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» Can you guys tell me your experiences with diflucan/Fluconazole?
Yesterday at 1:29 am by ryn207

» So frustrating!!
Yesterday at 1:25 am by ryn207

» Looking for suggestions or encouragement
Yesterday at 1:19 am by ryn207

» Looking for a friend..... and new problems
Mon Jan 15, 2018 10:00 pm by VVSSufferer

» Vestibulectomy recovery question!
Sun Jan 14, 2018 11:37 pm by Kezz

» Prescription creams that work!
Sun Jan 14, 2018 4:46 am by Mintaherb

» Struggling
Sun Jan 14, 2018 4:29 am by Mintaherb

» Went Away and Came Back
Sat Jan 13, 2018 10:56 am by mary jane

» Amitriptyline given for vulvodyina pain
Sat Jan 13, 2018 1:39 am by ryn207

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

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: 5

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


Treatment Options / Surgery

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Treatment Options / Surgery

Post  vldicker on Mon Jan 26, 2015 11:21 am

I am so happy to have found this forum. I have been suffering with vulvodyina for years…diagnosed when I was 22 and now am 25 but suffered long before the diagnosis. Over the past years it would only flare up for maybe a few days and then wouldn't bother me at all for a long time. My doctor put me on antidepressants and lidocain gel which did nothing to stop the random flare up so I stopped taking the Meds. Then in the past year it has been getting worse. In Dec 2014 it flared up and has not stopped since, so has been almost 2 months.

My vulvodyina is extremely localized to one spot. I have been to the doctors so many times that he knows exactly where to go to. Right now he has me on Gabapentin and Norco (only taken when in extreme pain). I also get injections of lidocane once a week (which I do not recommend as it only provided one day of relief for me). I have noticed that if I take AZO it helps numb the area which is nice but I don't like to take it all the time. The thing that upsets me the most about all of this is the number of meds I am taking and the damage it is doing to my liver. I am one who would prefer no meds at all.

My next treatment option is surgery. I was wondering if anyone had gotten the surgery and if it helped. According to one of my doctors I would be a perfect candidate (Not my gynecologist, so I have to bring it up with him still). I am willing to take this option if it doesn't make it worse and there is a chance I will never have to take pain meds ever again for this!!! I am a runner and a very outgoing person in a fantastic relationship and would LOVE to have my life back!

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Re: Treatment Options / Surgery

Post  sailor_moon on Mon Jan 26, 2015 8:26 pm

You poor thing. I am 27 and I know what it's like to be dealing with this sh*the when your young. It's the worst.

If it is only in 1 spot that's a good sign that surgery would work for you, but it should be a last resort.

It has taken me almost 2 years to find a good doctor and over $10000 spent on incompetent doctors and treatments.

I finally had a proper hormone profile test done which shows I have very low estrogen, bordering between menstruation and menopause. Lack of estrogen can cause vulvodynia. ultrasound and blood test proved I also have PCOS. And my doctor suspects I have endometriosis so I am on the waiting list to have a laproscopy and hystoscopy to see if I have endo and remove it as well as seeing if anything else internal can be causing my problems. Apparently endo can settle on nerves and cause vulvodynia, and there's no fixing it until the endo is removed.

My symptoms are different to yours. I have itching and burning randomly all over. Some days are worse than others.

Yours does sound nerve related. But in saying that, the mess they have given you have not worked so it may be something else. Try to hang in there. It's so hard I know.

You really need to see a good gyne/ vulva specialist. Google the best ones near your area.
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Surgery

Post  chelseax on Thu Jan 29, 2015 4:46 pm

Hi, I'm glad you found this forum to as it is very good for people with vulvodynia as there arnt many of your friends who have this illness. My names chelsea and I'm 19 years old, I've had Vulvodynia for 3 years now, yesterday I made the biggest choice of my life and had a Vestibuloctemy! (the surgery you are talking about).
Over the last 3 years I have tried the lidocaine gel, which worked mainly during and after sex, I also tried the gabapentin, and antriptyline and nortriptyline. Not any of those antidepressants helped in the slightest, they just sent my emotions through the roof with the side effects. The surgery isn't always a cure but it is the best case of treatment known to doctors yet, online it says the success rates are quite low, but they haven't been updated for about 15 years, the success rates are now in the high 70's all the way to 100%. I had a modified fentons procedure and a Vestibuloctemy, I also had Botox injected into my muscles to stop them from spasming up everytkme something entered my vagina, I couldn't even wear a tampon without having to force it in (sorry for the grafic detail) I only had the surgery yesterday, but the pain has been at a minimum, the only trouble I have had is going for a wee. It burns but I also poor a jug of water down my lady bits as I am peeing so it doesn't burn as much. If you have any questions on the surgery feel free to message me.

Chelsea x

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Re: Surgery

Post  vldicker on Thu Jan 29, 2015 4:51 pm

Hello Chelsea,

Hopefully you have found the cure for you. I am scheduled to meet with a surgeon in a month. We will just talk about it and decide if that is the best option for me. Until then, I have injections and gabapentin to try and get me through. I am also going to see a chiropractor to see if that makes a difference.

I would be extremely interested if hearing how you are doing two or three weeks from now. Even though we are not all the same I would like to know.

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:-)

Post  x_chelss@live.com on Thu Jan 29, 2015 7:27 pm

Yeah sure I will happily tell you about what everything is like in 2-3 weeks, at the moment everything pain wise is low just the odd sting in some places where the stitches are. I had a look in the mirror earlier to see what it looked like, and be prepared if you have the surgery because it is not a pretty sight at all! I cried, but I have been told it gets so much better once the swelling has gone down x

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Surgery.

Post  x_chelss@live.com on Sat Apr 25, 2015 10:58 pm

Hi, I just come across this post from a few months ago.
How did your meeting with the surgeon go? Did you decide to have the operation or have you found another treatment?
It's been 13 weeks since my surgery and I've started to have regular sex again. Vertically pain free! I do still have some painful tissue at the top of my vagina hole which my surgeon said he would remove if needed but I'm not struggling day to day with the pain anymore. I do have burning around my urethra still but that's suspected to be my skene glands, which can also be removed if needed but I don't feel like it causes much pain anymore.
If you still use this site it would be nice to hear from you Smile

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Re: Treatment Options / Surgery

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