Ambassador | New Zealand
My name is Hannah Gibson, and I was born in Scotland but came to live in New Zealand with my family when I was 16 years old. Like many women with MRKH, doctors became suspicious of my lack of periods when I was 17 years old. From this moment, it felt like my world was split into two – the time before I was diagnosed (with my expectations to one day be a mother), and the time after. After a CAT scan and a laparoscopy, my gynaecologist at the time told me that I was born without any remnants of a uterus or reproductive system beyond one single ovary. My vaginal canal was underdeveloped too, because at the time when the reproductive system usually develops, mine didn’t. Outwardly, like other women, I had female genitalia and was chromosomally female – I just had some things missing, including a kidney, adrenal gland, and other quirks. There was no name given to me for this, and it took my own searching on the internet to find other women ‘who might understand’. I’m not going to lie, I sunk into a deep and dark depression on the day of the laparoscopy, and I felt like my identity broke into a thousand little pieces. My own history is complicated with having got ill with Chronic Fatigue Syndrome and Fibromyalgia at age 10 and 17 respectively, and so I was housebound at time I finally found that my missing organs did indeed have a name, and I wasn’t the only one out there with it!
It was at this point that I found out that MRKH has two types, and I fit into the type 2 category, with secondary characteristics such as a missing kidney, bladder problems, but did not have hearing loss or other features like scoliosis. Now, at 32 – my kidney has joined the party and is showing signs of wearing out.
I am delighted to be the New Zealand Ambassador because I truly believe that when one feels different or like an outcast in this world, it is with others who understand us that give us the power to rise up. To belong.
As new women are diagnosed, often in their teens, I feel like I still relate to them because I don’t think a diagnosis like this ever leaves you. Neither does the profound confusion of feeling and looking like a woman (whatever ‘looking like a woman’ means!) but not knowing what it feels like to have a period, or having to see the gynaecologist a lot and decide if you want to try dilating, before (in my case) choosing to have vaginal reconstruction. I remember a few years after diagnosis, being out for dinner with my sister and her friends and they were talking about the frustrations of having a period. I found myself nodding along to fit in. Or when a family friend said I’m lucky I don’t need to think about sanitary items, and I nodded, wondering how she would have felt not being able to have her four children – but having the ‘luck’ of no period.
Instead, I had numerous invasive and experimental procedures on my bladder, unsympathetic doctors focusing on the negatives about my condition, and for a long time I didn’t feel I belonged. Unless I was talking to other women with MRKH. Finding others who understood became my anchor. These brave, strong and beautiful women who have found one another during their journeys with grief, fear, self-worth and acceptance. My diagnosis came at a time when online support groups had only been around for a few years and were in the early stages of gaining traction. I did not know anyone else in New Zealand until a clinic in Auckland put me in touch with a few.
I do believe that MRKH impacts on our lives in different ways as we get older. At 17 I was embarrassed to not have a fully developed vagina, now I’m more acutely aware of my inability to gestate a child. I am forever aware of the things I ‘lack’ because of the centrality of reproduction within society and the constant advertisements, media articles, and programmes about sex. Whilst it is tough for teenage girls to be bombarded by all the messages of what a woman ‘should’ look, act and think like –the messages are compounded when you do not have the organs that people assume you should.
To me, MRKH makes me feel like a foreigner in the most familiar of spaces. That is why having global communities and networks is so important. Many of us who have had difficult experiences within society and the medical community know that there is much education that needs to be done for people to understand. So much more empathy needs to be applied. Because MRKH does not discriminate against skin colour or ethnicity then I do not believe any of us, regardless of where we live or our own privileges, can stop advocating for better care until ALL women have access to care that empowers them.
Ultimately, as hard as it is – MRKH does not have to cast a constant shadow over your life. With support, and lots of self-love, it IS possible to love your body as it is. Or to embrace treatment, or to not. There is nothing wrong with creating a vagina because that makes you feel more comfortable in your body, just as there is nothing wrong with choosing not to. There are no right or wrong ways of dealing with the diagnosis.
We aren’t called MRKH warriors for nothing. We fight to help one another, to advocate, to promote empathy, to love ourselves, to create families that are not necessarily of the traditional variety, to educate others with the reality that it is not having a vagina and a womb that makes you a woman. You are woman if you feel woman. This gives you insight into so much more than if you didn’t have MRKH.