Is it Really VA?

Vulvodynia is a condition of the nerves - neuropathic pain - where the nerves in the external vulva area become hyperactive and hypertensive - touch is experienced as pain and there’s can be a constant burning sensation. It I should caused by physical or chemical trauma or can Ben post infection. Neuropathic pain is notoriously difficult to get rid of - it took me 2 years to be pain free from the Vulvodynia. 

A woman of any age can get Vulvodynia whereas VA affect menopausal women. The problem is that you can have Vulvodynia at the same time as VA and the trauma of the VA and reactions to some of the treatment can cause Vulvodynia. VA can be treated with HRT. If someone’s still has burning after HRT treatment then they probably have vulvodynia. See my post “how I cured my vulvodynia” to read my, and other women’s success stories.

I don’t believe my vulvodynia is neuropathic pain, vulvodynia has no known causes or factors. It’s can happen at anytime if anyone’s life’s, you’re right but I believe my pain is due to unbalanced flora. Dr. Fowler tests the vaginal fluid to see what’s happening to the flora, what’s missing, and what’s to excessive. For instance I had an overwhelming number of bad bacteria, rare good bacteria, lack of estrogen, and my squamous cells weren’t fully maturing. I don’t believe that it’s neuropathic pain for every person it varies.

Seline,

I agree.  Vulvodynia may be neuropathic, but it can also be caused by chemical irritation as mine was.  The term is used for any vaginal pain lasting more than six months for whatever reason or even be idiopathic.

My vulvodynia was caused by repeated and persistent thrush and chemical irritation from the home treatments I stupidly tried. You can test for it by touching lightly with a cotton bud and if you feel that as pain them the nerves are overactive and hypersensitive, registering touch as pain.

Vaginal or vulva pain lasting more than six months could be considered vulvodynia and it is not curable.  I asked the last gynecologist if it was vulvodynia or VA and she said it could be either.  The pelvic pain dr. is the one who diagnosed me with VA.  None of the other doctors knew this? 

I cu

I cured my vulvodynia. See my post “how I cured my vulvodynia”. Other women have posted their success stories on the and some have tried my treatments and had success with those.

How would I find your post?  I'm new to the forum.

Click on my name and it will take you to my info page. That post is listed in my discussions.

Thanks for the info.  I have a hunch that the amitriptyline is helping you the most.  I can't take it because I'm on amiodarone which is a QT drug and I can't take two QT drugs concomitantly or there is the possibility I can go into a dangerous heart rhythm.

I tried lidocaine/hydrocortisone 0,055.  The first time I burned, but I attributed it to not applying enough.  Yesterday, I applied plenty and it was one of my best days.  I applied as much today and I'm burning again!  What helps one day doesn't work the next.  We are leaving tomorrow, so I am experiencing how much I should apply if any at all before going on my road trip. I was thinking of using nothing and carry the lidocaine in my purse if I get really bad.  I am picking up the compounded estrogen next week and I don't have high hopes, for nothing so far is working.  Thanks for sharing your story.

The amitriptyline helped me sleep and dulled the pain a little but it wasn’t until I started the acupuncture session s that I had noticeable improvements each time I had a session - 10 sessions and I was pain free. Other women have been cured with acupuncture and didn’t take amitriptyline. Lidocaine stung me and made the burning worce. Hydrocortisone thins the skin and I didn’t want that.

Yep, I think it is the lidocaine that is burning in the tube of lidocaine/hydrocortisone I am using.  It has a lot of inactive ingredients, two of which are alcohol.  My OTC hydrocortisone only has inactive ingredients of mineral oil and petrolatum.  When you had acupuncture, where did they place the needles?  Did they use electricity?  I have heart rhythm problems and I'm leery of using electricity anywhere on my body. The gynecologist said in the low dose of hydrocortisone I'm using (1%) it would not thin the skin.  I'm leaving now and won't be back until Wednesday.  Thanks.

 

Dearest Lorrie

i hope you can have a good road trip I wish you the best!  My heart goes out to you with all that you are going through and all the medications.....I so think that is your problem and just wish you could give that area a rest...I wish a doctor can diagnose you properly!!  Lorrie what is your age?  Are you Post menopause?

Blessings,

Wendy

I couldn’t tolerate any medical creams or products on the sensitive skin. Everything stung me and made me worce. My dr said that I was probably reacting to other ingredients such as preservatives or ph adjusters. For example, they use sodium hydroxide to adjust the ph - that is caustic soda otherwise known as lye. It is highly caustic and used to unblock drains. Why put that in products intended for human skin!!! The only thing I could tolerate which was very soothing and made the pain bearable was saginil gel which is specifically made for reducing the overactivity of the nerves in vulvodynia by acting on the mast cells. It is made in Italy and you have to get it posted from there, straight from the manufacturer epitec, paying by PayPal. Other than that the only things I could tolerate were natural oils.

I had western acupuncture which follows the paths of the nervous system rather than paths of energy, as in oriental acupuncture (I believe they roughly correspond anyway). In western acupuncture they pass an electrical current through the needles. The needs were at the base of my spine where the nerves to the genital area exit the stank, cord. It was very relaxing and immediately after I felt an improvement. The benefit would build up with each session I had.

spinal cord

I fear any electrlc current due to arrhythmia.  I once used a very strong magnet with batteries at the base of my foot and it caused palpitations.  I keep wondering if the dr. didn't advise me to use estrace vaginally and only esternally, does this mean I can VA externally and not vaginally?  I'm overthinking!

 

Wendy,

I used a small amount of Hydrocortisone 1% externally on the morning we left.  It was about a four hour drive and I was fine!  The next morning, we were going on a boat ride and I used it in the morning with no problem and again in the afternoon before the boat ride.  The seats on the boat were tilted to the left which is where the burning is.  I was in pain the entire ride.  I found that less is more when it comes to the hydrocortisone.  I didn't use anything this morning before we returned and I was fine driving home!  This makes no sense to me.  Yes, I am post menopause as you can see from my name.  Thank you for your concern.

Well you can have acupuncture without the electricity. No idea what your dr is up to VA is internal. Perhaps they think you have Vulvodynia- I was advised to use estrogen cream for vulvodynia at one point but by then I feared any products on there because everything I tried made it worce.

Hi Lorrie 🌷

just checking in to see how you are doing I hope you are feeling better.  Did you start your cream yet!?

Wendy

Hi Wendy,

I felt good today and we went to a restaurant that was a 45 minute drive.  I was fine.  I used the restroom before we left and I burned all the way home.  I could hardly wait to use my bidet (hand held) and apply cortisone cream.  I believe it has something to do with toilet paper or urine.  A couple of people on the forum gave me tips on brands of toilet paper.  What brand do you use?

What did you eat? Some women report burning in the vulva area after eating foods from the nightshade group (tomato, pepper, chilli, potato, eggplant, etc.). These foods contain the chemical solanine which some people can react to in this way. Women have posted on this website that as soon as they stop eating these foods the burning goes away.

Suki, I ate a pulled pork sandwich with BBQ sauce.  It seems I get this from whatever I eat, but I start burning right after I use the toilet paper in the bathroom of the restaurant.  I also get this from my toilet paper at home but not as bad.  I am going to get chlorine free toilet paper as someone else suggested on another thread.  I'm grabbling at straws!  I will pay more attention to what I eat.  Thanks!

Lorrie

Something is wrong with this site today...every time I try to send you something it keeps deleting and goes to an advertisement.....

wendy

 

I am having a problem as well.  The page keeps freezing and when I type a letter, it pauses before I can type another.  How are you doing?

What type of toilet paper is good to use

Others on this board suggested bamboo and one that you can purchase at a national pharmacy chain with three letters beginning with a C.  The name of the toilet paper is seventh, etc.  Please PM me if you don't understand what I'm talking about!

Hi Lorrie

how are you feeling?  Better I hope!

 

Wendy,

I'm feeling so much better since I stopped using regular toilet paper and getting the one beginning with "Seventh".  I wrote on another thread that I stopped all creams and lotions.  I don't know which stopped the burning for now.  I haven't felt this good for eight months.  I picked up my compound today and I applied some to the crease of my arm by my elbow and I will see what happens.  It is burning just a tad.  I don't want to break my pain-free streak right now by using it.  Thanks for your concern and hope you are feeling better.

Hi Lorrie

Im so glad to hear that you are doing well!  I think your body needed a rest from all the different creams etc.  what did you decide about using the compound?  If you have how are you now.  I am doing fine.

I look forward to hearing from you

best

Wendy

 

I think there comes a point when we just have to stop messing about, trying different things and just let the body heal itself. It is worth trying lots of different things if you can find something that works, but there’s comes a point when enough is enough because each time you try something that makes you worce you are just aggravating the condition. For many months I tried different things (non hormonal) and in the end I came to conclusion that I could only tolerate natural oils so I just used those for 4 years. When sex became painful I agreed to try vagifem and I reacted badly to that so I agreed to try ovestin cream then call it a day. Much to my surprise, I not only tolerate the ovestin cream but it worked very rapidly to restore the condition of my vagina and increase my natural lube.

Suki,

If I remember correctly, Ovestin cream is the same estriol cream, correct?  Is it a prescription and what's in the base?    The compound pharmacy said they can compound either estradiol or estriol.  I wish my dr. had ordered the estriol being you have had luck with it. 

 

Wendy,

I don't believe I replied to your last post.  This site confuses me!  I was doing well until tonight after I took a shower.  I usually sit in a recliner after a shower, but I sat upright on a towel.  I found out the area I am burning (not bad, but disappointing being I felt good the last couple of days)  I have irritation on the skin on both sides of the perineum.  I can tell because my underwear elastic hits there even though it's covered with cotton.  I wonder if I use the cream in the vaginal area, will it help the area by the perineum?  I have a feeling it will not, for I think it is more irritation than atrophy in that spot.

It is prescription. It’s the standard estrogen cream we use in the U.K. There are all sorts of things in the base including things that I’d rather were not in it such as some alcohols, glycerin and the dreaded sodium hydroxide (caustic soda) to make the pH compatible with vaginal pH. I am not happy it contains those things, but it works so I’m not complaining!

Suki,

Estrace had alcohol in it and it burned like heck.  This is why I am trying a compounded cream.

Thanks!

I don’t think I ever identified what it was in the various product I tired that either stung me or made me swell up. I fully expected the ovestin to sting but it didn’t. I hope one day you will find what works for you.