DELAINY CHISWELL

My name is Delainy and I am 30 years old, AFAB (assigned female at birth), cisgender, and my pronouns are she/her. I was born and raised in the Victorian outback, in Mildura, on Latji Latji country. I have spent a lot of my adult life exploring, chasing summers and working ski seasons, travelling the world and am currently living in Switzerland. I suffer from an illness called adenomyosis and I have become a pretty open book about my experience, to raise awareness and support others who might be in similar situations.

What exactly is adenomyosis and when did you first find out about it?

Adenomyosis is a chronic condition similar to it’s more well known sister, endometriosis. It affects 1 in 10 menstruators. Essentially, adenomyosis is when the endometrium (inner layer that sheds during menstruation) grows into the myometrium (middle muscular layer of the uterine wall) of the uterus (womb). In short, the cells that normally form a lining on the inside of the uterus and shed each cycle get trapped in the myometrium causing a range of different symptoms that change for every person. I first heard about adenomyosis the day I was diagnosed; it is a condition that isn’t really very well known and is also pretty under researched.

Can you tell us a bit about your journey with adenomyosis?

My journey towards a diagnosis was super long! I had suffered from painful periods since my very first period. I bled heavily as an early teenager, and spent most periods bed ridden or highly medicated with opiates to be able to participate in day-to-day activities such as work or school. As the years went on the pain kept increasing and started to appear at ovulation and in my luteal phase (the phase after ovulation).

How long did it take for you to get diagnosed?

Pain first appeared when I was 14, and I was diagnosed at 28. I endured 14 years of ‘painful’ periods with dismissive care and no answers. It was a long time of visiting multiple doctors and not really getting anywhere..

Often I would be advised to take the contraceptive pill but this method doesn’t help everyone! The contraceptive pill is sometimes seen as the gold standard for care but for many people is not really accessible or even an option at all.

Eventually after fainting from pain, multiple ER visits and lack of serious investigation from the health care providers nearby, I advocated for myself and decided to find answers by travelling to see a specialised private gynaecologist 6 hours from my hometown who gave me quality care.

Who did you have to turn to at the time and what obstacles and barriers have you had to overcome?

I turned a lot to my mother for support. She always took me to doctors or advised me to visit the ER when the pain was unbearable. Friends have also been there to nurse me when the pain has flared up suddenly.

I’ve experienced obstacles and barriers by struggling with pain, fatigue or ‘always being sick’. It is hard to provide an explanation to people who don’t experience chronic pain, especially somewhere like the workplace. I’ve had to leave or completely miss social events because of pain, or bloating meant that I simply couldn’t fit in to my clothes. It has also evolved into my sexual relationships, such as serious discomfort during or after sex. Sport or other high intensity activities such as snowboarding that I loved to do each winter also became too painful for me to do.

And one of the biggest obstacles that I have dealt with is definitely overcoming medical gaslighting; being told that my pain is normal or that there is nothing that can be done even though nothing had been done!

How has having adenomyosis affected your life, and how has that changed over time?

Adenomyosis has affected my life in many ways. It made me question my instincts and intuition about my own body because I was repetitively dismissed by health professionals, leading me to believe it was all in my head. In the long run this has evolved in to me having an intimate understanding of my body and the triggers that tell me when something isn’t right. For others, I seem like a normal person when I am actually struggling with daily activities like walking or sitting comfortably for long period of time.

Adenomyosis has also affected me in ways that have made me think and learn a lot more about the disabled community and the challenges they face regarding access and living in a world set up for able-bodied people. I’m so appreciative that adenomyosis had led me to educate myself more about other disabilities so that I can show up better for the disabled community.

What kind of treatments have you found that are helpful for your condition and that you would recommend to others?

I have tried a range of different hormone therapies to suppress the inflammation and resulting pain of the condition. For example, the contraceptive pill stops menstruation each month, so that some inflammation and pain is alleviated. This doesn’t stop the growth of adenomyosis but is a management tool.

I tried the Mirena, a hormone releasing therapy that is inserted into the cervix. This worked well in relieving my pain, but I formed side effects, the most serious being large ovarian cysts which led to surgery.

I would recommend listening to your own body, doing what you feel is best to manage your symptoms, whether that be from a natural or pharmaceutical perspective. There is no right or wrong way. I also really advise to advocate for yourself and to get a second, third or even fourth opinion if you do not feel as though you are being treated with the medical care you are paying for. There will be a doctor who can help you, although unfortunately it can take some time to find the right one. Reach out to the adenomyosis and endometriosis communities; there are great support groups on Facebook or Instagram accounts where people have volunteered so much of their time to educate and inform others.

What tools, tricks and techniques do you recommend for experiencing satisfying sexual pleasure despite endometriosis symptoms?

Sexual pleasure with adenomyosis and endometriosis can be painful for some people, and it is really individualised as to how to navigate. Personally, I believe being with a trusted partner and in the right frame of mind really helps. Feeling safe and relaxed really helps, especially if you suffer from dyspareunia or vaginismus as many people with adenomyosis do. Using lubricant or other helpful products such as OHNUT to explore comfortable penetration depths is also a big game changer. Also remembering that sex isn’t just penetration and that there are other ways to enjoy intimacy with your partner or partners.

You recently moved to Switzerland from Australia. How do you cope with the condition being abroad?

After arriving in Switzerland, I was in hospital within one month for ruptured cysts and free fluid. Coping with this situation abroad can be difficult, especially with a language barrier. It was important that I had someone local with me for translation, and that I showed all evidence of prior medical history to really inform doctors on what I was going through. On a day-to-day basis I cope being abroad with a painful condition by making it known to the people around me about my condition, limitations and needs to feel supported. I also have spent time figuring out what can help me in a flare up and have become prepared in caring for myself, but I also lean on those around me when I need help.

What has having adenomyosis taught you about yourself?

Having adenomyosis has taught me that I am strong. Really strong. Menstruators can do everything that you can do, but while bleeding. Adenomyosis and Endometriosis sufferers take it a step further and do it in excruciating pain. We are resilient and do what we can and sometimes more whilst our pain is invisible to others. Unfortunately, it has also taught me that the system for people with uteruses, people wanting their uteruses removed or with similar conditions to adenomyosis, is extremely flawed and hard to access quality help. You can go to great lengths, sit in pain, lose hope, and even lose organs whilst seeking for the correct care.

How did you decide to go public about something quite private?

Deciding to open up about something so private for me was motivated by the idea of sharing my experience so that other people would feel less isolated. Navigating a condition that you have never heard of until the day you are diagnosed can be scary and confusing. Knowing where to seek help or what to do when there are so many mixed messages can be very alienating! I also try to speak loudly and proudly about menstruating and adenomyosis and the many difficulties and traumas for people who menstruate so that this conversation is normalised. It shouldn’t be a taboo subject as menstruation is so normal and healthy. It’s something that happens every day around us, to many people, around the whole world!

What are you grateful for at the moment?

I am grateful for all the experiences, education and support that have led me to where I am today to have this relationship with my womb. It often lets me down and causes me pain, but it is doing the best it can considering being attacked by adenomyosis. I am grateful for being able to access healthcare and being able to turn to a supportive family to help with financial costs if I cannot afford it myself. Not everybody has access to healthcare or are in privileged positions, there are many people from marginalised communities who have inadequate access healthcare, or it is not available at all. This is the biggest reason as to why these issues need to be de-stigmatized and progression be made so that less people will suffer silently or shamefully.

Who do you most admire in the world?

I admire most in the world the people who have felt pain and experienced the hardest of journeys but still show up each day with kindness, empathy, and compassion for those who haven’t.

Connect with Delainy on instagram: @delainychiswell