Hi I am new and wanted to share my struggles with vulvodynia

I am so happy that I came across this group when I was diagnosing my symptoms I find it always helpful to share with people who are experiencing the same issues when everyone else thinks you are crazy. My burning started about six years ago and cannot exactly put my finger on what caused this. I am assuming it was a yeast infection as I have suffered with them regularly as well as a severe itching before every period cycle. I attended my doctor numerous times in those 8 months terrified I had a sexually transmitted disease. I had numerous pap tests and blood and urine testing. Everything was always normal. He later sent me to a surgeon who diagnosed me with an anal fissure and the doctor said this can cause burning in the entire area...or so I thought. I started using cream for my fissure and my vulvodynia slowly disappeared. I used the cream regularly and lived in the tub for those months having constant baths. Wearing underwear or any type of tight clothing was unthinkable. The pain would come and go after this first bout and would last weeks or months and then disappear. I had a partial hysterectomy a couple years ago and was symptom free of vulvodynia for about 2 years. Then about 8 months ago I started having period symptoms again and my vulvodynia reappeared. I ended up having surgery for the fissure as figured that this was what was causing my burning...well I found out after my surgery the burning was still there and obivously was not the fissure. I have gone to my doctor and let him know what I have figured out on my own what I have thanks to your forum. I am now on estrogen cream and have also used Vagisil which helps tremendously with the burning. I am happy to say that my symptoms are not as severe now and just the relief of knowing what is causing it is wonderful. I have read a few stories on here of people that use Lyrica. Is this a good thing to try? Any other advice would be great as I am kind of new to this vulvodynia and would appreciate all the help and support I could get.

I would like to thank you for setting up this forum as it is a great relief being able to talk to people and they dont look at you like you are crazy.

Lory

Hey you guys! Its awesome to find this site, and read these posts from other women besides me that struggle with this debilitating condtion.

The worst part about this disease is feeling like your the only one.

I feel, I lost relationships because of this thing. I mean its awful how Ive pretty much missed out on sex, as either I was too busy avoiding it, cuz it was too painful, and uncomfortable, or doing it, and not really being into into it cuz I was too distracted by the pain.
I cant tell you guys the emotional, physical, spiritual, and financial , aswell as time consumning toll this condition has taken upon my life. and guys just dont understand.

It started when I lost my virginity at 22, I am now 32, and for this year, or actually the last six months, I have feel I have finally taken CONTROL of this condition and my life, by perfecting a regime of holistic, and homepathic remedies I do every single day.

Ive been tested for STDS, I get tested every six months, and I always come back clean. Im prone to both yeast, BV, and UTI's, and I get one of the above, pretty much everytime I have sex.
About 3 years ago, my problems got really bad. To the point where, I was constantly aware of the area, burning, and singe-ing, or just feelin "Off" all the time. I was dry all the time aswell. I didnt have a sex drive. It got worse before and after my period, and the only time I ever felt normal down there was during my period. I guess, yeast or bacteria doesnt like blood. Sex also actually felt great on my period, cuz it felt half way normal. There were days when I was in bed, the pain was so severe, and I could go weeks to months without having sex and still, the pain level was the same everyday. I tried everything over the counter, and prescribed.
I started curing myself, and gradually being functional again, 3 years ago, with a vitamin e and folic acid supplement. That worked for about a year. Then the infections came back. I started a probiotic, high quality acidophilus, supplement everyday, and bought a yogurt maker. Took care of the UTIS. Awesome! Did nothing for the yeast and BV tho. Started taking vitamin a and d, aswell as a b complex, and coconut oil. Started wheatgrass shots. Getting better. But still not gone, and after a couple of sessions of sex. Raging, itching, burning pain back again, to the point where I cant sleep, and I wake up next morning with blood under my fingernails from scratching the area all nite long in my sleep.
Started Oregano oil, and Grapefruit seed extract capsules everyday. Did nothing.
Douches do nothing, make things worse. Apple cider vinigar works to relieve pain outside the vagina, does nothing to cure. Sea sa;t douches, garlic suppositories. Nuthin worked! Tea tree oil in vag. THAT worked. For a while. Then they came back and didnt go away again. Grapefruit seed extract, worked, sometimes, 20 drops used in a douche. But it was not failsafe. BORIC ACID!!!! That worked but it was AWFUL. Not only does it take a long time, like 2 weeks to cure an infection, its so DRYING and gritty and nasty. You cant have sex at ALL on it. And even after I cured the infection, I would have to wait a week, just to let the tissues heal, stuff was so harsh. I even bled at times, using it. Horiible. I was on it, for a good 6 months too. Its also posionous, altho its an old time cure and many women swear by it.

Whats so awful about this condition, is feeling like you have no control.

I never knew, from day to day, what my vagina was gonna do.

As one poster said on here, the pain comes and goes, some days are better than others. Even if I abstained from sex, there was no way to predict if the pain would go away or not, and it was so hard to date and try to have relationships with this problem all the time. It was disabling, and I wasnt myself. I wasnt even myself during sex, I was in such pain, and on some level embarassed all the time. You cant really tell anyone, or try to make them understand, since you dont even understand whats going on yourself.

Ive had guys tell me, its all in my mind, and other gfs never had this problem. I felt like I had no control, I felt disgusting, I felt frigid, barren,and alone. and I feel I missed out an awesome sexual experiences because of this issue. I prayed to God everyday, to give me a cure. Even in the shower, I prayed to God, I prayed to God to heal me, and help me experiences normal sex and a normal vagina.
Heres what I do now.....and for the first time, I feel 95% cured and healed and Im enjoying awesome sex again.

Go to the health food section of your grocery store, and buy Lavender, Rosemary, tea tree oil, and Myrrh essential oil(if you can find it), and get a mini ice cube tray. The kind of ice cubes they use for sport bottles, the elongated ones, you can find them on Amazon. Melt your coconut oil (as a base) it hardens, you will need to melt it, and add 3 drops each of Rosemary, Tea tree, and Lavender oils in each individual cube. Then add one drop,only one, as it is very strong of the Myrrh oil, in each cube. Insert twice daily or more if you have a really bad painful infection for as long as it takes to start feeling better. a week to ten days. Then do a maintainance dose, once every few days to a couple times a week. Essential oils are incredible and healing, and you can use them all the time, they are safe. I also do a suppository after sex, to prevent issues.

Guys, its an INFECTION, of some kind in there! Whatever it is, some of us women are prone to these microbes, cuz we LACK whatever flora is necessary in the Vag, that other women have, to fend them off!! Like a birth defect.

When I hear about these women getting surgery, or putting vagisil or lydocaine to numb the area, and not address a cure! Or these bonehead doctors put these women on these prescription steroids and painkillers, when thats not curing anything!

For along time, I thought it might be a physical problem too. But, its been my experience that these oils KILL the infection, thereby taking away the pain and inflAMATION. Sex feels 100% normal again now, and I can go about my day and forget about my vagina for once!

Vulvodynia in my opinion is many times, and infection. Yeast, strep, MRSA, I dunno.

Its chronic tho.

Its amazing, and disturbing how ignorant the medical profession is when it comes to womens issues. How backward, and stoneage, and third world it is, when wise women were well aware of womens issues, and have been using these cures for centuries. Its relevant and important, why should women have to suffer? this is not in our minds, it is real! Also when I got rid of the infection, my sex drive returned and with a vengence! )

The oils are safe, and so much better, that having yeast in there all the time!!

There is also a website, I can recommend, called earthclinic. com. Please google, well worth it

I also want to add. I take a TBSP of coconut oil every morning. Some women claim to cure yeast infections this way. By taking up to 3 TBSPs a day. I swallow it with warm coffee or tea. Also, I still take Grapefruit seed extract capsules a couple times a day, every other day, to a couple times a week. With or without the pain goin on. You buy it in a bottle in the liquid form. Its cheap! and the bottle will last you 6 months or more. I use empty gel caps and fill the caps with the GPS liquid 5 to 10 drops. It will burn your stomach after a few days, it can be harsh. Thats why you need to taper off, sometimes, it can be very hard on your stomach.

Also, Ive heard good things about colloidal silver, but it never worked for me. Ive tried it all

GPS. I said earlier it did nothing for my V. I was wrong, it DID help, and I STILL use it, as apart of my program. But it didnt cure it all the way. You need to do the suppositories with the GPS, and probiotics.

Oregano oil doesnt do hardly anything for my vag. But its GREAT for a cold or flu!!

I also want to add, that, when I am feeling really bad, really itchy, sore, dry, or I feel I have a full blown yeast infection. I use the suppositories several times a day, or I add more drops of the said oils, to make them stronger. Essential Oils are safe, even if they cause a burning sensation in the beginning when you first put them in. Try to gut it out, cuz the sensation will subside in 15 minutes. It means its working!! When Im completely healthy, and good down there, it doesnt burn hardly at all.

Happy healing guys!!

Thanks for posting and it is definitely worth a try