“Your daughter’s lying on the floor in the bathroom. I think she has to go home.”

 

living with endometriosis
Lesley and her daughter.

 

 

 

 

By LESLEY FREEDMAN

Here we are at a family wedding just a few months ago. I love this photo. My daughter looks happy and healthy. I don’t look too wrinkly.

But halfway through the reception someone tapped me on the shoulder: “Your daughter’s lying on the floor in the bathroom. I think she has to go home.”

She was diagnosed with Endometriosis a couple of years ago, but that was my first experience of how suddenly and brutally Endo can take her from the party to the pits. A few weeks later she was in hospital for her second surgery in less than two years. She’s unlucky to be at stage 4 – the most severe – and she’s only 23.

Endometriosis is thought to be an autoimmune disease where cells from the Endometrium (in the uterus) migrate to the pelvic cavity and set up scar tissue and inflammation. They attach to other organs too like the bowel, bladder, ovaries and fallopian tubes, causing excruciating pain and often irregular bleeding. Some women don’t have much pain so they don’t find out ’til it’s almost too late that their reproductive organs have been damaged. Endo can begin with first menstruation, so mothers, listen when your daughter misses school because of her period.

Sylvia with friends.
Sylvia with friends.

One in ten women in Australia has this chronic, incurable, gynecological disease that often results in infertility. That’s half a million women with a disease that forces them to abandon their studies, their jobs and their holidays and lands them on the couch or in emergency; and often, when they want babies, in IVF. It costs us around $600,000 dollars a year for every woman with Endo; for doctors, drugs, surgery, natural remedies and practitioners and lost hours of work. My daughter is managing uni part-time but is finding it impossible to commit to the job she needs so she can support herself.

Having mentioned drugs, the only treatment doctors can offer are contraceptives that were designed to do just that – prevent pregnancy, not Endo. Oral contraceptives contain oestrogen which triggers flare-ups of Endo. So although women are routinely prescribed the Pill to control their disease, the presence of oestrogen reduces the adequacy of the treatment.

A few weeks ago we were hoping my daughter’s latest operation would give her some more pain-free, symptom-free time – years, hopefully several years. But she’s bleeding again despite all her natural remedies and treatments and taking the Pill continuously.

This is how I’m helping my daughter: Bayer (an International Pharmaceutical company) has produced Visanne; a pill specially developed to alleviate the pain and inflammation of Endometriosis. Unlike the usual contraceptive pills this one has no oestrogen.

But – how unfair is this? – you can’t buy it in Australia. It’s been approved for use here but Bayer thinks there aren’t enough women who need it to make it worthwhile putting on the market. Women in Canada, South Africa, Europe and South America can get it but Australians and New Zealanders don’t get the choice.

There’s something you can do to help sufferers of Endometriosis. Please sign the petition to get Visanne available in Australia by clicking here.

I am not advocating for this drug – only for my daughter and thousands of other women to have the opportunity to try it. You can help us – the Medical Director of Bayer ANZ will take our petition to their Marketing Meeting next week.

Sylvia in hospital.
Sylvia in hospital.

Lesley’s daughter Syl writes:

“It’s been four months since my last surgery and I’m in worse condition than I was before. I’ve tried a slew of Oral Contraceptives. None of them seem to be slowing down the growth of my disease or giving me any sort of pain relief.

There are other medications thought to help with Endo but they also induce early menopause and I’m only 23! My Mum and I are desperately trying to get Visanne on the Australian market so that women with Endo like me have another choice. Endo is heavily impinging on my life and is crippling me with pain at least two days a week. At this point, I have no more treatment options left to try.

Please sign the petition to raise awareness about the staggering 1 in 10 women living with this debilitating disease and allow us access to a treatment option we deserve to try. By getting on board, you could help change the life of a girlfriend, sister, mother or daughter.”

Please sign the petition by clicking here.

This post was originally published on The Glow, and is republished here with full permission. 

You can help us – the Medical Director of Bayer ANZ will take our petition to their Marketing Meeting next week. Please email: [email protected] and tell her we want the opportunity to have Visanne as part of our treatment options for Endometriosis. We deserve the choice. Email Jan or sign the petition at Change.org.

Do you know anyone who has endometriosis? What’s the experience been like for them? 

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