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Monday, June 07, 2004

National Endometriosis Awareness Day

The National Endometriosis Society tell me that today is National Endometriosis Awareness Day which I had not known. Unfortunately I have been super-aware of this disease the last few days because of the agony and misery it has been bringing me.

Every Part of My Body Hurt is not only a very apt description of the disease, but also a challenging article about one woman's experiences of endometriosis, diagnosis, treatment, and not recovering, but taking control of her treatment options.

What are the aims of Endometriosis Awareness Day 2004?

  • To promote a greater awareness and understanding of endometriosis as a very real and, for many, a debilitating and disabling disease.

  • To highlight the consequences of living with endometriosis for the sufferer, carer and all those affected by the disease

  • To create a greater awareness and understanding of endometriosis amongst the medical profession, education sector, employers, politicians, unions and society in general.


I see that it is still taking women an average of 7 years to get a diagnosis of endometriosis. For me that was certainly true almost to the week.

I spent most of that 7 years being told I'd grow out of it, I'd be fine once I'd had a baby, or that everyone has period pains and I should stop making such a fuss.

I knew that what I was dealing with in terms of pain was a totally different matter from the usual period pain I saw amongst my schoolfriends, which was often eased with a paracetamol or two. I also knew that no amount of (alleged) low pain threshold could account for the writhing in agony on my bedroom floor, collapsing at school, screaming out in pain, which greeted me monthly.

But apart from my friends, to whom it was clear there was something very wrong with me, no-one would acknowledge that this wasn't normal, or do anything to help me.

I spent several years on and off the contraceptive pill. It didn't help with the pain especially, but using it slyly I could run two packs together to skip a period if it was due during exam time, say. Other than that and the average painkillers I wasn't offered any help.

Eventually, one day in despair and unable to stand upright, I turned up at the GP's surgery while I had my period. This woman, who wasn't even my usual doctor, actually saw what I was going through, and did an instant urgent referral to gynaecology.

A few months and a laparoscopy later, I was diagnosed with endometriosis, PCOS and something else whose name I always forget, since the gynaecologist mentioned it once while I was ocming round from the anaesthetic, and that was the first and last time I heard of it! Oh yes, pelvic congestion.

But yes diathermy, ovarian drilling, and many, many drugs later, it waned for a while - for which I am eternally grateful - but now the symptoms are well and truly back.

Watch this space...

GPs call for better treatment of asylum seekers is a very reassuring article, proving to me that there are still good souls in the world, who consider people before profits and such.

3 comments:

Casey said...

Been through something similar myself. Three years to diagnosis, but was fortunately very effectively treated with laparoscopy and Depo-Provera. Not sure how childbearing is going to work out, though.

Saw your comment over on Rude Cactus and wanted to see what books you added to your list. :-)

Anonymous said...

The information I read here about a 7year diagnosis sounds right to me. After being in pain for over 8 years I was just diagnosed with endometriosis by laparoscopy at the age of 21. I can't seem to do enough reading on this subject, which I have come to realize is very under researched. It saddens me to read other women's comments about their struggles with the disease.

Endo has ruined many supposed happy events for me, in addition to relationships, my sex life and it seems my self-esteem. How can we be expected to deal with the kind of pain while at the same time sacrificing our sex lives and our ability to perform the most menial every day tasks? I can't take the lack of a sex life anymore. It has driven people I have loved away from me, and the amount of guilt I feel for that is damaging.

I have been on a continuous birth control for over a year now, and while some of the symptoms relaxed for awhile, they are are quickly returning. I have never known what a "normal" sex life is and I become very jealous and bitter towards my friends who discuss what "great sex" they have had.

There needs to be an enormous increase in the awareness of this disease and the treatments that may make it possible for us to live comfortable lives where we may actually experience a real, healthy and satisfying sex life. We all deserve it.

Anonymous said...

To all women with Endometriosis,
Yes Endo is under researched but the American Endo Association have done some amazing research and the info is all their in their books and newsletters. I would highly recommend their last 2 books - the endo source book and the complete reference. I've read them back to back and whilst some of the info can be shocking it looks at endo from a different perspective. Rather than see it a a pelvic condition it sees it as am immune/hormonal condition. These books have given me hope and new ways of tackling this condition. Even tho i still have a way to go Im so much better than I used to be. I rejected conventional medicine and instead used nutritional support and complementary remedies. Its a longer journey and you have to be patient but I have improved so much. Another great book is Dian Mills Healing through nutrition (I think thats what its called) . The American Endo Association recommend that as well. I dont have the website details for the American Endo but if you do a search it'll come up. Don't give up, maybe you just have to start looking at things differently. I really believe in holistic healing.
K