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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

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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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Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

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 …

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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 …

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6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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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 …

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Bad night with v

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Bad night with v

Post  Mvp123 on Fri May 20, 2016 8:29 am

Having a real bad night tonight. For the second night in a row, I'm up in the middle of the night in pain. I have to be up in a few short hours for work so running on no sleep for the second day in a row should be fun.
I can't stop crying. I'm a 23 year old girl with a great job., a serious relationship and I want I future. This v seems to take over my life. Obviously, my sex life is diminished. I'm slightly lucky in the sense that usually sex itself isn't usually painful. It's the days after I suffer. (Like now... My bf and I had sex Saturday and I've been in pain since.) My job suffers. When I'm in pain and can't function, have to call out, come in late bc I've been up all night and then I'm too tired to do work. Sometimes, part of my mental breakdown comes from trying to figure out how to function normally. I freak out thinking "how am I going to go sit at work all day in this much pain?" I consider trying going on disability but I literally have once in a lifetime job and I really don't want to give it up. I'm only 23, I want to work. I'm also thinking of the future... How can I live everyday in pain? And better yet, a pain that's hard to explain to people. I know there's worse diseases but sometimes I just wish I had them. Its messed up to say but I can't explain to my friends that I'm not coming out bc my vagina hurts or call out of work bc my vagina pain is flaring up. Also, babies? Holy moly, I don't even want to think about the pain I'm going to assume that's going to cause if I ever do get pregnant. (Though sometimes I think about giving it shot bc I've heard a lot of times you lose some feeling down there.) My self esteem is gone. I can't live normally. I've gained a few pounds over the years (sometimes I even suspect that this may be the reason my v started. It happened around the same time.) lucky for me both pants and excersise my vagina worse. So I'm stuck.

Naively, I have been living virtually pain free for about a month and I thought I was getting better. Well, this week sure has proved my wrong! V is back just as bad as ever and it's been like this for days! I guess it was a bad idea to get my hopes up bc now I'm having scary thoughts. I don't like it, I'm not that person. But, I'd be lying if certain thoughts don't come to my mind... I know I don't want to kill myself but that's why it's so scary when certain thoughts come into mind.

My rants over. Just wanted to vent. Thanks for listening

Mvp123

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Re: Bad night with v

Post  emalita on Fri May 20, 2016 1:09 pm

I'm so sorry to hear your pain is so bad. I absolutely understand how horrible this is on relationships with friends, family, and partners. I've also had thoughts of "well at least if it were cancer I could talk about my pain", but we have to remember that there will always be worse things we could be going through. But that in no way diminishes the pain we are in. Our pain is our own, and it is a horribly personal pain to suffer virtually alone with.

I can't tell you that after 2 years of struggling I'm pain free yet, but I am far better than I was even several months ago. Be persistent with your search for treatments, but also be smart about what you try. A lot of us fall into a trap of shoving anything and everything inside of us just for a glimmer of hope that something will make us better. Don't make that mistake  Smile

Being pain free for a month is wonderful and should be celebrated even if the pain returns! My best advice is to keep a pain diary. Write down every single thing that you can think of that you ate or did that you think could be related. I can't tell you how many times I've gone back months looking to see if I see a pattern, and it has given me great insight. You have to write things down on your low or pain free days also though because you have to capture the things that lead up to a flare.

Please feel free to PM me if you ever need to vent or chat. I'm happy to listen and provide support in any way I can. Hang in there, and be kind to yourself...things will improve eventually Very Happy

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RE Bad night with v

Post  Antaea on Fri May 20, 2016 5:27 pm

I am so sorry, that you're in so much pain, and I can relate to it, because the nights are really worse. Then our defense lowers! I also dread to work, the days are long, the work demanding. But I use painkillers. Not over the counter ones, but Tramadol. It's the only drug that eases the pain so that I can sleep. But I have to take it 13 hours before I have to drive. I explained to my doctor that I only use it when the pain let me stay awake. I also use Lidocain cream, but sometimes it is as if it makes the pain worse. Partly this does not help, since i have nervepain sitting "inside" my lady-parts.
Hope, you'll find a medication which makes it possible for you to sleep.
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Re: Bad night with v

Post  fairlight10 on Fri May 20, 2016 6:39 pm

Hello Mvp123 I can remember nights like those you describe. You fall asleep and wake with a sharp and cutting pain also burning. Sometimes the pain is as if it flicks. I believe these were nerve endings firing. I would writhe with the pain all night. A cold flannel on my vulvar. My husband would try to hold me and comfort me but I could not bare to be touched. When I finally had a diagnosis that was correct for vulvar vestibulitis I was put on a tricylic antidepressant called Nortriptyline at 20mgs. After a few weeks I noticed the pain pattern was being interupted. This was a good sign according to my consultant. This was four years ago. Last September my headaches that I have had for years became worse. I asked my doctor to increase my medication taking it 30mgs. Very gradually my headaches and vestibulitis improved. This drug is used for many nerve pain conditions. Also many vulvodynia suffers have other nerve pain conditions. Give this a try. Get control of your life again as I have. I still have my condition but it is managable and I don't experience that spiteful pain or burning. Just mild discomfort sometimes after urinating. Also as many sufferers have advised be careful of detergents in this area. I am postmenopausle so I can sometimes feel it needs moisturising. I have used small amounts of coconut oil and olive oil with success. Yes intimate lubrication for intimacy. That can be for later! Good luck.

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Re: Bad night with v

Post  Mvp123 on Fri May 20, 2016 7:09 pm

Thanks all for listening, taking the time to reply and the advice. It definitely helps knowing I'm not alone with this. It's hard to talk to my family, boyfriend or friends. They just don't understand. So, hearing words of encouragement and caring does mean a lot. The good news is I feel better now! The pain is not completely gone but I am able to function. I was actually going to skip my plans tonight because of the pain but I might just be able to go after all!. Now, that I’m a little more clear-headed, I can recognize that though this sucks, it could always be worse. Even in the realm of having this kind of pain, mine is far from the worst. I should count my blessings! (I can usually have pain free sex and it has gotten to the point where the pain is more spread apart.) Thanks for reminding me to stay optimistic. I actually read an article or something last night saying, optimistic people are more likely to heal! I will discuss all of these suggestions with my dr. to see what she thinks.

Emalita, I am glad to hear that your pain seems to be getting better! I will try to keep a pain diary because that actually makes so much sense for me. Why did I never think of that before! Is there anything specific you noticed that triggers your pain? Thanks for all your advice. 

Antaea, Is pain getting worse at night a real thing? Mine is almost always the worst at night and early morning! I thought I was crazy! I’m glad you found something to help you get through the nights. I will ask my dr. about it because that would honestly be a life saver. If I could skip these nights I would be a lot better off. I’ve heard of trying the Lidocaine before but it seems like it often doesn’t help as much as it hurts. It seems like the same for you? Would you suggest I try it? Thanks for your help. 

Fairlight10, I’m sorry you went through the night business. It is far from fun. I am glad to hear your finding some relief! It’s great to hear youre getting your life back. I’m happy for you and it gives me hope. One of the hardest things for me to accept is that there might not ever be a cure and the pain may never go away. Hearing this kind of stories is what I need. Did you ever experience any side-effects? I’ve read that tricylic antidepressants help a lot of people but I’ve also seen lots of people complain. I did try changing detergent which never seemed to help but I actually stopped wearing underwear and a lot more dresses and skirts. It took some time to get used to but it was worth it because I think it has really helped. Thanks again for replying!

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Re: Bad night with v

Post  emalita on Fri May 20, 2016 7:42 pm

That's fantastic that your pain is a bit better! I know it's hard and sometimes seems impossible but focusing on the positives hour by hour or day by day is so much more effective than month by month Very Happy

My pain is at its worst the week before, during, and after my period. More than likely this is just because most women are naturally more sensitive to pain during this time and not a hormone issue like I had thought for a while. My pain is caused/kept going by discharge touching my vulva (even though I don't have excessive discharge), and I know this because if I have a tampon in, I can be virtually pain free. The specialist I'm seeing diagnosed me with inflammatory vaginitis, which cannot be diagnosed with the typical wet prep test. This whole mess for me started after too many antibiotics and irritating treatments after an infection.

If you have any questions, just let me know. I'm an open book!

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Re: Bad night with v

Post  fairlight10 on Fri May 20, 2016 7:50 pm

Hi Mvp 123 yes there are side effects. I have dry mouth. Constipation. They are taken before bedtime and they help me sleep which is very helpful. You can feel groggy in the morning.

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RE Bad night with v

Post  Antaea on Sat May 21, 2016 11:18 am

Mvp123, no, you're not alone. And it is important to count our blessings, even in the worst pain. Because we  oly survive when we try to detach ourselves from the sufring.
Concerning your question, whether the pain is worse at night, the answer is yes and no at the same time. For me. I feel pain generally much stronger at night. A little cut somewhere is hurting a  lot at 2.30 am- During the day I can detach myself from the pain. The very moment I want to sleep, the pain takes over. Methods to relax are only partly working. The pain let me stay awake or awakes me in the middle of the night, and then nothing of my mental tecniques are working. So I try Lidocain cream, which often does not help or makes it even worse and feel worn out in the morning. Even I now only have lessons in the afternoon and evening, the day is very difficult and the pain get worse because of the lack of sleep. Usually I take one tramadol, which takes the peaks, but then I feel drunk and cannot drive for at least 15 hours the next day.
I think it is really important to sleep as well as possible. Talk to you doctor about getting some help to fall asleep. Not all sleeping medicines disturb the dream phases, which are very important.
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