Log in

I forgot my password

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

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

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

    » Looking for a friend..... and new problems
    Yesterday at 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


    This worked for my mom

    View previous topic View next topic Go down

    This worked for my mom

    Post  rk on Tue Nov 16, 2010 4:19 am

    Hi -- I'm new here. While I don't have vulvodynia, my mother did about three years ago and I joined to tell you about a treatment that worked for her. I recognize that this is anecdotal and not as useful as scientific evidence, but I'm relating this in the hope that it might help others.

    My mother who is 80 now, was not officially diagnosed as having vulvodynia as she has dementia and aside from doctors not knowing about it, it was very difficult to get accurate information from her, but when I read this article Vulvodynia: Dismissed and undiagnosed I knew that's what it was. She had had it for many months, we had been to many specialists (gyn, urologists, dermatologists), to no avail. She was also at a stage in her dementia when she could not use the bathroom on her own and the vulvodynia caused her to want to go every 5 minutes and she refused to use a diaper. Caring for her at home was exasperating. I spent days reading up on treatments on another online forum -- we tried just about everything. Then, in desperation, my parents started going to a Chinese medicine practitioner that my cousin had visited for another condition.

    This practitioner spoke no English and his daughter translated for him. His office was in his basement and looked like an herbalist shop. He prescribed an herbal medicine to be taken with water, a diet regimen that excluded chicken, fish, many kinds of vegetables and fruits and called for most food to be boiled, and an herb bath i.e. bags of herbs to be boiled for 1/2 hour, and applied to a rag on the abdomen for 20 min, twice daily.

    The vulvodynia started clearing up within 2 weeks as the practitioner had predicted. The treatment was very onerous and I don't know if someone less dedicated than my dad could have kept it up, as we kept it up for a couple of months.

    We'll never know if the vulvodynia would have gone away on it's own, or if the treatment had an impact. One curious side effect was that her nails turned a perly orange colour. (It looked like she was wearing nail polish, though she had never worn it in her life and had no access to any). A dermatologist said this did not indicate any harm and might have been caused by the diet change.


    rk

    Posts : 3
    Join date : 2010-11-16

    View user profile

    Back to top Go down

    Re: This worked for my mom

    Post  elkrunrockies on Tue Nov 16, 2010 4:28 am

    Because I have both Interstitial Cystitis and Vulvodynia I would suggest that maybe your bother had IC perhaps with vulvodynia as well. Vulva pain does not usually make you want to urinate every 5 minutes - it just hurts! Would it be possible for you to give me details of the herbalist you saw? and where was he located? Maybe I could correspond with him. You could email me at elkrun8@comcast.net. thank you A

    elkrunrockies

    Posts : 4
    Join date : 2010-10-30

    View user profile

    Back to top Go down

    bathroom use

    Post  rk on Tue Nov 16, 2010 4:47 am

    I mentioned that she wanted to use the bathroom every five minutes to indicate how difficult this was for all of us. I should have clarified however. When I hid the toilet paper and told her she could only have some after she urinated, her behaviour changed. I suspect that she really wanted to use the bathroom because wiping offered her some momentary relief and that the urge to urinate was not real/physical.

    rk

    Posts : 3
    Join date : 2010-11-16

    View user profile

    Back to top Go down

    Re: This worked for my mom

    Post  Sarah001 on Tue Nov 16, 2010 8:25 pm

    What a result! I've considered chinese herbs but I'll probably go down that route once I've relaxed my pelvic floor. Vulvodynia can cause urinary frequency if the pelvic floor is tight, when my pelvic floor was at 20 I had urinary urgency and frequency from that.

    Elkrunrockies, have you ever tried coconut oil? I know it sounds a bit far out but I read a post on another forum from a lady who had IC and Vulvodynia and she started eating coconut oil and both greatly reduced, it might have been a coincidence of course but it just stuck in my mind.
    avatar
    Sarah001

    Posts : 1163
    Join date : 2010-06-11
    Age : 44
    Location : UK

    View user profile

    Back to top Go down

    Re: This worked for my mom

    Post  Sebby (Admin) on Tue Nov 16, 2010 9:06 pm


    Thats great rk, we welcome all advice and help. Personal success stories are as valuable as any science!!

    That does sound interesting! where did you see this herbalist?

    Sebby
    xx
    avatar
    Sebby (Admin)
    Admin

    Posts : 750
    Join date : 2009-12-03
    Age : 37
    Location : London UK

    View user profile http://vulvodyniasupport.forumotion.net

    Back to top Go down

    where

    Post  rk on Wed Nov 17, 2010 1:22 am

    The herbalist we saw is in Mississauga, a suburb of Toronto in Canada.

    As I wrote to elkrunrockies, he spoke no English and even with a translator, it was difficult to understand his explanations as the Chinese concept of medicine seems very different to what we're used to in the West. For what it's worth, he had a certificate for 'Chinese Medicine' over his desk.

    He also relied alot on visual cues, so physical presence seemed necessary. Though I wasn't present, I was told he initially diagnosed my mother by extracting some fluid from her hand and touching her skin. He called her condition 'an infection' and said the treatment would last a certain period -- I think it was about 2 months. We followed his instructions exactly, even though it would have been easier to cut corners -- for example by microwaving food instead of boiling it -- since they're chemically identical. Repeated visits were necessary, I think weekly or biweekly.

    I suggest finding a local practitioner.

    rk

    Posts : 3
    Join date : 2010-11-16

    View user profile

    Back to top Go down

    IC and vulvodynia "search for solutions"

    Post  elkrunrockies on Wed Nov 17, 2010 2:40 am

    I appreciate the input. Perhaps the coconut oil alkalized the system? the acid/alkaline balance is extremely important, and I am striving to be more alkaline. Phion Greens might be the answer to help with this. I bought some Greens First yesterday but did not check the ingredients. Too many items that insult my IC and probably the vulva pain. Going to try the Phion variety. I have done pelvic floor therapy 2/wk for almost a year, and it has helped the vulva pain, dropping my pelvic floor. I'm on Medicare so have to take a break since they won't pay for maintenance. Our Healthcare is so out of whack I wonder what we are going to do?

    elkrunrockies

    Posts : 4
    Join date : 2010-10-30

    View user profile

    Back to top Go down

    Re: This worked for my mom

    Post  Sarah001 on Wed Nov 17, 2010 1:51 pm

    I don't really know why this worked, I do know coconut oil contains alot of bits found in breast milk so it's supposed to be good for the immune system but I can't remember how this lady came to the conclusion it might help her. Have you looked at the IC network forum? If not if you google it there's loads of posts about IC and vulvodynia, I often find myself on there because of the vulvodynia posts.
    avatar
    Sarah001

    Posts : 1163
    Join date : 2010-06-11
    Age : 44
    Location : UK

    View user profile

    Back to top Go down

    Re: This worked for my mom

    Post  Sponsored content


    Sponsored content


    Back to top Go down

    View previous topic View next topic Back to top

    - Similar topics

     
    Permissions in this forum:
    You cannot reply to topics in this forum