Monday 4 October 2010

Letter to local paper.


After a diagnosis of endometriosis during a laparoscopy in March this year, and being aware that I'm not the only woman to have suffered these frightening symptoms for so many years, I decided the time for change is now. I think there should be more information available about this destructive disease - what it is, what it does, and how it affects not just the women and girls with it, but their families, too.

I have suffered from terrifyingly painful periods since I was 12; I'm now 28. For many of those years and like thousands of others, I thought I'd just drawn the short straw with "bad periods"; I know now that I have been unwell for 16 years, and with periods, ill. My Mum has had to be my carer when I've been ill, when I can't look after myself, or dress myself or even get to the toilet on my own when I have a period.Countless women to whom I have spoken about this have experienced prejudice, some have been told they have a bowel problem, or a bladder problem, or that the pain was psychological and they should take anti-depressants.

Support seems desperately lacking, as are empathy, sympathy and respect among some doctors and medical staff. Some people assume endometriosis is only painful with periods, others see it as having only minor consequences, and sadly, others completely dismiss it as a cause for all the agony, depression and fatigue that so plagues us.

The longer it's left, the worse it gets and that, too often, means even more pain, harsher treatments (which don't necessarily work, and with some extremely horrible side effects), and sometimes, major surgery in the form of hysterectomy and oophorectomy.

The RCOG set out guidelines which show how difficult endometriosis is to diagnose, and also why it should not be so readily dismissed:



Despite the information as linked to above, there is still much of it some doctors do not seem to know. I think this is exceptionally wrong.

There are women and girls, all over Essex and beyond, who are suffering like millions of women in the United Kingdom and I have, and still do, even during and after difficult treatment. They'll think they "just have to get on with it"; they don't. It isn't right to be unable to live a "normal" life because of "bad periods".

If you covered in your paper how so many people have to endure months or years of struggling to be diagnosed (, the medical community (except my GP, who is excellent) might begin realise this is a major problem on their collective part which needs to be addressed.

Awareness of endometriosis is shockingly poor, considering it affects at least 2 million women in this country. In my drive to achieve these very realistic goals, I have written to the BBC, General Medical Council, British Medical Journal (letter published -, Royal College of Obstetricians and Gynaecologists, and my local MP.

Thousands of women and girls have been and will be told there is nothing wrong with them. This is not right and is certainly not fair. I truly hope you can help this desperately important cause.

Yours hopefully,

(Miss) Lucy Palmer.