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» Vulvodynia is a secret
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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 6

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

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: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

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: 1


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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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!

embem

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Gurrrllll!!!

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!

Trishann

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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).

LizLemonny

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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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