International Endometriosis Week

This week is International Endometriosis Week, an issue very close to my heart. Well, actually it’s an issue close to my ovaries, fallopian tubes, uterus, bowel, kidneys and, according to the surgeon’s report, my Pouch of Douglas – whatever the hell that is.

For 13 years I was left to suffer the debilitating symptoms of Endometriosis as the condition went undiagnosed. From the first day of my second ever period, I began a way of living that was entirely based around my very unpredictable menstrual cycle.

Once a month, quite often twice, my entire life was brought to a screeching halt by the arrival of ‘The Period’. Its onset meant at least two days in bed with a migraine headache that no amount of medication would shift (although I never tried general anaesthetic – I suspect that may have worked), and at least three days of pain in my abdomen so intense that it caused nausea, vomiting, cold sweats, shaking, diarrhea and fainting, and required two Panadeine, two Nurofen and half a bottle of red to cope. It was all a bit Elizabeth Taylor, but at least the combination knocked me out for long enough that I could sleep through the worst of it. I then had a week of, and I’ll leave out the graphic details, extremely heavy bleeding which left me tired, anaemic and run down.

The rest of the month was spent getting more and more uptight about its return, whenever that may be. The erratic nature of my menstrual cycle meant I soon learned never to leave home without a large supply of Tampax Superplus, a few Nurofen & Panadeine, extra sanitary pads, and a spare pair of undies. Travelling filled me with angst. If I happened to be away from home, or unable to get home, the whole experience was humiliating for me and confusing for everyone else. How I could go from perfectly fine one minute, to an ashen grey, sweating, shaking, vomiting mess the next, was well beyond most people’s comprehension. Generally the reaction was to suspect me of ‘putting it on’. Once while travelling from Langkawi to Brisbane with a group of work colleagues I barely knew, my period unexpectedly turned up as we flew into Kuala Lumpur’s old airport. I was wearing white linen pants at the time – make your own conclusions there – and was left to sort myself out in a revolting public toilet in a decrepit airport in a primarily Muslim Asian country that didn’t freely sell sanitary protection, all the while experiencing a cold pain so strong it felt like a knife slicing through me. The only toilets available were of the squat variety, with the restroom attendant sporadically sending a burst of water from a fire hose under the stalls to clean the toilets out. Trust me, no one goes to that trouble for attention.

For years I tried doctor after doctor, sent from specialist to gynaecologist and back again, and was referred to many GPs who were apparently “amazing” with women. I was put on five different contraceptive pills, sent for three ultrasounds, given Wild Yam Cream, Evening Primrose Oil, organic tampons, had an operation to widen my hymen, prescribed copious packets of Ponstan, Naprosan, Naprogesic and Voltaren, boxes of Panadeine Forte, had acupuncture, Bowen Therapy and Electromagnetic Therapy, took magnesium supplements, iron tablets, ginger tea, special diets and applied heat packs. It was all a load of rubbish, and culminated in one doctor telling me that the best thing I could do was have a baby as that generally “sorted things out”. I was 15.

Finally, at the age of 26, I found a GP prepared to listen. When I met her, she was the President of the Australian Medical Association, and therefore had a few good contacts. One of them was an Ob/Gyn who was at the time President of both the Australian Federation of Medical Women and Medical Women’s International Association. My point in telling you this, and I do have one, is that this is the standard of doctor I had to find before getting a diagnosis. Within six months of meeting these women, I was essentially clear of the Endometriosis that had been festering inside me and causing me so much distress.

The thing that really irks me is that it took so long to get the correct diagnosis and treatment, and that it took two female doctors at the absolute pinnacle of the Australian medical profession to diagnose something as common as Endometriosis. Most women aren’t as lucky as I was to come across the level of expertise I found. After years of being sent for ultrasounds, I was told that Endometriosis rarely (as in never) shows up on those scans. That the only way to properly diagnose endometriosis is via laparoscopy.

This is pretty mundane stuff as medical problems go. It’s not like I was suffering from some weird African flesh eating virus no one had ever heard of. Endometriosis is a condition that affects approximately one in eight women, roughly the same as the rate of men suffering prostate cancer from what I’ve read. Granted, cancer kills, but quite frankly, so does a fragile mental state, and I most definitely had one of those by the end. Unbeknownst to me, I was also displaying classic symptoms of Premenstrual Dysphoric Disorder (PMDD), which is essentially like having an incredibly bad bout of PMT all month. Constantly in a state of high agitation, I was permanently moody, depressive, lacking confidence, lethargic and generally difficult to get along with. I had no sex drive, no motivation and no patience for anyone. My relationships with my family and partner were fractured. I am told it is common for women with Endometriosis to also have PMDD. If only I had known this sooner. Imagine how the people around me must have celebrated this secondary diagnosis – “Thank god they can give the bitch drugs!”

The doctors I spent years going to for help were completely ill-informed and ignorant to either of my conditions, something that only served to drag the whole frustrating experience out and make it even more upsetting. I’m not sure much has changed. And for this reason I say to any woman who suspects her menstrual problems won’t be solved by a cup of tea, a Bex and a good lie down:

Demand your doctor investigate fully. The majority of women have periods that only last a few days, and experience little or no pain. If you deviate from this, demand a laparoscopy. Take control of your health yourself. If you don’t feel you’re being listened to, demand they start paying attention, or change doctors. Just push and push until you feel satisfied that you truly have examined every single aspect of the problem. Your doctor may not take you seriously, that doesn’t mean you don’t have to. The immense feeling of having your life back, of being able to live spontaneously and free of the stress of Endometriosis is worth whatever was required to get you to that point.

And if anyone ever dares say to you, “C’mon love, take a Panadol and get on with it”, give them an uppercut. Actually, give them two.

If you would like more information on Endometriosis, go to http://www.endometriosis.org.au/

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