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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 …

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: 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 …

Comments: 3

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 …

Comments: 0

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


Help with vulvodynia

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Help with vulvodynia

Post  why57 on Fri Jul 01, 2016 2:25 am

I appreciate one of the Forum women regarding vulvodynia.
The doctor says that I need to have that surgery and that should fix it I don't think I want to do that. It seems like it's very painful long recovery and not a definite of it lasting forever. I've been going to bioidentical doctors the first one after a year said she can't help me and this was after trying creams hormones pills shots to testerone pellets nothing seemed to improve it. I even tried physical therapy I have no idea what triggers it
No entry in vagina
Any other time I have no symptoms




why57

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Re: Help with vulvodynia

Post  emalita on Fri Jul 01, 2016 3:00 am

Hi why57,

Let me make sure I understand.

You have pain with any penetration, not just sex, and you aren't aware of a trigger. The only treatments you've tried so far are hormones and physical therapy.

Is this correct? If so, I would HIGHLY recommend trying other treatments prior to having surgery. There are many pills and creams like gabapentin, amitriptyline, and lyrica that women have success with (there are many more than just these three).

Have you completely ruled out possible sensitivities (toilet paper, shampoo/conditioner, soap, body wash, lubricant, condoms, tampons/pads, feminine wipes, feminine sprays, etc.)? This can be a LOT of work and takes quite a bit of time and investigative work, but it is absolutely worth the effort.

Is the doctor you're seeing a vulvovaginal specialist? Do they treat vulvodynia a lot? I've found that you really have to dig to find a doctor who knows enough about this condition to even have the right, in my opinion, to suggest the possibility of surgery. I would highly recommend reading through the book "The V Book". It isn't specific to vulvodynia, but it covers a huge spectrum of vulvovaginal complaints.

I hope you find relief soon sunny

emalita

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Re: Help with vulvodynia

Post  why57 on Fri Jul 01, 2016 3:25 am

Wow you are simply amazing I can't thank you enough for all this information the latest doctor I'm going to says that he is a specialist in this area and yes I ruled out the sensitivity to toilet paper wipes and so on I will get the book The V book.
They had me on the hormones in creams and pills I don't even remember there were so many over the past year-and-a-half
.
Like I said I really don't want surgery I just want to get back to normal I will look into the three medication do you mentioned if I wanted to google other medications similar to this how would I do so?
I did read someone's post about gabapentin that it make you gain weight (I don't want that) is it true?
Forgive my grammar I am talking into the phone and it types so therefore there's not much punctuation.

I've been searching all over the Internet trying to find some answers and I came across this forum and I wish to thank you for your information and advice and if you think of anything else please please let me know you have a wonderful 4th of July be safe






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Re: Help with vulvodynia

Post  emalita on Fri Jul 01, 2016 3:51 am

Yep, I've heard gabapentin can cause weight gain, but you can get it in a compounded cream that's applied directly to the vulva to help reduce side effects.

I haven't used many of the typical prescriptions for vulvodynia because I don't have a nerve issue, but you can google something like "prescriptions for vulvodynia". That would be a good place to start, or you could look for a pain management specialist who has experience with vulvodynia. They should have a lot of options.

I'm sorry to hear that the pelvic floor physical therapy didn't help you. I've read a lot of stories from women who've said it starts them down the right path to some relief.

Keep us updated on how you're doing and what treatments you try Smile

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Re: Help with vulvodynia

Post  why57 on Fri Jul 01, 2016 4:22 am

Well I've already started reading part of the book they offer online like 30 pages like a preview to the book but like I said the book is coming on Sunday so I look forward to that and I will Google the prescriptions for vulvodynia
Have a good night thank you so much again

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Re: Help with vulvodynia

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