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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

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


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

6 years of "it's in your head"

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6 years of "it's in your head"

Post  thanatologist on Thu Jan 09, 2014 5:03 pm

Hi all!

I have been dealing with this issue for 6 years. I would go to planned parenthood and I would tell them sex was basically impossible, and they told me it was a lube problem. It was not a lube problem and I told them for 6 freaking years that was not the case.
I recently moved out of town and into a small college town where I am an undergraduate. I made an appointment with the school nurse and FINALLY on Monday, she confirmed I have vulvodynia and I was so relieved. (well, to know it wasn't just in my head!)
I have felt so alone and so crappy. I have a fiancee and we have been engaged for 2 years and together for 4. I have sex maybe once every few months with him. He is patient, loving, and caring, but I feel like an absolute failure and often wonder why he even stays with me because I am defective.
I started a regime of 2% lidocaine jelly and 10 mg of Nortriptyline. Has anyone else tried this combination? So far, that pill just knocks me out about 5 minutes after I take it.
Thank you for the support. This being such an unknown area in the medical world definitely sucks.


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Re: 6 years of "it's in your head"

Post  mary jane on Fri Jan 10, 2014 6:39 pm

it's rather infuriating to have doctors NOT listen to you and label you as "psychosomatic" (right, because chronic pain is impossible)
the amitriptyline/nortiptyline and lidocaine combo is standard therapy for vulvodynia....
I know what you mean by painful intercourse, but there is no reason to feel there is something wrong with you sexually... you have a medical condition, that is something different. If he does not understand, his problem... similarly you could have underwent surgery to leave you unable to have intercourse from the pain! these things happen unfortunately....

amitriptyline helps me, but I have pure nerve pain.... if you find the nortiptyline does not help you (you have to WAIT for it to build up in your system, it took me 2 months to get pain relief), then switch to something else....

if you are in the US, dr Fred Howard in Rochester is VERY good: https://www.urmc.rochester.edu/people/21596933-fred-m-howard
mary jane

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Vulvodynia sucks, doesn't it?

Post  Fingerscrossed on Fri Jan 10, 2014 10:02 pm

I had very similar situation to you, which is a bit eerie. I went to Planned Parenthood from the time I was 18-23 (moving to Kentucky for graduate school when none were available), and could not understand why getting a pelvic exam hurt so badly. They suggested that I was unable to relax, had me do STD tests (came back negative), and had me switch pills. I went to my undergrad health center where they suggested it might be vulvodynia, but really couldn't do anything about it. They suggested I dilate and use lidocaine, but it didn't help and only made me more upset.

I finally sought help last March after dealing with this issue for six years and was officially diagnosed with provoked vulvodynia and pelvic floor dysfunction by Dr. Robert McQuady at the Pelvic Pain Regional Specialty Center in Louisville, KY. I've been on amitriptline since that time, lidocaine as needed, and also baclofen, which is a muscle relaxer. I don't know if they've actually been working or not. I tried using Lyrica, but couldn't stand the symptoms. It made me so drowsy that I nearly fell asleep driving to my appointments and in classes. My doctor is two hours away (three with a time change), so I could not do weekly physical therapy sessions until I finished my semester classes in May. I did therapy on a weekly basis from May-August and had some improvement with the pelvic floor dysfunction, but nothing with the vulvodynia. So, I underwent a vestibulectomy on December 17, 2013 and am currently still going through recovery. I just had a checkup yesterday and he said everything looks good, but I haven't been able to test out my new parts since it's only been three weeks.

Throughout this time, I have been with a wonderful man. We've been together for six years now--1 1/2 years dating, 3 1/2 years engaged, and one year married. He and I lost our virginity to one another and for a time, I was able to have pain free sex, though it took many attempts over different dates for him to be able to actually penetrate me in the first place. I've never been able to use tampons or have pain free pelvic exams. My husband does get frustrated sometimes and we essentially are in a sexless marriage because it is painful for me, but he understands and wants what is best for me. However, I hope that the vestibulectomy will work as it is supposed to it and one of my barriers to a pain free sex life will be gone. Once I get the okay, I will be continuing physical therapy and maybe the pelvic floor dysfunction will go away.


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Re: 6 years of "it's in your head"

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