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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

Laser or Botox Injections for treating vulvodynia

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Laser or Botox Injections for treating vulvodynia

Post  mhhh on Sun Nov 26, 2017 12:10 pm

Hello everyone!
It is great to find a support group for vulvodynia. I am 26 years old and recently married. Been a virgin until my wedding, the point at which I realized I have a problem in my lady land. I've experienced alot of pain during intercourse and my gyno insisted that it is because I have a thick hymen (I never tried using tampons and inserting anything down there). I believed that, but months have passed and the pain persisted and obviously was not a hymen issue. I changed my gyno and found a doctor who did a Q-tip test and diagnosed my with vulvodynia and vaginismus which resulted from vulvodynia. I overcame vaginismus by perfoming kegel exercises and learning to relax during intercourse.
However, vulvodynia is not stress related and no matter how calm and ready I am for intercourse, the pain is just there. My gyno prescribed Amitriptyline as a first solution. Started off with a low dose of 12.5mg each night, then increased to 25mg. I found relief for a few weeks at 25mg, but the pain re-emerged out of the blue. I increased my dose up to 50mg (been on that for 6 weeks now), pain subsided a little and I am able to have less painful intercourse. I have some good days and some bad painful days. I do not know why it is like this and why the pain reoccurs. The 50mg dose is also causing me terrible constipation and a little increase in my weight (which no amount of exercise is bringing it back to original). I hate the fact that I need to be on meds and taking pills every night with the side effects. And what makes it all worse is the pain recurring on some days for no reason. I am looking for an alternative option that does not require taking pills or meds for the rest of my life.

In this regard, my gyno has suggested laser therapy and mentioned Botox injections at the areas that hurt (around and at the entrance of the vaginal opening). I am waiting for more details from her (as she is currently on her vacation). Meanwhile, I am starting to consider one of these options, mainly laser. Has anyone tried laser and had success with it? What about Botox injections? I would really appreciate some insight into this. I've read several research articles on this, but I would love to hear from you ladies who have performed any of these procedures and found relief.

It sucks not being able to enjoy sex and having to "plan" intimate times with my husband instead of being spontaneous. But am lucky that my husband is extremely supportive, optimistic, and empathetic. It even sucks more that vulvodynia is a very unknown condition to women (maybe because we do not discuss it openly with each other cause we feel ashamed to be suffering in bed when sex is supposed to be something pleasurable and enjoyable).

I will be awaiting response and feedback from anyone who has more info on laser and botox injections whether you have tried them, heard of them, or know of someone who has tried them.


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Re: Laser or Botox Injections for treating vulvodynia

Post  x_chelss@live.com on Sun Nov 26, 2017 8:41 pm

Hey, I’m sorry you’re going through this

I had vulvodynia since I was 15, and in 2015 I had surgery. I suffered for 2 and a half years wiith different treatments 3 of them being what you are wanting answers for.

I was on amitripyline for around 6 months, I upped my dosage gradually weekly but I had to come off it quite suddenly because it made me so unhinged.

I also had the laser treatment but that didn’t work for me, they also tried to laser off 2 of my glands either side of my urethra to try and help with the pain but it didn’t help.

Finally... the Botox was by far the most beneficial treatment I had a side from the surgery. I had Botox injected into my pelvic floor muscle to stop my vagina from “scrunching up” every time I tried to enter something inside me.
I had Botox in 2015, and haven’t had it since. I now have no issues with my muscle anymore now.

I hope you find something that helps for you. Xx


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Re: Laser or Botox Injections for treating vulvodynia

Post  mhhh on Tue Nov 28, 2017 5:48 pm

Hello! Thank you for your feedback Smile
Was your pain due to your vaginal muscles just crunching up and contracting upon penetration or was it pain in the skin at the vaginal opening as a result of touch and friction? May I ask you what kind of laser was used (is it low level laser or something else). Would appreciate it if you can specify the laser type. Also, how many sessions did you have of laser treatment and to whoch areas specifically. At the vaginal entrance? Was it to treat your muscle spasm or your vulva burning pain upon touch?? Where there any side effects from your laser therapy such as scarring..or none?
Can you also let me know about the botox injections? Amount..how many rounds did you need...?
Sharing your experience would be really helpful Smile


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Re: Laser or Botox Injections for treating vulvodynia

Post  sarisbaris on Wed Dec 06, 2017 6:04 am

I battled V for 15 years and I consider myself cured now. During that time I saw 15/20 western docs and 15+ alternative docs. It was ridiculous. I found a few things that helped and learned how to manage the pain but I never considered myself cured until Anthony William's protocols. Basically, according to him 90% of vaginal burning cases are caused by an unknown/currently undetectable strain of the strep. The other 10% are caused by unknown/currently undetectable strain of the shingles. I had both. FML. His strep protocol cured the internal/outer burning. Then his shingles protocol cured a rash I would sometimes get. Go to my blog. Scroll down to the necessary reading section. Listen to all those shows listed. For you, I would start with the strep, epstein and UTI shows. His stuff works. It worked for me.

My vagina is back to her normal self. I can have wild sex and I'm totally fine, during and after. Even with spontaneous sex Wink It might take some time to heal unless you opt to do the raw veggie cleanse. He mentions this cleanse in his first book titled Medical Medium. My pain was like a chemical burn. I basically just made sex impossible or at least not very enjoyable, even when it didn't flair. Since I saw so many doctors until I found Anthony William and have been with my husband the whole time, I found some tricks. We've been together for 20 years. Start with a foot massage. Have him rub your feet. Find a spot that hurts, in a good way. Like a someone massaging a knot out of your back. Rub this spot out. Your whole body is connected. (I went acupuncturists for years) If you want to get real sexual healing, have him hold down on a painful (yet good) spot while he makes you orgasm. You can actually feel the energy go to this spot as well your lady parts. It's real sexual healing. No joke.

Also, my acupuncturist recommended Shuangliao Houfeng San which I list on my blog. It's a powder and it will cool your vagina down. But I'm not sure what type of pain you have so I'm not sure if it will help. It was a godsend for us and saved our sex life. I was instructed to have some coconut oil on my finger, sprinkle the powder on my finger and rub it inside the vagina walls. Its like a cool shower right up your vagina, it was such a relief. I was planning to do this one day and my husband suggested that he put the powder on himself. OMG. We had sex this way for more than 10 years. For me, it really helped the medicine reach deep inside and cooled down my whole vagina. Can I get an amen? But I recommend first trying a little on yourself before you ask your partner to get involved. It smells like holy hell but I doubt your partner will mind since he will be having sex Wink

I would highly recommend curing your body rather than using botox. I'm part of an online community that follow Anthony William and some of the woman had horrible reactions to botox and now are trying to cure the side effects. I'm sure these women were just using it on their face though.

The virus that we have feeds on the hormones during pregnancy. So before you start building a family, I highly suggest fixing this first. You can truly fix it. Mine wasn't too bad for a few years, sex wasn't the best but I still got pregnant. At 4 months pregnant the burning began. It just jumped to levels 8/9 of burning. It was a nightmare. My doctor tried to give me prozac (which was later discovered to cause birth defects) because she was afraid that I was going to commit suicide. Vulvodynia sufferers have a high rate of suicide Sad This is when I was led to some of the things Anthony William talks about which alleviated the pain. Now with his information, you have a straight forward plan to fix this.

You are not alone. Let me know if you have any questions.



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