New here :)

Hello,

I just discovered this forum and was so surprised that so many others have the same problem as me! I got married two years ago and prior to that really had no issues with symptoms. I was able to have sex with no pain but it pretty much felt like nothing was going on down there. Now that lack of feeling has switched to pain in the past year and a half or so. Sex was almost excruciating to the point where I feared I may have an infection or growth. I went to the gynecologist who conducted a pap smear and the pain from that was so bad I nearly passed out. It was then that she diagnosed me with vulvodynia. I have pursued no treatment because all that my doctor offered were anti-depressants which I am not willing to take. I am hoping to find alternative treatments via this forum. Volvadynia has destroyed my sex life. My husband has been incredibly patient but I need to find some relief. The symptoms exist only during penetration but the toll it has taken has extended outside of the bedroom.

Nice to meet all of you!

heightlandia,

Welcome to the forum!

I've tried a few different things to help ease the pain. Not all of the really worked for me so I'll just tell you the ones that did help me and hopefully they can help you too!

I totally understand why you wouldn't want to take the anti depressants, but they do sometimes work. In my case they did help ease the pain, but didn't fully get rid of my symptoms. The one in particular I used was amitriptyline. I started with a small dose and worked my way up every week. Once I got up to a higher does I did notice a difference in the pain. At one point I felt fully cured, but then symptoms came back, but I felt better while on it than not. Eventually I had to stop taking them since it started to make me loose my appetite making me loose a lot of weight. Usually a side effect from amitriptyline is weight gain, but for some reason had the opposite effect on me.

Another thing that helped me and usually helps most with vulvodynia is lidocaine ointment. It temporarily numbs out the area you put it on. Just a helpful hint, when you use this stuff mix it with some lubricant. With out mixing it with lubricant it can cause a burning sensation making you feel worse. With some this can make sex possible, but in my case it didn't help me in that way :[. I used this every night on a cotton ball and slept with it in my underwear not in my vagina, but close enough. Again it helped, but didn't solve my problems. I still use it to this day though when needed.

Some things you can do at home to help are changing your underwear to 100% cotton. Often sufferers of vulvodynia also have chronic yeast infections. Even if you don't I still suggest making the switch. Helped me tons! Also changing your soap can really help. I still use sent body washes, but only on my body not on my private areas. I use unscented ivory soap "down there". My gyno also suggested freezing a water bottle and sitting it between your legs if you feel hot or burning "down there". It fits in the just the right way and feels soothing.

I haven't tried physical therapy, but I would really like to. If you didn't know there's a type of physical therapy that can help ease the pelvic floor muscles. This could also be the source of your pain and could easily be fixed by a few stretches with a pelvic floor therapist. Only after a certain amount of time will you see results.

The final thing I've tried is surgery. Now I chose surgery as a last resort. Like I said above I never tried physical therapy, but I did consider it and it was ruled out that it would've ever helped me the way I was. I had a full vestibulectomy this past summer and it was the best thing I ever did! It was crazy expensive, but worth it. It changed my life. Surgery isn't for everyone, but it can be a good thing. Sometimes it works and sometimes it doesn't. It just depends on the person whose getting the surgery and the person performing it.

If you have any questions about anything please let me know! Good luck!

-Jen

Welcome to the forum!!!! Jen and I have very similar stories.

Let me tell you my story. When I was 16, I went into a gyno complaining that I couldn't use tampons, she said "that's ok I don't use them either". The thing is I WANTED to use them, but the pain was unbearable. But I figured that some people just couldn't and took it with a grain of salt. I had sex for the first time when I was 18 with my long-term boyfriend, and it was unbearable, I figured because it was the first time it would get better, but with him it didn't. I went on, went to college, and had sex with a different guy at 19, and we had an incredible sex life- so I figured it was the first boyfriend not me- and I even tried tampons again and was successful! But than at 20 or so, the pain began to hurt again and I couldn't have sex, the pain was just too much, I finally switched gynos because she was an idiot and told me to switch positions (like I hadn't thought of that myself!). The next doctor told me to try lube- SERIOUSLY PEOPLE?!

So after 2 sexless years I moved back home and went to a gyno here and she told me I had vulvodynia and gave me estrace (I was about 22 at this point) I used that crap religiously, and even went back to visit a guy from college to test my sex out. It didn't work. I was devestated, went back to her, she switched my birth control to seasonique, where I BLED FOR 16 WEEKS straight, she switched me to a new birth control Mircette, which I'm on today (I have to be on BCP for my periods!). But she wasn't responding to my pain, so I went to another gyno. At this point I thought I had endometriosis (which my previous doctor had said I probably did have because of cramps no sex, but she didn't want to check on it because it involved surgery- I'm sorry, but I WANT TO HAVE SEX!) So yeah, I switched.

Here's where it gets fun. I went to this new doctor in June 2011. I told him my whole health history ranging from cramps, nausea, vomiting, no sex, no tampons, you get the point. He told me it sounded like endo (after he ruled out ovarian cysts with an ultrasound and I was screaming because it's like a dinosaur raping you) he wanted to schedule me for a laproscopy. So I called them back a month later to schedule my appointment and they said I didn't need surgery. Ok? So at this point I had started PT and my therapist told me to go to this uro-gyno, which I did. She did the qtip test, which I reacted horribly to. She said I needed an IC challenge test which if you don't know is where they shoot potasium in your bladder via catheter and you rank the pain on a scale from 1-5. They said it "wouldn't hurt" I checked that with another doctor down here, and he said DONT EVEN THINK ABOUT IT. So I opted out of that, she also told me she wanted to do a laproscopy for endometriosis. But here is where things get weird- she prescribed me a compound of estrogen and lidocaine (this is a treatment for vulvodynia) and gave me muscle relaxers and naproxen (also a treatment for vulvodynia) BUT SHE NEVER MENTIONED VULVODYNIA ever. I finally got online and researched IC and endometriosis and decided that yes, I had cramps and I pee a lot (but always I had bacteria in my lab results), but I didn't think that was my problem. I continued with the compound and muscle relaxer and decided it just wasn't working. I went back to my original doctor who did the ultrasound and he looked at me right in the face and said "I didn't know you were in that much pain" for real THAT IS WHY I WENT TO YOU, DUMBASS! Furthermore, during my treatment with him I had itching, burning, etc, etc, he treated me 17 times for bacteria, uti's, yatta yatta and two times for ultrasounds and it never went away. The end with this dumbass was when he did my pap and I screamed and bled for 2 weeks after, he claimed that it was my birth control causing the bleeding (I had been on the same one for 2 years before that exam with absolutely NO problems). So a year later after I went thru medical bull shit with him and the speculum hurting, he said "it's time for your yearly". I was like honestly, I'm kind of nervous about it and repeated the story of the bleeding he said and I quote, "well hopefully that won't happent this time." WHAT THE FUCK! (sorry, language) So onwards to a new doc.

This was August of 2012. She took the time listened to me and said "Oh that's def vulvodynia, I have two options- one elavil (an antidepressant) or herpes medication (I forgot what it was, I ended up being allergic to it). I choose the herpes medication because it didn't have a lot of side effects known with it. Turns out, that isn't even a treatment for vulvodynia and than she called in a prescription for elavil without even consulting me. I didn't want to be on that because of the side effects. Next doctor. I went to him in October, he took one look and said here's your problem its vulvodynia, have you tried physical therapy? I said yes, he said OK I'm going to write you a compound and lidocaine patches for you to try come back in a month. I ended up having strep. Took antibiotics, felt good for a few weeks, the pain came back. I went back crying I couldn't take it anymore. He told me he could do surgery and just have this end. I opted for that. In December I underwent a partial vestibulectomy. It is a slow recovery process, but I feel VERY hopeful about it. I got the OK to go back to my life 2 days ago, and I have already got the middle dilator in (which before it hurt like hell). I still have to go to physical therapy to get the rest of my muscles relaxed, and I still do have pain, but I'm hoping it will go away. But he was able to get a finger inside without me screaming in agony. So that's my story

A few other things I have taken and still do are: yeast defense, a probiotic, and a cranberry supplement all purchased at Vitamin Shopped and I swear by them. Along with everything else I mentioned, sorry this is long, but I wanted to let you know it's a process but eventually you'll get somewhere If you have any questions let me know!! Good luck too!

Thanks to you both for your insight! Your stories sound similar to mine in that a few doctors were not able to diagnose me. They even suggested that I just wasn't lubricated. And then finally when another doctor suggested vulvadynia, she seemed very casual about it. She was the one who ended up prescribing the anti-depressant. She was so non-chalant about the diagnosis, as though all I needed to do was take the anti-depressant and I would be good to go.

I have honestly been dealing with it by not dealing with it. I just avoid sex completely because I really didn't believe there was a way to truly treat it. I am now in school and have really bad school-required health insurance, so I am not hopeful that I will be able to see anyone about physical therapy but that is a step I would love to take. I also can't talk to my friends about it because they all have superbly healthy sex lives and it makes it seem like my marriage isn't healthy if I discuss how little we have sex. That makes it so hard because obviously if my husband and I aren't having sex, my friends assume it is an attraction issue rather than a real biological problem.

They also think I am overestimating the pain. I don't think people realize how much it actually hurts. Anything that happens inside of me always aches and burns, even the ultrasound I had to check for other possibilities aside from vulvadynia. I bled and had horrible cramps for days afterward.

Anywho, I am happy to have discovered a place where people can commiserate, and thanks for the tips. I will definitely be trying some different things out!!

heightlandia,

I completely understand how you feel. No one can understand the pain of vulvodynia unless they've experienced it themselves. It's hard for people to understand. My friends used to rub it in my face when they had lost their virginities and I still hadn't. It was very upsetting to me, but I had to keep thinking of the positives to not having sex at that time and age. Like I knew I wasn't going to get pregnant or get STDs so that was a plus. Also my boyfriends friends would make fun of him for not having sex with me and it had gotten to a boiling point. I tried explaining vulvodynia to them, but they just wrote it off thinking I made up a disease just so I didn't have to experience the pain of having sex. They had/ have no idea what this is like. Maybe people would understand more if it was a more common disorder. I wish that vulvodynia would get some exposure in the news or something so more people could know about it and understand it. Maybe then someone could come up with a different way of treating with out having to get your vagina cut to bits.

The only advice I could give you there is to try and education your friends about it so they can try to understand. It's not their fault they don't know. Most doctors don't even know about it .

-Jen

Hello .. This sounds a lot like my story ..it didnt hurt but it didnt feel good either about a year ago and since then it's been excruciating .. Trust me this is so frustrating .. I've been doing physical therapy and after a month I've finally decided on taking neurontin which I'm not a fan of in the least. They just ordered me a topical cream too yesterday so their gunna send me that and hopefully it helps.. My boyfriend of a year and a half is extremely patient like your husband but its so hard for me knowing I can't make love to the love of my life. It's taken a complete toll on my everyday life.. Sometimes at work I just break out in tears thinking about how jealous I am of every other women I know because I don't know one other person with this condition .. My boyfriend has been worried lately cuz I obsess over it and just don't stop looking up info and ordering creams and such. The stress makes it worse too so I'm trying to chill out .. Honestly this condition has consumed me and I just have to work on focusing on other things in my life which kind of fell apart as I was diagnosed with this condition .. Just know that there's many women out there who completely feel your pain. I hope we all can become symptomless because as I've read isn't curable without surgery.. ( that's just what I read though )

Claire1031,

I understand your frustrations.My guy also became concerned. I remember a few years ago when we used to try to have sex, it just never worked and I cried afterwords. Id say we're pretty lucky to have such patient and understanding men in our lives.

About your comment on vulvodynia not being able to be cured with out surgery...there is some truth to that, but there are some women who are successful with other treatments. Sometimes vulvodynia can be caused by birth control, which is easily curable. Also surgery doesn't always work and in fact can make a persons symptoms even worse at times. In my case surgery was pretty much a success. I wish there had been another way though, as most people wouldn't want to have to get that surgery. I had a full vesibulectomy which removed all of the effected nerves in my vagina. I no longer have natural lubrication. I'm not dried out or anything, but I'm worried in the future that it might cause problems during menopause. But I'm happy I went through with it. I'm hoping one day vulvodynia will be a thing of the past and we will all be pain free.

Keep trying and don't give up! You always have friends here to talk to if you ever feel down and out about all this

-Jen