Alice Catherine Alice Catherine

Two operations later, countless tearful examinations, and many late nights spent exhausting the Google search engine in the hope of answers – I wonder why it is that it took a decade for my pain to be believed. A whole decade for my lived trauma to be taken seriously by health professionals…

Living with Vaginismus as a secondary result of Lichen Sclerosis is something I’ve talked about before on this blog. You can find my previous posts in the female health category for more context, but today I wanted to try and discuss how it feels to deal with female health issues that aren’t visible. It’s been a while since I’ve felt in the right head space to type up my thoughts and feelings on this, but if having these issues has taught me anything, it’s to shout loudly and unashamedly about them for those that are still undiagnosed and suffering countless setbacks.

For a bit of history, I suffered with Lichen Sclerosis as a child and it left me with scar tissue that basically just means that my vagina opening looks smaller than the average. Lichen Sclerosis is an incredibly painful skin condition that can cause the skin to break, bleed, and even fuse together when a flare up is particularly bad. It’s not something I have suffered with since I was child – I remember waking up in the night scratching myself, and having to run baths to wee because I was in so much pain. I think at the time, my mum assumed I had Cystitis or something similar, and I was always quite private when I had these flare ups – not wanting to make a fuss or be vocal that there was something wrong with me. I don’t really remember much of how I felt about it back then, but I think I remember feeling different.

I think from a very early age, I learnt how to internalise pain rather than share it with those around me. I remember my first day of school vividly – I wore a checked red and white gingham summer dress. I used to get random nose bleeds when I was younger (just to add to the list of cool things about me) and I remember walking around the playground at break time, wiping it on my red checked school dress and hoping it would blend in. The more I’d wipe, the faster my nose would bleed and then the more out of control and isolated I felt.

I guess this is how I’ve dealt with pain for the majority of my life. I tend to sweep things under the rug until they inevitably rear their ugly heads and become much bigger issues than they were to begin with. It’s a coping mechanism that many of us develop when we don’t know how to deal with something that feels bigger than we are. I think this is why I had such a long and complicated journey when it came to getting help, and it’s definitely the reason I have such a turbulent relationship with my body.

I think the main issue for me was that my vagina looked totally ‘normal’ – albeit the slightly smaller opening (which is common with or without Lichen Sclerosis/some women are born with hymens that are thick or inflexible for example). I say normal as if all vaginas aren’t normal, but what I mean is that there didn’t appear to be any psychical medical issues to the naked eye, and therefore I was always hurried out of medical rooms with this notion that it was all in my head.

The truth was, it was all in my vagina, and my gut kept telling me so. Spurring me on to get further checks – even though I’d come away in floods of tears each time, convinced I was losing my mind because my pain wasn’t being believed by medical professionals. Meanwhile, I felt as though I was missing out on experiences that all of my friends were having – that my youth was somehow passing me by and all I could do was sit and watch. Internally screaming but nobody was listening. I wasn’t until I went to university and sought help in a different city that I even heard the word Vaginismus.

Although I was convinced that Vaginismus was definitely a correct diagnosis, I didn’t feel as though it was the only thing stopping me from having a ‘normal sex life’. I had this gut feeling that my body was tensing up for a reason, and I knew it wasn’t just something that I created in my head. I saw a few psychosexual therapists who tried to get to the bottom of why I had vaginismus, but none of them seemed to help. None of them really listened to me when I said that I felt it was something physical as well as the mental aspect. On top of this, the university environment really wasn’t a place I was ever going to flourish – I spiralled out of control, abused my body, pushed people away, and eventually had my first bout of depression. My university experience was one of the best and worst times of my life. I met so many incredible people and learnt so much about myself, but it was also the start of my sexual and mental health avoidance. That old sweeping things under the rug thing.

A few years later, I moved to Manchester and ended up making an appointment with a private clinic. This would be the start of some real progress in terms of both my mental and psychical health. Finally I was being listened to – the only difference? I was paying this time. The money I was earning from blogging was going towards private sessions with an amazing female Gynae that I found via a quick Google search. I saw her just a short walk away from my flat, and it felt like the start of something completely new. The same Gynae went on to perform two different operations for me – one that I paid for privately, and one that I was able to get on the NHS without a long waiting time. After a biopsy, it was confirmed that I did have dormant Lichen Sclerosis and that there was some internal issues too that were easily fixed (I actually don’t remember too much about what they were as I was told when very high on anaesthetic and I’ve since lost my Gynae notes but I’ll dig them out for a future post). For my second operation, I had my scar tissue into, but it inevitably healed back because I’m young with lots of Collagen in my skin. This was a heartbreaking circle of defeat to deal with, but something I was prepared for.

I would never ever bad mouth the NHS, but the sad truth is that they aren’t well equipped when it comes to dealing with female health issues, and so many people slip through the cracks as a result. It took for me to have real conviction that there was something wrong with me for my pain to be taken seriously – it also took money for me to have more than fifteen minutes in a room with a Gynae so that I could explain my history and articulate what I thought might be wrong with me. When I first had psychosexual therapy sessions on the NHS, appointments would be anything from four to six weeks apart. It felt impossible to make any real progress and I always ended up giving up hope. I often wonder what would have happened if I hadn’t been in a position to pay for private help, and I worry for the people that are living that painful reality as I type this – a life that feels ruled by waiting lists.

It’s a kind of mental torture and loneliness that really doesn’t compare to anything else. Many times I’ve felt like I’m broken or damaged in a way that’s beyond repair – I’ve even convinced myself that I’m somehow less of a woman because my body seems to achieve less. I’ve sat and listened to exciting stories about my friends sex lives, nodding along, all whilst wondering if I’ll ever feel like part of the club I’ve always been turned away from. Dealing with a chronic illness when you look seemingly ‘normal’ on the outside feels like you’re playing a character version of yourself in some sort of bad play. It feels exhausting, tedious, and never ending. I’ve often found myself wondering: why can’t I have something that people generally understand more broadly? Or at least have a diagnosis that people have heard of or can pronounce after the third time I’ve repeated it to them. Why do I have to have the two things that sound like they have been plucked from outer space?… 

I never want my blog posts to be doom and gloom, and that’s the very reason I haven’t written candidly about my female health issues in a while. I always want to come here with something productive for whoever is taking the time to read this, because this blog has given me more than I could have ever hoped for. Chatting with you guys over the years about your own female health issues has given me a sense of community that I spent years and years searching for. Sharing my issues has made me feel much more confident in who I am as a person, and less wrapped up in my body and how it’s prevented me from (what I thought for a long time) was being my ‘best self’.

I want you to know that if you are currently feeling let down by your body or as though you are broken in some way – you are not, and there is help to be found. You just have to have the strength in yourself to keep pushing for answers. There will be times when you aren’t listened to properly, but they will all seem insignificant when you find someone who does. I think it’s also vital that as a society, we redefine what it means to have a ‘healthy sex life’. If the ultimate goal is always penetrative intercourse, then we are denying a huge proportion of people pleasure and happiness because of what they are unable to do with their bodies. All bodies deserve love and pleasure. Whether its a physical or mental disability – there needs to be less stigma attached to what counts as a real sexual experience.

If someone approached me in a bar or if I got chatting to someone on a night out when I was younger – I’d walk away or laugh it off and pretend I wasn’t interested. The truth was I couldn’t be bothered to explain why I wasn’t capable of a one night stand or a sexual encounter that didn’t feel painful and awkward. How could I possibly have explained to someone else what I didn’t understand myself about my own body? Way to kill the mood.

At age twenty eight, I’m still struggling with my treatment and hoping for progress, but I’m also working on redefining what progress means to me. I think when we feel stunted, we forget to look back at how far we have come and all of the hurdles we have faced up until this point. There is no shame in staying in the same place for a while – try to make it feel like home. 

I use steroid cream daily to thin the scar tissue that has now healed back, and I was also prescribed vaginal trainers again (which are about as fun as they sound) just before lockdown. My last appointment was actually a couple of days before we went into lockdown and perhaps my most emotionally intense appointment yet. We talked through my options going forward and discussed the possibility of another operation but there’s really no quick fix when it comes to Vaginismus and Lichen Sclerosis (especially when you throw in a global health pandemic on top of everything else). The hardest part of all is the mental battle – the idea that my brain is putting up physical barriers. Whether it’s counselling, psychosexual therapy, CBT, or regular meditation – there are a whole host of avenues to explore when it comes to reconnecting with your body and sexuality.

It’s been exhausting carrying around a body that nobody seems to understand. It’s been exhausting to try and love a body that feels so far away. I dress my body in nice clothes, I moisturise it, I take it for walks with friends sometimes. And yet, the language I often use towards my body is  hateful, hurtful – I glance at it in the mirror, never quite understanding what I see, the image changes every single day. Sometimes multiple times a day. Body Dysmorphia as a result of years of not understanding or being believed about my own body.

And yet, when I think of the strangers, and the Doctors, and the family members, and the school friends that failed me in one way or another, I feel grateful for the strength I have today. Living with a debilitating female health condition that there’s barely any compassion or understanding for is hard. It’s even harder when those closest to you don’t know how to spot the warning signs or point you in the right direction. You end up walking around in this invisible cloak that you create for yourself – a comfort blanket that only seems to cause further discomfort. It becomes so tight that your chest hurts somedays – a body crying out for attention and healing. Notice me it seems to say, I’ll be yours if you just let me.  

It’s important for me to write these posts because I would never want anyone to glance at my Instagram account or the curated images on here and feel the way I did as a young girl. If I could scoop her up out of the bath tub and tell her that I will create an environment that we will flourish in one day – I would. I wouldn’t want anyone to assume I have this picture ‘perfect life’ or that I have things all figured out because I don’t. Whilst I don’t believe I have anything to prove, I also want to add to this blog space in a meaningful way as I often as I can. If my experiences can help someone book that appointment or push for further treatment – that means everything.

I’m grateful that if I ever lucky enough to have a daughter, I’ll be equipped with an impressive tool kit when it comes to a plethora of female health issues. I’m also grateful that I didn’t give up on myself and that despite the all the set backs of 2020, I’ll continue to try and heal myself and work on my relationship with my body. I really hope that if you made it this far – you will too. The world needs healing more than ever, but so do we. 


Photographs taken on film (Portra 400) 

You can find the Private Manchester based Gynae clinic I discuss here (they also offer video consultations)

Vaginal dilators for those suffering with Vaginismus can be found here (Amielle are the brand most recommended)

Read more about CBT here (Cognitive Behavioural Therapy)

 

 

 

 

 

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21 Comments

  1. Neyla says:

    I have no body issues I could think would be as remarkable as yours, so far at least. Nonetheless, I can’t help but being inspired by your words because there’s a lot of courage and a firm will to make a change for others. That’s just admirable. Thanks for opening up once again, Alice. I do believe you are already making a meaningful space for all of us.

    1. alicecatherine says:

      Thank you! So grateful for the kindness and support I receive on here – such a lovely community and one that I cherish always xx

  2. Eva says:

    Thanks you so much for sharing your journey with us. Even if I can possibly understand everything you’ve been feeling regard this body issue, I still think you are brave to share this online and open up discussion. I love coming to your blog and feel like having a meaningful conversation with a friend. With this blog, you probably help yourself a lot, but you help your readers as well. And that’s bloody amazing.

    1. alicecatherine says:

      Thank you so much! That really means a lot as it’s exactly what I want this space to feel like, and I never want to lose sight of that. Messages like this really mean the world and are so encouraging as someone who works alone – thanks again for being so kind and supportive xx

  3. Rose says:

    Thank you for being so open. I connected with so much of what you said, and then when you spoke of lifting your younger self out of the bathtub I started crying, it gave me so much hope. Thank you

    1. alicecatherine says:

      Awhhh I’m sorry I made you cry! But really glad it resonated in some way – feeling less alone is really half the battle with when it comes to such raw and sensitive issues xx

  4. Sydney Russo says:

    Alice,

    I can not tell you how much I admire your bravery and vulnerability. As someone who has dealt with health issues over the past few years (some more significant than others) and has had to go from appointment to appointment without getting concrete answers, this post really spoke to me. That internal knowledge that something just isn’t right is one of the most isolating feelings, and I feel blessed to have had many of my past issues recently resolved, but there is so much work to be done to encourage dialogue between doctors and patients. There have been so many times when I haven’t felt listened to, or doctors have been condescending and made me feel uncomfortable or embarrassed, and this is just not okay. We know our bodies better than anyone else, and we need to trust that intuition and keep pushing for answers. I think one of the biggest steps is removing the stigma surrounding personal health issues (and especially female health issues), and you have done so beautifully in this post. Thank you for sharing your journey, and I pray that you’ll soon have answers. Sending love.

    Sydney

  5. Sarah says:

    Thank you for sharing your story. I have Vaginismus, it took me 3 years to seek help, and now 3 years later I’ve learnt to manage it and have a happy sex life. I feel hopeful that you will too. I found having counciling sessions with my partner really helped. If you want to chat about this, please do email me 🙂 lots of love x

    1. alicecatherine says:

      Thank you for reading! My issues are a bit more complex than just the Vaginismus alone but I’m currently working through them and seeking the next best treatment – thank you for the kind offer though, means a lot xx

  6. Holly Rebecca White says:

    Thank you so so much for sharing this Alice. Although I’ve not been through the same experiences, I can relate to a lot of those thoughts and feelings that you mentioned, so it’s comforting to know I’m not alone in those emotions. You write so beautifully, and I know that this post will be such a safe place for people who are searching for answers or looking for a place to feel understood. Sending all my love xx

    1. alicecatherine says:

      Thank you Holly! You’re always so kind and supportive – really means a lot xxx

  7. Jo says:

    I have primary vaginismus, and this was the most perfect account of its impact I’ve ever read. Solidarity and love to you xxx

    1. alicecatherine says:

      Thank you! And solidarity back to you sweet angel – sending so much love and strength xxx

  8. Katie says:

    This is beautifully written and so generous of you to share. Cannot remember the last time I read something this honest and affecting. Thank you xxx

    1. alicecatherine says:

      Thank you so much! Such a lovely thing to read this morning xxx

  9. Summer R says:

    Thank you so much for sharing this, although I personally haven’t been through this experience I really admire how open you are about it and how much it is helping others who may be seeking answers. Wishing you all the best x

  10. Laura says:

    I am not usually one to comment on things online, but I just wanted to say thank you for having the confidence to put this out there, and share your feelings in such a relatable way. I’ve followed you on Instagram for awhile and it just goes to show that you never know what people are going through. I have been going through something similar for the past 5 years, still with no real answers and having been past back and forth between different NHS consultants. I am finally on the waiting list for a Gynae surgery consultation, but that seems to bring with it a whole load of anxieties in itself. I just want that ‘normal’ again and to feel comfortable and confident with my own body x

  11. Emily Parsler says:

    Thank you so much!!! Reading this is like finally feeling that someone ”gets” me! And the complexity and emotional impacts of vaginismus. I’m only 18 and have only just started to figure out that things aren’t right with my body’s ability to enjoy sex, I can see it will be a long road – but it’s nice to know that someone understands and has been through it all before me. I’ll try to follow in your path, and learn from this amazing post!

  12. Thank you for telling your story and raising awareness for Lichen sclerosus.
    It will help so many x

  13. Roisin says:

    Although I’ve not had the same exact health issues as you, I can definitely relate!

    After a really bad virus 2 years ago I never fully recovered, in fact a month after it, I felt so awful that I went to the Dr only to be told it’s simply because I wasn’t getting enough exercise (despite having lost 2 stone due to aging to the gym regularly). She ‘prescribed’ a daily walk for 2 weeks, I could barely get out of bed some days but forced myself to do them. After returning with even worse symptoms, the list getting longer each week, she said very reluctantly she could refer me to the Chronic Fatigue Clininc if I really wanted to, like she disagreed with it. I went ahead and after months of being on the waiting list and eventually saw a specialist that diagnosed me with Post Viral Fatigue Syndrome. I cried walking down the corridor after my diagnosis as it felt like someone had actually listened to me for the first time. They believed me.

    It’s changed my whole life, I was off work for 5 months in total and I’ve had to reduce my hours dramatically. 2 years on and I now have Chronic Fatigue Syndrome, a lifelong battle, along with newer diagnosis’ of IBS & Hypermobilty Joint Syndrome.

    I completely understand the walking away or laughing off of social and possible romantic relationships and situations as it’s so hard to explain the effect of these hidden or invisible health issues. Especially when people tell you ‘but you look fine’.

    I have a love/hate relationship with my body too due to feeling very limited in so many different ways. But then I just try and remember (although it’s not always easy) that people are worse off than me, and that I can now read and listen to my body, and to rest on a bad day and enjoy the good.

    I’m so happy you’ve finally found someone that can help you & that your road to self love will hopefully only increase from here!

    Lots of love,

    Roisin xx

  14. Heather says:

    Thank you for writing this post and sharing your story. I have followed you on Instagram for a couple of years and it is really inspiring to see you being open about it. As a 23 year old woman with vaginismus, this is exactly what I needed to read. It makes me feel less alone. Thank you! Xxx

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