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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 3

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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 …

Comments: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

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

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

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 …

Comments: 10

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.

Comments: 1

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 …

Comments: 0


It feels so good to get this off my chest....

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It feels so good to get this off my chest....

Post  mypalal8907 on Thu Jan 03, 2013 6:52 am

I've known the name for my condition for a year and a half now, but I've had it since always. At least that's what it feels like. When my doctor asked me to think back on when I first noticed the pain, I realized it was when I first tried to use a tampon. I don't know when the symptoms really began though because I didn't try to use a tampon until I was about 15 or 16. (It wasn't until my doctor told me all the symptoms that I realized that tight pants and sitting wrong also caused pain. I don't know why I thought random, searing, but brief pain in vagina was normal, but I did.) Anyways, my mom figured that I was too young for tampons. I started my period when I was 10 and I never put anything in my vagina to notice if there was pain before I tried to use a tampon. It was so embarrassing when I tried to use them the first time. It hurt and my mom figured that I couldn't put it in right so she helped me. It still didn't work. My dad would get upset because I wouldn't swim in our pool with the family during my period. He actually told me one time that I just needed to "shove it up there". Those were his exact words. I asked my mom if it could be that I hadn't had sex yet and was maybe smaller than average down there. She agreed with me and we both assumed it would get better if I tried to use tampons more and if and when I eventually had sex. I couldn't keep using tampons because if putting them in was painful, and after a period of time they would start to burn, the pain of taking them out was terrible so I just stopped using them. I went to college not using tampons. I couldn't even use the extra small light ones. My friends didn't understand no matter how I tried to explain it to them. They thought I was just weird and that it was gross that I used pads. I started doing more stuff with guys eventually which is when I began to notice that fingering hurt. Those were some conversations!!! I was already told by so many people that a girl's first time having sex would most likely hurt, that I became utterly scared of sex. I still am. I mean I figured if fingering and tampons hurt that sex would only be worse. However, I had this lingering hope that maybe once I finally had sex things would sort themselves out down there. That my vagina might stretch out a bit and the pain would go away and I could have a normal sex life. The summer right after I turned 22, I had a brief fling with this guy. We didn't have sex but when he tried to finger me I had to stop him as per usual. As I didn't know yet what was wrong down there, I explained to him as best I could why he couldn't do that. He was pretty understanding. Then I went to Europe for a few weeks and he moved away. When I came back I decided that I was tired of not being able to go further and that I wanted to have sex. I've never had a boyfriend and my experiences with guys have been limited to mostly drunken encounters. These drunken encounters were getting more serious the more sexually frustrated I became and I was worried that I'd end up drunkenly having sex one night and I was yet to be on birth control. I'd been on it once before but it messed with my emotions and since I wasn't having sex I got off it. Well, now I wanted to be protected just in case and my period pains were usually pretty bad, not to mention my periods were just plain irregular. So, I went to my doctor. She prescribed birth control and asked if I had any questions. I told her about not being able to use tampons and having pain when fingered. She said she wanted to do something called the q-tip test. This is how she diagnosed me with vulvodynia, which she also told me is a fairly broad term. She lightly, and I mean lightly, touched the opening of my vulva and it burned. But, the weird part is that I've never had any physical kind of trauma there, which she thought at first could be the cause. She thought maybe it could be emotional but I don't know. When I was little kids were mean to me about sex stuff I guess, I developed faster than everyone else in my grade and my sex drive is shamed by the religion I used to prescribe to. I no longer do, the feminist in me won't allow it. Maybe the physical pain is a manifestation of the shame I've been made to feel for most of my life concerning my sex drive and now that it's physical just mentally undoing the damage is no longer enough. But, I don't know. I just want to understand this. I want to understand why I just can't be normal. I'm 23 now and I have self-sabotaged so many potential relationships since I've found out because I don't want to have the sex talk. The weird thing is that I still have drunken hook-ups sans sex and drunkenly tell strangers that we can't have sex and why. I was in physical and mental therapy while it was free at school (well practically) and I seemed to be making progress. Now that I'm home and struggling to find a job, my dad won't allow me to use our insurance for either of these things because it's a bank of money not a copay system. I have the dilators my physical therapist gave me and special lubricant she recommended. But, I can't get myself to use them. I'm scared of them. I'm scared because I live at home and have no real privacy. I'm scared because I think I'll hurt myself and make it worse. But, most of all I think I'm scared of sex and what it'll mean to get better. I've been this way for so long that I'm scared of changing. I'm scared of my own sexuality and I hate myself for that. I know that I have to want to get better and a good part of me wants to get better. Yet, there is that small, dark part of me that is just straight scared.


Last edited by mypalal8907 on Thu Jan 03, 2013 6:56 am; edited 1 time in total (Reason for editing : grammar)

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Re: It feels so good to get this off my chest....

Post  Alana3 on Thu Jan 03, 2013 2:12 pm

I think it's normal that you're scared, I am too, and sex can be enjoyable for me. Or it was. I just had the surgery. I think that you need to take a deep breath go to a gyno and figure out a treatment option for your pain. Trust me there are several, but it's quite hit or miss. I couldn't take it anymore so I opted for surgery. All of what you're feeling is normal for people with our condition, so don't discredit yourself. Sucky but true.

I too am scared of having a boyfriend and having that "talk". But I think trying is better than not. I'm told not all guys are idiots. Have you done anything to help your vulvodynia besides physical therapy? Medications, chiropractor, or acupuncture? It can help too. Where are you living? What treatments have you tried? Just know you aren't alone in this, and where it's shitty there are some things that can be done Smile

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Re: It feels so good to get this off my chest....

Post  mypalal8907 on Thu Jan 03, 2013 8:21 pm

Thanks for the support. I live in the United States in Ohio. When I was in college, my mom was able to hide my trips to physical therapy showing up on the insurance from my dad. I wanted to try other things but cost is a big issue right now and I don't really have anyone to turn to for that kind of support at this point. I went to another doctor specializing in vulvodynia here and he prescribed me lidocaine to be used with the dilators because I don't have constant pain, only when things touch it with the exception of occasional spasms and sensitivity around my period. So that is helpful but not exactly because I'm afraid of and uncomfortable with the dilators on my own. Also, with the physical therapist, she would work that whole area including my stomach, legs, and lower back. I also discovered that talking to a psychologist about other issues worked well with the physical stuff, but again cost is an issue there too. My physical therapist thought their might be a link between me holding stress and tension and the vulvodynia. But I'm willing to look at other options and reexamine costs, I've been hearing a lot about biofeedback but I don't know what that is. Do you or anyone was have information on this or links to information?

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Re: It feels so good to get this off my chest....

Post  Alana3 on Thu Jan 03, 2013 9:07 pm

Oh Ohio! I went to school in KY, live in Florida and am obsessed with the Buckeyes. Smile Ok that being said... Why is your dad so against this? I don't really know that I'm aware of biofeedback. I did physical therapy, tried every medication under the sun, and finally did the surgery a month ago yesterday. If it's provoked localized surgery may be an option for you too, it's a long recovery and I'm bored but I heard its worth it. So far it's just long and I want to workout lol... I was never given dilators, but I can imagine that it's pshycohologically intimidating. I don't really know what to tell you, but you def aren't alone in this, I promise! How about acupuncture or massage would your dad be ok with that?

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Re: It feels so good to get this off my chest....

Post  juleps on Tue May 07, 2013 7:38 pm

i just read your part and realized i also had always problems with tampons.
is it possible there is an anatomic reason?
i mean it seems not normal to have so early on such issues no?
i for example still have a bit of my hymen leftover. i never thought it might be an issue but it seems weird to have problems of such a young age on? (like me too)

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Re: It feels so good to get this off my chest....

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