Think I may have vulvodynia but not sure. I can't take this anymore and don't know what to do.

Hi Emily,

I just want to start off with, I know EXACTLY what you are feeling! I hope my story can help you, not just in relieving your symptoms but to know you're not alone , because I felt completely alone whilst this was happening to me. For context, I am 22 and my vulvar problems started when I was 20. I was put on the hormonal birth control, Yaz and pretty quickly developed this weird urinary pain that mainly happened after sex. I thought it was a UTI, but whenever it was tested it never came back as one. I called them fake UTI's, they only lasted about 3hrs but burnt like hell! Because I was a young, sexually active woman the doctors never batted an eye and immediately prescribed me antibiotics, I took 6 full courses of antibiotics within 9 months. You're not meant to have more than 3 in a year!!!! So the fact that you have been on 7 in 3 months?!?!? You poor thing. (I'll come back to why this is horrible later). So, for 9 months I would constantly have something that felt like a UTI, which was then followed up by thrush and then rinse and repeat. It was horrible and I truly hated my life. On a whim, a gyno suggested femfresh wipes, which I would use one after intercourse - somehow this worked in stopping the UTI feeling after sex. Eventually, I got off Yaz, my intuition was telling me that it was the cause of my problems (spoiler: it kind of was). About a month after putting a stop to the fake UTI's, I started to notice this general burning around my vulvar - similar to what you described. At first I would use heat packs to alleviate the pain, but then that stopped working. I switched to ice which seemed to help. I couldn't wear tight pants, denim, or underwear. It always burned. I was put on everything, corteosteriod creams, lidocaine gel, amitryptaline, ketamine cream (you read that right), high-dose flucanazole and not a thing worked. This went on for 2 years - I was miserable and considerately poorer from seeing all the specialists in Melbourne.

If I have learnt anything from my journey, is that when it comes to women's health problems, doctors know nothing. I was diagnosed with PCOS (which I don't have), Vulvodynia, un-diagnosed with vulvodynia, re-diagnosed with vulvodynia, diagnosed with dermatitis, vestibuldynia, etc etc.

Going back to the antibiotics, you obviously do not have a UTI, and because the medical field know so little on this subject it is hard to say what has caused this burning, a doctor once told me it was just friction from sex and clothes(?) However, what would not have helped is all those antibiotics. For me, the constant use of antibiotics and recurrent thrush sensitized my vulva skin to the point where it was constantly burning. Despite it looking completely normal from the outside, the vulva skin had been damaged. We might have slightly different circumstances but I believe we are feeling the same pain.

On a side note, are you on birth control or did you start a new one around the same time and did you also get thrush from all those antibiotics?

Now, for the hopeful part.

I was seeing a vulva physio therapist because I wasn't fully emptying my bladder due to there being so much trauma to that area and my muscles were never fully relaxed. But she off-handedly mentioned to me something one of her other patients uses who has a similar story to me (and you) and it is called Emu Oil. I was 2 years in at that point and I was willing to put anything on there to stop the pain and Oh. My. God. This stuff has single-handedly changed my life. I don't know where you are from but if you can get your hands on this stuff please try it! It is a natural medicine and what it basically does is mimic the top layer of your skin, which in our case, allows for the skin underneath to repair itself. Also!! I swell up after intercourse and after I put this stuff on the swelling goes away within minutes because it is also an anti-inflammatory. I know it might sound whacky but if nothing else is working for you please give it a go. I have been using emu oil for 9 months now, and I started applying it maybe 3-4 times a day but now I can go a week without using it and then maybe once a day if I am feeling a smidge irritated.

I was never a natural medicine person, but after going through what I did, it has completely changed my mind. I see a naturopath now and she has helped re-balance my hormones, clear acne, basically get my body back to normal because who would've thought all that would have caused other problems - shocker!

This was the very very very short version of my story and if you have any questions feel free to ask them. I am sorry you have to go through this and I am sorry no one can give you answers, but it can get better - it does get better. I can wear jeans now and I haven't had to put an ice pack on my vagina for over 8 months!

Grace

Hello emily I am having these exact symptoms, did you get better? Please I need help

Hello

I hope you're feeling better.

There is a super helpful thread on here called 'How I cured my Vulvodynia' by a user called Suki_girl. I have tried pretty much everthing that she has suggested and after nearly a year am doing so much better.

I use a similar product externally recommended by the Vulva Clinic @ my local Hospital called Hydrmol Ointment and I use Coconut oil internally.