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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 …

Comments: 13

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 …

Comments: 4

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: 4

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 …

Comments: 5


I don't know what to do anymore

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I don't know what to do anymore

Post  SinclairSassy on Thu May 24, 2018 5:05 am

I'm tired of living in pain. I'm tired of doctors not even knowing what this disease is. I'm tired of trying to discuss my disease with family members who are too fucking lazy to even google my disease to see what it is (and I have only told my parents and my husband). I printed out pages for them to read, but they couldn't be bothered.

I'm tired of trying medications that make me want to commit suicide. Lyrica - hello!

I'm tired of being in so much pain that I can't sleep at night. I'm tired of not being able to sit up straight. I have to recline on a couch all of the time.

I'm ANGRY that I cannot have sex.

I had to go on antibiotics for a tooth infection a month ago. I flared so badly that I literally shook each time it was time for me to take another pill. My doctor didn't even believe me when I said it caused a flare. Looking back, when I think about that time, it is almost like PTSD, except I am thankful that I have never had to serve in the military. (But am thankful for all active and veteran military - they make our country safe. And my dad is a veteran.)

I used to read all of the time. I loved books. But I don't read anymore. I boxed up all of the clothes I can't wear anymore because of this awful disease. I must have eight or nine boxes of clothes that I used to be able to wear that I am now donating to charity. I have about three boxes of clothes that I am holding back, just in case. But I know just in case is a lost cause. I'll never be able to wear them again. All I can wear are shapeless garments that i don't even like. I used to be attractive and fit. Now, I can't even exercise anymore because it hurts.. My vulvodynia doctor said to find a saltwater pool or build one. Well, there isn't one in my community and since I cannot work, how can I afford to build one? I have lost my femininity, and I think, a large part of myself.

Instead of buying my mom a mother's day card, I wrote her a letter telling her all of the things I was thankful about her doing (except, of course, actually looking up this disease to understand it - whatever).

Part of me wonders if by stopping reading books, giving away clothing, and writing a note to my mom, that maybe I am following the steps leading up to suicide. Maybe I am.

FFS, when I type in vulvodynia on this website, I get a spell check on it. No one cares about this disease, not even enough to have it on the list of words that are correctly spelled. Truly, no offense to this website, but honestly, shouldn't it be a word that doesn't prompt a spell check?

For two plus years, I have tried to stay positive, but I don't know if I can do it anymore.

I have seen a vulvodynia specialist. He said that aside from gabapentin, lyrica, and cymbalta, he can do nothing else for me. He wants me to see a nerve block doctor (not sure what they are called), a rheumatologist, an allergy doctor, an orthopedist, and a neurologist.

Have already seen an orthopedist, and the minute I mentioned vulvodynia, he acted like I had thrown acid on his face and crotch. First do no harm, my ass.

tl:dr
So frustrated. But mainly, so sad. Just so sad every day. Two years ago, my life was perfect. I'm not rich and I had my share of problems just like everybody else. I simply don't know what I did to deserve this.

SinclairSassy

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Re: I don't know what to do anymore

Post  SinclairSassy on Fri May 25, 2018 3:41 pm

I am so sorry if this post sounds negative about this website. Because truly, I have gained so much insight about this disease from this website, I can't repay the debt.

I am in pain. I have been told by doctors that there is nothing more they can do for me. But to make matters worse, my youngest cat is sick. His older brother has already suffered the loss of a younger sibling. I made an appointment later today so my husband can help me carry my baby cat in for care. He technically is not a baby, but he is my baby as he is the youngest.

I feel like my body has malfunctioned. I fell like I am broken. I would give anything, ANYTHING, to go back to two and a half years ago when I had my life back. It wasn't perfect, but I loved it, my life. I just wish I weren't so sad all of the time. I wonder why I am being punished. Maybe I was too happy? Is it ever possible to not feel this sad all of the time? Is it ever possible to not be afraid of the next flare all of the time?

But most important, I hope my kitten is well soon.

SinclairSassy

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I hope your okay

Post  Aquaben on Sat May 26, 2018 5:21 pm

Hello
I read your story and am so sorry for what you are going through. My wife is in the same boat as you and is on the edge. What you have described is the same thing she talks about. I wish I could help all of you but I myself am unsure. I have come on here to try and get some answers for things that can help my wife.
I know it's easy coming from me as I'm a man and probably don't understand your issues but I want you to know that I think all of you ladies that are going through this are amazing. If people know what you went through day to day there would be more help and i'm sure there will be one day.
I hope your cat is okay and you feel better.

Aquaben

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Don't give up.... please!

Post  nola218 on Mon Jun 04, 2018 8:43 pm

I was in your situation for 13 years. In fact, I had vulvodynia from the time I first tried to insert a tampon. I went through 13 years of doctors dismissing my symptoms as either "in my head" or just something minor that would heal up if I only wore white cotton underwear. Here is the exact list of things I tried that I sent numerous doctors to try to help:

Lidocaine (topical and injection)
Gabapentin – oral and topical
Prescription and OTC Painkillers
Biopsy and skin testing
Antidepressents: Cymbalta, Prozac, Zoloft, Effexor, Lamictal, Wellbutrin
Physical Therapy
Clobetasol Proponiate steroid
Hydrocortisone Valerate steroid
Hymenectomy, vestibular widening surgery
Dilators (1 year of daily use)
Botox injections
Psychotherapy
Antibiotics
Nystatin cream
Amitriptyline - topical
Premarin cream
Estrace cream
Gluten-free and low oxalate diet
Kegels, pelvic floor exercises
Home remedies (cotton underwear, mild soaps, icing, baths, water-based lubricants, etc)

I finally found my cure after 13 years. I went to Dr. Margesson in Manchester, NH. She didn't dismiss my symptoms, knew what vulvodynia was (unlike my primary gyno), and referred me to Dr. Adrienne Bonham at Strong Memorial Hospital in Rochester, NY. After one visit with her, she easily diagnosed me with vulvodynia and I had a full vestibulectomy. 3 years later I am in NO pain at all. It completely solved my issue. I'm not sure if you've given thought to this route, but I just wanted to share that I was once in your shoes and I am now free of the physical and mental anguish caused by this horrible condition. If you want more info, I'd be glad to share!

nola218

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hello

Post  jungleclover on Mon Jun 04, 2018 10:26 pm

Hey, I saw your post in my email inbox and I felt compelled to get back on here and offer what support I can. I am 23 and suffered extreme pain and anguish from this disease for 4 years on and off. It was the hardest thing I've ever been through. It turns out I have a semen allergy and was getting infections over and over because the doctors didn't know I had an allergy.

What I can say about this disease is that many of us do improve eventually. It will probably be the hardest fight of your life but I know you can dig deep and hang in there. It is painful, frustrating, difficult, and it steals everything you are away from you. I felt very similar to you. I couldn't have sex with my boyfriend, wear the clothes I wanted, or go walking for any extended period of time. I got horrible grades in my undergraduate degree and lost a lot of friends. For years I didn't know who I was because vulvodynia had taken everything from me, but I can tell you that I came out the other side and I am going to live a good life. I know a lot of us end up suicidal to some degree but if you look around people are getting better and leaving this site.

The doctors won't always do the right thing or know the right thing. I know you are in pain but you have to be your own self-advocate, explore all of your options, and push for what you need. Read scientific articles and call different specialists to see if they can offer you anything. There are a lot of options for you and eventually, you will figure out what is triggering your symptoms and you will be ok again. There are naturopaths, valvular specialists, allergists, women's health PT's and so many other clinicians that could be the key to finding your solution.

Lastly, try to remember that you were not always like this and you will not always be like this. When I developed vulvodynia it was a result of nerve damage which takes a long time to heal. Even after my infections stopped I had another 10 months of nerve damage to push through. You can speed this up by seeking help from a women's health physical therapist (I'm currently trying to get into PT school to do this). What I'm trying to say is this is a really difficult and lengthy process but you will come out the other side. Try to hold on to any joy that you can. If looking at your old clothes hurts too much then get rid of them but if having them around and knowing you will be able to wear them and be you again is helpful then keep them. I'm rooting for you! We all are.

Best wishes,

Aleah

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Get Vagicaine!

Post  davesjen on Mon Jun 04, 2018 11:59 pm

Hello Pain Sister - I’m so sorry you’re suffering - please get to your nearest Target and get some Vagicaine - it’s in the section with all the vag stuff - it will numb your vagina...it’s the only thing that’s kept me alive - pound your probiotics and prebiotics as well...blessings...

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Re: I don't know what to do anymore

Post  sarisbaris on Tue Jun 05, 2018 2:34 am

I'm so sorry you're suffering! It hurts my heart to read your post. I was there for so many years. I battled V for 15 years. I'm cured now. Please don't give up hope. I used to write an entire explanation down so I finally created a blog. I was healed using fruits and vegetables as medicine. Plus some supplements/herbs. I tried everything, it was a nightmare. Please consider this and let me know if you need help.

http://myvulvodyniacure.blogspot.com/2018/05/basics.html

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Re: I don't know what to do anymore

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