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» Lichen Sclerosus
Yesterday at 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


Vulvodynia-My story and advice for coping with this chronic pain condition

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Vulvodynia-My story and advice for coping with this chronic pain condition

Post  KirstenRub on Tue Jul 15, 2014 1:49 am

If you are reading this posting, chances are you feel downright miserable and are looking for stories that are similar to your own. Stories that offer advice and hope that the pain and burning can and will get better. I sure can relate because I have spent the better part of a year googling vaginal burning and pain every way imaginable, hoping that some magical website would appear and provide the validation that other women must experience this. While I am not sure that my specific story is important, I do have what I think is some good advice that I will share as it seems that I tried a lot of different things. Some of those things helped and some probably made my situation worse and some surely made the situation worse. My hope is that someone will read my thread and find something that they can take away. Either something that they could incorporate into their treatment or something that could be avoided.

My backstory: I am a 39 year old female that has had a history of fibroids and ovarian cysts. I have had 3 surgeries, a myomectomy and 2 laparoscopic surgeries in 9 years. I have suffered from heavy periods intermittently (3-6 months long)and pelvic pain. I have also experienced urinary frequency and bladder pain over a few years that a urologist treated with a bladder relaxer medication. I do not recall having a "painful vulva" or any particular sensitivity. If I was not having heavy bleeding, my sex life was normal and no pain. Last summer I took several courses of antibiotics for an inner ear infection/sinus infection. I was on 3 different antibiotics a total of 4 times between June and September 2013. During my last course of antibiotic (levaquin), I got a yeast infection (culture confirmed). What I remember most about it was that my bladder was extremely irritated and that I had a burning pain. My obgyn treated me with diflucan and sent me on my way. I began to feel better after a few days and maybe went a little overboard with using antibacterial soap. And then there was a vacation in which I got into a heavily chlorinated hot tub... every night. It is no surprise that I had a reoccurrence of yeast (culture confirmed). My obgyn treated me with diflucan and also nystatin because my vulvar tissue had tears from the yeast. I followed the treatment regime and again experienced some relief. Then came a surgery in December. About 1 week post surgery, I began to experience constant vulvar pain. Burning pain and unrelenting discomfort both in and outside. I am no stranger to cramps and pelvic pain, but there was truly nothing I could compare it to. Several trips to my obgyn and primary doctor ensued, every test under the sun performed. All cultures negative for any infection. They both agreed that my tissue was red and inflamed but I was offered no explanation or additional treatment other than steroid cream and more diflucan, I also tried a laundry list of alternative remedies with little or no success. After several months of misery I decided that to locate a physician who specializes in vulvar pain. I was so fortunate to discover that there was a vulvar pain expert in the Central Florida area. I made an appointment and have been in her care since May of 2014. I arrived at her office prepared with every little treatment I have tried and all the results from tests showing I have no infections, exotic yeast... etc. She examined my skin with a special machines that allowed her to see several layers under my skin. She also performed a pressure/pain test. I was diagnosed with Vulvar Vestibulitis and Vulvodynia. She explained that my vulvar skin was absolutely ravaged and we talked treatments. She also performed additional tests to determine if there were any underlying issues. In my case there was not. Thyroid and ovarian function is normal. No infections. My vaginal ph has been at an 8 throughout, but I repeat no infections. It was as if "it" had just stopped working. The only relief I felt was when I was actually on a period. Lucky for me my periods were running about 2 weeks long. The day the period would end, the pain would return and I would be climbing the walls. I began treatments about weeks ago and I have experienced some improvement and hoping to continue to do so. From what I can gather I may have developed an allergy to pads that had caused mild discomfort (bladder) . Perhaps I got this allergy because I wore pads for almost a year straight. Long periods, wearing when I did not have a period because I was afraid of accidents. Then came a yeast infection that caused a full blown injury to that area. So while I had an event, I may have been heading that way for quite a while. I am not sure where I will end up but I do feel better most days and that is a victory. I wanted to share my experiences with treatments and how they worked for me.

Nystatin and plain steroid cream: I used them on and off for several months. While I did get some relief from pain, I suspect that extended use may have helped damage my skin.
Diflucan: I have and will be on this medication for quite a while. I do not have a yeast infection but cannot afford to get one so it is part of my treatment regime.
Rephresh and Luvena: I used these to see if I could get any relief as I was very dry and irritated skin. I think that I may have seen a slight improvement, but not enough to continue to use.
Apple Cider Vinegar: I soaked in sitz baths and surprisingly I noticed a bit of relief for a short time. I assume this was due to my extremely alkaline ph.
Coconut Oil: Surprisingly enough, I have found that coconut oil offers significant relief. I got the idea when my Dr. prescribed my compounded cream. She ordered it made with coconut oil because it soothes the tissue. I ran up to my health food store and bought some fractionated oil. I use it to moisturize the tissue after showering and find that I feel much better.
Vitamin E oil: Tried this as well and worked for me but not as well as coconut oil did.
Sanitary Pads and Napkins: Stopped using disposable ones completely. I transitioned to reusable cloth pads. I have tried three brands now and I give them a thumbs up as far as helping with irritation. You can adjust very quickly but I have gotten creative with layering because I have had accidents. Cleaning them is not as bad as one would think either. They can be pricey to get started, but I have to say that it helped me.
Soap: I stopped using soap. This was really difficult for me. I switched my shower head to one with a filter to help reduce chlorine in my water. I rinse with water twice a day.
Benadryl: I did take this at night early on because it did seem to help a bit at night. Maybe just to sleep a bit better. Maybe because it is an antihistamine and I am allergic to something, yeast?
Prelief: Why not? I read it might help with bladder issues and the like. Did not work for me. But I did get a strange calcified film on my teeth that my dentist told me about it.
Hypnosis: I went to a hypnotist to help manage the pain. I found that it helped relax me a bit and made me more aware of when I was tightening. I found the experience worthwhile to me, but understand that it is not for everyone.
No Panty hose or tight clothes: UGH... NO SPANX and I do hate this. But I know think that it helps me not to where these. I also try not to wear underwear at night, but that is not always possible with me since my periods are longer and unpredictable.
Physical Therapy: I started physical therapy a few months ago and have noticed some improvement. I had high pelvic tone and hold my muscles very tight. They do not release easily. Eventually I will have additional therapy to be able to insert something, but it still hurts too much. My improvement so far has been with the vulvar tissue. The entrance and the vagina are still painful. If I touch it or try and insert something I will have burning pain for a few hours Sad. The biofeedback exercises have been the best for me.
Compounded cream: prescription cream of low dose natural estradiol and clobetasol preparation in coconut oil base applied nightly. To replenish vaginal tissue. This has worked pretty well for me so far. Have had significant improvement with outer vulvar tissue but have not been able to insert an applicator without pain, so have not started that yet. Things downstairs are definitely working better now, thanks to this cream. I am not sure if it will take care of the problem completely but I have good days now. There are still some nights when I apply it, I experience that white hot burning pain.
Flexeril: My doctor prescribed this for me after my first follow up. When I reported some success with physical therapy she suggested this as a complement. I take 5 mg or 10 mg nightly and I do think that it has benefitted me. If only for sleep.
Good Doctor: After going to my usual obgyn several times with nothing but a shoulder shrug I quickly recognized that this type of pain was not his specialty. I cannot stress how important it is if you have insurance or funds to research a physician that specializes in vulvar pain. I was so fortunate to have a top doctor in the US in the Orlando area. She explained my condition to me and gave me a whole packet of information that even included a packet for my husband so he could understand this awful condition. She also told me that there are many more treatments available so if the one I am on does not work, then we can try another. I used the internet to search as well as called around until I found her.

Thanks for taking the time to read my story. If there is anything more that I could do that may assist someone suffering, just let me know and I will do my very best.
I have to say that I never expected to have a condition that was so disruptive and traumatic on a physical and emotional level. I admire all of us that suffer in silence and forced to continue on with their life as if there was no pain. Maybe together we can work to bring attention to this medical condition so that quicker diagnosis can occur.





KirstenRub

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Re: Vulvodynia-My story and advice for coping with this chronic pain condition

Post  Alana3 on Fri Jul 25, 2014 6:30 pm

I live in florid you go to lamvu?

Alana3

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