My guest on today’s episode of Period Story is Ellamae Fullalove, the poet, founder of the shame shaking community, storytelling and events platform, Va Va Womb and MRKH advocate.
In this episode, Ellamae shares:
- How not getting her first period led to a diagnosis of MRKH, a condition that affects 1 in 5,000, in which the uterus and cervix is underdeveloped or absent and the vagina is shortened
- How she was diagnosed by the specialist team at Queen Charlotte’s Hospital in London
- The emotional side of the diagnosis and how she went from hiding it to helping others with MRKH advocate for themselves
- How to get an MRKH diagnosis
- How she’ll tackle the fertility side of MRKH, including the surrogacy campaigning work she does
- How she and a friend set up Vagina Fest
- How poetry and being creative is cathartic for her
Ellamae says that it’s so important to find your people and support network so there’s someone you can confide in. Telling your story is important and empowering.
Thank you, Ellamae!
Get in touch with Ellamae:
Hi Ellamae, I am so excited to have you on the show today. And I would ordinarily start by asking you to tell us the story of your very first period, but in your case, that isn’t possible. So you have a condition called MRKH and that affects one in 5,000. So I know that there’s not a lot of awareness about this condition. So can you just tell us more about the condition and when you realised, actually I haven’t got my period yet, what’s going on?
Yeah, of course. Thank you so much for having me. I’m so excited to be on a podcast related to periods because obviously my story’s a little bit different. So yeah, MRKH stands for Mayer-Rokitansky-Küster-Hauser Syndrome. It’s a bit of a mouthful and I was probably back 14, 15 when I started to, friends started their periods, other people at school were starting their periods and I was a bit confused as to why mine wasn’t starting. I’d developed breasts and had pubic hair and was really hormonal as we all are as young teenagers. And yeah, I think when it got to late 15-16, I was like, this is definitely not something’s going wrong. And obviously sometimes do a bit of self-examination because we’re all really curious as teenagers at what is going on down there. Tried to have different sexual experiences with people when I was quite young and tried to actually have sexual intercourse, which didn’t actually work when I was younger, so that was quite traumatic.
I smile about it now, probably out of awkwardness, but it was very a bit of trauma as a teenager trying to have the experiences that others were having and then not being able to do certain things. And obviously we’re taught in school that sex is penis and vagina and that’s how it goes. So obviously when you’re trying to do that and it’s not working, you’re like, what is going on? So yeah, I went to the GP with my mum. She just said that you’re probably just a late bloomer, which is what loads of people with their MRKH hear, late bloomer or there’s a thing that I Googled because obviously I was furiously Googling that what’s going on with me called, I think it’s imperforate hymen or something. So I thought, oh, maybe my hymen’s really thick and it’s just in the way, which means that your period would be backed up, so it must be that.
It must be that. And then went to the GP and they did a lot of prodding and then they referred me and I think the referral made me immediately think something is bigger than just this. Because if it was normally when I was younger, a GP would figure it all out for you and they’d tell you what’s going on and describe you as something or just say, yes, it’s this. But because they didn’t have the answer, I think I was then going into this, oh God, it’s going to be something worse. And I was googling again and I found conditions where people had internal testicles and quite stigmatised intersex and variations of sex development conditions. And I think at that age when you are, I was a girl and I identified as a girl, I was really dreading about this thing that was about to happen.
I just started looking into loads of different stuff and I never came across MRKH. But yeah, I went to Queen Charlotte’s Hospital and there they diagnosed me with MRKH. So I’d never experienced period blood. I should have said that at the beginning. That’s your question. So I never experienced period blood. And yeah, the condition essentially means that I’ve got, my uterus is completely underdeveloped. So they did an ultrasound, which was quite weird at that age being surrounded by all these pregnant people. And I’m just there waiting to get my body checked out for other reasons. Did an ultrasound and my uterus was, they said it’s like tiny remnants of uterine tissue, but it hadn’t developed fully at all. So I do have ovaries and I have presence of ovaries and I do have female chromosomes, but the vagina, sorry, is shorter, and I’ve said this so many times, I always say it backwards in the wrong way round. My vagina was essentially much shorter than the average persons and it kind of stops at the top. So ovulate, but there’s no period blood in a nutshell.
And how long did it take for you to get this diagnosis?
Everyone had quite different experiences. In my case it was I guess quite a privilege to experience, if you can say that because I went to the GP and they referred me straight away to someone that they knew that was a specialist. So I think for me it was as soon as I’d gone to the GP I was referred and in the right place. Whereas lots of people have lots of different experiences where they’re not listened to or the GP that the particular GP they go to doesn’t understand or they don’t know where to refer them to. So I’ve got friends that took months for them to figure out what it was. Yeah, I did feel like I had quite a different experience in that I went straight to Queen Charlotte’s who have a specialist team for MRKH and a specialist psychologist and gynecologist as well. So they were proper MRKH people. So I was in the right place quite quickly.
And so once you got the diagnosis, can you talk more about the emotional side of having this diagnosis, especially at that age, what you had to reckon with and how you got on the other side of it?
Yeah, so I think like I said, with being at school and we had sex education, everyone has this assumption of how everyone’s bodies will develop and things will happen. And there’s the stigma already for girls and people that have periods when they’re younger. That stigma already exists for us and for health and for those that go through that. So I think it was the opposite side of things where I heard the conversations where everyone was being a bit awkward and being kind of in their own stigma of starting periods, like my friend leaked once on the table at school and I had to help her out. So there was so many experiences and my friend had had so much trauma through having periods as teenagers and boys being like, and that is already traumatic in itself. And I think mine was just the other end of that where I wanted that because I wanted to be normal and I hate that word, but I wanted to at that age, that’s where my mindset went, but I wanted to fit in with everyone else.
I wanted to be part of that conversation because not having them made me feel weird and not part of that and was I a girl for me, periods was something that defined you entering womanhood. And because I didn’t have that, I do a lot of poetry around that, about the fact that we have this milestone thing that says, right, this is when you start being a woman, you grow boobs, you have your period. And not having that made me feel so utterly different. And I think that’s the one word that I’ve now feel empowered by, but being different back when you’re at school. And also there wasn’t much social media. There was no one online talking about it. So after diagnosis, I was obviously searching at MRKH, there was no one there is now on Instagram being really proud of it and talking about it.
And there might have been one or two advocates who I always will admire that went before me in this advocacy world of coming out essentially publicly. But I was sworn to secrecy. I was like, Mum, do not tell anyone my sister, my dad, do not tell anyone. And obviously they can, they wanted to confide in people as well, but I didn’t tell anyone for about eight years of my life, so just complete. So people have quite shocked now because they see me online as this advocate and this really open person that talks about my genitalia online, which is quite rare for people to do. But yeah, I think the secrecy thing for me was just reflects the shame. I was so upset by it. I was actually with my dad when we originally found out, he was a bit upset and he’s not very emotional person either because my mom just went, oh, it’s all right, it’ll just be something that they’ll send you home, it’ll be fine.
So she didn’t realize the extent of what was going to happen and always wished she was there. But yeah, so there was a lot of grief and thinking I had this body that had a womb that would have those experiences of pregnancy and you find out almost when you were a child that you’re not going to carry children. So for me that was a huge thing as well. But then you’ve got the added stigma of this vaginal, missing vagina almost, and the talking about sex that everything was encompassed with fertility, sex vaginas were so young and I think I forget actually how big it was at that age to have, it was one diagnosis, but there was a million different elements and layers to it that were just so complex to deal with. And I know anyone dealing with infertility, it’s shit. I think when you’re younger, you don’t know how to process emotions about fertility because I wasn’t thinking about having babies and all of a sudden I was thinking about I’m going to have babies, I’m 16.
I know some people do, but I just wasn’t in that place to have kids back then. So yeah, it was really, really hard and I cried a lot, had counselling, I was very depressed and down and sad, yeah, when I, sorry, I’m going on, on and on, but when I first told people I was about 23, 24 and it was actually meeting my current partner who I’ve been with for eight years. I told him, he was the first man that I told about this and he just said, oh, it’s alright, you can talk to people about it. And from that point, I started doing this drunken reveal, I haven’t told you, but I’ve got this thing. And as soon as I did that, I was like, oh, the reaction wasn’t judgment, it was just care and compassion. Obviously people didn’t understand, but it was just, oh, I’m so sorry that you had this secret from everyone. And I would cry a lot about the womb element when I was drunk and be like, I can’t carry children. Never ever said anything about the vaginal side of things. And there was a lot of fear around the saying the letters MRKH to anyone because Googling just meant it clickbait content of women with no vaginas. And I didn’t want to just have that as my thing. That was not what I was ready to talk about. But yeah, the rest was history, started going online, talking too much.
No, it’s really interesting going from feeling a lot of shame and hiding it for so long to then being so open and very inspiring and talking about your journey helps empower others. And I wonder what was the catalyst for you? You said your partner was the first person that outside your immediate family that you told. What was the catalyst for you telling him?
It’s a funny story. We were still really close friends and not quite together yet, or we’d kind of been seeing each other for about a month or something really new. And there was a support group for MRKH and we became so close to, I was like, do you want to come with me to this support group? But he didn’t really know what it was. He knew that I couldn’t get pregnant and I just said, I’ve got a fertility thing. And I used to cry about it all the time. Usually after wine and drinking and the tears come out, I’d never go into what it was. I would just say I’ve got an underdeveloped thing. And irreg, I always used to say I had a regular period, so something I missed out was I always pretended to have a period at school, had a big period reveal where I started with this friend.
Anyway, that’s another story, but again, that just comes down to the fitting in and wanting to be part of everyone else’s experience. But yeah, so I just said, do you want to come to the support group with me? But in the car I was like, I need to tell him what it is. It’s going to be really awkward if he’s there trying to learn about it and he actually doesn’t know what this thing is. So I just said again, it’s like this disclosure drama. I was like, oh my god, Chris, I need to tell you the full truth. And he was like, okay, what’s going on? And I just came out of this, I was born with this and just went into the diagnosis. My vagina is underdeveloped and I always use language that I was more comfortable with. So whenever said I was born without, and I used to get really anxious about that term without, because that almost meant that it was a completely missing part of me and I’d always used the term underdeveloped.
And I think that was just a comfort thing where it kind of seemed like it did start, it just didn’t carry on. And it just made me feel a little bit more complete having felt so broken for so long. And then he just went, oh, okay, that’s fine, don’t worry. So okay. I think I built up so much more in me to say this vagina I thing out loud, which is the first time I’ve done it to anyone. But then obviously family and stuff like that. And his reaction was just kind of, I was like, do you not care? Because it was so just blunt in a nice way because he obviously didn’t really know how to react other than to make me know that it was okay to talk about it and that’s fine and it’s normal and people go through it. Yeah. So that was me telling him.
And then that I guess empowered me to talk to more people and almost the coming out with MRKH was like an added level of my condition that people didn’t know about because they’d only heard about the fertility side of things. And for me, the vagina element was so much more stigmatised in that it was very personal. I went through a process of vaginal dilation when I was 16 as well, which was really horrible and not horrible, but in the way that, again, that was why this was such a big secret for me. I essentially made my own vagina through dilators, which are clinical tubes. And you kind go up inside, you start small, similar to people with vaginismus, and then you go up and up and up, you are essentially stretching the vaginal muscle to become something that you can have sex. We’re all taught that sex just means something going inside. So I was so desperate to make one so I could do all the things everyone else could do. So I did that fairly young. Some people wait, I was just like, no, I want to get it done. But that was equally something that I feel so terrified to talk about. And then found Instagram and became an anonymous advocate. So I started posting anonymously about MRKH and the rest was history. So I then became quite a big advocate and started doing events for people with MRKH. But yeah, questions were…
So for people who are listening and maybe someone who’s listening who thinks they might have the condition and is not sure, can you talk a little bit about diagnosis pathway? So as you say, you were extremely fortunate in the fact that you got referred to Queen Charlotte’s, they have a specialist unit there, but that isn’t always going to be the case. So can you talk a little bit more about diagnosis pathways and for someone who does need to advocate for themselves a little bit more than you may have had to?
Definitely. And it’s so important because yeah, there’s so many kind of inequalities in healthcare that people face and this is corners of the world. So my podcast was essentially me trying to understand MRKH in different corners of the world. And I know we’re obviously more talking about the UK at the moment, but there’s people all over. There’s doctors that have got no idea what this is or it’s completely shamed and this is horrible. You need, to those people that have been disowned by families because of MRKH, due to lots of cultural stigma. And through my own podcast, I’ve learned so much about the different experiences and mine did seem very much like GP, hospital, diagnosed, go deal with it and here’s your dilators. Even given dilators was a privilege in itself because people have to buy them themselves. They don’t know what they are, they’re not taught about them.
The doctors are too stigmatised to tell a young person to go and do that to help or the option. So the diagnosis pathway I guess in the UK would be if you haven’t started your periods and you’re worried about this one, it could be many other things. There’s lots of different people that have, don’t have periods for many reasons from premature ovarian insufficiency, POI, which affects young people as well, different hormone issues like eating disorders. There’s so many things that can impact periods. So one is that a lot of people see MKRH as no periods, and I’ve actually had a couple of messages from young people saying, I’ve got no periods, I think I’ve got this. And I think we all do. You go down the Google path of it must be something like this, and we all find something that’s more stigmatised or not worse in that sense because there’s people that do have those lived experiences, but more stigmatised than you think it’s going to be or going to be something that’s on this level of the scale.
But actually it’s just this, but in my case it was MRKH, but again I thought it was a condition called complete androgen insensitivity syndrome, which is another condition. And I’ve got a girl with that in our support circle for MRKH and differences in sex development because she has a very similar experience, chromosomes and internal reproductive system, different. She has internal testes, externally is typically developed as a female, whatever that means, in terms of breasts and pubic hair. But yeah, so I think go to your GP and also bring information with you that you’ve researched yourself. Because I think I’ve been to the GP before later on in life and they’ve said, oh, what’s that? What’s MRKH? And you almost have to keep, so nowadays, even though I got my diagnosis quickly, I do educate a lot of GPs and doctors about MRKH because they’ll always say, when was your last period or this podcast or when is there any, possibly you could be pregnant, but that should all be on the system.
Yeah, they should refer you for an ultrasound or a transvaginal ultrasound if it’s possible. Blood tests as well just for chromosomes and just sort of checking all of that. And there is, like I said, Queen Charlotte’s is like the UK center for MRKH, but that’s only because it’s been quite rare and again, not well known. But I think the more it’s known, there’s different hospitals and I again can’t remember the names of them around London and different areas who are becoming more specialists in that area. So Queen Charlotte’s have a patient advocacy board and I was on that one. It’s just to talk about how they can almost replicate their services. People are coming down from literal Scotland to come to England to go to Queen Charlotte’s just because there’s nowhere else that provides what they provide. So I think their service, there’s a lot of work that the NHS needs to do to replicate that, even though it’s, so the numbers of MRKH is one in 5,000 people born female.
So if that service was replicated, but in just, I don’t know, a smaller scale in different areas, which it’s starting to be, then people will have that same care. But yeah, ultrasound, and then I think getting the diagnosis of MRKH should come with added support. So it needs to be you have got this condition and obviously there’s ways that they can explain it, which can be a little bit less blunt. Some people have had really awful experiences with how they’ve been given the information, just be a letter or just being told and then not talked to afterwards. But from my experience, the care that Queen Charlotte’s provide was you go in, you meet the gynecologist, you meet the nurse. I stayed in the hospital for three nights to do vaginal dilation so they could show me how to use dilators, which was a horrible experience, but made it so supported by them and you know that you are doing it right and you understand what you want out of that situation. And they also provided a psychologist as well. So you could put counseling in through this MRKH, almost like team. So there was a counselor, a specialist nurse, and a gynecologist, a doctor that was there and understood MRKH inside out to put it in, no pun intended.
It’s so hard, isn’t it? Because I think I know how to advocate for myself now having become an advocate for MRKH, but it’s so hard to know what path people are going to go down. I know a young girl who was 15, messaging saying she was going to doctors and they weren’t referring her, and she had to really fight to get referred to Queen Charlotte’s that we were all saying, this is the hospital, this is where you need to get to. And they were just like, no, you can’t go there. We’ve referred you to Guy’s or whatever. And then there they were saying, oh, can you come in for some genetic tests? We’re really interested in this. And just saying stuff that was really unemotional just because they were interested in it. So I think, yeah, it’s just knowing where to go. But I think that’s where the peer support is a huge part of MRKH because finding people that have got your condition near where you live.
So I started a WhatsApp group when I was 24 and it’s got 80 people in there now from people in London that have all got MRKH. And I do Christmas events and we do once a year, we meet for Christmas, we do picnics in the summer. So that’s also been a huge part of it. And that’s where I think people learn from each other because it’s not just me, it’s all of them have got different stories how to advocate for themselves in that situation. And like I said before, I’ve got friends with MRKH that have had lots of added cultural stigma and never ever want to be in pictures, which is completely understandable because I never did either. And I think there’s people that are scared of their condition being known. There’s people that are scared of their own families. There is people that, like I said, because of the inability to carry children and the expectation that they should be carrying children, that’s also a huge thing. So I’ve had an experience where my friends and family have been supported, stigmatised, but they support you and I still feel shame and stigma from it. But there’s a support network and some people don’t have that. So yeah, it’s sad but true.
So can you talk a little bit about the fertility side, because as you say, without having a uterus, you won’t be able to carry a child and you are involved in a campaign, a surrogacy campaign to help close the fertility funding gap. So there’s been a real journey that you’ve gone on in terms of your awareness, your acceptance levels, your advocacy, the fertility side is a big part of it. So can you talk about your personal experience and then talk a bit more about the advocacy part of it?
Yeah, of course. So fertility side of things, there’s, sorry, my brain just went there. So I was thinking about womb transplants, but that’s a whole nother thing going on in the world. But yeah, I’ll talk about the surrogacy side more. So I think growing up I’ve always gone down the kind of route in my own head, the route to parenthood in my own head because I do want to be a mum. Not obviously not all people do, which is fine as well, but I’d love to adopt. I hate the fact that anyone that can’t carry children or that struggle with fertility is always just go and adopt. Just adopt. There’s so many kids that need you. And it’s like, no, those kids need anyone. Anyone that can reproduce and make babies or that’s had their own babies can still adopt. So I think there’s a huge stigma with that. I’ve said stigma about a million times in this podcast. I feel like it’s like my safe word.
There’s a huge thing about people that have struggled with infertility from MRKH to the one in six other things that people go through with infertility, which is also equally sad and horrible and traumatic for people. But yeah, there’s a massive thing where people just say, just go and adopt. And I think there needs to be just more care around the fact that people that want to go down the routes of having their own biological children, it’s not because they’re selfish or in any way self-obsessed almost. I want to have my own babies, but I think it’s just a natural thing to want, and I think that’s okay. So even I’ve gone down this path of feeling weird that I actually just want to get my eggs out and have someone carry our baby just because it’s ours, when actually we could adopt, we could get, I don’t know if things work in there with eggs and Chris’s sperm and all that sort of stuff.
We haven’t even gone down the path of checking that out yet. But we know that if it wasn’t ours biologically that we would still love the baby the same. But I think there is a desire to want to do that because we have got those parts we hope. So I think that’s the first thing I wanted to say is just around a lot of expectation that if you can’t carry, just don’t bother. Or if you can’t have your own babies, just don’t. Don’t worry about it. And I’ve got a lot of gay friends as well, which almost makes me just feel part of that club of we’re all going to have different alternative routes to parenthood. My best friends have just had a baby through sperm donor and my other best friend’s pregnant through that. I’ve got friends that are going to be going down the route of surrogacy or adoption.
So it’s actually quite nice to be in circles where it’s normalised to have a different path. Everyone’s path equally is difficult and wonderful all rolled into one at the same time, but it just makes you feel kind of part of the club. But yeah, so fertility wise, I on a bit of a tangent about that, but the surrogacy side of things, it’s more specifically for people with MRKH, I’m talking about that it’s rarely funded. So when I was younger, I just remember thinking, why do we have to pay thousands of pounds to have babies? So many people have to do that. And I completely understand that there’s so many inequalities in funding, but specifically for MRKH, if we have ovaries and there and we are ovulating, we do ovulate. So my egg gets released and then just disappears, but it still works. And a lot of high percentage of people MRKH can have their own biological children.
Obviously those that can’t for other reasons, but that’s separate to MRKH. Generally ovaries are functioning with the diagnosis and to have a surrogate if you apply for funding and it’s not you carrying the baby, they see it as unethical. So it’s a really strange way of thinking because surrogacy is legal, there’s obviously legality surrounding it. It’s a legal route to parenthood because you can have a surrogate, you can’t pay a surrogate to carry your baby. You cover expenses and you can’t advertise to be a surrogate. And equally you can’t go online and say you need a surrogate because that’s kind of advertising a role and it should just be like a mutual agreement because all of the guidelines and policies, and they’re called Integrated Care Boards who actually make decisions about funding, which used to be clinical Clinical Commissioning Groups, which is CCG. So there’s lots of different places in different corners of the UK that make decisions separately for different people.
So it’s a postcode lottery for everyone that has infertility or that wants to go through IVF or is the same sex couple or et cetera, et cetera. There’s lots of different rules for different policies, but the one rule that seems to be consistent across all the policies across the UK is that they just don’t fund anything if your end result is having a surrogate. I think it’s almost just like a ruled out option for anyone. And I think I only know one or two people that have appealed it and got funding based on the fact that the womb is absent. It’s not something they can help. This doesn’t just affect MRKH obviously. So this is anyone that doesn’t have a womb in a couple or as a single person that wants to have a child. So same sex couples that don’t have a womb between them, men that don’t have a womb between them, single person that has MRKH or something else, someone that’s had a hysterectomy after gynae cancers or endometriosis, can’t carry children.
There’s so many different reasons people may go down the route of surrogacy, which kind of normalises it as well. But all of those people that need to know that surrogacy will be on the map. So there was an amazing campaign, I don’t know if you heard, can’t remember their name now. It was a lesbian couple and they did an amazing campaign to get IUI inequalities spoken about because it’s something that same-sex couples and people that need to go through, IUI, had to self fund, it was almost like a tax on them that because they couldn’t do it naturally, they had to self-fund this part of their journey just because they were, and it’s like that’s discrimination against that particular group of people and that they did an amazing job at getting it looked at. So lots of the policies are now reviewing IUI and starting to help fund parts of it for people before they do it.
But yeah, again with surrogacy, it’s still kind in that sense. It’s not, there’s a government website that lists all of the integrated care boards which decide on funding and have different policies and then it sort of says what parts they fund. So it says IUI can’t remember all the list of things like the words for it, but there’s a list of things on there and surrogacy still isn’t on there. So that’s kind of where we come together. So I teamed up with MRKH Connect, who are the UK MRKH charity and I work with Charlie, who’s the director of that charity. Loads and loads of different things and she sponsors our events and it’s a really nice peer support working group. And Charlie works closely with Queen Charlotte’s Hospital where I was diagnosed. They’ve got a team there who are quite supportive. There’s only so much they can do with the campaign because the NHS a lot of the time can’t really get involved and things like that.
But they can give advice and be a kind of brand support for that as well. So a lot of their support group meetings, surrogacy inequality and funding is spoken about loads. So we just got together and said, let’s do this ages ago I made the survey and never did anything with it. So we’ve kind of redeveloped the survey to learn about different people’s funding experiences, but we’ve now partnered with different people, so Cysters who work with black and BAME women and people from marginalised backgrounds. So they support a lot of people going through reproductive struggles and Neelam is amazing, so we’re working with her on this as well. Endometriosis Foundation have just joined as a partner, hopefully the Eve Appeal, we’re sort of in chat with them about stuff and Fertility Network UK. And then there’s a page called your post DSD. Anyway, loads of different partners, which I’m trying to remember now are not willing to not name anyone.
But yeah, so we’re all just going to, we’re getting together to regularly post about it. The survey is the main thing to understand people’s funding application journeys. The next step will be a petition to try and get, even because got to be realistic about the changes we can make. And I think even just to get surrogacy on the map for the government to recognise in those policies, which aren’t. So we are actually physically going through the policies ourselves, doing the work for them. And then we’re just saying, look, here’s this information, please can you make this known to your resource? But yeah, in a nutshell, that is what we’re doing at the moment. So it’s really exciting and it’s an amazing team to be in. And it’s just started really, we’ve only just kind of launched the survey and the next steps is storytelling and education and webinars and lots of different people involved in that. So yeah, it’s exciting, but from something shit. Yeah, it’s exciting now.
What do you know now that you wish you knew when you were first diagnosed with MRKH?
Do you know what, I asked this question to everyone that has MRKH, and I don’t know if I’ve ever asked myself because there’s so many good answers that come up. I’m like, oh, that’s amazing. Oh, now I’m like, oh, what I say to myself, so much easier to listen to other people talking and then when it’s yourself, oh God.
I’d like to tell my younger self that you are never alone because being diagnosed and not wanting to talk about it made me feel so isolated. But there’s so many of us out there that have MRKH, that have pair and love and support to give some of my closest friends now are people that I’ve met that have MRKH and I couldn’t live without them now. And I think everyone that has a diagnosis in any way, shape or form when they’re younger, the one thing to do sooner rather than later, because it took me a while to get into that mode of talking to other people, is find your team, find your people that understand you because you’ll always have close friends and everyone will be going through something.
My brother, for example, was diagnosed with ulcerative colitis, which is like a Crohn’s disease almost when he was younger. And it just made me realise that so many different people have different experiences they don’t talk about or they don’t really seek a support network for, and I had friends that had lost parents, for example, when they were younger that were grieving. I had friends that were going through loads of different things when they were younger, but this was just my thing that I’d gone through and amongst other life situations, but just the thing that was really, really in need of support. So just find your support network because as soon as you find that one person that can understand you, not understand you fully, but that can relate to your experience, that’s when you kind of go, ah, it’s like a relief. And I just remember having my first dinner with four of us with MRKH and the openness was something I’d never had before.
Or I could just go, oh, did you go through this? Did you have dilators? Did you have this? Oh my god, what did they say to you? And that feeling of it was excitement over something so traumatising, I can’t even explain it. It was like we had so much to talk about and ask about and there was no stigma in the room around the vagina element, the womb element, of not being able to carry children the grief, it was just, excuse me, my voice. It was just so open. Yeah. So I think my biggest bit of advice would just be find your people and find your support network. Because they are out there and it’s always going to be someone that you can confide in fully and I mean fully, right? Not just talking to any mate. But yeah, that would be my advice.
To switch gears a little bit to talk about your poetry. So you’re a spoken word poet and I had the pleasure of hearing one of your poems at an event we were both at last month. Can you talk a little bit about poetry as a creative medium for you and why that is something that you’ve chosen to pursue?
It’s an interesting one because I’ve only just identified as a poet. I always just used to write stuff and I’ve done a few open mic nights, but that was one of the first times in, because I’ve done it at charity events and smaller events. But that was the first time in a commercial setting that I’ve performed poetry and it was such an amazing experience, but it was so good to be alongside you as well on the panel. But yeah, it’s something that I’ve always enjoyed doing at my granddad’s funeral when I was like, I think it was that 16, 17 or something, I wrote a really long poem and I performed it at the funeral not performed. Do you perform at a funeral anyway, sorry. You spoke at the funeral and that was the first time I’d written something and said it out loud to people and then I stopped doing it for a while.
But I’ve always loved journaling and writing and just scribbling little quotes and making quotes about life and MRKH. And it really started when I started doing the MRKH advocacy, even though it wasn’t poetry, it was creating content that was words that were going to mean something to someone else, like no womb, no less, like all of that womb, no less of this. And just so many little like the insta graphic quotes, and I got so obsessed of writing them and making them and sometimes making them rhyme. And then I published, not published, but posted a blog which had my stoy about MRKH on it. I just find it so cathartic because I find even this sometimes in podcasts, I find it easier to interview other people and not be interviewed. But this I find hard, I find talking about it openly, even though I’ve done it so many times, quite difficult.
But when you’re doing it in a way that’s creative and you’ve written something that’s almost like powerful, like jumpy, rhythm, rhythm of your story, it just flows easier and you’re performing it in a way that’s your vulnerability, not goes out the window, but it’s over here and you can just speak your truth, but through a medium that you’ve written something that you know really like and you’ve got it there and you’ve got your script almost. Yeah, writing poetry, I love writing prompts and I think that I’ve done quite a few writing workshops. So during lockdown, me and Ali Hensley, who’s another writer with MRKH got together and we hosted a Zoom writing workshop every couple of weeks. We had people from from Asia, but India, there’s people from literally corners of the world that have never even spoken about MRKH to anyone coming to these Zoom calls because it was almost like a global impact thing where you see it online and it’s lockdown and everyone’s in weird corners of the world doing not being able to do anything.
And we had 30 people coming on and we just gave writing prompts sort of relevant to infertility and MRKH and people would just sit there and write poetry and stories and letters and it was so nice. It was really, really heartwarming. And I’ve done infertility writing workshops and stuff for people with MRKH and outside of MRKH. And I think for me, I find writing quite easy. So I can just sit, I get creative block, but I could just write all my notes all the time, the phone notes, writing poetry, writing things. Some of it doesn’t go anywhere, just keep it. I wrote poetry to perform at open mic notes, but I think everyone with a writing prompt can really delve into their experiences and emotions and feelings so much so, yeah. But again, I don’t really call myself a spoken word artist. I’m just someone that enjoys poetry and I’ve just started reading it to other people. So yeah.
I think it’s so interesting when people use creativity to express what they’re experiencing, whether it be like with regards to their health or personal experiences. I think creativity is just such, anyone can be creative. And I think that’s when something that people don’t realise there’s creativity through cooking, it’s, it could be painting, it could be through gardening, that we can all be creative. And I just think it’s so beautiful how poetry is really a medium that really resonates for you. The last thing I want to ask you about is Vagina Fest. Can you say more about that?
Yeah, of course. I was going to say, as well as poetry, I love painting, so I’m like just love it all. Just anything cathartic and mindful. And I love doing canvases and textured art. I’ve got so much crap that is not online that I do behind the scenes. It’s chaos anyway. Yeah, just also for anyone listening do tap into, because a lot of my friends say I’m not creative, I’m not creative. Everyone, like you said, is creative. Everyone’s got something that could come out of their being, be it a painting or this or abstract art or a piece of poetry if they were just given a prompt to do that, which is why workshops can be so empowering. Yeah. Anyway, Vagina Fest. So I met Emily, who is a spoken word artist, and I don’t know why, she’s like, she’s amazing, spoken word. She does all poetry performances, she’s been doing it for a long time, really inspiring writer.
And she performed at an online event that I hosted with another amazing creative, so many creatives called Femi who does origami vulvas. So we teamed up, I did the poetry side of things and the storytelling, and Emily was doing origami and then other Emily came on to perform because I just said, I’d love you to come and perform at this event. And then me and Emily, poet Emily got together and sort of created an event more focused on the storytelling and poetry side of things called the Vagina Fest. And yeah, we just got together and just said we’d love to start with an open mic night, but it became quite big. So we ended up thinking, it’s called the Vagina Fest. We don’t want to have an open mic. People just walk in and they sign up on the night and then you have 10 people talking about one thing, like their periods for example, that would be quite repetitive.
So we ended up doing an application process where people would apply to perform at the event. And we got so many in of people just with stories to tell from vaginal mesh experiences to stories, to poems to performers. So we were really excited like, oh my God. And we obviously had to go through the process of having 10 people perform and then sing. There’ll be some space left because we wanted a variation of stories and it couldn’t just be 10 people, 10 white women talking about endometriosis for example. It had to be diverse. And I think intersectional was one of our biggest things. You didn’t have to be someone with a vagina to come to the festival. You didn’t have to be a woman to come to the festival or perform at the festival. We did have a couple of guys actually apply, in the end, they didn’t end up performing.
We had so many different other people that we wanted to amplify, but it would’ve been interesting to hear some. So anyway, some stories. We held our first event, but the Vauxhall Tavern, we sold like a hundred tickets. We raised some money for what we could because we were obviously wanting to pay our headliners and pay our acts as well. We raised some money for a couple of different charities on that night and it was amazing. We had my really good friend Sharn, one of my best school friends doing, they’re like a drag king, so they were almost like a gender, gender-bending drag performer. So Shard gets bited up, but does an amazing body positive and also really meaningful campaign performances. So yeah, those amazing people we had, we’ve had drag queens, kings as headline acts. We’ve had Holly McNish on our first virtual event when we sold about 450 tickets.
That was for the Eve Appeal and MRKH Connect. So it started virtually and then we took it to the stage and virtually we had Holly McNish, I don’t know if you know Holly, but she’s an amazing poet, Missy Yankee, who’s amazing. So we had all these really cool headliners performing and the stories were just, some of them were hilarious, some of them were really vulnerable and traumatic, but it was such a safe space of storytelling and just this word vagina. We knew that obviously the word vulva should be used more for externally, but it wasn’t about the word. It was about the hidden stigma of the word and the fact that the vagina is the hidden body part, which is actually inside. We actually thought that reminds us more of storytelling and the fact that this body part’s hidden, our stories are hidden. And it was just about saying the word out loud, also educating people on what that word means and what it doesn’t mean because obviously vulva, vagina, different things.
So then we did another event a year later and we sort of expanded it because again, I love art and all things art. So we had a market stall of artists as well as the performance side of things. So it was like the market was there and the performers were here. We need to test it a bit more and do it next year with that blend of things. So we’re hoping to that it grows. But yeah, it’s amazing. And Emily’s amazing to work with. We want to do it once a year. So we have that month where we’re just nonstop talking to each other and planning it and doing Zoom meetings and calls. And so yeah, that’s Vadge fest, but we’re going to do it again at some point. So 2024, we had a bit of a break. It is quite overwhelming on top of, I work in social housing by day and this is all weekend weekend stuff. So yeah, that’s Vadge fest.
Yeah. You’re so interesting. You’ve got so many things and your going on and your advocacy work is incredible. What thought do you want to leave listeners with?
Well, that’s a hard one, Le’Nise. Yeah, it’s so hard, isn’t it, to make that those powerful statements. I just want to be really honest and say that again, it’s like this, you are not alone thing, but your story, anything that you’ve been through. It’s like a catalyst change because MRKH is just my little, I know quite big for me, but just my little corner of the internet talking about being born with, it’s being born with that. But from telling my story online, actually just talking about it and going public. I’ve had friends contact me that they’ve not spoken to for years saying, I’ve got this, I’ve got endometriosis and your page really helped. But friends with PMDD, which has really impacted some of my friends’ mental health and hormones and experiences, and they felt suicidal from conditions like this. And it’s that there’s always going to be someone going through what you’re going through and talking about it and telling your story is not shameful or self-obsessed and being online.
So I think also, yes, I think storytelling can be so powerful. So just I think, sorry, my brain’s gone now, but to take away, I think to tell your story can be such an empowering thing. And it doesn’t mean you have to go online and talk about it, but you’d be so surprised about the amount of people in your life that are around you from family members that sometimes just sit around a dinner table and don’t say anything personal or don’t talk about personal experiences to cousins that you’ve like, I’ve got people that I know that have gone through miscarriages that I just never would’ve known if I wasn’t this open. So I just think people have that stigma between each other about talking about things and being open.
And until they sort of see someone else doing it or hear someone else doing it, that’s when they go, oh, I’ve got a story, I’ve got something to tell. So when you feel safe to do so, and it doesn’t have to be public, just write your story down, write a blog about yourself. It can literally just be for yourself, but write about your story because writing it out can make you feel so just empowered by your own story. And again, that for me meant being completely anonymous. And I started anonymously, never planned to be Ellamae online with MRKH, just wanted to be this little advocate that was behind, no one knew who I was, but when I wrote a blog and even though it was anonymous, I was like, I’ve written my experience out onto something and someone might read this. So you never have to be public to be an advocate. And that’s the other message I want to give. There’s a lot of people with MRKH who feel like their advocacy is less because they’re not the forefront and they’re not showing their face. But there’s people that advocate behind the scenes and they’re so powerful. So you can be an advocate for whatever you are going through and you don’t have to be public about it and you can change someone else’s life and your own at the same time.
Where can people find you?
Yeah, thank you so much for coming on the podcast. Yeah, thank you for sharing your story.
Thank you for having me. It’s amazing. Thank you so much. And you are doing amazing work as well, so thank you.