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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


Rx is draining me HELP

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Rx is draining me HELP

Post  girlcraft on Sat Jun 04, 2016 11:16 pm

I was officially diagnosed with Vulvodynia about a year and a half ago. Prior to that I had gone to the GYNO 7 separate times complaining of pain with sex, peeing, itching and every time they missed prescribed me with yeast infection antibiotics. I even went as far as taking boric acid to wipe out the "yeast infection" it was then I turned to a specialities who informed me of vuvlodynia. So not only did I have vuvlodynia but I was also making my condition worse by wiping out my ph balance and killed all the the good flora in my vagina.

Since then I have taken Prozac in the morning and Nortriptyline at night. Both of these antidepressants have been problematic for me. The dosages kept increasing because nothing was helping and once increased the side effects were getting terrible and causing cramping, stomach spasms, passing out, constipated, insomnia, you name it I've had it. I've also tried Wellbutrin in place of Prozac bc on paper it seems better but so far it hasn't done me any good. Also switching dosages and pills so often has thrown my emotions and body out of whack.

I've also tried taking cranberry supplements, probiotic supplements, a mixture of NAC, Vitamin C and Spurinal. Even went as far are putting hurts bee's chapstick on the vagina, which burned like hell, bc another forum suggested people have found relief from it. I've tried stretching my pelvic floor but not for a long period of time, and wasn't sure if the stretches I was doing were effective. I plan to try to continue the stretching and ingesting coconut oil, as I read that was a great cure for people.

PLEASE PLEASE help me anyone! I am 21 years old and miss being sexually active. I've tried so hard to be positive and look for hope but I am at my wits currently Neutral Embarassed No No

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Re: Rx is draining me HELP

Post  emalita on Sat Jun 04, 2016 11:57 pm

Can you provide some more information on your pain (below are some questions that may help)? Some people assume vulvodynia is only caused by overactive nerves or pelvic floor dysfunction, but after finally seeing about 11 different doctors I was diagnosed with inflammatory vaginitis. My pain was caused by too many unnecessary antibiotics, yeast creams, and OTC treatments. So, my flora is shot.

What does your pain feel like (e.g. stabbing, acid burn, prickling, itching, etc.)?
Where is your pain located (e.g. inner labia, vaginal opening, internal, etc.)?
Are there any physical changes to your vulvar appearance (e.g. whitening, scarring, etc.)?
Is the pain worse at any particular time (e.g. only after sex, going to the bathroom, after showering, during your period, etc.)?
Do you have excessive discharge, or discharge that makes your pain worse?
Do you know what the onset of your pain was (e.g. bad infection, first time having sex, etc.)?

Have you found any relief from your prescriptions? If so, can you ask that they be compounded into a cream that you apply directly to your vulva to reduce the side effects? I know gabapentin is commonly compounded in a cream for women with vulvodynia, but I'm not sure about Nortriptyline. I know my pain isn't nerve related; so I can't comment on the effectiveness of these creams even though my doctor did shove them at me.

Are you using only hypoallergenic products to reduce any possible chemical sensitivities or anything that may be keeping your irritation going? See the below link for some good suggestions:

http://vulvodyniasupport.forumotion.net/t2299-good-place-to-start-hypoallergenic-products-temporary-lifestyle-changes#13808

If you are concerned about possible UTIs, I would suggest trying a supplement called D-Mannose. However, my specialist says that it is the discharge from unhealthy flora that causes the vulvar and urethral burning in a lot of women. I know that is true for me because if I have a tampon in my symptoms reduce (the tampon stops the discharge from touching the vulva).

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Re: Rx is draining me HELP

Post  girlcraft on Sun Jun 05, 2016 12:14 am

Thanks for the reply emalita!

I have a dull burning sensation on my labia and vagina always and a stabbing raw burning when inserting a tampon or during intercourse. Also I can't handle any stimulation to the clit (vibrators etc) for long, they make it very irritated as well. It's uncomfortable definitely but I am able to sit in a regular chair with no added issues. It is extremely sensitive when I wipe after going to the bathroom, the only differences I've noticed is red irrigation on the outside as well as an increase of discharge and smegma. The onset of the pain was sudden, I was fairly sexually active at the time, as I had mentioned I thought it was a yeast infection that wouldn't go away, it started off feeling like a yeast infection, was treated severely for that and after that was ruled out the doctor gave me antibiotics because it looked like I had an increased amount of Strep B, after the antibiotics I felt okay for about 3 months, the pain came back, I was given the antibiotics again, pain came back 1 month later, was given it a final 3rd time and it did nothing. After that I then went to the specialist who diagnosed me vulvodynia.




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Re: Rx is draining me HELP

Post  girlcraft on Sun Jun 05, 2016 12:17 am

Also I do not use any soaps or lotions, always use water based lube if I'm attempting to have intercourse, the only lube I found to be helpful was from the UK brand yesyesyes. Their company claims to make products for vulvar pain

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Re: Rx is draining me HELP

Post  emalita on Sun Jun 05, 2016 1:02 am

You definitely sound like your pain may be stemming from an issue with your flora due to all of the antibiotics you were on.

Do you monitor your pH at home? I do this maybe once a week to keep an eye on how I'm doing (not saying that if your pH is normal then you're fine, but it's a good baseline). I use a UK product called EcoCare Comfort Vaginal pH-Test Cotton Swabs, but there are cheaper pH strips out there. I just find this one super easy to use.

My specialist is in Arizona, and he does a test to determine flora health. I had a very high count of white blood cells and low lactobacillus (no other doctor told me this). I really recommend finding a vulvar specialist who will look deeper into your issue instead of just throwing nerve pain meds at you.

For some relief, you could try rinsing (not spraying) your vestibule with Gordon’s Boro-Packs after every urination (the brand Domeboro is basically the same thing). It comes in a powder that you mix with water in a squirt bottle, and I think one packet should be good for the whole day. My current specialist and another OBGYN of mine have recommended it. I've spoken to a handful of women, and some women on here, that say it is a miracle worker.

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Re: Rx is draining me HELP

Post  fairlight10 on Sun Jun 05, 2016 9:13 am

Hi girlcraft I have been reading some of your posts. I have been diagnosed with vulva vestibulities 4years ago. I was prescribed amitriptyline originally but this did not agree with me. I was put on nortriptyline 20mgs which was increased to 30mgs last september to help relieve migraine. I take it at night like you. How many mgs do you take? I don't know why you are on prozac as well and taking it in the day. No wonder you are suffering with harsh side effects. So many of us with vulvodynia start off thinking it is thrush or a uti. So we throw everything at it and make it worse. I would go back to your gp they can change your medication. Also, the stress of having this condition can aggravate it. Try to keep calm. In the past this has helped reduce any pain or irritation.

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RR: RX is draining me HELP

Post  Antaea on Sun Jun 05, 2016 1:10 pm

Hi! I am very sad about what you're going through - and I agree with Emalita concerning lotions and creams and more. I would not use anything more than clear water and a natural oil, preferably almond- or coconut-oil. After some weeks you at try some lactic acid "vagitorier" (sorry, i don't have the English expression). Maybe you have to avoid certain foods too. I cannot dring lime-or orange-juice any longer. Even not diluted with a lot of water.
Some people get relief of frozen soaked black tea bags. Before I took Neurontin, I always had some in the fridge. I used four, let them soak in little water for half a minute and froze them. Afterwords I placed them directly on the burning area. It eased the pain immediately. At night I also used Xylocain (5% Lidocain) topical cream. This does not take nerve-pain, it only numbs the skin. It burns after applying to the skin. But severak women feel, it makes their situation worse. I felt the same after using it several times during one night.
And try Gabapentin - the brand name is Neurontin. Most people have mild and only temporal side-effects in spite of what you may read on the Net. After only three weeks I have none any longer. Could even take a little beer yesterday without feeling drunk today. Already after one week on the lowest dose the pain eased. At the moment I only have very mild pain, more feeling uncomfortable than real pain.... But when the intervall is longer than usual, the pain increases again. A local Gabapentin compound may help too. But at first your skin has to calm down and the bacterial flora has to renew itself. That may take several weeks.
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Re: Rx is draining me HELP

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