Swyers Syndrome...

I had the pleasure of talking to the lovely Gemma about her condition recently, Gemma is the same age as me and dealing with daily struggles with a condition that doesn't have a 'quick fix' and like a lot of people she had to deal with this from a young age. 

I'll get right into it-

C: Right Gemma, can you tell me exactly what your condition is called and a bit about it?
G: "Well it's called Swyers Syndrome and there is no known specific reason as to what causes it. It's basically a malfunction in the body to do with chromosomes. As most people know girls are supposed to have XX chromosomes and guys are supposed to have XY but people with Swyers Syndrome tend to be girls with XY chromosomes but yet have female external and sometimes partly internal characteristics. It can cause all sorts of problems. The main problems are because the female has XY chromosomes, the gonads in general ovaries and testes don't form properly (they are known as streak gonads and have a high chance of becoming cancerous), and seeing as it's the ovaries that produces the oestrogen hormone, obviously none gets produced which stops the womb, uterus and breasts properly forming"

C: So does that mean you needed hormones to go through puberty?
G: "Yeah. I got diagnosed when I was 16 and I pretty much started on HRT (hormone replacement therapy) straight away. There's 5 stages of natural hormone production and my consultant tried to replicate this. The rough dose of oestrogen produced goes 2mg, 4mg, 8mg, 10mg and then 20mg over about 6 years- but as I was already 16 he halved the time length to 3 years. However 20 didn't work for me so he upped it to 30 and luckily my internal organs responded well (baring in mind I'd already had my ovaries removed). However the breasts didn't respond as supposed to I have to have corrective surgery known as breast augmentation"

C: That's horrendous to be going through that at such a vulnerable age, we definitely take that sort of thing for granted and expect puberty to happen... So what happens next for you now? Do you have to take hormones forever?
G: "Yeah it wasn't pleasant! One of the worst things was I used to get ripped into at school about my lack of breasts, which was humiliating and made me not want to do PE or to at least get changed in the toilets. I also used to get picked on because of my weight which can also be a side affect of the condition. Also because I hadn't started my period because of the lack of ovaries people-mainly friends- used to make fun of that. Urm yeah pretty much. I obviously can't conceive naturally so have to have IVF but because of the condition the success rate is a heck of a lot lower. I'm not sure exactly when I'll be able to stop taking them, but I'll be on them for the foreseeable future"

C: That's horrible Gemma, bullying is bad anyway let alone when it's related to something you firstly have no control over and secondly, this is obviously something you're having to deal with at that age ANYWAY, without the bully's!
I know it's not great but at least you haven't had the chance of having children taken away COMPLETELY. So- the breast situation how has that affected you? As a woman?

G: "Yeah. It was horrible. I didn't even know I had the condition then so I had nothing to come back with so I kinda just felt like a freak. Yeah exactly normally people with this there's a very high chance that they'll never be able to hold a pregnancy due to the hormones not having the desired effect but fortunately I'm one of the few luckier ones.

Oh gosh, I hate it soo so much. Literally it's on my mind on a daily basis. It even affects intimacy in my relationship. I know I'm getting the corrective surgery (luckily being funded by nhs because of the rarity of the condition) but I still hate it so much. I'm so worried I'm going to get branded as fake or a slut or something because people don't know the reason behind it"

C: So, bit personal but what exactly are you working with there? Because I know so many people that have small or no boobs at all and they aren't bullied? Why you?...

G: "I guess because I was an easy target in school - I was a typical geek - was pretty quiet, didn't wear makeup or fuss with my hair or anything so people just apparently thought it was okay. It doesn't happen so much since I've left school mainly because I wear extra padded bras which again makes me feel fake etc but I just feel so unbearably conscious if I don't, like I can't even leave the house"

C: The main thing is being confident and if that means wearing 3 bras then WERK IT GIRLFRIEND! Your FRIENDSS??? What friends! It's disgusting that your friends who are supposed to be your safety net were the ones making you feel bad about yourself!

G: "Aw haha thanks! Yeah I know that now but I didn't really have any other people to talk to as I was too shy to make any other friends so I just put up with it."

C: Of course and unfortunately we can't go back and change things, but know now that you have nothing to be ashamed of. Everybody is different and this is completely out of your control.

G: "Aw that means a lot to hear someone say that, I just wish I knew everyone else would be that understanding!"

C: What sort of size do you think you'll go up to and do you think after the surgery your confidence will improve?

G: "Oh I have no idea, I haven't had an appointment with a consultant yet, I don't want to go ridiculous size wise, I just want to feel comfortable in my body and actually feel like a woman! And besides it's not about just size, it's shape correction as well which is another reason I feel so conscious about it and I really hope so, my doctor and consultant think it will - it was my consultants idea for me to have it done as he knew how much it affected me, so I do really hope it does"

C: I'm sure it will as it seems that's what has affected you the most. Please keep me posted though I'd love to chat with you through your journey and see if after the surgery you feel different and how different you do feel!

Is there any advice you'd like to give to anyone else that may have this conditions regardless of how rare it is?!

G: "Yeah it definitely has. It was that and how partners would react about me possibly not being able to have children- or at least being able to conceive naturally. But yeah course I will!

Yeah basically just know you're not alone in the struggle and never let anyone use the condition as an excuse to put you down!"

C: Thank you so much Gemma, you've been fabulous!

Maybe you'll come back and do a video with me when you're feeling a bit more confident and we can squash them haters!!

G: Aw no worries, thankyou you for helping to raise awareness I really appreciate it! And if you do ever need someone to talk to about what you're going through feel free to pop up!

Ooh that's an interesting shout, if I feel confident enough I would love to!

I've been researching this condition all morning and it's so rare I'm finding it really difficult to find any information.

I think that just proves how rare it is, it's definitely not a condition to take lightly as you can imagine.

I genuinely sympathise with Gemma and it really does hit home that someone goes through something at a young age and people feel the need to bully them, it's disgusting and something that I don't feel will ever be resolved.

I'm sorry that I can't provide more information on the subject with things like symptoms like I normally do I just really can't find the information! As far as I've read it's just something that they find!

As always,

Smiles and Well Wishes, can't believe it's November already! Time to watch Christmas movies I think!