I am 26 years old and I have been through menopause four times throughout my life. Why? Because of endometriosis and adenomyosis. If you haven’t heard of these diseases before I’m not surprised. Whilst endometriosis affects up to a third of the world’s women, it is somehow still a medical mystery. In a nutshell, endometriosis is where the lining of the womb grows where it shouldn’t. Adenomyosis is an evil cousin where it grows in the muscle wall of the womb. There is no cure, there is no standard treatment, and there are too many doctors who are uneducated—not just about the disease, but how to care for people who have it.
My journey with endometriosis started at the age of 15, when I started suffering from severe pelvic pain which left me curled up in a ball unable to move. I landed in emergency more than once, each time being told that it was just normal ovulation pain. I lived with my symptoms for six years before I finally received a diagnosis. When I was 16, I was put on the pill by my general practitioner and did receive a degree of relief for a time with a small reduction in pain flares – my periods were still hell though. When I was 20 and at university, supposedly young and carefree, things took a turn. I became extremely lethargic, having to sleep after taking a shower. I could barely eat, living off scrambled eggs and crackers. And of course, the pelvic pain was back in full force. It eventually got to the point where I had to drop the majority of my university load and move back home.
I was extremely lucky during this time to have general practitioners who cared, listened to my symptoms and wanted to help. Too many girls don’t even have this. I ran the gauntlet of specialists, to the point where I was recognized by different surgeons each time I was back in hospital for yet another procedure. After having exhausted all other possibilities I was eventually referred to a gynecologist. To her credit she immediately suspected endometriosis and in no time at all I had undergone my first laparoscopy which confirmed the endometriosis diagnosis. After the surgery, the first line of treatment discussed was pregnancy. For a 21-year-old this was quite a shock. I still had never had a boyfriend at this stage, let alone thought about kids! The question of pregnancy would continue to come up at every consultation. Each conversation would start with “Have you got a boyfriend yet?” Not damaging at all right?
When it became evident that none of the standard pills available were going to control my symptoms still present after the surgery I was then put on a monthly injection called Zoladex. This is a hormone-based treatment which injects a tiny pellet of hormones into the body and tricks it into entering menopause. This meant that at the age of 21 I was suffering hot flashes (at least it was winter at the time), night sweats and started to grow a moustache. It was safe to say that I had no social life during this time. After going through all this my symptoms still wouldn’t go away. It was time to look for a new specialist.
Through a friend I found a wonderful endometriosis specialist who immediately stopped the hormone injections, recognizing it was not an acceptable treatment for a 21-year-old. She performed my second laparoscopy which provided a new diagnosis, this time it was adenomyosis, that evil twin I mentioned earlier. It is often lumped in with endometriosis, being described as “it’s just like endo but a bit different,” helpful I know. It would eventually turn out that my endometriosis actually responded quite well to treatment. My adenomyosis on the other hand, is yet to have a significant response to any treatment.
By the time I graduated I was so completely lost. I didn’t know it then, but my mental health had been suffering for a long time. I had no real life for so long, I didn’t know what I wanted to do or how. I just felt isolated and like I didn’t belong anywhere. So after my best friend moved overseas I also decided to follow in the footsteps of many young Australians and made the move to London. It was the breath of fresh air I never knew I needed. Sure, things were hard—I struggled for a few months before I fell into a job I’m still in love with. Money was scarce, but I made it work because I finally felt like I had a shot at finding my place in life. One of the great things I love about London is how accepting it is of everyone, no matter who you are or where you have come from.
Unfortunately, after arriving in London in early 2014, I was back under the knife by December that year for my third laparoscopy. My symptoms had started to flare and became uncontrollable yet again. After the surgery there were more medications, each of which failed, until finally I was put back on Zoladex and entered my second round with menopause. It wasn’t until the third round that I finally received hormone replacement therapy which combatted some of the symptoms. This time I was on three monthly injections to try and reduce the burden, after this failed it was into my fourth round and back to the monthly injections. To paint a picture for you, these aren’t your average flu injections, they are a motherf*cker of a needle which cause bleeding, bruising and swelling around the injection site.
By this part of the story I know things might be starting to feel a bit tedious, but I want to convey the long-term impact that this disease can have on your life. You go through stages where every single day is a struggle to get up in the morning. You become a medications expert and feel like you live in a doctor’s office. I now have the Mirena coil which has helped ease some, but not all of my symptoms. For the past three months I was experiencing heavy bleeding every single day, now I only experience this occasionally with only light spotting most days.
The impact of chronic illness on mental health does not receive the attention it needs. It wasn’t until I had a breakdown last year that I fully realized I had no mental health to speak of. I was a pressure cooker and one small thing triggered me to combust. I couldn’t work, sleep, eat or move for three days. It was my best friend that gave me the push I needed to go and seek professional health. After refusing anti-depressants prescribed on the spot by the GP, and demanding a referral, I found a wonderful psychologist. Therapy has been an absolute roller coaster but now I honestly don’t know where I would be without it. I never realized just how much I had come to blame myself for my conditions. It was no wonder I had no self-esteem, confidence and suffered from anxiety. I had felt guilty and ashamed because no one had ever talked to me directly about my mental health and chronic illness before. Healthcare professionals involved in my treatment and disease management never considered that aspect of my life to a serious degree.
It was only recently that guidelines were put in place for healthcare professionals in the UK to assist them in even recognizing the signs of endometriosis. These guidelines are a big step forward and they are fairly comprehensive. But more education and awareness is needed. The story I have shared with you is just one of thousands, hundreds of thousands. Far too many women experience far worse than I have, and they often don’t have access to affordable healthcare or a strong support system. Many women don’t even know they have endometriosis and continue to struggle every day instead of receiving the help they need.
Please, if you have painful periods, irregular bleeding or struggle with sex or infertility, go and seek help from your doctor. Just as importantly, if you have a sister or a friend who is struggling, please help them to receive the care they need. No one deserves to suffer alone. Continuing to raise awareness of endometriosis and adenomyosis, will help the medical community see the important of increasing education for healthcare professionals, as well as research efforts in searching for a cure.
Author: Amelia Kerin
Author Bio: I am another Australian export creating a life for myself in the UK. I am passionate about removing the stigma around mental health, and raising awareness of how it can be affected by chronic illness. Pilates and food are two of my great loves, both having helped me to find a sense of balance in my life. I also have an irrational love of porridge and firmly believe it can be eaten for any meal.
Link to social media or website: Instagram @mindbodyendo