Log in

I forgot my password

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


22 years old, unhappy and miserable

View previous topic View next topic Go down

22 years old, unhappy and miserable

Post  shay on Thu Dec 30, 2010 1:46 am

HI MY NAME IS SHAY AND IM A 22 YEAR OLD COLLEGE STUDENT WHO IS MISERABLE AND UNHAPPY BECAUSE FOR THE LAST 8 YEARS I HAVE BEEN BATTLEING HEALTH ISSUES. TO BEGIN I HAVE AT LEAST 15 SURGERIES FOR HYDRANTIUS SUPPRATIVA ( HOPEFULLY SPELLED RIGHT LOL) WHICH HAS CALL ME TO HAVE TO MAJOR SURGERIES IN MY GENITAL AREA THAT HAS LED TO MULITPLE YEAST INFECTIONS, CREAMS, PILLS AND DEPRESSION. I HAVE BEEN TESTED FOR EVERYTHING WITH NO KNOWN CAUSE FOR THE STINGING, ITCHING AND PAIN AFTER RESEARCHING MYSELF I BELIEVE I SUFFER FROM VULVODYNIA AND MAYBE SOMETHING ELSE THAT AFFECTS THE CLITORIS HOOD WHICH SEEMS TO CAUSE ME SOOOOOOOOOOOO MUCH PAIN. I HAVE BEEN WANTING TO POST BUT WAS AFRAID OF DEAD ENDS AND NO SOLUTIONS BECAUSE I HAVE BEEN HOPEFUL AND DISSAPOINTED SO MANY TIMES. I AM ONLY 22 AND CANNOT REMENBER A DAY WHERE I WAS COMPLETELY PAIN FREE DOWN THERE. SO IF YOU GUYS HAVE ANY WORDS OF ENCOURAGEMENT , TREATMENTS AND QUICK FIXES FOR FLARE UPS BECAUSE IM HAVING ONE RIGHT NOW......

PLEASE HELP
CANT KEEP LIVING LIKE THIS

LOVE SHAY

shay

Posts : 7
Join date : 2010-12-30

View user profile

Back to top Go down

Re: 22 years old, unhappy and miserable

Post  katemate on Thu Dec 30, 2010 11:04 am

Hi Shay

Sorry to hear about your troubles, there really is nothing worse then vagina related health issues!

Firstly, I hate to say it but there is no quick fix for Vulvodynia, But what I have done has helped me, it took a few weeks to a month and a half to notice improvement, but it has been such a massive improvement, have a look at my thread http://vulvodyniasupport.forumotion.net/t201-what-helped-and-practically-cured-my-vulvodynia

It has details about what helped me (also scroll down for my other reply which goes into further details), my vulvodynia isn't totally cured but I have now mainly totally pain-free days, after having Vulvodynia for about a year, I am SO much better now. I came to this forum to spread the word about the things that helped me, in fact I feel bad for not posting sooner, as for the last few months I have been much better, but it shows I have been enjoying life again! And you will too!

Hang in there, Shay,

Kate xx


katemate

Posts : 20
Join date : 2010-12-29

View user profile

Back to top Go down

Re: 22 years old, unhappy and miserable

Post  Sebby (Admin) on Thu Dec 30, 2010 2:23 pm


Hi Shay and welcome to the forum.

Please dont give up as you can see from Kate's post there is hope for us to gain much pain relief!!

It is a long road of try this and try that and oh dear that didnt work etc etc and can leave you feeling soooo disapointed and fearful that there is no soloution. But there is and there must be a solution as women are getting relief from this. Its just about getting all the info and support you need and seeing what works for you.

As for flare up fixes, if im in a lot of pain I do take co-codermol just to take the edge off but im quite senstive to opiates so the main reason it takes the edge off its because im all drowsy! lol but if the pain is bad then I do what I have to do. I take 15mg co-codermols which do have to be prescribed by a dr. This is just for the bad days and is not a long term fix. Also oddly enough I seemed to get some relief with my last flare up with using nappy cream!! it seemed to soothe my skin.

On flare up days, if you are indoors, wear a long skirt with no underwear so nothing is touching the vulva area. Relax and treat yourself. Eat some chocolate and rent a good movie. Chat to someone with a sympathetic ear..have a cry if you need too. This psychological release does help. I find bad flare ups are only temporary and eventually calm down so keep telling yourself this! "This too shall pass" its my favorite quote

Once you find a long term treatment that gets to work then these flare ups will lessen.

Im going to try the dilators that Kate suggested

Take care and come to us for support when you need it

Sebby
xxx
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

Re: 22 years old, unhappy and miserable

Post  jules on Fri Dec 31, 2010 2:10 am

Hi Shay,

I'm so sorry you have been going through this for so long. I have Generalized Vulvodynia. My pain is all over the Vulva and less so in the Vagina. These are the things that may help you: First get yourself to a pain clinic. The doctors there know how to treat nerve pain. Other ideas:

Put gel packs in the refrigerator to cool them. When using a gel pack on your vulva, put a wet paper towel over the gel pack and apply gently to the Vulva. If you are having burning pain, this will cool down the area and give you some relief. Before i started on meds, i was using this method 6 times a day and i work full time so it got tricky during the day.

Medications can be very helpful. I am on Gabepentin (neurontin) I am on the highest dose 3600 mgs. I did get some relief from about 2000 mgs but i kept on going up in the dose to get more relief. Gabepentin is used frequently for this nerve disorder. It is a anti-convulsant. I then added Lyrica to the mix. Lyrica is used for people who have nerve pain, such as Fibromyalgia. Just adding 100 mgs. made a world of difference for me. I am now on 150 mgs. I also recently started Cymbalta. This medication is used for depression (which i would guess most of us have). I am on 20 mgs. This medication also helps w/ pain. over the past month, i have noticed the least amount of pain ever. Several months ago, i had to stop working out because even 10 minutes of cardio would cause me to have burning pain. Now i am working out regularly and as long as i don't over do it..i can work out w/ no problem.

For sitting, i use a foam cushion (hole in the middle). You can order these online. I always sit on my cushion at work and home. I really can't sit on a chair for more than about 10 minutes w/out feeling my pain come back. I can have sex and don't typically have pain afterward. I'm not a sexual dynamo though.

I do take Vicodin for pain from time to time...especially if i feel the burning start up. I do have burning pain sometimes...but absolutely nothing like the past.

I did start physical therapy, but i stopped. i tried the dilator thing and did not appreciate the pain it brought me. my therapist determined that i did not have much tension within my pelvic walls. i wasn't tensing as I used to because my pain had diminished.

These are the things that did not work:

I had two spinal blocks w/ no results -this is pretty typical from what i hear..but i wouldn't cross it off your list.

If i were you i would not use any creams, lotions or gel. EVERYTHING i put on my vulva stings. i believe all of the creams that i was prescribed for my vulva pain made it worse and made my condition worse.



I know how you feel about not wanting to get your hopes up. I have had my hopes dashed a number of times. But you will find relief. Its worth it to take the journey. You don't have to live like this. I decided i wouldn't give up until i found relief...and i have. It's not perfect but its 90% better

good luck and keep us posted.

Jules cheers

jules

Posts : 225
Join date : 2010-03-17

View user profile

Back to top Go down

You're not alone

Post  [Sara] on Sat Jan 01, 2011 1:59 am

Wow, I just found and joined this site tonight and am so relieved there is another 22 year old dealing with this! Our symptoms aren't exactly the same but I wrote about mine in the My Story section. Basically I have intense burning and rawness upon insertion, burning while peeing, pain during bm's and lower back pain. I can't sit for long periods of time. This is frustrating because I am still a newlywed (married in June of '09), and the first 10 months of our marriage I had no symptoms. Prior to this, I never had problems using tampons or peeing or anything. April of '10 was when it all went downhill.

If it helps, I'm here for you and wish I had an answer for our problems. Take care, Shay. I'm going to try and get on here regularly. :]

[Sara]

Posts : 26
Join date : 2011-01-01

View user profile

Back to top Go down

having a terrible week

Post  shay on Mon Jan 03, 2011 4:04 am

thanks everyone

i really appreciate the advice and im currently in bakersfield and will see a specialist on wednesday so hopefully that will lead to some relief and im also currently seeing a physical therapist an will see how that goes but im am having really bad flare ups that include rawness, itching and burning and i need some sort of relief soon because it is taking away from who i am and taking control over my life.

@sara ium also currently a senior and my quarter starts back on the 6th so im am trying to prepare for the stress of school while dealing with this private issues lol ............. heres my email if you wanna chat msporshay@yahoo.com

@jules are there side effects to the pills, if so are there better than the issues of vulvodynia so you deal with it.

@admin what is nappy cream

@kate i will be looking up your post for some solutions i havent tried

shay

Posts : 7
Join date : 2010-12-30

View user profile

Back to top Go down

Re: 22 years old, unhappy and miserable

Post  jules on Mon Jan 03, 2011 4:18 am

I have not had any side effects from my medications. None on gabepentin. i gained a little weight w/ lyrica but, i wasn't working out and was eating and drinking alot. i have sense lost 5 pounds and i am back working out. so can't blame the lyrica. years ago i tried amitriptyline. i did have side effects. i was exhausted and felt like i was in a dream for 2 weeks. i went off that. it was for headaches. i have been very lucky w/ side effects. you may want to ask for a vicodin for the pain. it does help if you can catch it before it gets real bad. also try cool gel packs left in the refrigerator. that cools the area. good luck. i'll send you my e-mail. are you on our facebook page?

jules

Posts : 225
Join date : 2010-03-17

View user profile

Back to top Go down

Re: 22 years old, unhappy and miserable

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