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» 7 months since the diagnosis
Hurting,  Burning, Itching, and Worn Out EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Hurting,  Burning, Itching, and Worn Out EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Hurting,  Burning, Itching, and Worn Out EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Hurting,  Burning, Itching, and Worn Out EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Hurting,  Burning, Itching, and Worn Out EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Hurting,  Burning, Itching, and Worn Out EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Hurting,  Burning, Itching, and Worn Out EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Hurting,  Burning, Itching, and Worn Out EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Hurting,  Burning, Itching, and Worn Out EmptyMon Apr 08, 2019 7:54 am by Jo44

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Hurting, Burning, Itching, and Worn Out

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Hurting,  Burning, Itching, and Worn Out Empty Hurting, Burning, Itching, and Worn Out

Post  donnambr on Thu Aug 09, 2018 10:55 pm

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with this thing forever. Does anyone else feel like what have they done in this world to deserve this. I feel so depressed. I'm on Elavil 25 mg, Gabapentin. I eat well, no junk food or sugar, taking a probiotic pill daily from New Roots acidophilus and eating probiotic yogurt.  There are days I don't want to show my face in public or go to work at a job in a large department store. Lots of walking involved. I'd like to be a really outgoing person with friends at work, but feel like I'm such a sad case, and it's not like I can tell anyone what's wrong or what's bothering me. I find it so embarassing to talk about with co-workers, so I just say nothing.  My only cream that helps a little, maybe 20% of the time is vagisil cream. Too afraid to try anything else. I feel exhausted already. How do you keep going. I'm 60 years old, trying to earn a living, visit my 98 year old mother daily and I'm single.  I have no one to talk to.  I feel like I'm on fire. I have fibromyalgia also so I think this is a female fibromyalgia. A few years ago I had a flare, with stabbing, knife-like pain in the vaginal area. I've also sufferred with itching so bad I thought insanity was very near. Burning is so intense that it almost makes me feel physically ill.  I see other women out having fun in life, going on holidays, traveling, and I'd give anything to be like them. Everyday I ask why me, but see so many on here suffering with this. Ugh. Life can be cruel. Every time I see a doctor my tests were negative so no point in going again. I feel like my life is ruined. Maybe I'll try a sitz bath with baking soda. Something cooling. If anyone has any suggestions, I'd be happy to hear from you. I'm worn out. I feel like I need a hug from someone.

donnambr

Posts : 1
Join date : 2017-06-02

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Hurting,  Burning, Itching, and Worn Out Empty Re: Hurting, Burning, Itching, and Worn Out

Post  fairlight10 on Fri Aug 10, 2018 7:55 pm

I am so sorry you are suffering again. I wonder what made it go away last time. I read that vulvodynia can coexist with fibromyalgia, chronic fatigue syndrome,migraine and ibs. I am also in my sixties and having to continue to work. I have found relief with nortriptyline, use a donut cushion when l drive. Recently had a flare that l attribute to the heatwave we have just had. Now taking 30mgs of nortriptyline and it's made me comfortable again. If your medication isn't helping ask to try something else. As you have fibromyalgia you could ask to try duloxetine. I have read that it has helped some on this site.l don't doubt you are stressed , depressed even. I would also recommend acupuncture. This would help with the stress this condition causes. You definitely need support so keep in touch with this site.

fairlight10

Posts : 72
Join date : 2016-04-17

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Hurting,  Burning, Itching, and Worn Out Empty MonaLisa Touch

Post  Sad on Tue Aug 28, 2018 3:21 pm

Hi there, I was where you are now. I had vulvodynia for 17 years. The last few years my pain was a constant burning raw feeling. Then I found out about MonaLisa Touch laser therapy and it has changed my life! I go for my final appointment tomorrow, but since my first treatment my pain is gone! I only have it very occasionally and it is very mild. It is getting less and less. I can't say enough good things about this treatment. Look into it, it could help you.
BTW I'm not sad anymore as my user name implies ????
Sad
Sad

Posts : 6
Join date : 2018-02-18
Age : 62

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Hurting,  Burning, Itching, and Worn Out Empty Re: Hurting, Burning, Itching, and Worn Out

Post  aspaceodyssey on Tue Aug 28, 2018 4:55 pm

I'm so sorry to hear how much you have been struggling with this. It is such a lonely and devastating thing to go through. But know that you're not alone...we are here for you to reach out to anytime and you will find a solution to this! Keep the faith. Have you had your hormones tested? Maybe your estrogen is low and contributing to your pain. Intense itching sounds like it could be lichen sclerosus or something similar, which can be brought on by hormonal changes. Have physical exams turned up any signs at all? Thinning skin, red/white patches? Topical estrogen and/or testosterone may be a help. It definitely sounds like there's neuropathy involved too...have you ever tried a topical compounded gabapentin or just oral? Topical oils like emu oil and raw virgin coconut oil are very healing and soothing for the skin too so I highly recommend trying those out and keeping them stocked, especially the coconut oil. Some people have had great luck with natural honey as well.

Holistic treatments like acupuncture are definitely worth a shot, too. And overall self-care and stress management. Could you start up with a therapist (even an occasional/once monthly appointment) so you have someone to talk to and get support for this? Sounds like you are dealing with a lot all on your shoulders and could use some support. I have learned that emotional and physical pain are more linked than we realize. Stress is killer on the body and will prolong your healing and cause more pain. Take some time for you, getting massages, acupuncture, learning meditation/yoga, looking for new doctors who are willing to try new things, trying different treatments, whatever feels like a good fit that may be helpful to you, give it a shot. Nva.org could potentially be a great resource in finding new doctors to try or new treatment options that are available, if you feel you're at a dead end on your own.

Keep fighting! You will find your healing. Please keep us posted and let us know how you are! Be well.

aspaceodyssey

Posts : 30
Join date : 2013-12-09

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Post  feeling desperate on Tue Aug 28, 2018 4:58 pm

I feel for you donnambr as I've been going through all this for the past year. I am 71. I know for sure that stress makes it worse as my husband, of 50 years, who suffered with progressive ataxia for years  and became less and less able to walk, then was diagnosed with untreatable bile duct cancer in March and he died just 7 weeks ago. It was awful seeing him suffer and my vulvodynia was unbearable. It is now improving as I use Yes gel a lot and it is very soothing. I also sit in a bidet with oatmeal in the warm water  for a few minutes and that is also helpful. Apart from those two I found every cream I was given produced intense burning pain and itching. The itching was thrush and the only thing that helped for that was a fluconazole capsule. I hope you get some relief.

feeling desperate

Posts : 6
Join date : 2018-01-02

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Hurting,  Burning, Itching, and Worn Out Empty Try Boric Acid?

Post  ruby on Tue Aug 28, 2018 5:59 pm

Hi there! I'm so sorry to hear about what you've been going through, I've definitely been there and you should know that you are not the only one feeling alone! I definitely feel like that often when my symptoms are bad, even with the support of friends/boyfriend.

I had similar symptoms, a lot of burning and itching (especially at night) following several UTIs, yeast infections, and rounds of antibiotics. Basically, my vagina has been through a lot! My gyno suggested I try boric acid suppositories, so I did 30 days of boric acid suppositories at night. The idea is that the boric acid (which is usually used to treat yeast infections) resets the flora of your vagina. It's kind of like a big reset button, and it helped me so much! My itching pretty much went away. Since then (that was about 4 months ago) I've had some more flare ups, but I'll do a couple nights of boric suppositories and it helps so much! I think my pain and itchiness are rooted in the fact that 10 UTIs and subsequent yeast infections really messed up the balance of my vagina, so the boric acid helped so much to get it back on track. I'm definitely not cured, but this has been a very helpful tool for me and has helped a lot!


ruby

Posts : 2
Join date : 2018-03-19

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