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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules


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 …

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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: 2

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

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


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

Newly diagnosed

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Newly diagnosed

Post  drivenbyambition on Mon Mar 02, 2015 11:35 pm

My story started when I noticed a burning sensation last year. My period was late and I wore a maxi pad in fear of my period starting unexpectedly. I got very irritated and eventually ended up with bacterial vaginosis (that I believe happened due to the maxi pads). When I went for my pelvic exam, I was diagnosed with the previous mentioned condition, but was told treating it would not heal my inflammation. I was told to use diaper rash cream, hydrocortisone, etc. Nothing helped. Fast forward to this year, I began seeing another doctor, an OBGYN. He prescribed a cream at first, which gave a little bit of pain relief the first few days, but discontinued when I realized it was not working. He said if this cream did not solve my issue, it would be time for a biopsy. He said it could be a number of conditions because vulvar issues do not present themselves the same way in each woman. This past appointment, last Monday, I had the biopsy. I cannot describe the pain I went through with the lidocaine injection. It was bearable, I did not cry, but I never want to have another one. I was absolutely miserable this past week. I received the official call that I have vulvodynia and will be referred to a specialist. I have been prescribed Gabapentin, which the side effects scare me, and my husband I both wonder how an oral medicine is going to help with the redness and inflammation. I am so very scared to never be the same again. I'm scared about the long-term effects of this medicine on fertility, because I am yet to have children. Sorry for the long post, and as much as I hate this condition, I am glad I have found a place where I'm not ashamed to talk to others about it. It's been hard this past year, because no one has understood my every day struggle. Thanks for reading.


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Re: Newly diagnosed

Post  meelie on Thu Mar 05, 2015 1:04 am

Please let us know what your specialist says. Gababentin (Neurontin) is actually a seizure medication that has been discovered to help to numb nerves and decrease nerve pain. It is prescribed a lot for what we have. Also Lyrica is one of those that is newer but costs more. It is also prescribed for people with Fibromyalgia and Diabete nerve pain. You can look it up on the net, google it. It should tell you if it's been okayed if you get pregnant. Don't know anything about a long term effect for when you bet pregnant later. I imagine it doesn't change in Chromosomes so it should not affect a future pregnancy especially if you are already off of it. I can't imagine, though, pushing a baby out of my vulva burning like it does. Ouch. Or even getting pregnant for that matter. Good luck. Hope this helped and don't forget to tell us if your specialist has any new methods.


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Re: Newly diagnosed

Post  drivenbyambition on Thu Mar 05, 2015 7:23 am

I am still waiting for my appointment to be scheduled. I do know that she will begin by prescribing medicine. Starting with one and going through about five. She has her full treatment plan listed online. Last resort would be surgery.

I have decided not to take the medicine yet if at all until I have my first child. I would prefer to have a C-section due to this condition, which I never thought I would ever say that.

Thanks for taking the time to reply. I'm quite nervous and scared.


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Re: Newly diagnosed

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