BY STEPHANIE ESLAKE
Debilitating cramps. Heavy bleeding. Digestive issues. Lower back pain. Fatigue.
For many women, these symptoms are written off as ‘period pain’. It’s a simple explanation, but it’s not always an accurate one.
In Australia, more than 830,000 women have endometriosis — and it’s far more painful than a monthly cramp. It’s a disease in which tissue that’s similar to the lining of the uterus can grow outside it, eventually leading to inflammation and adhesions in other parts of the body.
It affects about one in nine women around the world. Though it’s a common condition, women usually spend years experiencing unexplained pain, pursuing countless health appointments, and trialling medications before receiving a correct diagnosis.
Tasmanian music educator Hannah May waited 17 years to be diagnosed with endometriosis. In 2019, she underwent her first laparoscopy — a keyhole surgery that can check for, and help manage, this disease.
This March is Endometriosis Awareness Month, and we invited Hannah May to engage in an open and honest conversation about what it means to live with this “crippling condition”. Hannah, who also lives with adenomyosis, sheds light on her experience of working in the music industry as an educator, performer, and “endo warrior“.
Hannah, this March is Endometriosis Awareness Month. I wanted to start our chat by asking if you could tell us a little bit about your endometriosis journey.
My story begins almost two decades ago at the age of 11 years old when I got my first period.
It was incredibly painful from the get-go, coupled with fatigue, headaches, and other symptoms. Every month, I would share my discomfort to those around me, and I recall spending a minimum of two to three days every month in bed with pain and fatigue, and my trusty hot water bottle.
I was told my period pain was ‘normal’, and so nothing was ever really done — apart from a few trips to the doctor who relayed the same information.
I was told my period pain was ‘normal’, and so nothing was ever really done
When I got to college, it only got worse, and it often involved either not attending class or throwing back large amounts of pain relief to get through a school day or my casual job. I did try to question it more — and a doctor again told me again that some pain was normal, and that it should settle down as I got older.
When I turned 20, I moved out of my parents’ house and went to a new doctor who put me straight on the pill. With all the symptoms, she said this was the best way to manage the periods. It lessened some of my symptoms, particularly the stabbing pain, so I was able to manage a bit better. But the fatigue stayed, and every month I would still get one to two days of pain, and would have to throw back more my pain killers.
Over the next decade, it was an endless list of doctor trips, heading to the hospital many times to be told I had a urinary tract infection, or that I possibly might have kidney issues [despite all-clear tests]. [I was told to start taking] painkillers, changing my diet, seeing a gut specialist and other medical professionals trying to get an answers.
It wasn’t until early 2019 I finally came by a specialist who said she was sure we would find endometriosis if I had a surgery. So, on 20 December 2019, I was finally diagnosed via laparoscopy.
On average, they say it takes seven to 12 years for someone to be diagnosed. It was 17 years for me.
What did your career in music look like, up to the point of your diagnosis?
Music has been my life for as long as I can remember, from joining my first choir when I was 8 years old, to singing lessons, to performing with fellow musicians, to now being a singing teacher.
Given I was being told my pain was normal, I essentially ‘sucked it up’ and just attempted to ‘power through’. And I did for a long time, attempting to keep up with my fellow musicians and other teachers.
I moved out of my parents’ house, got various jobs, performed, studied, travelled, and did all the usual things a 20-something wants to do — all the while throwing back pain killers, and having to cancel social events, gigs, cut back on studies, and do my degree over five years instead of three.
As time went by, I had to cancel or say ‘no’ to work shifts, and cancel travel plans. It it got to the point where I felt like I couldn’t make plans.
After receiving your diagnosis, how did things start to change for you? That is, how did you change your approach to work in music, now that you finally had an answer — and you could start making plans for your best future?
It was a massive relief: there was something wrong — it wasn’t normal or ‘in my head’! But it was also devastating.
Endometriosis currently has no cure, and so from all the reading and talking to health professionals, it was all going to be about management and quality of life.
It has meant challenging [my plans for] my whole life, and what I have wanted for my life, in many aspects. I had plans to go travelling, to perform, to finish my album, to teach and build upon my craft. But all that has had to be put on hold, or changed where and when I can do it.
From a career point of view, I have cut back. I perform every few months and when I do, I aim to do short sets. I ask friends or family to help with gear lifting, and I now have a strict limit on how many students I work with.
My album is moving ahead slowly. With all my single releases, it’s been online only. And I haven’t done a single release performance like I had planned — though last year, I did create a film clip with my students and friends, which was amazing!
I am still making music and my album is coming together, albeit slower than I had hoped. As they say ‘one song at a time’.
In 2019, you had your first surgery for endometriosis, which also gave you a diagnosis of adenomyosis. The surgery was a success, and you have continued to build your flourishing career as a music educator. What have been the challenges for you along the way, as you’ve learnt how to identify the signals of your body and listen to what it needs?
I was incredibly lucky with my surgeon who specialises in what we call ‘the golden standard’ [of procedures for this condition], and she was able to remove all the endometriosis that she found. This was a really positive step forward in that with excision surgery, the growth rate [of endometriosis] is slower. So, post-surgery, I have had less pain, and it has allowed me more pain-free days.
Adenomyosis — often called the ‘evil sister’ or ‘cousin’ of endo — is found within the wall of the uterus. But unfortunately, the only cure for that is removal of the uterus, and so for now it’s again all about management.
Singing is a whole-body experience, and so in many ways it has helped me stay in touch with my body, and to know what I need and when I need it
I started teaching singing and songwriting 10 years ago, and little did I know at the time it would be such a good career choice. There is a large amount of flexibility within teaching — for example, being able to sit or stand in a lesson. Singing is a whole-body experience, and so in many ways it has helped me stay in touch with my body, and to know what I need and when I need it.
I have been very lucky with my students and their parents being incredibly understanding and supportive. Most of them are aware of my conditions. [I’ve also had] access to performance opportunities over the years in comfortable environments.
Tell us a little more about how you’d describe the experience of living with endometriosis as a singer and teacher of vocal technique — relying so much on your body in your work.
It can be very challenging. I have my own vocal coach/mentor who I work with, and this has helped immensely. I have regular massages, osteopathy, and acupuncture, which I find to be incredibly beneficial on many levels — but as a singer, it’s essential.
Like anyone who is chronically unwell, I will cancel lessons and reschedule when possible, on my very bad days.
In many ways, I think it has made me a more aware teacher. It has made me even more conscious of all the muscles and mindset involved in being a singer and being a teacher.
What do you wish parents, students, and audience members could know or understand about what it means to live with endometriosis?
So many things. I think the main thing is that we are doing our very best. And if we have to cancel, a message of support goes a very long, long way. The days I have had to cancel, and had messages from parents with even a simple message of support, has helped immensely on the mental health front. Dealing with a chronic condition is not just physically taxing, but mentally and emotionally draining.
Also, I love, love what I do so much. So cancelling sessions with my students is really hard, as there is nothing that makes my heart sing more than hearing them sing!
This year, I set up [a system using music education software] Tonara. So when I do cancel, students can send me recordings of their practice through the app, and I can give them feedback and continue to motivate them to sing or write daily.
That sounds like an excellent communication avenue. You have also been vocal — pardon the pun! — on your social media accounts in sharing your endometriosis journey since your diagnosis. Why has it been important for you to make others aware of your story along the way?
Love a good pun! I honestly have to give Olivia Hicks some massive credit here. She is one of my closest friends, and is the Tasmania Ambassador for Endometriosis Australia — meaning she is very vocal, very honest, and has been an incredible force of power and strength to me and many others.
It is through her story, and others’, that encouraged me to share my own. Endometriosis is listed [by the United Kingdom’s National Health Service] as one of the top 20 most painful conditions, and yet we still don’t know what causes it, and the treatments are limited.
I speak so that others can have a voice
I speak so that others can have a voice. I share their frustration and pain. I think being an artist/songwriter has made it easier to speak, perhaps — though some days, I do have to just hide away so I can take a beat. We need more to come forward, and like we have seen recently in Australia with the Enough is Enough campaign, pain and shame grow in silence.
We need money so that we can move forward. I am hopeful that with more voices, more funding will be allocated into the research so desperately needed to help us all — as we know it impacts not just the person with endo, but their families, relationships, and communities.
What is the biggest message you’d like to send to your music community in Endometriosis Awareness Month?
Firstly, check in with those who have it who may be struggling — or those with a big smile on their face, as we are often very good at hiding it! Ask if you can do anything, whether it’s driving them to an appointment, or simply calling them up.
Secondly, we know that education and awareness is the key for being better and more empathetic humans. So read, listen. I highly recommend checking out How to Endo by Bridget Hustwaite.
Hannah May will speak at the Hobart premiere screening of Endo Girl at the State Cinema. Joining her on the panel for this Q&A will be Endometriosis Australia ambassador Olivia Hicks, and Endo Girl writer, director, and actor Sophia Bender. The event takes place at 6.30pm March 26.
Below: Music educator Hannah May released her single Little Flower in December 2020. Her video clip also features ambassador Olivia Hicks.
For more information about endometriosis, visit the Endometriosis Australia website, and contact your GP for health advice.
Images supplied. Credit: Rosie Hastie.
