By Team QENDO, Edited by Dannielle Stewart
Meet the women who suffer with both endometriosis and its sister condition adenomyosis, and are helping shine a light on a disease that has even less name recognition than endo.
What is adenomyosis?
"Adenomyosis is a disease where the endometrium grows into the muscle of the uterus. The patient then suffers numerous microscopic bleeds in the muscle, at the time of the period" says gynaecologist and endometriosis specialist Dr Graham Tronc. "The symptoms of adenomyosis are often very similar to endometriosis, with heavy, painful periods being the most common. Added symptoms include referred pain to the back and down the legs, with general associated feelings of fatigue. The pain can be at least as bad as Endometriosis, sometimes worse, because the patient doesn’t yet have a diagnosis".
Adenomyosis is poorly understood by many doctors, even specialist gynaecologists, who often believe that adeno can only occur in women in their 30s and 40s. Young women can indeed have adenomyosis, as the young women in this article are living proof. The youngest among them is sixteen.
Introducing the Adeno Advocates....
QENDO Support Coordinator and Blog Coordinator
I was fifteen when I started experiencing pain that began to effect my life. Though I denied its severity for many years, until I was eighteen in fact, the pain was very real. Before I went on the pill I would suffer with extremely heavy bleeding and clots every time I felt those signature cramps. Periods were exhausting, mentally and physically. During my first laparoscopy at age 20 I was diagnosed with endometriosis and had an excision. At my follow up appointment my specialist pointed to a photo of my uterus and a small plaque like growth on it, which he told me he suspected was adenomyosis, and sent me for an MRI. The MRI didn't meet the diagnostic criteria for adenomyosis, and my symptoms were well controlled post excision, so we continued with our treatment plan. Two years later I found myself in pain almost every day, sometimes so agonising that I would pass out. I was feeling unwell constantly and ended up in emergency a number of times. When I returned to my specialist I told him about the radiating pain down my legs, the nausea and dizziness. I came to the appointment the morning after a ten hour night shift as a surgical ward nurse and I had been in pain for hours, too nauseous to eat and too much work to slow down. When I told him that the symptoms had been slowly but surely getting worse for eight months, and this was the first he was hearing of it, I copped one of his signature “what am I going to do with you?” expressions, I’m a nurse, I should know better. But I had wanted to believe my pain would go away. He looked at my first lap pictures again, tapping that one spot on my uterus in frustration. "That's not supposed to be there," he said, shaking his head. He suggested a second laparoscopy, because there was either more endometriosis or adenomyosis, maybe both. On an ultrasound before surgery I met two out of four diagnostic criteria for adenomyosis. When I had my surgery in September 2018 I received a text message from my surgeon afterwards, no new endometriosis but adenomyosis was growing through the wall and out of my uterus - sexy. My uterus had the classic adeno appearance, bulky and bumpy - what a compliment. I was officially diagnosed with adenomyosis and had two mirenas inserted. I have seen a dramatic reduction in my pain since that surgery, and while flare ups do happen, I experience a great number of pain free days, for which I am thankful.
I am passionate about educating and advocating for women with adenomyosis because I know it is frequently a source of pain in women who have already had excisions. Additionally, I am proof that adeno occurs in young women and want young women to know that their painful periods are not normal - they may have endometriosis, but they may also have adenomyosis. I do this work by volunteering with QENDO as their support coordinator and blog coordinator. I also raise awareness for both endometriosis and adenomyosis through my blog The Daisy Diaries by Danni. Why daisies? Among the many varieties of daisies is the Federation Daisy, which blooms in winter, flowers in white, pink, yellow, and red - colours synonymous with endometriosis support - and look their most brilliant when planted in large groups. Like daisies women with endometriosis and adenomyosis are strongest even in the harshest seasons, and we achieve our greatest when we work together toward a common goal.
QENDO Secretary and Dalby Facilitator
April might not be that important for some, but for me and other Adenomyosis sufferers, it’s chance to spread awareness for a condition that doesn’t have much awareness at all.
Up until four years ago, I was living with pain almost daily. I would have period pain, not just on my period, but throughout the entire month. Pain so bad, I felt like I was going to be sick. This was also coupled with extremely heavy bleeding. Bleeding that was so heavy, I’d need to be sleeping on top of a towel and changing pads almost hourly! Not only was I doing these things, but I thought they were normal - because throughout my teen years I was told to ‘Suck it up’, ‘It can’t be that bad’ and ‘Are you sure the pain isn’t just in your head and you’re wanting attention?’. I was calling in sick to work, missing days at uni, and wondering ‘How on earth am I going to continue to live like this for the rest of my life?’ Let alone thinking about caring for the baby a specialist suggested I should try for at nineteen!
I knew a bit about endo, with my Mum being a nurse, but I hadn’t heard of adenomyosis before. Even though it was only four years ago, the awareness around endo and adeno was not as prevalent, like what it is now. There was hardly any information around both conditions, and not any that I found relatable as a twenty year old girl.
Having experienced the debilitating symptoms of endo and adeno from about sixteen years old, and them getting progressively worse, it had been a long time coming to get an answer for my pain. Thankfully, after seeing FOUR different specialists, ONE inconclusive laparoscopy and changing pills EIGHT times, I found out that not only did I have endometriosis, but I also had its nasty cousin, adenomyosis. Although this was confronting, it was such a huge relief to know that these symptoms and pain was ‘not all in my head’ and that ‘I didn’t need to toughen up’. I was relieved to have a management plan for my condition which included two Mirena's, the pill and seeing a pelvic physiotherapist.
This was also when I found QENDO. I was so thankful to have found an organisation that was dedicated to advocating for those affected by endometriosis, as well as adenomyosis. Their resources were reputable as well as relatable, and provided face to face support through their EndoMeets. These were so helpful for connecting with girls who were going through what I was going through and just ‘got it’!
Being able to experience the incredible work QENDO do first hand, I was keen to get involved with the organisation that gave me so much. I have now been volunteering with QENDO for over two years, and it feels amazing to be able to provide support and continue to raise awareness for those suffering from adeno and endo through support work, the EndoSister program and attending events.
I am now in a way better place, than I was prior to my diagnosis, and I am able to manage my endo and adeno, so most days I have no pain at all. I am so thankful to have found QENDO, my specialist and support team that got me through the bad days, and are still here for the good ones too! I hope that with increased awareness, sharing of stories and education, those suffering with adenomyosis and endometriosis no longer suffer in silence.
QENDO Fundraising Coordinator
Add-den-o..... A-dino-myosis?.....Ad-en-omyosis????? No wonder no body knows about it. No one can even say the damn thing! Every specialist / doctor I have seen has pronounced it differently and for that matter, had a different opinion about it. I am talking about Adenomyosis.
I found out that I had Adenomyosis about 15 months after I was diagnosed for Endometriosis. I had a laparoscopy for Endo and I felt better than I ever had. It was the most amazing thing...for 3 months. Then the pain returned. I went back to my Dr 9 months after my diagnosis. My gynaecologist recommended trying birth control and later, inserted a mirena implant. That is when everything went pear shaped.
I couldn't sleep on my left side, I could wear pants that sat too low, I couldn't exercise at all and every day was an absolute struggle. I won't lie, there were some days I was so petrified that I would never feel normal again and wanted it to all end. I wasn't living. I realised I didn't deserve to feel this way. I got fed up and sought out my new amazing gynaecologist (Dr Graham Tronc at the Wesley Hospital) who insisted on a MRI. Well there it was....Adenomyosis. Secretly hiding away there in my uterine muscle wall, causing my life to be beyond terrible.
I was relieved that it wasn't my mind making things up. I was so scared now that my Endo was at bay that for some reason I made up some other thing. Adenomyosis joined forces with my Endo and they have become my nemesis team ever since.
I trialled 2 Mirena implants and birth control for 8 months before I couldn't handle the side effects anymore and it wasn't long before I wanted to attempt trying for a baby. Acupuncture and Chinese Medicine has worked a treat for me and I was experiencing the best health of my life. I started trying for a baby but after 6 months of no success I sought out my gynaecologist's opinion.
Unfortunately for me though, and for reasons that no one can seem to explain, (just lucky I guess???) my Adeno is back worse than ever. It is heartbreaking and frustrating because I have done everything right- diet, exercise, vitamins, great blood tests and hell- I felt amazing! My acupuncture and Chinese Medicine worked so well that I had no idea at all. Whatever the reason, I had to focus now on what to do for it.
I am now on Zoladex injections for 3 months, enduring all of these horrible side effects and then we will see. I have full faith that with Dr Tronc on my side that I will be a mother some day. I have definitely learnt through Endo and Adeno that you have to roll with the punches, get back up again and keep positive- and for now I am being Little Miss Positivity.
If you feel something is not right in your body- seek advice and even second opinions. Nobody deserves to feel trapped within their body. Be your own cheer squad and never give up.
QENDO Support and Education Team
Senior High School Student
Adenomyosis! Something I never thought I could have after reading online about it, every website said it occurs in middle aged women after having children. Surely I couldn’t have this, my 15 year old self was thinking. Plot twist, after my laparoscopy it turns out I didn’t have much endometriosis at all and my specialist could see that my uterus was bulky and bumpy and said he definitely suspected Adenomyosis. I was so confused, everything I had read said that this was a disease that happened to women in their 30s with children, not to someone like me. 1 week later after my recovery I was scheduled for an MRI and yep, I have Adenomyosis! I was so scared because I thought ‘how on earth isn’t there much endometriosis but I am dying in pain everyday and bleeding for my 2nd year straight now?’ Well adenomyosis was the answer. I’ve actually had adenomyosis pain since I was 7, that extreme throbbing and contraction like feeling in my thighs has existed for that long - that throbbing in my thighs is a well known symptom of adenomyosis. Think about it - if I had my laparoscopy with another surgeon, less experienced with adeno, they would have found very little endo and I wouldn't have a reason for my extreme pain and bleeding - that thought horrifies me. I would have gone away being told there is nothing wrong with me. (Thank you so much Dr Tronc). Although life would be so much easier without it, I am grateful to have a diagnosis. I was thinking I was going insane that week after my laparoscopy leading to my Adenomyosis diagnosis. ‘The pain is in my head’ ‘maybe it isn’t even true what I’m going through’ was circling my head until I got diagnosed and it was such a bittersweet moment. I finally knew my pain was valid and I could now try to manage it. I have recently started working with QENDO to help other girls and women with adenomyosis, I want everyone to know that it doesn't just happen to middle aged women with kids, and it's not good enough to just say "have a hysterectomy" - I am still young, there needs to be other things I can do! I advocate for other women with adeno by sharing my story through my Instagram account Chronically Ill Goddess.
You can follow Chelsea on Instagram here.
If you want to find out more about adenomyosis, the QENDO blog has plenty of resources. You can find one about MRI and the diagnosis of adenomyosis here, and an adenomyosis Q&A here.
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