My story is actually really positive, and I keep reminding myself of that, but it feels like one thing after another …
Always attended my smears, never ever had hpv or any CIN returned
Smear in April; returned hpv positive and CIN3
Loop procedure in June to remove CIN3. Significant bleeding afterward; ended up in A&E which honestly was quite traumatic
Loop biopsy confirmed 1a1
Second loop in August to confirm full removal. Procedure went poorly - machine cut out, anaesthetic didn’t work… Again significant bleed, for different reasons.
But otherwise good news and no evidence of disease! Waiting for official test of cure appointment in February.
With some continued pain I’ve been back to GP and gynae. Now diagnosed with lichen sclerosis. With that, existing endometriosis, and obviously the cancer I am in what I can only describe as a massive huff with my repro system. I’m feeling quite disconnected from my body, as weird as that sounds!!
Think I just needed a vent but honestly I feel like my body’s trying to kill me / ruin my life
Lichen sclerosis runs in my family. My mum is currently going through treatment for vulval cancer and she has lichen sclerosis, the drs have told her there is a small but proven link between the two. Think part of me is worried that next on the list for me is vulval cancer too. I feel like I’m just ticking all the gynae issues off a list
So sorry, Jessica - for you and your mum! You are indeed having a really hard time with your reproductive system. We will be keeping everything crossed that things start to improve for you now. At least you are getting clear diagnoses and this can help treatment. x
Thanks for replying jacks. It’s really not that bad, I just think the cumulative effect of everything is making me feel rubbish. Pretty down today tbh. I feel like my body’s really faulty?! That must be quite a common feeling for us CC ladies
Could I ask what your symptoms are with this please? I have Vulvodynia and find a new symptom that my vulva can get mildly itchy now X
For me it first started as a change in skin appearance so quite ‘tight’ and smooth skin in affected patches, it was very red and smooth and a bit shiny. It’s trademark symptom is a whitening or lightening of the affected skin which I have now.
I got the diagnosis after asking for a residual ache to be investigated. It’s really hard to explain - it’s just a constant low level ache in labia. It can get particularly sore if sitting or driving for a long time. I’ve had a really basic steroid cream for a week, a bit like what you get for eczema to be honest, and i do actually feel like it’s made a difference already!
I can relate to shiny tighter skin on perineum area. Never had an itch before. I will see how it goes. They have a one stop vulva clinic now, that may be my way forward. Glad the steroid cream helps X