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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

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.


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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?


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