Please help

I have provoked vestibulodynia and I was able to reduce my pain by 80-90% by switching to all natural bath products (shampoo, soap, shaving cream etc.) and laundry detergent. I no longer have the severe burning/stabbing pain upon provocation to my vestibule. I have a remaining mild pain upon direct provocation to but insertion is no longer painful. I am now applying Estragyn topical cream locally to help with the remaining irritation and it appears to be helping. I believe my pain was mainly caused by a sulphate allergy. This is not the solution for everyone but it's worth a try. You can read more about my experience through the link attached to my signature if you're interested.

Hi ladies!

Just wondering for those of you who are applying hormone creams, how are they supposed to work/help? I don't think my provoked pain is a hormonal issue, it's more of a tissue inflammation/sensitive nerves so not sure if I should consider using those creams.

An update from using saginil gel for around 10 days: unfortunately I don't think saginil gel is effective for me. I am in a dilemma of whether to continue using it or should switch back to lidocaine ointment. Maybe I will stick to it for a while more. Please let me know if this is working for you if you are using

If you have an unusual strain of Candida, what I understand is:
Fluconazole won't work, probiotics & anti-Candida diet alone doesn't kill Candida, symptoms are worse running up to your period. Boric Acid apparently kills all strains of Candida/Bacteria, so many people swear by it as an antifungal/antibacterial/anti-inflammatory. I haven't used it myself though so I can't advise properly.

Hey @A2015,

I'm pretty much the same as you, hardly any visible symptoms. When I was getting my last session of laser the doctor said he did notice that sections of my skin were a bit darker, which is not consistent with normal skin. However he was not a specialist in vulvodynia so he suggested for me to go back to my specialist and get it checked out, which I am yet to do. The amitriptyline legit cured me. I remember having sex with no pain at all, and just thinking "oh cool this is fixed now." This was before I fully understood the extent of this condition. I stopped it after 2 months, because my specialist said if after 2 months it was okay, I didn't have to go back to her. However she actually said to use it for 6 months, which I got mixed up, so I thought I only have to use it until it was better. I regret stopping it sooo much now, but I only stopped because I thought I was meant to. Our wires just got crossed. So disappointed! I would definitely recommend going on it. I still use it twice a day, and I'm able to have sex with just pain on initial penetration. When I was first diagnosed it was way too painful to have sex, so it has definitely helped.

I actually have no idea what caused it. I kept going back to the doctor because it felt as though I had a UTI, so of course I wasn't having sex because everything hurts and I couldn't even imagine doing it. Time after time again I would go back and have the same urine tests done over and over, been given all these different antibiotics to try until they eventually put me on macrodantin which was meant to be preventative against UTIs. When that didn't help my mum said that I had to go see a specialist. The repeated use of antibiotics is the only thing that I can really pinpoint as a possible cause of my vulvodynia. Every time before that, I was having pain free sex. I'm just so sick of this!

Hi again sgw11,

That is interesting. I am a little confused about how topical antidepressant creams work, whether they actually target inflammation or nerves..? Of course the mystery of the symptoms we have makes it hard to know which medication should/could work.

When you say yours is provoked, I would agree mine is too. If I touch the skin of the reddened/inflammed vestibule, it is very sore and tender. Is yours like this? If so, did this simply go away when you used the amitriptyline cream? You must have been so relieved when you could have sex with no pain—what type of pain do you experience?
I am so desperate to see my skin in that area just reduce to its normal colour with no inflammation—as it did like magic when I came off the Pill!

I would suggest you consider coming off the Pill just to see, even if you have been on it for a long time, as I think some women have developed VVS after being on their BC for a while.

Dermatologist tomorrow, will see what he says.

I'm with you A2015. I'd love to see my skin go back to normal too. I am inflammed 24 / 7. I'm on Lyrica but it doesn't do much at all.
.

Hey A2015,

yeah all your symptoms sound exactly like mine. Yeah it made the pain go away, but now when I put it on I can feel it hurting, but nothing crazily painful. The pain I experience kinda feels like tearing or something. How about you?

And sailor_moon, I also tried Lyrica but it didn't do anything for me either

hey A2015,

any news on the dermatologist front?

Hi sgw11 & others,

My dermatologist had a very good manner, listened to my entire story carefully & is a very experienced dermatologist. He inspected me (Q-Tip etc.) and confirmed Vestibulitis. He says my case is 'mild' and the condition is very common, he sees a lot of it. He says my vulva looks normal, though I know my body and there is certainly a mild redness & swelling of the sore vestibule (just like it was when I had this on the Pill, and it went back to normal). I asked why coming off the Pill led to a complete resolution of symptoms, and he said he did not know why.

He wants to see if it settles, as he explained about nerves getting overly sensitive following infection. He said the words 'it will get better' so I must hold onto this hope, however hard it is to believe.

He explained the next choice of treatment would be a low dose antidepressant, but I am concerned this is more appropriate for unprovoked Vulvodynia than provoked, localised Vestibulitis, with rawness of the skin (however subtle it is).

For now, I have chosen to apply Vitamin E oil daily. Please no negative comments, as I really have to stay positive, we all do!

Hey A2015,

thanks for keeping us updated. So he didn't give you any other creams or anything to try? I would highly recommend getting the amitriptyline cream (low dose antidepressant). It cured me to being with, but as I've said before there was miscommunication with my doctor and I stopped using it before I was meant to, and then the vulvodynia came back. I still use it now and I'm able to have sex, but there's still pain. Yes, positive thoughts please! I've heard stories of women who have it for like 10 years and it goes away...let's just hope we don't have it for that long! I've also started the saginil gel, but so far there has been no change. I'm also booked in to see a dermatologist in July who specializes in conditions of the vulva (she was so booked up so hopefully that's a good sign).

Hi sgw11,

No he didn't prescribe anything for now.
I'm concerned that Ami cream or other antidepressants (topical or oral) simply mask the symptoms, rather than actually curing the Vestibulitis for good. Though I imagine that'll be my next treatment. I wonder if it actually would have resolved completely if you had used it for longer? I'm not sure. Does anyone know of someone cured for good after doing this?

I commented yesterday on a post by anon99 titled 'Stop taking your birth control!'. She had been taking BC since 16 with no problems til she was 21, came off the Pill and was cured. I feel you should consider this as it sounds like your situation!

Positive thoughts. Again, while it feels like a permanent situation, my body went back to normal completely (tampons, painless sex) so it has to do be able to do that again, one way or another.

Hi Lady I was 14 when I started experiencing problems with my vulvar area. When I was 15, I was diagnosed with vulvodynia. Nobody in my family really cared until I stopped going out, I got depressed, I started crying more often, and I felt utterly depressed and hopeless. I thought my dreams were crushed because of this condition. However, I didn't fully give up. I started doing intensive research and found that what I was experiencing was like a REALLY BAD yeast infection. So this is what I did to cure myself (I've been cured for almost a year now! )
-Core exercises
-Calcium Citrate everyday (you can get it at Walgreens or CVS)
-NO MORE SPINACH. I used to have it three times a day. (cut down on high oxalate foods)
-No more bubble baths
-Vitamin pills everyday

DO NOT USE ANYTHING ANTI-FUNGAL. You'll only make the imbalance of bacteria in your vaginal more imbalanced.
Do it the natural way, and you'll be cured. It takes time, but it does work

Hey all,

I'm 23 and was diagnoses with provoked vestibulodynia about a month ago.
I've just read through the previous threads and am amazed by all the different treatments you have all been offered!
My consultant, who diagnosed me, has given me oestrogen pessaries and an numbing gel. He believes the disease was triggered by a change in hormone levels (I've tried about 5 different oral contraceptives in 2 years) so the oestrogen is meant to help. However, the pessaries are so painful to put in, even with the numbing gel, and I'm feeling really hopeless. I wasn't offered an oral alternative to the pessaries, but surely they would make so much more sense.
I've also read a lot about about women taking calcium tablets- Are these worthwhile trying?
To be honest, I'm really struggling at the moment. The diagnosis is just hitting home and I'm starting to feel really low. I try to have non-penatrative sex with my boyfriend to try and keep some passion, but every time I do I end up in tears because it reminds me of what I can't do anymore. I worry I will never have a healthy, passionate sex life again and it makes me so sad to think about all the wonderful sex I've had in the past.
I don't know how to move forward really, what treatments to pursue or how to handle my relationship with this issue. At the moment I've asked my partner not to initiate anything sexual as it makes me so upset. Maybe I'm just coming to terms with it.
Any advice or help would be amazing, I'm so grateful there is a forum available!