Adenomyosis and Health Anxiety
By Jess, @jesshasadeno
April is Adenomyosis Awareness Month and at QENDO we are shining a light on a condition that has even less name recognition than endometriosis, but affects so many. Jess from @jesshasadeno, found community and support via #adenomyosis and was inspired to start her own account and be part of the conversation. Jess has generously shared her story with QENDO to be one of the many voices with adenomyosis empowering others to speak up about their experiences.
All my school friends had already had theirs, my younger sister too. Every day I was expecting it to come. My anxiety was building because I was constantly asked about it, and yet I had nothing to say for it. I was a sporty child. I played netball, soccer, tennis, did swimming, calisthenics and athletics. Maybe that was why it was going to come later in life. Well thats what all my general practitioners had told me. I took their word for it. Obviously. What else would I do?
My younger sister was experiencing some issues and went to a gynaecologist with my step mum. I went along to feel apart of the laaaadies. I wanted to be included. It was the end of her appointment and he asked about me. “How are your periods?” “I haven’t got mine yet” I said. “Oh you should count yourself lucky!”
So I never questioned it.
It came. I was 17. I was anxious about it from the get go. Society has made women feel that their bodily functions have been something to ashamed of from since before I was born. Hide your sanitary items, keep your emotions in check, don’t show your pain, is there blood on my pants? From then on my period was sporadic. It was for the next nine years. I’d get a period for three weeks, (and there was barely anything to show for it), then not again for another three months. Then another gap of six months. Every time I was asked about it or concerned I was dismissed. “Its irritable bowel syndrome”. “Its your anxiety”. “It could be in your gut”. No one ever seemed to suggest there was any issues with my period irregularities, so why should I? All I’d heard about was women with perfect 28 day cycles and my cycle was clunky and unreliable.
Christmas of 2017 I had my period. I was in so much pain walking around the kitchen helping preparing Christmas lunch, with a wheat bag hanging out of my jeans. I took some panadol, but was so surprised at how intense this period was.
That period lasted until February. On and off, it was heavy and uncomfortable, but it wasn’t too weird for me because regularity is nothing I was used to. I thought it was normal. I was at work in the second week of February and all of a sudden I felt a gush of blood. I rushed to the loo and to my surprise there was so much blood I instantly panicked. I was unprepared. Was I supposed to pack a spare pair of clothes now? To every shift? Apparently! So I went home.
I was constantly losing a large amount of blood. The next day i was unable to go to work because the bleeding had gotten so bad. I ended up going to the emergency room at the hospital because I had no idea what to do. Being in a state of panic at the same time doesn’t help whatsoever mind you. You’re pretty sure you’re dying the entire time. Add lots of blood, and I assure you, its pretty convincing. Lovely. They couldn’t do much - obviously. They took blood tests, and advised me that the blood loss was more than average. Aside from the blood loss, the tests came back “ok”. So off I went to the GP the next day. I was referred to a gynaecologist as an emergency patient. *health anxiety flares*. Why am I an emergency patient? I’ve been told I was normal for so long? I convinced myself that I was dying.
Anyway, long story long… I spent a lot of time and money dealing with a gynaecologist, who wasn’t able to really work out what was going on. He was also continuously pushing different types of birth control methods, other synthetic hormone tablets and procedures upon me, in an effort to try and suppress the bleeding. I’d never heard about any of them other than the pill before. He mentioned the Mirena IUD. My step mum had raved about her experience with hers, and once I’d done a bit of reading in the pamphlet the Dr had given me, I went back to my next appointment and agreed to the IUD. What did I have to lose? The tablets he had me on weren’t working. So we booked the procedure for me at the hospital to insert the mirena, and also have a hysteroscopy and D&C.
I remember coming out of the procedure just thanking the gynae, because I genuinely thought he was going to save my life. I was so anxious and honestly in a dark place, because I felt there was just no end to this discomfort and heavy bleeding. Looking back I just have to laugh. The kerfuffle that was going to ensue in the coming months was just a big shit show to be honest.
So, in the following months I was a crazy mess. Surely the three types of hormones, and a few different types of painkillers wouldn’t change anyones demeanour.. right? Well. I could barely leave my house. My anxiety was so bad. I was having multiple panic attacks daily, flaking out of all social engagements, and barely able to work. The symptoms from all of the above were just a mess, not to mention the bleeding only getting worse. You name it, I had it. But the main one was I could barely move. The pain from the mirena or the (impending adenomyosis) cramps were so bad I could barley walk. I’m not being dramatic. I’m talking crawling to my kitchen and bathroom. Not being able to stand up straight. Barely doing 200 steps a day. I will never take my ability to move for granted ever again. Over the six months I had the mirena and multiple other medicines, I lost count at how many trips to the doctors and emergency room we took. Over 20 each, seriously. Each time I was told everything was fine. I questioned everything and anything. I was still told nothing was wrong.
So from April to October I genuinely didn’t live. Anywhere I’d go, all I was thinking about was bleeding through everything I own. Getting those crazy labour like pains that wind you from the chest down, leaving you somewhat paralysed wherever you may be at the time. Until one day i’d had enough. My grandma had called and asked me how I was and I just broke down. I couldn’t hold myself together anymore or pretend I was ok. She gasped at how much medicine I was on just to try and stop the bleeding and pain. NSAIDS and opioids for over 4 months at once? “No one questioned that”? I said no..? “What do you mean”? “The doctors I’m seeing know best Grandma”. She spoke calmly and lovingly, “perhaps it was best if you get a second opinion”. Luckily I have never dealt with anything really health related in the past - but also no one teaches you this stuff? Maybe I was just daft.
In the mean time I’d gone back to my gynaecologist and requested him to take the mirena out. Off I went and sat in the stirrups and surprise, surprise it was stuck. Of course it was! After countless ultrasounds making sure it was in the right spot. WHAT DO YOU MEAN IT IS STUCK?! I was literally a Karen in that moment. I went low-key crazy. I was so mad. But I signed the papers for a removal surgery and an investigative laparoscopy and D&C on the day. Thankfully he put me at a category one, and this time I was going through the public system. I was at least thankful for that.
I got the mirena removed. It was close to puncturing my uterus. The surgeon came into my room after and explained she was glad they removed the mirena, although couldn’t find any endometriosis. I cried. I was so upset they hadn’t found anything that was causing me so much discomfort and pain. “Adenomyosis” I heard. Whats that? She explained in basic terms what it was and how my insides were very much reminiscent of someone with adenomyosis. I started smiling and I asked her to write it down. I thanked her and gave her a hug.
The next day was when I started doing some research from my couch setup, post laparoscopy. A whole new world was opened! Endometriosis was always in my vocabulary but I didn’t understand it very much. My friend from school had it and my Aunty did too. I didn’t know how much it could change someones life. So as I started doing more and more research on adenomyosis. I kept seeing “endometriosis’s evil sister” “similar to endometriosis” etc etc. There wasn’t much information I could relate to in forums online, because by definition, “it is most often diagnosed in middle-aged women and women who have had children”. I couldn’t relate to either of those.
I got the second opinion after the laparoscopy, finally with a diagnosis we could talk about. My new gynaecologist taught me exactly what it was and how it was effecting my body, including why I may of had the period woes in my teens and early 20’s. It all started to make sense. It all made even more sense the day I decided to search the hashtag adenomyosis on instagram about a month later. My mind was blown. I found my niche. Women who could talk open and freely about their experiences and how they were coping. Suddenly my anxiety had lessened. I’m not alone. Im not dying. WOW! There are women my age dealing with this too. I immediately made my account and connected with so many women from all over the world experiencing similar symptoms to me. We could help each other, connect some dots, and be there for each other too. I’ve taken some breaks, and I don’t check into the account every day - just to keep my mental health in check, but I love seeing everyone’s tools and daily tips on how to live with these chronic illnesses. Every day is different. I don’t know how I’ll feel tomorrow. I know if I log on, and have a chat to a friend dealing with same issues, we can empathise with each other, and bond over it. Its really been a blessing in disguise. The womens health community on instagram is really thriving, thanks to all of us. Professionals, patients, and those who are just interested and ask questions, really help us share factual, and accurate information.
Its been a year after my appointment with my new gynaecologist and she’s helped me put together a treatment plan that helps me and has restored my quality of life. Its not perfect it won’t ever be, but its working for now, and I’m eternally grateful for every hurdle I’ve had to jump to get here. Every hurdle and jump along the way has taught me many a needed lesson. Take each day as it comes. Don’t ever take my health and wellbeing for granted. Most of all keep myself educated, and try to help as many people as I can.
