Vulva Diva - Endometriosis, Vulvodynia and me

Lydia Louise is the founder of Vulva Diva.

Lydia's Story

I'm Lydia Louise, 24 years old and Living in Norwich. 

I am a young woman living with Vulvodynia, Vulval Dermatitis and Endometriosis. I love sharing my story, experiences, challenges, achievements and obsession of anything pink. 

MY PASSION is supporting others and bringing more awareness of vulval pain conditions. 

MY HOPE is to provide an honest, encouraging and educational platform. 

MY LOVE is connecting with others, sharing experiences and learning from each other. 

If you are suffering with chronic pain or simply want to learn more and support people like me give ‘vulvadiva’ a follow! Remember 1 in 7 women and people with a vulva suffer from vulval pain during their life. Approximately 1.5 million women in the UK alone are living with Endometriosis. Even though people are suffering all over the world the research being conducted and treatment offered is so limited. 

I want to connect with YOU! I’ve met so many amazing people through this platform and I can’t wait to meet even more.

Here's a bit more about me... 

Endometriosis

In 2015 I started to have periods of the most intense, deep, sometimes sharp, sometimes dull pain in my abdominal area and upper thighs. There was one day that I will never forget, I was crumpling up on the floor in so much pain my mum called an ambulance. As these periods of pain became more frequent I seeked medical advice. After undergoing a Laparoscopy I was diagnosed with Endometriosis. During surgery my consultant found that my left adnexa was completely covered in bowel adhesions as well as spots of endometriosis on my right ovarian fossa. Since recovering from my surgery in 2016 the painful periods have significantly decreased. In the recent year I have experienced more pain and that is something I will have to monitor. Anxiety about the potential regrowth of endo is definitely something I think about from time to time, however for now I hope and pray that it is a fight I've won. #

Vulvodynia

I've suffered from vulvodynia since 2015, my pain can be provoked and unprovoked. I won't lie, it's felt like a lifetime and it is by no means easy. My journey has and at times still does feet like an uphill battle. I've gone from having a pain level of 1/10 carrying on with daily life pretty easily, to my current pain score of 10/10, being unable to be intimate with my partner, missing time off work due to flare ups and even the pain controlling my fashion choices. I have tried multiple medications both tablet form, injections and ointments, with everything failing. BUT.... even with the uphill battle I am determined to succeed not only for myself but for all the women I have met along this journey and every woman I am yet to meet. My 'everyday' helpers as I call them are: hydromel ointment, white cotton underwear, cold packs and music. I am currently having long term psychosexual therapy and physio therapy in an attempt to reduce my pain level. Therapy is hard work, it's no walk in the park but it's an option that could help me and seeing as there is currently no cure, they are the next options I will try. With a positive mindset and so much support I go on. 

Vulval dermatitis

This is my most recent diagnosis. As my skin looked completely normal to the naked eye, this wasn't detected until 2020 when I had a skin biopsy. 
The dermatitis can make my skin very sensitive, red, sore and inflamed. I often have long periods of feeling uncomfortable, itchy and am unable to have anything close to my skin (that even means not wearing underwear). I am currently working with my dermatologist and gynaecologist to manage this and slowly I am beginning to wear underwear again. My 'everyday helps' are antihistamines, hydromel ointment and dead sea salt baths. 

Why Vulva Diva?

1 in 7 women experience vulval pain in their lifetime.

Let me repeat 1 in 7 women! 

Approximately 1.5 million women in the UK alone are living with Endometriosis!

I haven't even got started on other conditions like vulval dermatitis, vaginismus or PCOS. I know these statistics not because I was taught them at school but because I did the research upon developing chronic pain illnesses. I had never heard of any of my conditions before developing them! Womens health is not talked about enough. Prioritised enough. Researched enough. Women are not supported enough. Young Women are not educated enough! Big statements yes... in my opinion they are true! So, along came vulvadiva. An account for me to share my journey, support others, learn from others, connect with others, break the stigma around vaginas and do my bit to make a change.  I want vulvadiva to be a space for women who are struggling, women who want to learn more and women who want to support others. 

4 comments

  • I can see your passion from reading this article and sharing your journey takes courage. In my opinion, you are so right with everything you have said! You are doing so well in bringing awareness and crushing this taboo topic into a subject we can all speak about freely with no judgement 🌸💗

    Emily McDowall
  • What an inspiration you are Lydia. Sharing your current journey as well as past experiences I’m sure at times can’t be easy, but myself and all the women you help support are so thankful to have you and Vulvadiva in their lives today.
    Thank you for creating such a safe, honest and welcoming platform and for being the absolute Sassy Diva that you are. ❤️

    QueenKate
  • So proud of you Lydia! You have reached out and supported so many women by sharing your journey and offering a safe space for women to do the same. You’re just so inspiring.. keep on raising that awareness and smashing that stigma! Xx

    Natalie Windley
  • That’s my girl xxx

    Mumma Wilson

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