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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

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: 2

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

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

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: 6


New here, looking for some support.

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New here, looking for some support.

Post  PhoenixFire on Fri Nov 18, 2016 1:34 am

Hi everyone. Let me start by saying that reading this forum today has made me feel so much less alone. My overall story is really long, so I'll try to keep it as short as I can. It all started when I was 16 and got my first uti. I believed I was over treated for it, and then started self treating for yeast when I thought that was my problem afterwards. Then started the cycle of vulva redness and burning pain. No doctor I saw could figure out what was wrong with me, and I tried so many things. I don't even remember cultures ever showing anything. When I was 18 or so I saw a gyno who told me to try changing my diet for a while, cutting out sugar, gluten, etc. I did this for about a year, and I can't remember if it help much, but it might have. I was also pretty depressed and isolated at this point. When I was 19 I met my current boyfriend, and at that point my vulva was actually pretty normal, I don't know if it was the diet, or just time, but I hardly had any pain. He could touch me, and we would do all sorts of foreplay just fine. After 6 months we decided to have sex (we were both virgins) and it was wonderful. I only had minimal pain at the beginning, but I think that's normal for your first time. I did end up with a uti, and yeast infection, but those cleared easily. Then those both happened again the next time we had sex. So I decided that condoms might be the culprit, and I got the implant in my arm. I had some infections occasionally while on, but I could clear them with boric acid. I do remember at one point I tried using vitamin c vaginally (I read about it online as a bv cure) and that caused awful burning that lasted for months, but eventually did pass. After three years I did get the implant removed, and was briefly put on the pill. I had a bad reaction to it, so discontinued after less than two months. So now I'm 23, and basically at my wits end. I've had vulva burning, stinging, soreness, itching, and everything bad for about 3 months now. I did have a uti around the beginning of it, but the pain started before that. I've been tested for yeast, bv, stds, you name it. Sometimes it would come back with a little yeast or some clue cells, but the treatments never helped. I also know what it feels like when I have an infection, and it's nothing like this. I haven't been able to have sex because of the pain, which is unprovoked but is almost all the time. I've been seeing a natropath, and she did test me for food allergies while came back that I'm very sensitive to dairy. I've cut out dairy for almost a month now, but vulva pain is very much still present. She may want to also test my hormones, but all these tests are getting expensive. I had normal cycles before bc, but now I only get a period every month and a half or so. I also overall don't feel that great, I'm tired most of the time, I get lower back pain that sometimes feels like a burning pain, headaches, nausea, I'm basically a mess. But I would deal with all of this if I didn't have this awful burning pain, it honestly makes me so depressed, I'm lucky that my boyfriend is supportive. Maybe I just needed to vent, but advise would be much appreciated.

PhoenixFire

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Re: New here, looking for some support.

Post  PhoenixFire on Fri Nov 18, 2016 1:37 am

I also wanted to note that last year I had an amazing year. My vulva and vagina felt almost totally normal, I was having sex with my boyfriend once or twice a week, and it would have been more often if possible. This problem only started after coming OFF of birth control, so I wonder if it could be hormone related after all. It's so frustrating to not have a clear idea of how to get better

PhoenixFire

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Re: New here, looking for some support.

Post  PhoenixFire on Fri Nov 18, 2016 1:43 am

One last thing! And this really is the last thing. Has anyone ever had a bad reaction to boric acid suppositories? I used one today because they've worked so well for me in the past without side effects, but not only did it make my pain worse (I'm sure it's because this isn't an infection, and because I've been imflamed for so long) but I've also been feeling really tired, spacey, and just off. I feel like it might be a reaction, and it's honestly a little scary

PhoenixFire

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Re: New here, looking for some support.

Post  PainBlogger on Sun Nov 20, 2016 10:35 pm

Sorry that you're feeling bad with this horrible condition.

My problems also started with a UTI (and concurrent thrush). You can read here what I've tried: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement

I need to update that thread again as I'm still doing well. Duloxetine has been a really big help to me. My average daily pain is now 1/10 and I'm pain-free much of the time. But it took me a while of trying unsuccessful treatments before I found what worked.

Has any doctor mentioned fibromyalgia to you? If you're getting back pain, headaches and tiredness as well as vulval pain then maybe you have a more widespread chronic pain condition. Would you be able to see a pain specialist?

I hope you find something or combination of things that works for you soon.

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Re: New here, looking for some support.

Post  PhoenixFire on Fri Nov 25, 2016 4:51 am

Thank you for the reply! I've actually been looking into fibromyalgia, since I've been getting lower and mid back pain that is like a radiating burning, pain in my pelvic bones, upper back pain, muscles pains that aren't from exercise, fatigue, etc. And of course the ever present vulva burning, I'm laying in bed with an ice pack down there as I type this. Sad
I also had a bit of a scare because I was taking antibiotics for a suspected uti, but a few days into it I woke up with a high fever, headache, lower back pain, dizziness. I went right back to the doctor, but she said she thought it was a virus because they didn't find bacteria in my urine. Luckily after one miserable day my fever was gone, and I felt a lot better. Still not feeling great, but that's been my life lately. Maybe a pain specialist is somewhere to look, but I'm only 23 with limited funds unfortunately.

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Re: New here, looking for some support.

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