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» Acupuncture advice please
Yesterday at 11:27 pm by infinitelywondering

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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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: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

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


new member with IC and vv symptoms, looking for advice!

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new member with IC and vv symptoms, looking for advice!

Post  susanma on Thu Apr 25, 2013 3:56 pm

Hi all
I am a new member and hoping to get some advice and support.
I have IC and vv sympyoms though no formal diagnosis.
My pain is usually in the urethra which then spreads to the whole vulva area.
At a recent gynae examination the doctor said my vulva skin looked healthy but it feels like I have a red hotpoker through me!
I was diagnosd with IC in 2007 and used amitritypline and acupuncture sucessfully,I had a complete remission of symptoms for 4 years but unfortunately my pain returned last year Sad
I am currently on the low oxalate diet, after discovering extremely high levels of oxalate in my urine.I supplement with calcuim citrate and magnesuim.
I tried the acupuncture again last year but despite twice weekly treatment for 9 months it didn't work Sad
I also tried the ami again but this time round I had to give up after 3 weeks as the side efffects were horrendous.Last time I was fine on it, I stayed on it for 18 months at 50 mgs a day.
I take no pain meds but am due to go to pain clininc next month.
I have tried various supplements and diets in past with no sucess,I am sticking with LOD as my oxalate levels are so high can't help but feel must be connected.
I am menopausal and recently had hormone testing via saliva samples, both my progesterone and oestrogen levels are low.
A private hormone specialist did suggest natural progesterone cream which I used for a few weeks but stopped recently as am becoming more and more convinced oestrogen maybe more helpful given my menopausal state.
I have tried various lotions and poyions for the vulva/urethral pain including vitamion e oil, msm gel, and more recently emu oil.
I would really welcome any advice about whether people have found the oestrogen cream helpful or anyone else also doing the LOD.
But to be honest any tips be appreciated!
I am getting bit desperate as now been off work for 7 months and on half pay.
Do not want to lose my job!
thanks so much
Susan

susanma

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Age : 51
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Re: new member with IC and vv symptoms, looking for advice!

Post  Alana3 on Thu Apr 25, 2013 5:20 pm

I have done the cream, it didn't do anything for me, but remember we are all different. I am convinced I have IC, but I really just don't want anymor medical shit so I haven't gone to the doc, can I ask what are your symptoms? Do you pee frequently thruout the day or only when you eat/drink certain foods? I also did have 4 martinis last night so maybe frequent peeing is my bodies way of getting the alcohol out? I notice sometimes a burning with alcohol ONLY and it makes me pee, so I'm not sure if you can have IC with only one thing? Can you please tell me your experience with it?

I never got any relief with any creams or ointments I put down there for my vv. Baking soda mixed with water def helped me tho. I put it in a cup made it into a paste and left it on there for a few minutes (I just remembered now that I did this lol I just had the surgery and luckily don't have to worry about that anymore!) and than washed it off with warm water. Hope that helps maybe, but it wasn't like all the time, just when I needed it. It's not going to cure you, but it will probably make you feel at least a little better! Where are you located?

Alana3

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Re: new member with IC and vv symptoms, looking for advice!

Post  susanma on Tue Apr 30, 2013 10:22 am

Hi Alana
thanks for your reply
My IC symptoms are mainly pain but do get frequency and urgency at times.I have my symptoms all the time regardless of what I eat or drink,though know some IC pateints can manage their symptoms with diet.IC diets have never helped me so am currently trying the low oxalate diet as my oxalate level is very high.My diagnosis of IC came after a cystoscopy in 2007.I live in the UK.Are you in USA? I tried the baking soda trick thanks very much, did help a bit.I am going to get some oestrogen cream from my gp later this week so will see how that goes. Regarding alcohol, for many people with IC alcohol often makes things worse.When I was in remission for 4 years I would occasionally get some twinges of pain when I drank wine.
Susan

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Re: new member with IC and vv symptoms, looking for advice!

Post  Alana3 on Tue Apr 30, 2013 12:51 pm

Yeah, its weird the only time I have a pain is with cider beer! Other than that I experimented and evreything else is A-ok! Sometimes I feel like I have to pee more than others but usually only pee 7 or 8 times a day, I'm assuming that's pretty normal. This whole experience has made me nuts! Yeah, I'm in Florida. My doctor gave me lidocaine patches they worked wonderfully, maybe ask for those too? It just numbs the whole area its nice. I have a whole box of which I don't need now, I feel like I should give them to someone haha, but def ask for those, they are actually for shingles patients, but can be placed on the vulva! Besides that maybe gabapentin or emirol will work for you? I don't know if either of those are available in the UK, but Emirol here is used for IC patients and apparently is the only drug which is approved for IC. Ask about it I have never been diagnosed but did some research just to have my bases covered (told you I was narotic lol!)...

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Fellow IC SUFFERER (and brand new member)

Post  Guest on Tue Apr 30, 2013 1:29 pm

Hi Everone,

I just became a member yesterday. I was diagnosed with IC 19 years ago (2 yrs after having my son) and I tried everything including having my urethra stretched at least 10 times, DMSO, long term augmentin, and pain killers. I have paid dearly over the years for taking the antibiotics and pain meds. I currently have IC, CLL (chronic lymphocytic leukemia), celiac, fibromyalgia, and too many more conditions to list. I coded in December and am grateful to be alive! The cause of my close call was a deadly combination of meds that I took in good faith because I trusted the doctors and followed blindly. Please be careful with meds. I'm currently detoxing from morphine and it's been horrific! I detoxed from 90% of my meds fairly easily but they call morphine hillbilly heroin for a reason. I'm not telling anyone not to take antibiotics or pain meds -just be careful. I currently see a wonderful naturopath, chiropractor, PCP, and my specialists.

My current withdrawal symptom is "flaming ladyparts " as my dear hubby dubbed it. It's been going on since February. I just ordered Medihoney and will let you know if it works. Right now I'm in pain 24/7 but do not want to ever take pain meds again. I have gotten my "green card " and my state just opened a compassiion center. It's been a major help for me.

I am so sorry to hear of all of your suffering. I belong to a celiac support forum and it has been a lifesaver as well as giving me lifelong friends. I look forward to making friends on this forum.

Again, I'm looking forward to participating and am sending positive energy to you all!

Loey





Last edited by Loey on Tue Apr 30, 2013 1:35 pm; edited 2 times in total (Reason for editing : typed words at end inadvertantly)

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Re: new member with IC and vv symptoms, looking for advice!

Post  Alana3 on Tue Apr 30, 2013 1:35 pm

OMG I am so glad you're alive and well (well sort of lol)... I had an overdose of antibiotics because the twit who was treating me didn't know his ass from a hole in the ground. I ended up getting BV and they never sterilized their equipment and ended up with ureaplasma. That particular office had seen an outbreak in ureaplasma sorry but HOW does that end up happening? It's not like a stomach virus or flu haha. Now everytime something weird down there happens I flip out. I ended up getting a skin tag down below and thought it was a wart, I flipped out. I tested negative for all subtypes of HPV (thank you god) but this particular illness has made me narotic, I don't know how you do it with everything else you are going thru. Anyway, I am so glad you're OK and hopefully you get positive results soon Smile Where are you from?

Alana3

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Thanks for the sweet reply!!

Post  Guest on Tue Apr 30, 2013 2:06 pm

I am a NJ transplant living in Westerly, RI. My husband was transferred and subsequently laid off 7 months later. He was unemployed for 20 months and just got a job offer on Friday. YAY!!!!! I became sick the year before we moved. I consider myself extremely lucky. Nothing is life threatening (if you have to get cancer CLL is rarely deadly), I have a loving husband and a bright wonderful son. I tend to be an eternal optimist and that helps. My biggest regret is that I can no longer teach. I was a videotape editor at CBS for 10 years and a TV tech for 10 years prior to that. I became pregnant at 40 and stayed home with my son for 10 years. At 50 I went to grad school and became a teacher and then returned for my teacher of children with disabilities certificate. I taught for 4 years before I became sick. I feel I've had a wonderful life and know that I will become active again soon. I tutor a young girl for free so I feel I'm still using my teaching skills.

Enough about me, tell me about you. Going offline for a bit. Using my Kindle to write this (sitting at my computer gets uncomfortable. Need to charge Kindle. Someday I'll get an iPad (we're major apple people!) .

Looking forward to getting to know you!

Loey


Last edited by Loey on Tue Apr 30, 2013 2:07 pm; edited 1 time in total (Reason for editing : typos)

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Re: new member with IC and vv symptoms, looking for advice!

Post  Alana3 on Tue Apr 30, 2013 2:22 pm

Nothing really to tell just 27 living in Florida. I loved Rhode Island when I visited- but the winters are a bit too cold for me. I just had surgery for the vulovdynia so that's "cured" now. Yeah, I guess if you have to get cancer that's the way to go! lol thats horrible tho. Sad

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glad surgery worked

Post  Guest on Tue Apr 30, 2013 2:38 pm

Glad to hear the surgery worked Alana! Very Happy It's very normal to worry when any medical issues crop up. I don't think it's neurotic at all. Unless you know the pain of someone's medical conditions (or doctors mistreatment) firsthand it's hard to understand someone in chronic pain. I'm just really lucky to be married to my best friend and have him understand what I'm going through. My other forum calls him Superman (partially because my name is Lois - more now because he saved my life 3 times). When I worry about not having sex he comments that we're intimate without intercourse and we more than made up for it over the last 24+ years. Wink

I'll definitely let you (and everyone) know how the medihoney works. My friend who's a nurse talked to a wound specialist and she recommended it. I was going to wait and run it by my naturopath today but decided to order it as she'll be supportive of whatever I try.

Just put my AM dose of prednisone cream on - OUCH! Going to go couch plop until I can wash it off.

Sending healing (((hugs))),

Loey

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BTW I'm a resource geek

Post  Guest on Tue Apr 30, 2013 2:40 pm

Just wanted to let everyone know I'm a resource geek (almost became a librarian) so if you ever want something researched just let me know!

Loey

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stopped using the medihoney after 1 application

Post  Guest on Wed May 01, 2013 2:40 pm

Good morning everyone,

Well I tried the medihoney and it burned like acid. Saw my naturopath afterwards and she was supportive but concerned medihoney could cause yeast. If I'm not any better in 2 weeks she'll do a culture. She's ordering a pediatric speculum so there will be less pressure. I also have a prolapse. Right now I've decided to stop everything I've been using and give my ladyparts a few days off. I think they need a break from all of the remedies I have tried. I'm even stopping the prednisone cream for a while.

So I'm a little down today. Two girlfriends are coming over to make jewelry (I'm a crafter and also taught jewelry making in afterschool programs & camp for 10 years) . Part of me wants to cancel but DH thinks it will be good for me. I guess I'll play it by ear

Yes, RI is beautiful and extremely cold! I spent my whole life in NJ so I'm used to snow and cold weather but the temperatures here are consistantly 10 degrees colder (great in the summer if it ever gets here) . We live 10 minutes from the beach but sand can be an issue for me. It's taken me 3 years to make good friends. We lived in the same town for 20 years so I really miss my friends from
back home.

I hope you're all doing well today. Thanks for letting me vent.

Loey

P.S. I keep getting emoticons without putting them there. Hmmmm...




Last edited by Loey on Wed May 01, 2013 2:42 pm; edited 1 time in total (Reason for editing : deleting unwanted emoticons)

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Re: new member with IC and vv symptoms, looking for advice!

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