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» What's next?
Tue Apr 24, 2018 4:01 pm by jennyk2

» Pain management - what works for me
Tue Apr 24, 2018 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

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: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

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 …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


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
Location : sheffield

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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

susanma

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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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