems. And you feel as if somebody just snatched your biological clock from you. And you wonder whether the time really has run out for you. The realisation of the potential implication is too much to bear.

And the doctor tells you that he doesn’t think it’s CANCER, but they’ll check nevertheless. Blood test results for endometriosis resemble those of cancer victims. He told me that they’d do a biopsy to check whether the cycts are benign, nothing to worry about really.

I’ve kind of known that I’ve had the condition for ages, despite regular visits to a number of gynaecologists, with only one mentioning it briefly. Otherwise, all I heard was half-diagnoses of “maybe, perhaps Polycystic Ovaries Syndrome, but we can’t be sure” and “low progesterone levels”.

Even GPs tend to overlook the symptoms. Painful periods? “Well, all women have it. Pull yourself together. Here are some drugs. Take those and get on with it.” Tired? “Just get on with it, and get some rest.” I’ve now been resting for a hundred days and I can tell you that I’m not feeling too much better for it.

As most fellow suffers will confirm, the disease is often diagnosed by ‘accident’. My original complaint that eventually led to the diagnosis was a presumed musculoskeletal complaint, a sports injury. One follow-sufferer I spoke to thought she had Irritable Bowel Syndrome. I chuckled when she told me. So true.

The condition centres on the endometrial tissue, which lines the womb. Every month, the body sheds this tissue in the form of menstrual blood. The tissue can however crawl out through the wrong end, so to speak, and grow inside the tummy, covering internal organs. When this tissue bleeds, as it’s designed to, the blood is trapped. The level of pain this causes you, depends on how lucky, or not, you are.

This is the story of my journey. This is the story of my suffering. This is the story of my struggle to overcome my illness.