Sophie Hearts Photography – Endometriosis UK calender
How long did it take for you to be diagnosed with Endometriosis?
I wasn’t diagnosed until I was 21, but my symptoms started at the age of 10 when I started my periods, the pain and bleeding lasted 14 days.
Can you tell us about the symptoms you experience and how they affect your life on a daily basis?
Before I had my hysterectomy for Adenomyosis (condition where cells of the uterine lining grow into the muscular wall of the uterus). I would have horrifically painful, heavy periods with clots. I would have to change my sanitary towels every hour. I felt like I might pass out from the immense pain, and would sweat heavily. My pain after my hysterectomy is still the same, which is devastating! I suffer with daily intense pelvic pain in my lower back and legs. I would describe the pain in my organs, like they were being strangled by an electric fence, my pelvic wall feels like it’s being carved out. I also suffer terribly with migraines due to hormonal imbalances.
How many surgeries have you had so far for Endometriosis, and what was the impact of these surgeries?
I’ve had nine so far but the last three surgeries have undoubtedly been the hardest. Physically, mentally and emotionally not only due to my hysterectomy, but because of the severity of my Endometriosis things became so complicated. The hysterectomy hit me hard as it meant never having children again. I’ve had ‘Prostap’ injections (where your body is put into false menopause) Altogether, these surgeries took a total of 21 hours, the result was two torn urethras (that needed two 30cm stents for six-eight weeks), two perforated bowels, a blood transfusion, a catheter for two weeks and three weeks in hospital. It has been incredibly tough and I wouldn’t wish it on my worst enemy. I’ve actually just been referred again to see another surgeon, as they believe my bowel and bladder is being strangled again.
What are the common misconceptions people have in regards to Endometriosis?
That it is just a bad period! Endometriosis affects your physical health beyond just your reproductive organs; it can damage other organs too. This is something that affects every single aspect of not just your life, from social, careers, to relationships and infertility.
It was recently announced that menstrual health will be taught in schools from 2020, how will this help young girls?
This will help immensely, and knowledge is power! When I was in school, there was no information about painful periods or menstrual health. This will be life changing as it could mean a quicker diagnosis for young girls getting diagnosed who might have Endometriosis, as on average it currently takes 7.5 years.
Have you been diagnosed with any other conditions alongside your Endometriosis?
Yes I have; Stage 4 endometriosis, von willerbrands (blood clotting disorder), fibromyalgia, chronic migraines, heart murmur/thickened heart valve, rhinitis, mild hip dysplacia, plaura catch syndrome, IBS and irlens syndrome.
How challenging has it been for you as a mother to deal with this condition?
I was absolutely petrified of how I’d cope physically, and be a good enough mother, before having my daughter. I feel guilty for the times I have been admitted to hospital even for emergencies, I don’t like the thought of my daughter dealing with this, it’s overwhelming and I feel I’m letting her down, it honestly breaks my heart. I also worry a lot at the thought of her getting Endometriosis in future, as there has been proof of genetic links.
What advice can you give to others with Endometriosis and how can we raise more awareness?
When your emotional and mental health is under pressure, find strength from yourself and those around you. Pay attention to your body’s symptoms and don’t settle for anything less, you deserve that best treatment from doctors. Many times, I have allowed doctors to speak to me terribly; they treated me like I was just having a ‘bad period’. Remember, we are all in this together. Shout from the rooftops and make your voices heard! Things are changing, one step at a time, so we will get there, I promise.
To follow Emma’s Story check out her Instagram handle @mummyspaininthearse.
Copy by Elysha H
Images by Emma and Pexels