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» Vestibulectomy today and no pain
Today at 3:28 pm by Dsrt16

» vestibulectomy success
Yesterday at 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:06 am by Jgreen81

» Pain aftee vestibulectimy
Yesterday at 12:03 am by Jgreen81

» Freaking out because I don't think surgery worked HELP!!!!
Yesterday at 12:01 am by Jgreen81

» Vulvodynia help
Wed Nov 15, 2017 1:04 pm by ekaterina1996

» FACEBOOK VULVODYNIA SUPPORT GROUP (SECRET)
Tue Nov 14, 2017 9:53 pm by Dsrt16

» Needing some reassurance
Sun Nov 12, 2017 3:04 pm by Nicmay

» Vulvodynia burning mouth and bladder discomfort
Fri Nov 10, 2017 7:26 pm by Zbrown

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

Comments: 3

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 0

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7


PLEASE READ

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PLEASE READ

Post  katie220 on Wed Mar 20, 2013 5:51 pm

Hey everyone, I just wanted to ask you all a few questions about whats going on with me. My pain has been the same around three years. The pain gets better around the first day of my cycle and then progressively gets worse towards the luteal phase. Sometimes I can have sex and sometimes I can't. The strange thing is that the pain is mainly on the right side of my vagina. Docotors always told me I had a bacteria problem but no anti biotic ever helped. It doesn't make sense because if I had a nerve problem then why would the pain get better at times? I am really frustrated. Another odd thing is that if I take xanax the pain level goes down. Also, if I drink baking soda and water the burn on urination will go away. I am just really worried that this will turn into full blown constant pain and it will be all my fault. Can someone who has had this for awhile give me some advice?

katie220

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Re: PLEASE READ

Post  Alana3 on Wed Mar 20, 2013 6:11 pm

Mine always got worse before my period, and mine is worse on the right too. You could possibly have a muscle spasm on the right side which makes it uncomfortable. I had surgery in December and my probelm disappeared except for the muscles, which is a work in progress. If you take a xanax its for anxiety, so I would imagine that the pain would diminish because it makes you relax and if its at all muscular, well there you go! Perhaps you have IC? I think burning with urination is a symptom of IC. Also, people with IC have trouble having sex as well. Do you pee a lot? And nerves are stupid, my pain was only there if provoked not all the time. So even with a nerve problem, it doesn't mean that your nerves aren't firing off different signals at different times. Pay attention to what you're doing when it starts hurting really bad. Sex? Sitting too long? But my vulvodynia def got way worse (as did everything) when my period came and better after it ended. Stop taking the antibiotics unless you really need them, they aren't going to help you for what you have. I had a doctor who did that to me too, and it never worked, finally, I got so frustrated I went to look for a specialist (after I was told I had herpes which I DIDNT!) and he diagnosed me with vulovdynia and treated me with a topical compound for a while and finally I couldn't take it anymore I opted for surgery.

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Re: PLEASE READ

Post  katie220 on Wed Mar 20, 2013 6:38 pm

Thanks for the reply! I don't think I have IC. I mean I pee a lot but I've been that way since I was a little kid. What kind of surgery did you have? Surgery would be the last resort for me but if it works I would definitely do it. The only problem is that I can have sex at times and I wouldn't want surgery to numb me to the point where I can't have an orgasm anymore. Did it do that to you? I was also wondering if you felt a sort of "zapping" feeling or a feeling of electricity on your right side at times. It happened to me when I stopped drinking caffeine. Yes, it does get worse when I sit too long. When I get up and walk around it gets a lot better.

katie220

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Re: PLEASE READ

Post  Alana3 on Wed Mar 20, 2013 6:50 pm

They basically removed the affected skin, it was a last resort for me too, and my doctor tried everything before he did the surgery. I mean I'm not having sex right now, but I still have every sensation (besides the pain) that I had before surgery, now. You'll def be able to have an orgasm lol, no worries. I sometimes do get an electrical feeling, but its every now and then, but I think mine is from where my body is recovering from my surgery lol Yours sounds like mine where your skin is affected and possibly some muscular. But I mean I don't know for sure. Where are you located? If you're anywhere near me, my doctor is awesome and has made me feel so much better Smile

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Re: PLEASE READ

Post  katie220 on Wed Mar 20, 2013 7:04 pm

That's awesome! I always thought surgery made you permanently numb lol. I live in a suburb around Kansas City Missouri. What was your condition called? If you can't give me the name of it could you describe it to me more? I want to tell my doctor about it because he is confused about what my problem might be too.

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Re: PLEASE READ

Post  Alana3 on Wed Mar 20, 2013 7:31 pm

If your doctor doesn't know what your problem is, I'd get a new one or someone who can help point you in a direction appropriate for you. Mine was provoked vestibulodynia, basically meaning that my pain was only there on contact (with a penis, qtip, pelvic exam, tampons, etc.). So sex was impossible, and where it sometimes flared it was nothing like I've heard other people describe. I guess it could make you numb, but that was a question I asked my doc when he first told me about it, and said that would defeat the entire point of the surgery and most people have like 98% success rates. I'd say mine was that close. The surgery itself was called a vestibulectomy. However, only a few people are referred that route because it's not for everyone. People with unprovoked vestibulodynia are not often reccomended to go down that road, for whatever reason, it wouldn't work in their case. But I had no burning with peeing, I would look into that too, that sounds awful. I live in Florida, I don't know if that's an option for you, but my doctor honestly was a life saver for me, he specailizes in vulovdynia, and chronic vag pain. Another thing I did was physical therapy, but before my surgery it was so painful I couldn't take it anymore and had to stop, now I go with no problems, except for muscle spasms. Grrr.

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Re: PLEASE READ

Post  katie220 on Wed Mar 20, 2013 9:16 pm

Thanks for all the advice! You definitely helped. I will keep you updated on how my progress goes and I'm going to look up some vulvar pain specialists in Kansas City. I may just have generalized vulvodynia because it's not provoked. I'm only 24 though so I'm not really sure if I'm too young for that.

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Re: PLEASE READ

Post  Alana3 on Wed Mar 20, 2013 10:16 pm

It doesn't matter how old you are there are little kids with it unfortunately. Good luck lmk if u need anything

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