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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

Comments: 0

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 …

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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

The pain CAN get better - What's worked for me

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The pain CAN get better - What's worked for me

Post  emalita on Sun Apr 22, 2018 5:32 pm

It’s been a while since I’ve posted here, but I wanted to come back and give a little hope to those who are suffering.

I still have what I assume to be nerve pain on my left lower vulva area, urethra/vaginal muscle discomfort, and skin irritation during menstrual periods. However, trust me, it sounds far worse than it actually is…especially with what it is now compared to where I was even a year ago.

Although I am not 100% healed, I am able to have pleasurable sex pretty regularly, go for long walks, sit up in chairs (the position is very important some days), and lie in bed in whatever position I want most nights. Sex can be uncomfortable sometimes, but usually that is related to lubrication instead of vulva pain.

Below are the insights I can offer into what I’ve learned recently and what I’m doing to further promote my healing. Obviously I am not a doctor, and I am just sharing my experience. Please always do what is best for you!

1. Stop using countless products on your sensitive lady parts!

I’ve already said this a dozen times on this site, but I will say it again for good measure…STOP applying/inserting lotions, creams, gels, boric acid, etc. etc. etc. to your vulva/vagina!! Trust me, I KNOW how desperate we all are for a quick fix, and we keep thinking, with the 6th cream or the 3rd round of antibiotics we will finally be cured... I’m sorry, but it’s more likely that you’re only making things worse and prolonging your healing process (read my long history in my signature link). Please be kind to your body.

2. Could your pain be from your bladder/urethra instead of your vulva/vagina?? Don't just skip by this one!

EVERYTHING is so crammed together in the genital area for women, it is very difficult to tell where the pain is coming from.

I naturally assumed that if I ever had bladder or urethra pain it would be obvious, like a UTI, and I would have burning with urination. That was NOT the case for me. It took me several years to make a connection to consuming acids like oranges and other things like my vitamin supplement that contained B6 (common bladder irritant) or smoothies with stimulants like matcha. To this day, bladder irritants can still make it feel like the pain is at my inner labia when I urinate (weird, huh?).

I finally made the connection to oranges when I hadn’t had any in a while and one day decided to eat a few. I didn’t have burning pee like with a UTI, but I kept feeling like I needed to get something out of my body (urgency). The pain was almost prickly and burning, which is a common description of bladder pain (my history in my signature link even references the feeling of being poked with a needle!). Depending on how bad the flare-up was, I wouldn’t start feeling relief for about 3 days, and it wouldn’t be fully gone for probably at least a week. I noticed that for me, the offending foods could cause pain as quickly as 20 minutes or could take overnight to show itself. So, identifying food irritants (for any symptom of the body) can be really tricky if you don’t know what you’re looking for.

I’m NOT saying I have interstitial cystitis. I believe I have food irritations (I have many for the rest of my body too), which were brought on by many years of poor bladder health (eating massive amounts of irritating foods, multiple rounds of antibiotics, holding my urine too long, UTIs, etc.). I have read that it can take as long as 3-6 months for a bladder to heal itself once all irritants are removed. So I am on that journey now. If you want a good starting point for common food irritations, please see the below link, but LISTEN TO YOUR BODY. Not all of these will be irritations for you or be good for you.


3. STOP STRAINING! Don't skip over this one either!!

I have read many times before that straining is bad for your “already tight pelvic floor muscles” and for bowel movements, but of course I said to myself, “that’s not what my problem is!” Well…yes it is, at least partially. I was straining to pee because of the urgency feeling brought on by food irritants and, silly enough, straining itself. I was straining to release discharge because again, I was blaming my vagina for all my problems. I thought the discharge sitting inside my vagina was to blame for my pain. I was also straining to have bowel movements because I couldn’t be bothered to sit on the toilet for too long.

I finally made the connection when I strained so much that I felt almost a tearing feeling, a sharp pain in my vestibule. I was going in the tub for a bath right after, and as I sank into my bath water, my vestibule actually stung! So I had torn either my urethra or some sort of vaginal muscle when straining. I had not noticed any blood. It took a good week for the pain to calm down. I still didn’t have burning with urination, and it didn’t feel completely like a normal pulled muscle. So…I still don’t know what I did exactly, but it woke me up to what I was doing.

I have found that even the smallest amount of straining (any type of it) sends me into a flare-up where my vestibule feels very uncomfortable (then takes 3+ days to heal). I am in a minor flare-up now that I still don’t quite understand how I did it since I’ve been so careful not to strain, but yesterday I did strain ever so slightly for a bowel movement. I assume it must’ve been that.

Reducing the stress on my urethra/bladder/vaginal muscles from straining and food irritants has made a huge difference in my ability to have pain free sex.

4. Brazilian waxes

Now, I know what you must be thinking, “That sounds painful! How wouldn’t that make my pain worse?!” Well, a friend of mine who also suffers from vulvodynia recommended waxing to me after I told her that trimming my pubic hair was causing little cuts in my skin from the friction of the blunt hair to my overly delicate skin. I tried leaving my hair au naturel, but that made things even more painful. I found that my hair’s natural movement (even the minor movements) was aggravating my nerve pain. Think of brushing your hair in the wrong direction…even though that isn’t painful, you can feel it tug uncomfortably. Well, combine that with overly sensitive nerves, and you have pain.

I won’t lie, waxing was horrible the first time, and probably the second and third times as well, but it NEVER aggravated my vulvodynia pain…EVER. I’ve been getting waxed for probably about a year now (every 4 weeks), and I could always tell when I needed a wax because I could feel that weird numbing nerve pain coming on when my hair got to a certain length before the next wax. Now, I’m finally starting to not feel that pain as often, and I can actually touch that area of skin without horrible flare-ups that last for days.

I truly believe that FOR ME waxing was one of the best changes I made to promote healing and my ability to move around since it reduced the constant aggravation to those sensitive nerves...giving them a chance to heal.

5. Desensitize the area

You should NOT do this until you think that you are ready because it could make things worse for you. It may be best for you to see a pelvic floor physical therapist to work through this process with you.

I met an extremely patient, understanding, kind, and loving man that I wanted to be intimate with. With honest communication, I believe that our intimate touch and sex has accelerated my healing through desensitization. There are still some sensitive areas that he knows to avoid touching, but the indirect pressure from sex on those areas is slowly making them less unhappy. I believe with more time and patience, my nerve pain will be a thing of the past.

If you want to explore this at home or without sex, I found the below article helpful, even though I didn’t use the techniques myself.



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Re: The pain CAN get better - What's worked for me

Post  SinclairSassy on Sat Apr 28, 2018 8:23 pm

One thing that has helped me is filling a pitcher full of water and letting it stand overnight so that the chlorine evaporates. It has helped a lot for urethra pain.

And cheaper than buying bottled water.


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