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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 …

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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 …

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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 …

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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, …

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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 …

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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 …

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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

new to the forum, newly diagnosed

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new to the forum, newly diagnosed

Post  It Hurts on Tue Apr 03, 2012 9:22 pm

I've had such stinging pain at the insertion of anything in this area since August 2008. I was six and a half months pregnant and went to my OBGYN immediately and said, "something's wrong". Of course, it was blamed on the pregnancy and the "blood flow" to that area. I had a C-section (age 38 when I had my first and only daughter, Caroline) and waited the 2 months before attempting intercourse. Hurt like the dickens. I even told a friend of mine who was pregnant that "it doesn't matter if you've had a C section or a vaginal birth - both make it so painful to have sex". Little did I know it wasn't the pregnancy....or the C section.....
About 12 months later, I saw my Dr and said "when does the pain of intercourse go away from having a baby?". I got a surprised look. An internal exam showed the skin seemed irritated. Off to a dermatologist I went. Tests done for Lichen Sclerosis were negative. I was diagnosed with acute dermatitis. Got some prescription creams. Nothing helped and meanwhile I am having sex down to once per month at the most. I communicated to my husband that it was just so painful (it was pretty obvious to him because really, sex had become almost an impossibility so he never pressured me, but I admit that any time we did have sex it was SOLELY to try to be a good wife - I had no interest because how can you have interest in something that causes this much pain?). I was given lidocaine and MAYBE it gave some relief but it really just made it so that it was possible to have sex without passing out from pain. I moved to Olympia Washington and got a new Dr and voila - within 20 minutes she told me I have Vulvodinia. I have started Gapabentin and I had intercourse with my husband for the first time in about 2 months about 3 weeks into taking Gabapentin. Sort of helped but even as I write this my privates are stinging from intercourse that happened 2 nights ago. I have an appointment with Multicare Women's Pelvic Medicine and Reconstructive Surgery (George McClure, MC and Danielle Price, MD) scheduled in May. Apparently they are very up to date on vulvodynia. All I can say is the lidocaine and the Gabapentin may help some, but sex is still a painful event. I have heard the condition can go away as quickly as it came and I am just counting the days until that happens. But I may have the surgery - if there is hope of curing it, I WILL have the surgery.
So how are we so unlucky to have this condition? I did have a very big problem with yeast infections in my twenties (I'm turning 42 this year). I also took antibiotics and eventually acutane for my skin. I hear these can be precursors to having vulvodynia. I really hope this just goes away but in the meantime, I am so grateful my husband has been supportive. I read all the things one should do but honestly, taking a warm bath or wearing cotton underwear is not going to solve this problem. It is really severe. I have broken bones and I have arthritis and this is equally up there in terms of affecting what you can and can't do.
Best of luck to all you women. I'll skim through posts here from time to time. I'm glad there's a place we can go and it was great to see some men's perspective. If a man really loves his female partner who has this, then finding any other way to be intimite is what needs to be done. Having intercourse is really quite unhealthy because equating intercourse intimacy with this stinging, burning pain can only be damaging. My husband and I are at the point where we attempt intercourse after I've had new treatment (first a cream for lichen sclerosis - didnt' help, then lidocaine - didn't really help, and now gabapentin - possibly some mild improvement but a mild improvement over really intense pain is still intense pain).

It Hurts

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Location : Olympia, Washington

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Re: new to the forum, newly diagnosed

Post  embem on Sun Apr 08, 2012 9:01 pm

I love your comment "taking a warm bath or wearing cotton underwear is not going to solve this problem." That is so true and is exactly how I feel much of the time! I do my stretches, I use hypoallergenic soap, got 100% cotton underwear, and do everything they say to do, but it makes you wonder if it's really making a difference. I also tried Gabapentin. I'm glad to hear that your husband is so supportive; that makes all of the difference. Good luck!


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Post  lavrose on Sun Apr 29, 2012 1:58 am

I KNOW!!!!

Curing this thing for me has been a PROCESS! It takes time, and requires constant maintainence. I make coconut oil suppositories that I freeze using sport bottle mini ice cube trays. I add 3 drops each of rosemary, lavender, and tea tree oil, and one to two drops Myrrh each suppository. I insert these morning and night until I dont have the pain anymore, and can have functional sex again. I do a maintanence dose once every few days, to a couple times a week. Also, I take a couple spoonfulls of coconut oil everyday, some women claim to prevent it that way, and a few times a week, I take capsules of grapefruit seed extract internally

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New to the Forum and Recently Diagnosed

Post  Trishann on Sun Apr 29, 2012 6:18 am

I, too, am new to the forum and have just been recently diagnosed. I diagnosed myself with vulvadynia after visiting my
primary care physician's office on two different occasions, the ER, and having my Urologist office turn me away. I wasn't
sure who to call next when I thought about my GYN. He was so busy that they asked if I would see the nurse practictioner which I didn't even realize he had hired. I agreed to see anyone who could help with the pain I was having. Little did I know she had never heard of Vulvadynia and she had to look it up on her smart phone or medical phone. After the third visit she confirmed that it was vulvadynia. She did a biopsy, which I later read about on the vulvadynia website, is no longer done for this problem. So she added more pain to what I already was enduring. I endure agonizing pain daily and nothing has helped. Amitryptylene/Nortryptylene only make me groggy to where I can't function and I told the gyn's this upfront. Lidocaine they prescribed didn't help and later the urologist said this could do more harm if used long term than the good it was doing. One doctor prescribes one soap and another changes it so I'm not sure what to use. One physician thinks I should have absolutely no pain medication, while another physician says that noone should live in this much pain and orders pain medication and then the initial physician is upset that I have a pain medication!!! The vulvadynia website has a list of medications listed for our knowledge, yet I am expected to deal with this excruiating pain without anything. I don't want a daily pain medication, but it would be nice to have something to be able to sleep when I have gone days without sleeping from this pain. I can't imagine a physician allowing his wife or daughter to live in this agonizing pain and not providing them with some sort of relief. I am just praying that something happens to make this go nationwide, bring it to the public's attention to get us help! I honestly believe this is why women were commited years ago..they didn't go insane during the change of life...I believe this was happening to many women and they were either ashamed to talk about it or didn't have the vocabulary to describe some of the pain that we encounter! I pray daily that this agonizing, most horrible nerve ending pain I have ever had will go away just like it came...No Warning! Just Disappear!


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Re: new to the forum, newly diagnosed

Post  LizLemonny on Sun Apr 29, 2012 9:13 am

To continue with sex it might help to look at my sex tipshttp://www.vulvodyniasupportforum.com/t812-easier-sex#5204

Everything you have said in your post is SO true. When you do have sex and are left with the stinging also feel gently to see if you have any swelling or any slight trace of blood. If you do then you have what I have which is inflamation in the Bartholins glands. They swell up (one on each side of back half of vulva).


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Re: new to the forum, newly diagnosed

Post  athompson on Mon Apr 30, 2012 1:09 pm

I too have similar symptoms to yours, they all started after the birth of my first son in May 2010. I was 25 at the time, had a third degree tear and was pushing for 2 hours. He was face up presentation aswell. Our first attempt at intercourse afterwards (probably 10 weeks postpartum) wasn't even an option. Things just seemed too tight and even just the touch burned. I went to my family physician who said it takes time and some people have pain for 6 months after. She said to try cortisone creams and Emla (lidocaine) creams. None of this helped. My husband and I got by by doing other things but not without some really difficult days. It is difficult when you feel like the bad one who can't give your husband that part of the relationship. My husband has been VERY supportive thank God. About a year after the pain I got in to see an OB/GYN. She diagnosed me with vulvodynia and suggested trying physio therapy. My first appointment was brutal. The next day I felt like I had just had a child. My whole vulva was raw. I continued going for physio until the beginning of January 2012. It helped relax my muscles and we were even to the point where my husband could get inside me, which was impossible before. In the middle of January my OB/GYN said that she could do a liodcaine/steroid injection into a trigger point. I also started Elavil at this time too. I was pain free for 10 days. When the injection wore off I was in excrutiating pain, things were worse then before the injection and all the work on my muscles went out the door. I had to stop working. I then was referred to a doctor who specialized in pelvic pain. He initially though that my pain was because my muscles were so tense. He did a botox injection into a couple of trigger points. It worked great for relaxing my muscles but did nothing for the burning pain. After this did not work he started to think that my pudendal nerve was involved. He said during pregnancy and long pushing that sometimes the nerve is stretched beyond its capacity and is damaged. This causes the burning, knife like pain. Last week I had a CT guided nerve block. It seems to have helped a little. I have been on Lyrica for about a month and morphine for the pain. I have seen a bit of a difference with the Lyrica. He also presrcibed a amitrytaline/ketamine cream (has to be made at a compounding pharmacy). This has worked miracles for me! It doesn't burn on application and gives releif for a couple of hours. Hope some of this information helps, maybe you too have a damaged pudendal nerve from pregnancy and all the stretching that occurs.


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Re: new to the forum, newly diagnosed

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