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» 7 months since the diagnosis
I don't know what to do anymore EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
I don't know what to do anymore EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
I don't know what to do anymore EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
I don't know what to do anymore 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!
I don't know what to do anymore EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
I don't know what to do anymore EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
I don't know what to do anymore EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
I don't know what to do anymore EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
I don't know what to do anymore 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


I don't know what to do anymore

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I don't know what to do anymore Empty I don't know what to do anymore

Post  SinclairSassy on Thu May 24, 2018 5:05 am

I'm tired of living in pain. I'm tired of doctors not even knowing what this disease is. I'm tired of trying to discuss my disease with family members who are too fucking lazy to even google my disease to see what it is (and I have only told my parents and my husband). I printed out pages for them to read, but they couldn't be bothered.

I'm tired of trying medications that make me want to commit suicide. Lyrica - hello!

I'm tired of being in so much pain that I can't sleep at night. I'm tired of not being able to sit up straight. I have to recline on a couch all of the time.

I'm ANGRY that I cannot have sex.

I had to go on antibiotics for a tooth infection a month ago. I flared so badly that I literally shook each time it was time for me to take another pill. My doctor didn't even believe me when I said it caused a flare. Looking back, when I think about that time, it is almost like PTSD, except I am thankful that I have never had to serve in the military. (But am thankful for all active and veteran military - they make our country safe. And my dad is a veteran.)

I used to read all of the time. I loved books. But I don't read anymore. I boxed up all of the clothes I can't wear anymore because of this awful disease. I must have eight or nine boxes of clothes that I used to be able to wear that I am now donating to charity. I have about three boxes of clothes that I am holding back, just in case. But I know just in case is a lost cause. I'll never be able to wear them again. All I can wear are shapeless garments that i don't even like. I used to be attractive and fit. Now, I can't even exercise anymore because it hurts.. My vulvodynia doctor said to find a saltwater pool or build one. Well, there isn't one in my community and since I cannot work, how can I afford to build one? I have lost my femininity, and I think, a large part of myself.

Instead of buying my mom a mother's day card, I wrote her a letter telling her all of the things I was thankful about her doing (except, of course, actually looking up this disease to understand it - whatever).

Part of me wonders if by stopping reading books, giving away clothing, and writing a note to my mom, that maybe I am following the steps leading up to suicide. Maybe I am.

FFS, when I type in vulvodynia on this website, I get a spell check on it. No one cares about this disease, not even enough to have it on the list of words that are correctly spelled. Truly, no offense to this website, but honestly, shouldn't it be a word that doesn't prompt a spell check?

For two plus years, I have tried to stay positive, but I don't know if I can do it anymore.

I have seen a vulvodynia specialist. He said that aside from gabapentin, lyrica, and cymbalta, he can do nothing else for me. He wants me to see a nerve block doctor (not sure what they are called), a rheumatologist, an allergy doctor, an orthopedist, and a neurologist.

Have already seen an orthopedist, and the minute I mentioned vulvodynia, he acted like I had thrown acid on his face and crotch. First do no harm, my ass.

tl:dr
So frustrated. But mainly, so sad. Just so sad every day. Two years ago, my life was perfect. I'm not rich and I had my share of problems just like everybody else. I simply don't know what I did to deserve this.

SinclairSassy

Posts : 27
Join date : 2016-08-02
Location : Huntsville, AL

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I don't know what to do anymore Empty Re: I don't know what to do anymore

Post  SinclairSassy on Fri May 25, 2018 3:41 pm

I am so sorry if this post sounds negative about this website. Because truly, I have gained so much insight about this disease from this website, I can't repay the debt.

I am in pain. I have been told by doctors that there is nothing more they can do for me. But to make matters worse, my youngest cat is sick. His older brother has already suffered the loss of a younger sibling. I made an appointment later today so my husband can help me carry my baby cat in for care. He technically is not a baby, but he is my baby as he is the youngest.

I feel like my body has malfunctioned. I fell like I am broken. I would give anything, ANYTHING, to go back to two and a half years ago when I had my life back. It wasn't perfect, but I loved it, my life. I just wish I weren't so sad all of the time. I wonder why I am being punished. Maybe I was too happy? Is it ever possible to not feel this sad all of the time? Is it ever possible to not be afraid of the next flare all of the time?

But most important, I hope my kitten is well soon.

SinclairSassy

Posts : 27
Join date : 2016-08-02
Location : Huntsville, AL

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I don't know what to do anymore Empty I hope your okay

Post  Aquaben on Sat May 26, 2018 5:21 pm

Hello
I read your story and am so sorry for what you are going through. My wife is in the same boat as you and is on the edge. What you have described is the same thing she talks about. I wish I could help all of you but I myself am unsure. I have come on here to try and get some answers for things that can help my wife.
I know it's easy coming from me as I'm a man and probably don't understand your issues but I want you to know that I think all of you ladies that are going through this are amazing. If people know what you went through day to day there would be more help and i'm sure there will be one day.
I hope your cat is okay and you feel better.

Aquaben

Posts : 1
Join date : 2018-05-26

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I don't know what to do anymore Empty Don't give up.... please!

Post  nola218 on Mon Jun 04, 2018 8:43 pm

I was in your situation for 13 years. In fact, I had vulvodynia from the time I first tried to insert a tampon. I went through 13 years of doctors dismissing my symptoms as either "in my head" or just something minor that would heal up if I only wore white cotton underwear. Here is the exact list of things I tried that I sent numerous doctors to try to help:

Lidocaine (topical and injection)
Gabapentin – oral and topical
Prescription and OTC Painkillers
Biopsy and skin testing
Antidepressents: Cymbalta, Prozac, Zoloft, Effexor, Lamictal, Wellbutrin
Physical Therapy
Clobetasol Proponiate steroid
Hydrocortisone Valerate steroid
Hymenectomy, vestibular widening surgery
Dilators (1 year of daily use)
Botox injections
Psychotherapy
Antibiotics
Nystatin cream
Amitriptyline - topical
Premarin cream
Estrace cream
Gluten-free and low oxalate diet
Kegels, pelvic floor exercises
Home remedies (cotton underwear, mild soaps, icing, baths, water-based lubricants, etc)

I finally found my cure after 13 years. I went to Dr. Margesson in Manchester, NH. She didn't dismiss my symptoms, knew what vulvodynia was (unlike my primary gyno), and referred me to Dr. Adrienne Bonham at Strong Memorial Hospital in Rochester, NY. After one visit with her, she easily diagnosed me with vulvodynia and I had a full vestibulectomy. 3 years later I am in NO pain at all. It completely solved my issue. I'm not sure if you've given thought to this route, but I just wanted to share that I was once in your shoes and I am now free of the physical and mental anguish caused by this horrible condition. If you want more info, I'd be glad to share!

nola218

Posts : 2
Join date : 2015-04-05

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I don't know what to do anymore Empty hello

Post  jungleclover on Mon Jun 04, 2018 10:26 pm

Hey, I saw your post in my email inbox and I felt compelled to get back on here and offer what support I can. I am 23 and suffered extreme pain and anguish from this disease for 4 years on and off. It was the hardest thing I've ever been through. It turns out I have a semen allergy and was getting infections over and over because the doctors didn't know I had an allergy.

What I can say about this disease is that many of us do improve eventually. It will probably be the hardest fight of your life but I know you can dig deep and hang in there. It is painful, frustrating, difficult, and it steals everything you are away from you. I felt very similar to you. I couldn't have sex with my boyfriend, wear the clothes I wanted, or go walking for any extended period of time. I got horrible grades in my undergraduate degree and lost a lot of friends. For years I didn't know who I was because vulvodynia had taken everything from me, but I can tell you that I came out the other side and I am going to live a good life. I know a lot of us end up suicidal to some degree but if you look around people are getting better and leaving this site.

The doctors won't always do the right thing or know the right thing. I know you are in pain but you have to be your own self-advocate, explore all of your options, and push for what you need. Read scientific articles and call different specialists to see if they can offer you anything. There are a lot of options for you and eventually, you will figure out what is triggering your symptoms and you will be ok again. There are naturopaths, valvular specialists, allergists, women's health PT's and so many other clinicians that could be the key to finding your solution.

Lastly, try to remember that you were not always like this and you will not always be like this. When I developed vulvodynia it was a result of nerve damage which takes a long time to heal. Even after my infections stopped I had another 10 months of nerve damage to push through. You can speed this up by seeking help from a women's health physical therapist (I'm currently trying to get into PT school to do this). What I'm trying to say is this is a really difficult and lengthy process but you will come out the other side. Try to hold on to any joy that you can. If looking at your old clothes hurts too much then get rid of them but if having them around and knowing you will be able to wear them and be you again is helpful then keep them. I'm rooting for you! We all are.

Best wishes,

Aleah

jungleclover

Posts : 14
Join date : 2017-07-19

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I don't know what to do anymore Empty Get Vagicaine!

Post  davesjen on Mon Jun 04, 2018 11:59 pm

Hello Pain Sister - I’m so sorry you’re suffering - please get to your nearest Target and get some Vagicaine - it’s in the section with all the vag stuff - it will numb your vagina...it’s the only thing that’s kept me alive - pound your probiotics and prebiotics as well...blessings...

davesjen

Posts : 8
Join date : 2012-11-19

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I don't know what to do anymore Empty Re: I don't know what to do anymore

Post  sarisbaris on Tue Jun 05, 2018 2:34 am

I'm so sorry you're suffering! It hurts my heart to read your post. I was there for so many years. I battled V for 15 years. I'm cured now. Please don't give up hope. I used to write an entire explanation down so I finally created a blog. I was healed using fruits and vegetables as medicine. Plus some supplements/herbs. I tried everything, it was a nightmare. Please consider this and let me know if you need help.

http://myvulvodyniacure.blogspot.com/2018/05/basics.html

sarisbaris

Posts : 69
Join date : 2014-02-17

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