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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 …

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


Looking for support and advice

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Looking for support and advice

Post  bridgetae on Tue Jan 03, 2017 10:12 am

Hi. I've been diagnosed for a couple years but have had the symptoms for as long as I can remember. Took me years to find a doctor that didn't simply brush my symptoms aside. But even now, I don't have consistent access to a doctor because of moving in between states and especially to a state where there is NOT good healthcare available. I was diagnosed with vestibulitis. After reading through some people's posts, I get the idea that this is a vague diagnosis with very little information. Basically, I have had severe pain at the opening of my vagina associated with biking, inserting tampons, sexual intercourse and a variety of other activities. But the skin all around my labia and perineum easily become inflamed and irritated in general but not nearly as painful as the opening of my vagina.

So I've been through a handful of different treatments including steroid creams, physical therapy, steroid shots in my spine, product and clothing changes etc. The steroid creams had some positive effect. To be honest, I was so discouraged by the lack of progress, I probably quit physical therapy earlier than I should have. Switching to more estrogen-based birth controls helped too. The ones I previously was on tended to dry out my natural lubricants. The only other thing that has been really helpful is a lidocaine-petroleum compound applied on a regular basis. But now I'm stagnant. The pain isn't getting better anymore and I'm depressed. I think i have multiple other conditions but I can't find a doctor who will take me seriously or even address my concerns. It is especially hard because I still do not have a stable living situation so I can hardly see the same doctor twice. What kinds of things can I be doing on my own to diagnose myself and to make things better?

bridgetae

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Re: Looking for support and advice

Post  PainBlogger on Thu Jan 05, 2017 1:16 pm

Have you tried any dietary changes (I'm thinking mainly in terms of making your urine less acidic or potentially irritating to the skin)? Some people find a calcium citrate supplement helps reduce vulval pain.

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Re: Looking for support and advice

Post  bridgetae on Thu Jan 05, 2017 6:17 pm

I have not tried that, but I definitely will now. Thank you.

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Need help as well

Post  jharris on Sun Jan 15, 2017 2:54 pm

Hi there:

I am newly diagnosed as well. I need help and advise. What I tried was Estrace cream and, it helped sometimes and other times not. I was given a steroid cream and that was an irritant and also on Lidocane or something like that while was irritating as well. Please update me anyone on what you did to alleviate symptoms. I am in constant pain and am not sleeping.

jharris

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Re: Looking for support and advice

Post  fairlight10 on Sun Jan 15, 2017 6:18 pm

Hi. I have had vulvar vestibulitis since May 2012. I was prescribed Nortriptyline 20mgs and it has helped a great deal. It is not a cure but it can eventually calm the pain you are having. It is a tricyclic antidepressant that has been used by many sufferers on this site. If this one dose not help there are many others for you to try. Read the posts on this site. Start at the beginning, they are a wealth of information. Also consider what you eat, drink and any other medications could cause irritation when urinating. I would also recommend Yes water based lubricant. Look at your laundry detergent/fabric softener. These can also cause problems in this area. Good luck.

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what about surgery?

Post  infinitelywondering on Sat Jan 21, 2017 11:37 pm

have you considered a vestibulectomy?

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Avoid propylene glycol

Post  Debbie627 on Wed Feb 08, 2017 4:39 am

For women with vulvodynia or vestibulitis, doctors often prescribe meds or creams containing propylene glycol. This can cause severe burning, then you apply more to stop the burn, and the pain spirals out of control. Have you ever noticed how you feel best in the morning and then spiral downhill throughout the day? That's because you are burning yourself with the steroid creams and other meds. Give it a test....you will know within 24 hours. Stop all creams and ointments for one day and see if you feel better. Would love to hear your feedback. BTW... your KY jelly contains this ingredient as well, which in my case started my journey into this condition. Feel better sisters!

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Re: Looking for support and advice

Post  michelle_b on Sat Feb 25, 2017 9:14 pm

Hi, I've been struggling with vestibulitis for about 5 years now. I've tried numerous creams, numbing ointments and I've seen so many doctors I loose count. I have finally found a couple of specialists and both are recommending a vestibulectomy. My advice after everything I've been thru is to pay attention to what is in the creams you are trying. I trusted my doctors completely in the beginning and many of the ointments burned and hurt worse than the natural pain. Others didn't help at all. I found that switching to Dove hyper allergenic bar bath soap, hyper allergenic laundry detergent, and avoiding Always pads helped significantly for the day to day pain. I use Kotex pads during the day and natural cotton pads at night when I'm home. I also found that pure vitamin E oil was very calming for the skin and I use it when I have bad days. I don't know if there is any negative to using the vitamin E oil so I use it only when I need it but I figure it has to be better for me than the chemicals the docs are prescribing. I also have some symptoms of pudendal neuralgia. One of the doctors I saw prescribed a Valium suppository that worked incredibly well for pain from pelvic floor muscle tension. This didn't help with the vestibule burning pain though. For the aching pelvic floor pain I have I found that using foam rollers on my inner thighs helps a lot.

I found the doctors all have the same go to trial and error mentality for treatment. It's all very vague and they just throw conservative darts at the wall until they find something that works or they tell you there is nothing else they can do for you. My advice now looking back is not to wait to long, challenge your doctors and if what they are saying doesn't seem right move on. I tried too many conservative treatments for too long and while not detrimental to my condition it took a toll on me physocologly and emotionally. The pain is exhausting and many doctors don't seem to get it. Also, for a while I also switched to cotton underwear and on really bad days opted for commando. I didn't wear jeans or anything tight for a number of years either. I hope this is helpful.

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Re: Looking for support and advice

Post  Debbie627 on Sat Feb 25, 2017 10:52 pm

My story is very similar to yours and the creams and ointments and KY Jelly during sex were the culprits not the cures. I had the vestibulectomy ...it didn't help me. Of course afterwards they told me to use estrogen cream to help with healing but that contained harmful ingredients. Once I stopped using that I healed quickly. The answer... keep it pure... no creams, oils... or gels of any kind.

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Re: Looking for support and advice

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