Newly diagnosed with vestibular vulvadynia- advice plz x

Hello all,

I'm new here so I thought I would like to start with my story and seeing what advice you can all give me or words of wisdom. I'm 29 btw and have had this for around a year or so.

So I think mine started with a bad case of thrush or at least that was what I was treated for! It was about a year or so ago now and I kept getting thrush and also had BV twice. Me and my BF kept treating ourselfs for thrush cos we was sexually active it's was quite new so I assumed maybe that was the reason for it.
Then sex with my bf started to hurt I was experiencing burning pain at the entrance every time we had sex and I assumed thrush was back and would need to treat it so I kept using canesten creme even putting it up my vagina and went to the doctor on and off over the next 8 months.
Every time was same response she couldn't see anything wrong. I cried so many times in the doctors office. I just wanted my sex life back and I hated it was so painful. I would get sore for days after and it would itch aswell afterwards. I didn't know why it was burning so much but appeared to look normal. Would only swell or look saw after sex an even bleed sometimes. My GP seemed tired and disinterested.
In the end I went to see a gynacologist and she did a number of tests everything came back negative. She advised me to use steriod creme for 2 weeks and go back which I did and it made a slight improvement if I'm honest but only slightly. We had me booked in for a biopsy so we went ahead with that and again negative for anything. I tried to have sex with my BF 4 weeks later and I swear to god I never felt anythink so painful in my life. It was a new pain and it was at the vestibules area. I couldn't let him anywhere near my bits! it felt like shooting pains and before biopsy I only experienced burning through sex. I went back an she told me to resume steriod creme and go back in 3 weeks. Steriod creme worked a bit. Me and my BF managed to have sex the other night but I still felt pain in vestibules an same old burning pain is There I also bled after but was nice to be able to even if it was painful!
I went back to gyno yest to report back she then gave me the Q TIP test (which was agony)and she diagnosed me with provoked vestibular vulvadynia. I was in bits couldn't stop crying yesterday. I don't know what to do from here on. I feel better today and I'm lucky I have a very supportive bf but I feel so sad about it and hope that I will find somthinf that works for me.

Doctor has told me to use 5% lidocaine and 2% amitriptylibe creme, take some citrate calcium and go back in a month to see my progress. I have to actually gt this creme specially made and it's going to be expensive.

Does anyone have any advice on what I have told you about me with what I can do?
I feel so alone with this I don't know anyone that has it. It's nice to know there's women out there who can offer support and advice from Ther own experiences of this horrible condition.

Look forward to hearing from you
X

Oh you poor poor thing. I so feel for you. I experience itching as well as burning too but I am lucky that I can still have sex without pain at this point (not that I want to...this condition isn't exactly sexy...).

The stuff they have given you are generally the first options for vulvodynia. Try it for a month if you can handle the side effects of the drug, I've never used it so I can't say how long it takes to kick in.

Are you generally in good health otherwise? Regular periods, no fatigue or any other issues?

Have you had your hormones tested?

Thanks for replying:-) Its so nice to actual make contact with somone who is in a similar boat!
I only get pain with intercourse or pressure on vestibules and afterwards, it's provoked pain. And this itching happens after sex for a few days and I take a few days to heal or feel "normal" down Ther. Last time I bled which wasn't nice! But I was just happy that I could after so long no being able to. There was a point it got so bad when I couldn't have sex at all...so how long have you had vulvadynia? What one do you have? No it's not sexy at all! it hasn't affected my labido tho.
This condition is just making me worry if I'll ever be able to have pain free sex with my BF. It's so fustrating and I keep wondering why me... What have i done for this to happen...But we all have those thoughts in sure.

The only stuff im using at the minute is lidocaine. The other creme I'm waiting to get specially made. I didn't wanna go down the pill route so soon as I have been on anti depressants last year and they didn't sit well with me. I felt tired and not myself. Some knocked me out so bad and made me extremely paranoid. I'm waiting for calcium citrate to come in post as my local Holland and Barrets don't stock it.

I guess I'm fairly healthy. I have a Slim figure but I dont excersise at all. I eat fairly well but not as good as i should! I am always tired though but I think it may just be my age, stressful job and too many early mornings. Periods are a bit weird. I've been on pill since I was 16 and I rarely take my 7 day break so I only have a break every 3 months and they are very light
Didn't get hormones tested I mentioned this to my gynacologist and she said im young and she doesn't think that I have lack of estrogeon but as I said I'm new to all this I don't know what i should and shouldn't push for.

Sorry for my essays. I tend to babble a bit ;-)

Essay away! Lol this is what this site is all about.

I am 27 and have had this shit for a year and a half. I came off the pill and a month after I came off it I got extreme itching and a cyst on my ovary. I got treated for bacterial vaginosis and the itching went away and the cyst came out when I finally got my period.

A month later, the intense itching, inflammation and burning came back. Along with irregular periods, morning sickness every single day despite not being pregnant - vomting every day and extreme nausea and fatigue. Hair falling out, extreme bloating. I am lucky to get my period every 2-3 months, and when I do, I literally can't cough or sneeze without having to change my pad. Tampons are out of the question as I bleed too heavy.

I have been hospitalised at least 10 times for being so ill, so dehydrated from being unable to stop vomiting.


I got given steriod cream which made me worse, made me so sore, and got put back on the pill which didn't help.

I had 2 biopsies which show only chronic non specific inflammation.

The stupid doctors told me it was all in my head and I needed antidepressants, which made me so much sicker. The doctors then told me I had an eating disorder.

I changed GPs who sent me to a fantastic new Gynae who has practiced all over the world. He thinks I have a major hormone issue. He has been sending me for all these different tests, including a hormone test every single week to see what my levels are doing week to week and why Im not ovulating.

I went to my GP last week by chance who got a copy of one of the results back by chance. I got a special test done which doctors normally don't do. AMH hormone levels. Normal levels are 30...mine are 129!!! AMH this high can mean so many different hormone issues, as it is your other hormones that control AMH levels. So I see my specialist on the 13th to get my full set of results.

lol see, I can write essays too

Oh and another thing, if it is a hormonal issue, come off the pill because hormone tests while on the pill don't mean shit.

OMG that sounds horrible! You poor thing! It's crazy what this thing can do to our body's. And some of the doctors you been to sound really un supportive. My GP was ssame but this private gynacologist I see now is much nicer.

So you have the burning pain all the time? That must be hard and really stressful to live with. Do you take anything to manage your pain?

It's good you managed to get a copy of some of your results so you have a little heads up what they will say but where do you go from here? Will he have treatment for to try if it's a hormone imbalance causing this?

I'm not sure of mine is hormone related but I have been on the pill for years might be an idea for me to come off it to see if it makes a difference but what other birth control could I use as at the minute (well last week was the first time in 2 months) I managed to have sex and I want to keep trying once a week to see my progress on the pain scale. It's hard to tell if your healing when it's provoked as the pain in mainly on touch.

I still can't get my head round this thing... I feel for every single women going through this in some form right now.
It makes me sad so little is known about how to treat this

Yeah this forum really is an eye-opener. Really proves we aren't alone in this. The ladies on here are wonderful

Your problem is different to mine. I don't have any provoked pain.

I get mainly itching, my symptoms vary day to day....and burning leading up to my period. If I don't get my period (which is often) my symptoms worsen until my period arrives. Some nights I have to use an ice pak on my crotch when its really bad. It sometimes feels like my crotch is on fire or getting stung by stinging nettles.

Most hormonal imbalances are treatable. I just have to wait and see what this doctor says.

Keep a diary and record your symptoms day to day, thats what I did, and I found a pattern.

Have you seen a proper vulva specialist?

What country are you from?

Yeah I been following this forum for a while before I got diagnosed and everyone is so lovely and helpful on here. I knew once I got diagnosed I would join and try and figure this out all together! I'm sure we can all help each other in some way.

Aw bless you...It sounds like a nightmare to be honest. I hope that you get some answers and pain management or relied on the 13th. You'll have to let me know how it goes.

I actually brought a notebook today :-) I've written down in it all the pills cremes oils ect I have seen people say helped them and little by little In sure I will get round to each one to see what works for me.
I'm writing in it aswell to see how the pain feels each day wen I apply the creme and write anything in I feel is related ect. I know it will help further down line in trying to treat this condition. I do feel like we all have to find out stuff ourselfs rather then the doctors! I wish they knew more...

Im from the UK and I'm seeing a gynaecologist. I'm going private though rather then through our health care system (NHS) the waiting list was 3 months!
Do you think I need to see a vulva specialist? Isn't that what a gynaecologist does? (I might be being dumb here lol)
Where are you from?

How did you find your pattern?

Also another question if you don't mind me asking and it's not too personal. If you don't experience pain during sex then does that mean your not "in pain" when you have sex or just that it doesn't increase or decrease the pain?

Lol It doesn't make any difference in increasing orcdecreasing the pain when I have sex. Still stays the same.

A vulva specialist is a Gyne who actually specialises in vulval disorders many women on here have gotten help through them, rather than a basic run-of-the-mill gyne.

I'm in Australia where most so-called specialists just go to Uni, party hard n come out thinking they know everything. Its ridiculous.

Wow Australia is ages away! Lol yeah that doesn't sound fun having somone look at your bits who isn't really qualified. My gyno seems nice and she is very sympathetic at the min... If she starts to brush me off tho I will go see a vulva specialist.

I really hope you get your answers on the 13th.

I had the surgery done for the same thing you had and it helped me, but you're going to have to exhaust a lot of things before you can get it as it's last case sceneario. I didn't see where you're from, but I'm from Florida, and my doc is awesome if you can swing it good luck!

Thanks for your reply I've seen a few of your posts in here and I was quite interested to hear from you as seems like you have been through a lot and know lots!

What worked for you before the surgery? Anything at all?
I'm so early on with this and I'm a bit scared tbh about the future but I having a down day today...so any advice would be appreciated.

Did you also have the provoked pain? I only get pain on touch. So it's mainly affecting my sex life but mentally too it's got hold of me I've been in tears this weekend thinking how this has happened so suddenly. I wonder how long this road will be...

I'm in UK so very far from your doctor unfortunately

Sparkle,
I am so sorry you have to deal with this pain. I have been seeing a vulvar specialist here in Arizona USA, here is what he recommends
1. Stop all scented soaps/body washes, lotions and use Grandma's Lye soap (hope you can get that where you are or something similar) or Vanicream body soap and creams and lotions. His theory is most women he has treated have a sensitivity to the chemicals in our body care products.
2. Wash your hair in the sink. I hang over the bathtub which is uncomfortable but hey I am willing to try anything at this point. If he told me to roll in the mud I think I would do it. He says to do this until you have been symptom free for 6 months then try washing your hair in the shower, if your symptoms return then then try another 6 months and if you get symptoms again, so sorry you are sensitive to your shampoo and/or conditioner.
3. To wash yourself off after every urination, I bought a bicycle water bottle to carry in my purse. Pain in the butt, whatever works though. There is an astringent wash called Domboro Packs or Gordon's Boro packs you mix with distilled water and you squirt that after every pee. I tell you this was the best thing he told me. When I got home after seeing him I immediately tried this, OMG, relief.
4. Homones. In my case he said my squamous cells were not maturing. In the vagina your cells go through a cycle and mine were not maturing, I know, WTH? This was due to not enough estrogen, my body didn't produce lactobacillis which happens naturally when your vagina has enough hormones. To be very honest here, along with severe pain I have horrible odor, too. So double whammy, Yay me!
5. After exercising (Yeah right), sweating, wash yourself off because that can cause pain,too. If you walk a lot like I do for work or you exercise he suggests using Astroglide lubricant because sometimes we (ladies) can be a little dry down there plus can help with friction. Also we can use Johnson and Johnson Baby powder with aloe, if we tend to sweat a lot. I use powder every day.
So,I am starting month seven, and I have been all over the place, I had a time when I thought I was normal then bam! it's back. That did wonders for my self esteem. From what my doctor says it takes time sometimes 2 years to heal. Be patient with your body while it figures out what is normal. So my treatment was anti=fungals for 9 weeks, antibiotic for BV infection for 6 weeks and hormones 3 times a week. Plus everything else I mentioned above.
What I have realized in my seven months is I get chronic yeast infections so I am now sitting here with acid like burning. My doc is out of the office today. So I hope I helped even just a little, I know you are not in the States, but google the products I mentioned and maybe you can find something similar where you are. Good Luck!

Thank you so much for your detailed post. I have written everything down and your suggestions and in going to do some research on the products tonight so see if I can get any over here.

I'm sorry you are in pain and having a hard time. Do you have provoked pain or is it Ther all the time?
Did it help when you changed your shampoos ect?

Livinginpain - It sounds like you were seeing Dr. Fowler. I'm on his treatments now. Can you tell me how things are for you? Did you find relief following his treatments?