It’s been a while since I’ve sat down and given you guys a health update – I know it’s not something that I have to do, but since I’ve shared so much already, it only seems right to keep you updated on my progress. I guess there’s still part of me that holds resentment towards my own body, that feels embarrassed and ashamed – awkward and unsexy. These are all important reasons to keep the conversation open surrounding female health. If I can make just one person feel less isolated and hopeless then it’s worth it. As many of you have messaged me saying, there just isn’t enough candid information out there when it comes to our vaginas – we often quietly whisper to friends, we google symptoms incognito, we bend awkwardly to try and look in the mirror, and often even then, we still don’t know what the hell we are looking at…
Let’s face it, vaginas are complex. They are also something to be proud of – being a woman is an amazing thing, and we shouldn’t feel shame for all that our bodies do. The good, the bad, and the sometimes heartbreaking…
We are not our bodies. We just have to do our best for them as we go along. Sometimes we might abuse them, damage them, have too many drunken nights, eat too many of the beige coloured foods…
There’s always that hope that one day you’ll wake up and realise how much it puts up with, and just how much it does for you on a daily basis without you even realising.
Learn to love every part of yourself – even the parts that are different and don’t work how you’d like them too. They are the cards you’ve been dealt, and acceptance is the key to moving forward and being happy…
You might be able to make changes, but you still need that level of acceptance to move forward.
This is something I’ve been struggling with – my last operation including a biopsy. The results read: early signs of Lichen Sclerosus. A relatively rare condition that mostly occurs in women over the age of fifty. “Ahhh, well of course I have to have it don’t I?” I thought to myself whilst fighting back angry tears. Treatment? There is no cure but it can be kept under control using steroid creams. Ahh I’ve course there’s no treatment – life hates me, my vagina hates me, I can’t battle this for the rest of my life, I can’t battle my sexuality for the rest of my life. What if it ruins my relationship? What if I end up sexless and living alone with cats?
These are all thoughts that have crossed my mind over the past few weeks. Along with googling images of my apparent diagnosis and freaking myself out. It’s worth pointing out that I don’t have any discomfort in that area – my second operation was to cut into some scar tissue that was causing tightness. Long story short – my hole just looked smaller than it was meant to be. That’s basically all that looked different. I was told that this could be from having a bad episode of lichen sclerosis when I was younger – the condition is known to cause scar tissue in an attempt to heal itself. However, when it heals, it also makes the vagina smaller – something that I guess a lot of women after pushing our numerous children might love the idea of.
Something which I’ve had people say – will surely that’s a good thing? No it’s really not. In fact, in stops you having sex completely, being intimate becomes almost impossible. It becomes this complete emotional barrier that you have to try and face in order to just make yourself feel like a normal human again. It can make you feel less of a woman, completely undesirable, and completely inadequate to your significant other.
My second operation was to cut into this scar tissue in the hope that it would heal back to a normal sized opening. Nothing is ever simple with vaginas though is it? As I’m a young person, my skin contains a lot of collagen, therefore, to my horror, it healed back to the way it was before. It felt like I got so close to having this normal life that I’d always dreamed of, and then my body was just like nope, not today…
This is the hardest part about struggling with a condition – sometimes our bodies have other plans, and sometimes our heads aren’t prepared. For the most part, I’m happy, I’m not in any pain, it’s just that I can’t function normally at the moment – I can’t have sex. I’ll go through weeks of feeling happy and then all of a sudden I’ll remember that I’m still on a health journey – still trying to fight against my body and reason with it. Let me be normal, please just let me be normal.
The next part of my journey will be a steroid injection – inserted into the scar tissue will which hopefully make it disappear over the course of a couple of weeks. The collagen in my skin means that a steroid cream just isn’t cutting it – so an injection will be much more powerful. I’m not sure how this will be received, but it might just be a case of having them every now and then to keep the scar tissue at bay. I guess it almost feels like being some sort of super fast healing alien – at the moment, I don’t have any cuts, or sores, or even dry patches of skin. Just this bit of scar tissue that’s not detectable to the untrained eye – thus, making it hard to accept that I even have a problem to myself sometimes. For a long time, I just convinced myself I was ‘normal’ – because I looked normal. Fast forward many years, many private Gynae sessions (this is where I sought help), and two operations later – it’s still something I’m figuring out. There’s been so many different layers to both the physical and mental barriers I’ve been battling, sometimes it just ends up feeling like a case of bad luck.
Not only did I have internal issues like a septum, and issues with my Fallopian tubes – I also have this external barrier that’s ongoing. I found myself thinking: what are the chances of my vagina trying to essentially close itself off from both sides? I’m not even a religious person, but boy, God definitely did not have plans for my vagina. I made jokes to friends, I kept it lighthearted, it’s what I like to do – be sarcastic, play it down, people have worse things going on. The truth is, it doesn’t matter what other people have going on because your struggles are just as significant. I have the right to be angry and upset because this is something I’ve been battling to get to the bottom of since I was sixteen. Ten whole years of not knowing why I didn’t feel good enough, why I felt inferior, why my body felt foreign and broken.
I just wanted to write all this down incase it resonated with anyone going through something similar. The most responses I’ve ever had to a posts are to my ones about female health. So every single one of you that messaged, and especially to the ones that are still quietly suffering – you are definitely not alone. You’re not a freak, you’re not unsexy, and you will find a light at the end of the exhaustingly long tunnel.
I’ve made so much progress in the last couple of years, and I want that for other people who are suffering with similar issues. This is something that could have been dealt with in my teenage years, but I just didn’t know how to help myself – neither did most doctors that I was fobbed off by. You might be told to light some candles, to use more lube, or to just ‘relax’. Often all unhelpful bullshit that you’ve already tried yourself. If it’s all not working then listen to your own body and not to other people – you know best. I promise you that female intuition is the most powerful thing. I always knew that there was something physical that was wrong with me, but was constantly told it was just Vaginismus. Something which I’ve spoken a lot on here about before, and is caused for a number of reasons that all differ in extremity. I was told mine was caused by just simply overthinking that I was small down there – by just freaking out.
Ten years later and it turns out I was small down there. My Vaginismus was caused because my body was trying to protect itself from being damaged even more. It was a relief to finally hear that from a professional last year – the comfort it offered me was second to none. It felt like all my battle scars were somehow worth it. They meant something, and I wasn’t just being made to feel like a crazy person anymore. This is why it’s important for me to write about, to urge you to keep booking appointments, getting second, third, fourth opinions. To never give up on yourself, to never hide your scars as though they are something to be ashamed of.
Everything that we are is beautiful, even the parts that we wish were different. I have to allow myself to think this way – for the child in me, for the woman that I’m still becoming, and for the daughter that will look up to me for answers…
Photographs by Catherine Booty
Shirt & skirt – Na Nin vintage
Shoes – Topshop
SHOP THE LOOK
Thank you so so so much for these posts. I’m sorry to hear about your diagnosis but at the same time so pleased to hear you have one. There’s nothing worse than being fobbed off time and time again (the “light some candles and just relax” line… if I had a pound for every time…) I really do hope you have some success with the steroid injections.
This post really came at the right time for me. You might remember my comment on your last post but I have vulvodynia & vaginismus related to that, and earlier this year I also had a marsupialisation for a bartholin cyst. That op was really the icing on the cake. While I’m thrilled to have rid of the cyst, the whole idea of the marsup process freaks me out and has left me almost scared to know my own anatomy any more. It feels totally alien to me and I felt like I went right back to square one.
I also heard some very ignorant and upsetting jokes about vaginismus on a work night out recently. My colleagues apologised and acknowledged their comments were insensitive, but their words still hurt, it was the worst I’ve felt since this all began five years ago. Reading your post today though has given me that push to keep persevering, trying to make progress of my own and get back to a good place.
While our journeys and diagnoses are different, you have perfectly voiced every thought and feeling I’ve had over the past five years. Thank you for using your platform to talk about this. Thank you thank you thank you and best of luck with your treatment. Xxxx
Thank you for reading! I think there’s just so much ignorance surrounding mental/female health still – most people haven’t even heard of Vaginismus, and I guess it’s hard to imagine what it’s like to live with unless you’ve actually experienced it. Sometimes I even convinced myself that it wasn’t real because it feels like such a bizarre reaction for your body to have. People just need to be willing to listen and to educate themselves because otherwise their comments can do serious damage – again, part of the reason I feel a bit of a duty to write about my experiences so openly. There’s really not enough candid information about female health on the internet, so I hope that will change as the years go by. Sending lots of love to you xxxx
Alice thank you so much for this tupe of writing. It’s such a possitive thing and corageous of you to share your experience just to try to help others. I’m proud of women like you who open themselves to do good, I’m proud to be your reader. Hope this new treatment works better for you Xx
This made me tear up a little! Thank you for being so supportive – I wouldn’t be able to write posts like this without such supportive readers xx
THANK YOU for this post. I am on year 8 of similar issues with no answers and this was so helpful to hear ❤️ Sending you love and positive energy. We are sexy and strong and worthy.
We definitely are! Sending all the love to you – keep pushing for answers xx
You are so brave to share this and in such an eloquent manner. We are all fighting are own battles but it takes a truly brave and selfless heart to share your story. Please never stop writing <3
Thank you – words like this are so encouraging and really keep me up at night – forever writing away 🙂 xx
Alice I adore you for writing this. It’s such a difficult topic to cover and you do it so well and effortlessly.
We all have our things going on – sex is such a difficult one to discuss sometimes! So thank you so much for putting this out there.
Holly xxx
Thanks beauty! Really means a lot xxx
Damn girl, I really hope everything is going to work out for you. I love reading your blog and you seem like such a nice person. I really hope you’ll feel and be better soon, don’t stop enjoying life in the mean time! <3
Thank you! And I definitely won’t – lots of exciting things alongside the not so good times. It’s all about balance 🙂 xx
Thank you so much for adressing this… And especially as a follow up. I am really sorry that you have to go through this and hope that this journey of yours will get better.
Your sharing is so important to me and probably other woman for whom sex as always meant pain even though having loving partner helps a bit.
But nonetheless knowing deep down that something is wrong with your body and not knowing exactly what is probably more common than we think. The « feeling less of a woman » is so true as well, and the guilt that we carry is so hard to address.
Once again thank you very much for adressing this !
Sending you lots of love ♥️
Thank you for reading! I think even without the illness, these are feelings that so many of us experience at some point. We all have times where we don’t feel good enough, and I just think being honest about that is the best way to feel less alone. Sending lots of love to you xx
Love the look! x
I feel like I always want to say “thank you for being so honest” after reading a post here. I can’t relate on this matter, but as a woman, I support you. As you say, it’s important to talk about our issues because it can resonate to others, it helps others but it also helps us to have a bit of support from someone who can understand what we experience. I hope everything is going to be fine for you and that you have the supports that you need.
xx
Thank you – that’s my main aim when I write anything health related. I never want people to think that there isn’t hard stuff going on behind the scenes of Instagram etc. Life can be tough but sharing our experiences is half the battle xx
Very sweety this look, this skirt is very cool!
XX
Justine
http://lemagdejustine.com
Alice you always write so beautifully and I am sorry you’ve had to battle so long to get listened to. A woman’s sexuality is so often ignored and belittled, tied up with sex itself. But it’s so much more than that. It’s really hard to unlearn ‘sexiness’ as it is presented to us.. it’s about owning our bodies and not being ashamed. You’re helping so many by talking about this x
Thank you for reading! Totally agree with a woman’s sexuality being tied up in sex itself – such an interesting topic! It definitely feels like we have to reclaim our bodies and teach ourselves how to be kind when they let us down xx
Thank you for writing this Alice. It’s so shit what you’re going through, I have a similar experience of battling with the NHS to get my symptoms taken seriously, and it really takes it out of you. You’ve done so well to get this far, you should be really proud of yourself for trusting your instincts and pushing on. I really hope the steroid injections help you x
Thank you so much for this – really means a lot. It’s been a pretty shitty time but I’m just always so thankful for the amazing stuff I get to do because of this little blog. Swings and roundabouts I guess! I hope you’re okay and looking after yourself, best wishes xx
Alice, I finally managed to catch up on your blogposts and I had to comment on this one. I might not have experienced your pain, but I think you are so brave for opening up the conversation, for not making it a taboo to speak about our bodies as freely as possible, without judging, with that tender love that we show for the ones we care about. You keep on being an inspiration, in all senses, and for that I cannot be more grateful! Truly hope your health journey ends up with a happy ending Xx
Saida
I knew absolutely nothing about LS until I read this post – thank-you for talking about it so openly, you’re educating alot of people and teaching us that we shouldn’t be afraid to speak up or look for second opinions!
I really hope this new treatment works for you x
Holly
http://www.thetwinswardrobe.com
This spoke to me so deeply and I’m sorry to hear about what you are going through. A few years ago I also had an ongoing issue “down there” that I was sure would never end. Countless doctors appointments, swabs, medications, steroid creams, lubes–nothing would work. All I can say to hopefully make you feel a little bit better is to just move forward with the thought that you are just as normal as any other woman out there. We all have our own struggles and yet we all still manage to hold it together, with or without support from others. I hope you find a light at the end of your tunnel soon!
Thank you so much! This was such a lovely comment to read and I definitely needed it. And you’re so right, we all have our internal battles going on. Forever thankful for those that share their stories with me like you have. Sending lots of love xxx