This week is Endometriosis Awareness Week. Endometriosis is often misdiagnosed or misunderstood. Here Journal reporter and columnist CLAIRE ALLAN talks candidly about her own experiences with the condition.
I have frequently been told I’m very open about things - there is little I have not discussed in my books, in my columns, on the radio or just in general conversation.
So it seemed when Endometriosis Awareness week landed this week - and an email arrived in my inbox asking me would I discuss my experiences as part of a UK wide awareness raising exercise, I should have been chomping at the bit.
And yet, I have discovered there are still things I feel a little taboo about. And “weemin’s problems” is one of them - and yet Endometriosis currently affects an estimated 1.5 million women in the UK, with many more going undiagnosed for years.
Endometriosis - for the uninitiated (and believe me I was exceptionally ignorant myself until my own problems began) occurs when the lining of the womb (Endometrial tissue) grows in the wrong place. During a woman’s monthly cycle her hormones stimulate the endometriosis, causing it to grow, then break down and bleed. This internal bleeding, unlike a period, has no way of leaving the body. This leads to inflammation, pain, and the formation of scar tissue. Sounds lovely, doesn’t it?
But for many women talking about problems “down there” is something we still find difficult - and open and honest as I am about my life experiences, I did find it difficult to talk about my experience, to ask for help and to try and come to terms with my diagnosis.
My experiences with Endometriosis started just under a year ago. In this respect I have been very lucky. I have gone from experiencing the first really noticeable symptoms (in hindsight I had been having symptoms for a while but they weren’t really debilitating) to having a diagnosis and treatment in just over six months. On average women wait 7.5 years for a diagnosis as the condition is often misdiagnosed or overlooked. In many cases women simply put up with the pain and discomfort it causes because for many of us we expect things like periods simply to be painful.
For me, the symptoms started with an excruciating pain in my left hand side which would leave me doubled over. This pain would shoot down my leg, up to my ribs and would get worse at different times of my cycle.
At one stage I was taking Tramadol - a strong pain killer - to try and get through each day and would find myself unwilling to leave the house when the pain was particularly bad. I missed work. My social life became virtually non existent. On one glorious occasion I found the pain caused me to faint while on the school run.
On top of the physical pain, Endometriosis comes with other symptoms - fatigue, bloating, heavy periods, depression, pain during or after sex. Almost every aspect of a woman’s life can be affected - and yet because the condition is not widely recognised, it can feel as if you are banging your head off a brick wall trying to be understood. Like so many “silent” illnesses, you may look physically well but feel utterly wretched.
One of the most heartbreaking complications of Endometriosis is that it can have very serious implications for a woman’s fertility. I was very lucky in that I was diagnosed after my family was completed. For many women a diagnosis of the condition comes with the knowledge they will struggle to become parents - for some they will simply never be able to fall pregnant.
The diagnosis process is not easy - nor is for the most part dignified. I thought, believe me, I had left all my indignities in the labour ward - but finding you have a gynaecological problem opens you up to a whole new host of tests - smear tests, internal scans, swabs, blood tests and being poked and prodded by a number of doctors are a necessary evil.
Most medical professionals adopt a process of ruling everything else out before offering you the Holy Grail of Endometriosis diagnosis - a laparoscopy.
I experienced a great deal of frustration even in those few months - being diagnosed with everything from “just heavy periods”, ovarian cysts to bowel problems. Many people with Endometriosis share those frustrations - you quickly learn to be an expert on your own condition. Thankfully I had a very sympathetic and thorough GP who pushed for a laparoscopy and was put under the care of an equally sympathetic consultant.
When I was eventually offered this diagnostic procedure (which is done under a general anaesthetic, usually as a day case) I felt nervous but hopeful. By that stage I had started to wonder if I was going mad and felt that to have a diagnosis at all would mentally help me deal with the physical symptoms.
Strange as it sounds, I almost wanted to punch the air with joy when I came round from the surgery to be told I did have Endometriosis and that they were able to laser what they could see of it away.
That may sound like an odd reaction but it was a relief to know that it hadn’t all been in my head, even though there is no cure for the condition.
It can however be treated and managed to a certain extent. The lasering has helped reduce my symptoms for the time being. I no longer need to take strong painkillers for three weeks out of every four. I still have bad days - but the pain is not as severe and since recovering from surgery I’ve not missed any more work. I’ve even found a little bit of confidence in being able to get out and about more without fear of being doubled over with pain.
The tissue will, likely, grow back but like many women I’m finding ways to cope with what this condition throws at me. I know when to take it easy. I’ve adapted my diet - less gluten seems to help and I’m looking into different hormonal therapies although they come with their own side effects.
Most of all I’m trying to find out as much as I can about Endometriosis and speak as openly about it as possible. It is more than “just women’s problems”.
For further support and information visit www.endometriosis-uk.org