hyperawarness of vulva- burning, could it be some sort of vulvodynia?

Posted , 16 users are following.

Hello everyone,

I was wondering if anyone has a similar issue- my vulva seems to be overly sensitive. I have this burning sensation that intensifies as the day progresses, usually when i wake up i'm ok but then after walking/being active it starts to be uncomfortable, it feels like a sunburn. I have seen two gyneacologists who said my skin looks completely normal. Had an ultrasound too. It started as a misdiagnosed UTI, then had a BV which was treated with antibiotic. It all started in November. Currently on amitryptoline to see if it's a nerve pain and using some steroid cream as well + lots of hydramol for moisturising. I hand wash my cotton knickers, don't bathe, was my hair over the bath not in the shower- you name it I tried it. I can even feel my pubic hair prickling my skin, i never used to feel it. It's like the whole area became super sensitive. My vulva doesn't look particularly inflamed. Maybe I should find a vulva specialist? i'm in the midlands, hope someone can suggest something., I'd love to get diagnosed! (been checked for STD's)

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  • Edited

    HAPPY UPDATE! I feel much better. I have carried on exercising every day (there is so much resource on youtube- please don't be put off by the pandemic ladies, yes being assesed by a specialist physio is a great route to healing and I will still go and see one after co-vid lockdown myself but you can help yourselves now). I started with pelvic floor release stretches and build up my routine from there- you will soon learn what feels good. I also listened to Samantha and stretch my hip flexors, I do spend a lot of time sitting and sleep with my legs bent so it's important.

    I've been taking 30mg of Amitryptyline for around 6 weeks now. My GP said I could build up upto 40mg but I seriously don't need to. I can now walk for an hour non-stop and can't feel any one sided burning at all, I can' believe it. I believe it's thanks to changing my mindset of feeling so resigned and disappointment in lack of diagnosis, doing more research what the pain isn't (I read The Vagina Bible by Dr Jen Gunter which reassured me further- she does mention that amitryptyline and similar drugs sometimes don't work as women don't tolerate the side effects of them but if you don't like one try another- similar as with contraceptives, don't give up so easily, the side effects are temporary most of the time). I'm glad I upped my dose after loads of hesitation and advice against the drug from my well-wishing family members as they are also anti-depressants. The truth is doctors studied medicine and if we are serious about getting better it's worth trusting doctors and well-researched drugs, the are safe. I think it really calmed my hyperactive nerves and I intend to carry on taking them for a bit longer, couple of months maybe, before trying to come off them as I'd like to try for a baby in the near future.

    I also found journaling very beneficial- I felt so upset all the time I forgot to enjoy mornings when I had no symptoms, I just knew the pain would appear later in the day so I was sad 'in advance'. Then I started rating the pain levels- and noticed that some days were better than others so I had a word with myself and said- be grateful for when the sensation isn't there! This tactic is so satisfying as now my discomfort is ranging between 0.25 and 2 out of 10 so I feel happy most of the time! I would really recommend rating pain each day (and which day of your menstrual cycle you're in).

    The progress made the lockdown a much positive experience- I saw an opportunity in it! I started taking medicine around 12 weeks ago and was on a very low dose for a while so it takes time to build up the dose and takes even more time for the optimal dose to kick in. Exercise + DEEP BREATHING - probably around 6 weeks but obviously there's other wonderful side effects like a nicer bum and stronger abs as well as endorphins which give you energy and improve your mood. So yes, if you're suffering from vulvodynia armour yourself with patience, patience and more patience as well as pen and paper and really track what works what doesn't (i have a table detailing each day what pants I wear, whether I used shampoo in the shower, how much exercise I did, pain level etc etc- it makes me feel a bit crazy but with trying so many things it's worth it as you may notice a pattern).

    I also switched to cheeky panda toilet paper and organic, unscented sanitary towels. No idea whether that contributed to the success but I'm sure your lady bits will appreciate less chemicals.

    One last resource- an american podcast which will can really empower you and propel you in finding answers. It's called The V Hive.

    THANK YOU SAMANTHA FOR THE SUGGESTION OF PELVIC FLOOR EXERCISE!

    P.S. I welcome any questions/direct messages, I promise to answer them and keeping my fingers crossed for you and myself. It's so complex but please, please research, try and EXERCISE if you can. I found a specialist physio that knows all about pelvic floor dysfunction and can't wait to meet and work with her in person when the lock down is over.

    • Posted

      me again! after 9 days of being happy I decided to drop the amitryptoline to 20mg (planning to get pregnant this year and my GP said I'll have to come off it). Unfortunately the pain returned. Decided to contact the pelvic floor physio and after spending 35 minutes with her on the phone she said she's never came across a case like mine and I'm a bit of a mystery as usual when women suffer the burning pain at the enterance to the vagina the skin and tissue is sensitive to touch and sex is an issue to, I'm not like that and walking is the only thing that brings the pain on. She is going to speak to her colleagues to discuss my case. Went back on 30mg of the drug and feeling better again. I'd just love to find a solution which will let me to get pregnant and be pain free.

    • Posted

      hi Marta

      how are you doing now? i have exactly the same thing!! i am in the midlands too, has anything worked for you? x

    • Posted

      Hi Deer246, Yes I've managed to 'cure' myself. I'll private message you 😃

    • Posted

      Hi Marta

      please can you PM me to let me know how you cured yourself too?

      Ive just been reading your posts and it sounds so similar to my symptoms.

      thank you xx

    • Posted

      Hi Marta!,

      Can you please pm me , it seems that my story is similar to yours. Thank you.

    • Posted

      Marta, would you mind letting me know too how you 'cured' yourself? your story sounds so similar to mine, it's 3 years now and I've run out of specialists to fob me off and tell me it's all in my head. I see a lot of time has passed since your post, I hope you are still doing well

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