Research into conditions that purely impact women are heavily under funded. I could spend my time ranting, speculating why and giving a massive F.U to the Patriarchy.
Instead I would rather talk about a particular female health condition that I have and so do 10% of women (est 1.5 million sufferers in the UK) and it takes an average of 8 years and 10 months to diagnose.
Endometriosis….
What is Endometriosis?
Endometriosis, or as I will now call Endo, is when cells similar to those in the lining of the womb (uterus) are found elsewhere in the body. These cells can grow and change in response to hormones in the menstrual cycle, this can cause inflammation, pain and scar tissue. Symptoms may include painful periods, bowel and bladder issues, pain during sex, infertility and fatigue.
The current diagnosis for Endo is via a Laparoscopy (keyhole surgery). Treatment to help (not cure) includes;
- Surgery to remove scar tissue and deposits or completely remove the womb and/ or ovaries.
- Hormonal treatment that can range from taking the pill or having a coil fitted, or having injections that induce a temporary menopause.
- Pain relief and management, from using heat and TENS machines, to painkillers and pain modifiers.
Why Talk About It?
March is Endometriosis Awareness Month and this years campaign is “Endometriosis Explained”. The idea behind this, is that talking about it will raise awareness and by raising awareness – MPs, GPs, Researchers etc can’t ignore the importance of Endometriosis and prioritising it for funding and research.
Interesting fact, periods shouldn’t be excruciating. Another fact, periods shouldn’t bleed excessively. For the hat-trick, you don’t have to have very long bloody periods to have Endo.
Having read Emma Barnett’s Period (It’s About Bloody Time), in which she makes the point that if we don’t talk about periods, how do we know what is normal, or not? This resonated with me, for years I thought periods should be unbearably painful and that as it was a week a month, I should just get on with it. Not knowing whats ‘normal’, or not, means years may be spent suffering, when it could be spent seeking diagnosis and treatment.
My Endo Experience
As a result of having Endo, I would faint because the pain of my period was too painful. I had 3 surgeries before 30. I have been through two rounds of a medically induced menopause before turning 30. I had a Gynaecologist tell me when to have a baby, because leaving it any later with this progressive condition would leave me infertile and it would be too late to have children.
I still get pain and cysts, however I am currently managing to cope using hormone treatment. Having experienced internal bleeding during a laparoscopy, the poor medical advice of ‘childbirth can be a way to treat Endometriosis’ and even more misogyny of a male consultant telling me that my Endo ablation (removal of Endo) should make sex more enjoyable – despite having the surgery, because I couldn’t walk due to the pain.
I live in fear it could get worse at any point.
Final Rant
Endo and managing Endo can take away a lot of choices for sufferers. Not only can we feel like our dignity is taken away and our right to choose if, or when to have a child is taken from us. We also have to fight hard for a diagnosis, and ‘treatment’. ‘Treatment’ which doesn’t cure the condition and also may come with unwanted side effects, for example; more pain, mood, hair loss, weight issues etc. Also, if you reject the treatment due to side effects, this may prevent you from getting a different treatment, or even having a diagnostic laparoscopy.
Often those who make vital decisions on research and treatment for Endo, have not personally experienced the pain, bleeding and other symptoms caused by Endo. Maybe, if they bled painfully from their private parts, suffered pain even when they weren’t ‘ON’, couldn’t work or walk due to pain. Then I believe there would be more priority and funding to find answers and a more effective treatment. Instead of the current ‘solution’ of fighting hormones with hormones, surgery to remove Endo, or even more severely surgery to remove the female reproductive organs.
Turns out, I typed F.U to the patriarchy in a very long winded way!
Pictures*
*Pictures (other than the middle photo) has been provided / copyright owned by courtesy of Endometriosis UK.
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