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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


I think I've developed vulvodynia?? Please help!

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I think I've developed vulvodynia?? Please help!

Post  Necromeowncer on Mon Oct 23, 2017 9:10 pm

I have been suffering for months and no doctor has been able to help me. So I've come here to share my story and hope one of you lovely ladies will be able to help me. I've grown very desperate to get rid of this pain.

It all started in march when I had developed a nasty abscess on my clitoris. It was very, very small, never grew, and started off painless. Went to the regular doctor to get it examined. She did not want to try to pop or irritate it because of the location it was in, so she prescribed something that I have unfortunately forgotten the name of the antibiotics because this was months ago... She was very sure it would work to shrink it. I had gone to her three times for a refill, desperate to get rid of this nasty abscess. Nothing had changed, except for the fact that I had gotten a yeast infection from the pills.

Next, I had visited a VERY rude gynecologist, who looked at me once, immediately ruled out that I had an STD and then sent me to get my blood tested for multiple STDs and also gave me medication meant for HPV. WITHOUT EVEN GETTING THE LAB RESULTS FIRST OR ASKING ME ABOUT MY SYMPTOMS. Results came back clean. Needless to say, she caused a lot of paranoia. Did not go back to that crap doctor.

It was about may or June now, and I visited yet another gynecologist. The abscess remained, and I was still having yeast problems. So we started off with tests. I had gotten tested for STDs (once again), got a Pap smear, a vaginal ultrasound, vitamin levels tested. The only thing abnormal about me was that my vitamin levels were low. After the tests were done, the treatment began.

I had taken countless rounds of terazol, with no improvement. I started getting desperate. I cut soda completely out of my diet, while cutting sweet foods out to an extent, same with bread. I began to take vitamin D tablets, probiotics, garlic supplements. I did my best to avoid tight clothing and keeping the area dry, I had gone off of birth control as I believed it was only making the pain worse. My doctor has told me it's the yeast causing all the problems and nothing else. So I did everything I could to keep it away. The pain remained despite all my efforts.

August was when the abscess had finally gone, for it had not popped by itself. The doctor squeezed the absolute hell out of it until it had given out, doing what I was afraid to do. Let me remind you this abscess was on my clitoris. The pain was probably the most horrible thing I've felt in my whole life. I thought after the abscess had gone my pain would too, but it had not.

I started my final treatment. 3 days of terazol, two weeks of estrogen cream, and 600 mg boric acid, 3 times a week for 3 weeks. While I was on this treatment I continued to take probiotics and supplements, stay totally hydrated, and cut out bread and sugar to a great extent. I finished everything, yet the raw burning sensation still remains. The only time I felt the smallest bit of relief was when I was using the estrogen cream.

I have become desperate and very depressed. I am not sure where to look for a doctor that can help me. Some days the pain is worse than others. Jeans feel horrible to wear, and sitting is absolute hell. I cannot get comfortable. Sometimes I feel a burning sensation when I pee and have to frequently urinate and occasionally I will have pelvic pain. A nurse thought I had a UTI but nothing came up on the test.

I am wondering if from the over treatment of yeast, and the irritation/pain that was put on my clitoris caused nerve damage and this all developed into vulvodynia? I'm not sure what to do now or how to get rid of the pain I feel.

Necromeowncer

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Re: I think I've developed vulvodynia?? Please help!

Post  survivor on Wed Nov 01, 2017 4:17 am

Hey - I never had the abscess but I dealt with much of the rest for about ten years before everything finally went away. I am now in 98% remission with the smallest of breakthrough pain.

My recommendation while you are looking for the underlying cause and cure would be to immediately try a large dose of gabapentin and take it 4x a day as well as an antidepressant (for both the body and mind).

See a naturopathic doctor if you can afford it. Great to get a different perspective as well.

The basics: Stay hydrated with a good diet (heavy on veggies, no dairy), sleep underwear free, only wear white cotton underwear during the day. Make sure soap and laundry detergent are gentle. Find small forms of relief to say sane - masturbating & extreme temperatures helped me. Get some pain killers. Try prescription lidocaine cream, etc.

Good luck. Stay strong, I know it's a true hell - but I promise you come out the other side a stronger, more empathetic person.

survivor

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Re: I think I've developed vulvodynia?? Please help!

Post  Mintaherb on Thu Nov 02, 2017 2:20 am

Hi, I'm so sorry to hear about what you're going through! I've had two clitoral abscesses in the last seven years and the pain is awful. Like you, I was given antibiotics which gave me thrush/yeast. In my experience, taking the anti-thrush pill (Fluconazole in the UK) made my vulvar skin red and sore. So it's possible that your skin is still reacting to this, especially if you took several rounds of anti-yeast treatment. It takes time for your body to heal, especially such a sensitive area as the clitoris. I wouldn't necessarily rush into taking powerful drugs for nerve pain, as the drugs have side effects and can cause horrible withdrawal symptoms when you stop taking them too. I had an especially 'interesting' withdrawal symptom from taking 10mg per day of nortriptylene - I actually went temporarily numb 'down there'. I guess at least that solved the vulvadynia problem! Maybe give your body two or three months to recover from what it's been through first, and then see how you feel. I know that waiting and doing nothing is really hard, but the body works on its own timetable and won't hurry up just because we want it to.

Also, taking the right probiotic to help your gut bacteria/microbiome recover after using antibiotics will hopefully also help your vaginal microbiome, as this is affected by the gut microbiome. A naturopath should be able to advise about this.

Sounds like you're doing all the right things with stopping the contraceptive pill etc. I also wonder if you might be estrogen deficient after stopping the pill , as you say that using estrogen cream helped your symptoms. Have your periods come back properly yet/are you ovulating again and therefore making enough of your own estrogen, now that you're no longer getting synthetic estrogen from the pill? Vulvar tissue needs estrogen, so perhaps there's more than one issue going on here (possible clitoral nerve pain from the abscess/over-use of anti-thrush treatment/disrupted gut microbiome from antibiotics, which in turn has affected vaginal microbiome/estrogen deficiency if ovulation hasn't resumed after stopping birth control). Good luck and don't give up hope!

Mintaherb

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Re: I think I've developed vulvodynia?? Please help!

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