The Importance of Speaking up About Women’s Health | International Women’s Day

Women’s health has been silenced

For too long women’s health has sadly been side-lined and silenced over the years. I have learnt this the hard way. It all started when I was 11 years old and started my periods. I suffered with heavy, erratic, painful periods from the get-go. I visited the GP countless times to only be told that what I was experiencing was ‘normal’ and that I should ‘get used to it’. For someone to be told that at any point is unfair, but to say that to a young girl who is crying out for help is another matter entirely. It wasn’t until I was 16, I saw a gynaecologist. By then my symptoms were debilitating. They were not just flaring during my cycle; it was all day every day.

When I met my gynaecologist for the first time, I was made to feel like the pain was my fault. That I didn’t have a good pain threshold. That it was my mind playing on tricks on me. How is that fair for a consultant to not listen to their patient and to process to belittle them?! The only response I got from the gynaecologist was ‘You must have contracted a sexually transmitted disease, that is the only explanation to your pain’. I was horrified. I knew this wasn’t the case, but you even doubt yourself when you have a medical professional so adamant that there is nothing wrong with you. They proceeded to test me for any sexually transmitted diseases, and of course they all came back NEGATIVE. Much to my gynaecologist’s surprise. That’s when she finally agreed to do a laparoscopy (keyhole exploratory operation) to see if anything was going on. I came out of that surgery to be told there was nothing wrong with me and I only had a simple cyst on my ovary. This is when my gynaecologist sent a letter back to my GP requesting, I was referred to a psychologist as she was convinced my pain was all in my head. I was devastated.

Endometriosis

4 months later I ended up needing emergency surgery in the same hospital to remove my appendix. Whilst under the surgeon operating said my appendix was healthy but he could see endometriosis surrounding it therefore removed it anyway. I had never heard of this disease before. Finally, we had a small break through. My surgeon referred me back to my gynaecologist whilst I was an inpatient. When I came face to face with the gynaecologist, she flatly refused to agree with the general surgeons’ findings. This is when things didn’t seem to add up at all.

Thankfully my dad had private health insurance which covered me, so he researched endometriosis specialists. He found a specialist in Birmingham which we saw within days. A week later I was being taken into surgery for endometriosis excision. I remember coming out of that surgery absolutely frightened that he was going to say he found nothing. But it was the complete opposite. My surgeon had found so much endometriosis disease that he couldn’t complete the surgery and needed to take me into major surgery the following week to do a bowel resection. I had FINALLY got the answers to the pain I had been suffering from for so long. I was relieved but at the same time incredibly scared. I was faced with an incurable disease and major surgery. 2 weeks before my 18^th birthday I came out of the major surgery where I had endometriosis removed from my bladder, ovaries, tubes, peritoneum, and the worst of all my bowel.

I feel incredibly lucky that I was able to access the care I so desperately needed, but it also makes me feel sad that so many young girls and women are being medically gaslighted. This has got to stop.

 

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A post shared by 𝔸𝕟𝕟𝕒 | Women’s Health Advocate (@battlewithendo_ox)

Living with a stoma

I am now 28 years old living with a permanent stoma, long term catheter, sacral nerve stimulator and have had all my large colon and all reproductive organs removed due to this horrific disease. I do wonder if I had the correct medical professionals from the very beginning believe in me that I may not be suffering just as much today. 14 surgeries I’ve had to have due to the destruction endometriosis has caused on my body. If caught sooner, I may have been able to avoid some of the irreparable damage to some of my most vital organs. I may have not had to have a stoma bag at 25 years old, or a radical hysterectomy at 28 years old.

Raising awareness

The dismissal we face as women in a medical setting has got to stop. We need to educate medical professionals and the wider public on how debilitating diseases like endometriosis can be. We need to be aware of the signs and symptoms to diagnose early. Sadly, it’s an average of 9 years here in Wales until a woman receives their diagnoses for endometriosis. That is too long to be suffering in silence. It has a great detriment to not only your physical health but also your mental health.

Listen to Anna’s episode of our Let’s Talk podcast, where she discusses living with endometriosis and raising awareness. 

Women’s health has been severely underfunded for far too long and sadly has only been pushed lower down the pile since the pandemic hit. My aim is to raise vital awareness for endometriosis and women’s health through my Instagram page. This is why, alongside one of my friends, we are setting up a new project called the ‘Menstrual Health Project’. Our mission is to help women in the here and now. Whether they are seeking a diagnosis, newly diagnosed, or a long-standing sufferer. We want to support those suffering by bringing accurate and informative toolkits for those suffering with menstrual health concerns and conditions who are most in need of support to be accessible through schools, GP practices, sexual health clinics etc. Women shouldn’t have to be left to research all the information by themselves. For the future generations we need better support and education for women’s health. I feel incredibly strongly about using your voice to raise awareness. You must be your own advocate and fight for the care you deserve. Hopefully one day when my daughter is older Women’s health will not be undermined and will be funded correctly.

Anna

@battlewithendo_ox

@menstrualhealthproject

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