Endometriosis UK

I’ve been baking cookies in exchange for donations to Endometriosis UK at my office.  Here’s why we all ought to support Endometriosis UK.

Endometriosis is a chronic illness that effects between 3% – 20% (these vast differences can be found on a number of different reputable websites) of women and, unlike cancer, is an illness that most only learn about upon diagnosis.

Diagnosis can take anywhere between 5 and 20 years to achieve and always needs to be confirmed with surgery.  In waiting for a diagnosis, women endure terrible pain and are told that it’s in their heads or that it’s “just cramps” – making us assume that vomiting from pain is entirely normal.  Endometriosis pain can range from minor discomfort to passing out entirely from pain.  Needless to say, some find it hard to hold down a job if they’re vomiting from pain once a month.

There is little justification for waiting even 5 years for a diagnosis – let alone 20!  As an endometriosis patient, I would be most grateful to know that women can start to get effective pain management as soon as possible.

After diagnosis we don’t have much to look forward to; we have to settle for pain management treatment that is not entirely sufficient.  Of course, I would prefer that everyone who has a diagnosis immediately is given a tablet and given a cure but as that dream is but a pinprick of light in the distance, what I would really like for now is more recognition.

With recognition comes more research: doctors cannot research diseases that they are not aware of.  With more research comes better pain management, the confirmation of where this disease comes from and, ultimately, a cure.  As with everything else in my life, I know that a tablet with a cure will never come without the rest of the process working – and recognition is the first step.

Believe me, it is hard to know that we are still only at the first steps of the process.  However, don’t forget those of us who suffered with no hope of a diagnosis.  In the dark days when women’s health was of no interest to doctors, women like my maternal aunt would sit in the bathroom and cry for her whole period.  I have no idea if she has endometriosis but, based on anecdotal evidence, I have to admit that I believe she does.  Back in the day women like my mom were told that getting pregnant would cure their symptoms only to have a diagnosis of endometriosis when she had her hysterectomy – many many years after symptoms start.

It is my hope that our endo-daughters and granddaughters have better luck with the medical establishment than those of my mother’s and my generation!  Perhaps they will look back at us and think “How frustrating it must have been for them!”  In order for them to have a brighter future, we must do what we can to raise awareness now.

Endometriosis UK works hard to raise awareness of a debilitating chronic illness.  In the fight against Cancer, we all know to examine ourselves regularly for lumps and tumours, we all know to eat at least 5 portions of fruit and vegetables a day, and we all know to check and double check moles for any changes.  We have a long way to go even before all doctors recognise the agonising symptoms of endometriosis!  We have a long way to go before we get an accurate test for endometriosis as currently the only effective diagnosis is surgery!  We have a long way to go before we know what may prevent endometriosis!

Endometriosis UK provides an invaluable information service to women with endometriosis through helplines, chatrooms, local groups and an email service.

By the time we are diagnosed we’ve been living with crippling pain for years and just the act of achieving a diagnosis creates a number of strong conflicting feelings: vindication that the pain isn’t just in our heads, sadness that we aren’t normal after all, shock that our lives will indeed have to change in order to more effectively cope with pain, guilt that we will have to continually rely on friends and family as there is no cure, and despair at the loss of dreams that are simply unachievable now that there is no cure for our unending pain.

The information service provided by Endometriosis UK helps us cope with the conflicting emotions that we continually experience.  Chronic illness has an effect on every part of a patient’s life.  I may not need to remind you that I consider the diagnosis of my chronic illnesses was part of the catalyst that led to the crumbling of my first marriage.  My ex-husband was unable to comprehend my health problems: he preferred to focus on himself just as he had through the rest of our marriage.  It was when he was unable to support me that I believe I finally began to succumb to depression.  The sad fact was that I was able to support him in his life but he was woefully incapable of supporting me.  Endometriosis was not the only problem between us but it was certainly a factor that led to our divorce.

We’ll never get a cure unless we start to get as many doctors working for us as they do for better known illnesses.  Until then, we will need Endometriosis UK for moral support that we may not be getting at home.

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