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» 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 …

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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 …

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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



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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 …

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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, …

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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 …

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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 …

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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 …

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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 …

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Just needed to let it out

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Just needed to let it out

Post  tweety on Sat Jun 19, 2010 12:31 am

It's all just been building up for a while... I don't have a place to vent or share because I spend each day putting on an act pretending that I'm ok. Although my closest GF know about my condition, I can't talk to them about how I feel... because right now, the topic of conversation within my group of gal friends is wedding plans, engagements, shopping for rings, baby showers.... I'm just over it and need a break from all of that. They're all getting married/engaged this yr. I just need a break from hearing about it or seeing it....

I actually took a day off work this week because I wanted time to myself. Then that nite I had to go to a friend's house to discuss how we would decorate her house for the engagement party.... AaaarrrGGHH! i've "volunteered" to make the engagement cake too... Bloody hell!!! I'm over it.

I'm still living at home and no-one in my family knows about this. Sex is a taboo subject so I never really have a chance to just let it out and cry. That's all I feel like doing right now.

Last nite just pushed me over the edge. I went out wif some friends (which included my most recent ex)My ex and I are on good terms... We were having coffee and a girl had called him up... that just felt like a stab through the heart. Then we went to a bar for drinks and stuff and I could tell it was awkward... He's having a perve on the girls but not wanting it to be obvious because I'm there. In the end, I just left.

I seriously just can't hangout with any of my close friends. And I can't tell them that sometimes I'd rather just not catch up because I don't wanna hear about your wedding dress, I don't wanna hear about how much your BF loves you and your getting engaged, and I don't wanna hear about how you want babies when I can't even have sex!

Right now, all I want is a hug... a shoulder to cry on and I don't have anyone who can do that for me.... *sobz*

Anywayz, just sharing

Sue

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Re: Just needed to let it out

Post  Sarah001 on Sat Jun 19, 2010 11:24 am

Tweety I know just how you feel, I've been having bouts of avoiding my friends for a while for years. At first it was because of my joint problems and I couldn't do all the stuff they can, some of them no longer contact me for that reason, and now it's because as you say they are all planning weddings and having flings with people and obviously I can't even have sex with my partner! My partner is getting annoyed about the situation like I'm doing it on purpose so it's causing problems between us too. There's no-one I can really talk to about this, only one of my female friends knows about it and she's so busy with her exciting new business and relationship she clearly doesn't understand how it feels to be me.

The best I can do is send you a virtual hug and tell you you're not on your own and if all us women keep communicating sooner or later we will all find ways to cure or manage our problems.
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Re: Just needed to let it out

Post  tweety on Sat Jun 19, 2010 12:15 pm

Thanks Sarah... a virtual hug from someone who, at least I'd know would understand, does make it better. I don't always feel like this. I am truly happy for my friends and all but it's just getting to be a lil too much. I've got to stick it out til April next year for all the weddings.

I've been thinking about how lovely it would be to live elsewhere for a while (i.e. overseas) just to get away from it. But I know I have a good thing going right now in terms of treatment. I have a doctor who has heard of Vulvodynia and specialises in the "vulva" area and a physiotherapist who has worked with people with pelvic problems. So I'm just going to have to stay put for my treatment.

Cheers,

Sue

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Re: Just needed to let it out

Post  naomi on Sat Jun 19, 2010 8:48 pm

hi hunny,

Heres a massssssssssssssssssssive virtual hug from me....as long as I can get one back Smile
I too am fed up and so mentally tired of putting on the "happy" act in front of people. I've had it up to here with acting....now I'm at my folks house in pj's after crying my heart out.....stuck in a nightmare that just wont let me out.

The only things I can do to briefly take my mind off my raw la-la is cross-stitch...yes I knw it sounds sad....Im 28yrs old, boyfriends at his flat. and im at my parents doing this long and feeling like crap!...Really ought to be dressed up in a wine bar with friends, But I just cant hack it Sad

Oh pooooo im probably making you feel worse, sorry.

But yeh, you are not the only one. Im right here in sunny England xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

BIG HUGS ALL ROUND XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
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Re: Just needed to let it out

Post  tweety on Sun Jun 20, 2010 2:35 am

awwww thanks Naomi.... *BIG bear HIGZ* right back at yah! hehehe

yeh, I've been baking cakes and make jewellery.. but what I really want is to be able to call a friend to go out with and be able to vent and cry.

I can't believe you're in SUNNY England.... its grey, cloudy and drizzling in Melbourne. Then again it might change to sunny in the next hour...HAHAHA

I don't know how I'm going to get myself out of this mental rut. I have my appointment with a counsellor coming up so that always feels cathartic... I get to just cry it all out.

Do you reckon it would be ok if I passed on helping my friend decorate her house for her engagement this week? My other GFs will be there to decorate... I just don't know if I can really motivate myself to put on a whole happy act for the night without shedding a tear. I am quite emotional this week... it's just been building up for too long

*HUGZ* xoxoxox

Sue

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Re: Just needed to let it out

Post  jules on Sun Jun 20, 2010 4:32 pm

Hugs to all women suffering across the world. It is amazing how many women across the world suffer from Vulvodynia. We are not alone. sue, I think it is just fine to opt out of helping at your friends home. you can just say you don't feel well...and that's true. this disorder and the feelings involved are hard to run away from. Its interesting many of you haven't told people. i have told all of my friends, my family and many coworkers. I think it is a great way to educate others about this disorder and of course, we did not do anything wrong to get this disorder. As I mentioned earlier, I have been where you are emotionally. I actually increased my anti-depressants. That helped alot. I stopped crying everyday. The thing that helped most was a decrease in my pain. The mix of medications I am on is helping. But, I still have my days. I feel bad for those of you who are having a difficult time finding a man or trying to keep him as a result of not being able to have sex. There are other things besides sex. I mentioned I have been married for over 20 years. I have a very understanding, patient husband. I am fortunate. He has heard me complain about my pain over and over again. He asks me constantly how i feel etc. Sometimes...i think he is so sick of hearing about it he half listens.

I want you all to know, You are not alone. you have a right to feel bad for yourself and you will find relief at some point. keep on writing...it is very therapeutic!

julie

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Re: Just needed to let it out

Post  Sarah001 on Sun Jun 20, 2010 6:16 pm

You're absolutely right Julie there are so many women with the same problem but I'm always surprised how few of them actively participate in forums such as these, the more of us who post the better the chance of some of us finding a connection or a solution. My partner and I have been together for almost 13 years but I just think he's so sick of all my painful problems he's thinking it's not what he signed up for! He's already had to do the 6 years of my joint problems which badly restrict me and cause me huge amounts of pain then all of a sudden I have vulvar issues too. I don't really blame him for being a bit fed up if I'm honest!
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Re: Just needed to let it out

Post  tweety on Mon Jun 21, 2010 11:08 am

hey guys....

its good to know someone is listening. they do say about 5% of the female population will have this condition... that's 1 in 20.. the stats somewhat make me feel better. I guess the reason I haven't told people is because with my culture and my parent's generation sex is not something we talk about openly. It's assumed you're a virgin until you're married so you can see why I'll never tell them of my condition.

As for telling friends, I think I've just had to deal with this for what feels like such a long time that even just thinking about it makes me burst into tears. My close GFs know but I just get so upset even thinking about how it makes me feel.. I don't think they want to upset me by asking me about it.

Anyways, I've decided not to help out with the decorating. I really am feeling emotionally unstable this week. I'm just scraping through at work.

I'm not sure how I feel about increasing my anti-depressant medication. I'm on low medication right now and its purely for the vulvodynia. I don't want to think I'm at the stage where I need to be medicated for depression but I have a feeling that I probably need something as I'm just feeling extremely emotionally fragile right now. I have my appointment with the my counsellor on Wednesday... Thank god!

And I've decided I desperately need a holiday. I just feel like I need to take myself away from my current environment... somewhere I don't feel like I need to be happy for someone else, or feel resentment of my friend's lives.

Anyways, take care and chat soon

Sue xxx

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Re: Just needed to let it out

Post  Sarah001 on Mon Jun 21, 2010 11:15 am

I think you're right to say no to certain things, I do when I can't manage them. Us women have such a hard time saying no to people and really we should put our health first and not feel bad about it! I heard the figure was actually 15 - 16% of the female population so that's even more women with the same problems we have!

Stress doesn't help with the situation either, I try and spend a little bit of time each day just relaxing and breathing. Stress messes up the hormones in the body and makes us unable to fight off inflammation so trying to keep stress levels down is a good thing to do. I know it's easier said than done but you could ask your counsellor to teach you some relaxation methods.
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Re: Just needed to let it out

Post  tweety on Mon Jun 21, 2010 11:39 am

Yeh, I really need to learn to relax. I've been having trouble sleeping early and getting enough rest. I must remember to ask my counsellor because I know she was going to show me techniques too.
=)

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Re: Just needed to let it out

Post  jules on Mon Jun 21, 2010 6:09 pm

Hey tweety,

You definitely do not want to increase your meds unless it is necessary. For me, it made all the difference in the world. I was feeling hopeless, almost wanting to give up w/ the thought I would have to live w/ horrific burning pain all the time. The anti-depressants pulled me out of that. Of course, my other meds that helped w/ pain helped as well.

We are care-takers. The first person we need to take care of is ourselves. I love to hear that you plan to learn techniques to relax. My technique is t.v. and the internet (ha ha) I just finished three years of school so i LOVE my free time. It is awesome to connect w/ other women who know how I feel. Thanks for being there...talk to ya soon!

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Re: Just needed to let it out

Post  tweety on Tue Jun 22, 2010 10:40 am

hey jwjules,

Yeh, I'm actually a very high strung tense person and my mind does not switch off. If I'm not stressed and thinking about work I'm thinking about cake designs. Ever since I did a cake course 1 month ago, my brain stays up til 1-2am thinking about my next cake design.

I can actually feel my muscles stiffening up because I haven't been doing my physio exercises as much as I could. And I'm more aware of my achiness and pains.

I think I'm actually feeling a lil better than I was last night and over the weekend. It must help being able to share this with others... feels less lonely too.

anywayz, xoxo

Sue

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Re: Just needed to let it out

Post  naomi on Tue Jun 22, 2010 5:36 pm

Cake design's a good idea! I try to do cross stitch everyday just to take my mind off things but most of the time Im just a complete stress ball!!

I tend to get very introvert in a way and close off from friends, not answering the phone etc etc. I know I have been like it for a few weeks again now but its been exactly a year since I was signed off work...makes me feel so pointless. I try to be positive and do volunteer work but that usually doesn't last very long, then i feel guilty about letting people down, even though they know the score.

Ive been seeing a (spelling is horrendous!!) phiciatrist/counsellor,since last aug/sept every week. I went to her because my GP sent me telling me i was causing my condition due to my anxiety...which stressed me out even more as it is NOT in my head (I could have swung for git). Within 30 mins of my initial assessment she told me it wasnt in my head.

I just can get out of the 'feeling sorry for myself'. Other people seem to be able to with this condition but I cant get myself into a good place and just dont cope.

How do you keep yourselves' strong??? being so sore and raw all the time makes me so upset, no sex (which i know isnt the bee all and end all) but Id do anything just to feel normal and happy again. Man what Id do to just feel happy and drop all this anxiety and stress.

Its easy to say 'dont get so stressed as that wont help matters' but my brain just doesnt listen!!! stooopid brain.

Today I did the usual, wake up with a start, head races, stomach just churns, then i try to squeeze my eyes closed but cant get back to sleep. urghhhhh, its like stage fright!

I stayed in all day and did some sunbathing/cross stitch, Im not usually a sun worshipper but Im going to Turkey on Friday with my best mate. I booked it a few months ago when i wasnt feeling so bad or as sore/raw. So im really struggling to calm myself down to go. Ideally I wouldnt go but I can cancel it with my mate Sarah.
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Re: Just needed to let it out

Post  Sarah001 on Tue Jun 22, 2010 6:43 pm

Personally I stay as relaxed as possible with self hypnosis, I'm actually a qualified Hypnotherapist so it's easy enough for me to do that. I don't think stress causes the problem but it does make it harder for the body to heal because it disrupts the immune system.

I don't think I am managing to stay strong, at the moment I'm still trying to rule everything out so it's occupying my mind so I don't obsess about it. If I get to the stage where there are no more options I don't know how I'll react, when I got told there was nothing except a life of ever increasing painkillers for my joints I sank into a deep depression and had only just managed to drag myself out of that and accept my fate when this vulvar problem started. Believe me I feel sorry for myself too and don't know why I have to have all these painful conditions, why can't life just cut me a bit of slack for once?!
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Re: Just needed to let it out

Post  tweety on Fri Jun 25, 2010 1:20 pm

Hey gals,

I know how you feel... It's hard to feel anything else about this condition but sad that you have it. And it is hard to stay strong and keep on trying when nothing seems to really work.

So for now, I say find some pleasure in something else in life. That's what I'm trying to do.

Naomi - Sounds like you're becoming an expert at cross-stitch. What do you do with all the things you've created? It sounds like you're being too hard on yourself. Really. It sucks having this and there's nothing wrong about feeling that way. And trying to cope with this is stressful - I keep my sanity by seeing the counsellor. If I didn't, I think I would have just cracked it long long ago.

Sarah - I think it's great you're continuing to find new options. So keep us posted.

I'm still getting through my emotional breakdown. The highlight of my week has been the delivery of my cake boards. How sad is that? It did cheer me up a little. It was like opening up a pressie. Besides that, everytime I went for a toilet break, I would start to tear up in the cubicle.

As for relaxation - my counsellor will send me through the techniques when she finds it. I really need to learn how to relax. I've lost so much sleep lately. And my breakdown hasn't helped my progress or lack of progress at physio...

It seriously is just too overwhelming sometimes.... *Hugz* to you all gals!

Sue

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Re: Just needed to let it out

Post  naomi on Fri Jun 25, 2010 3:11 pm

man we all are friggin brilliant though for getting through this! Smile And I know we are all online and 'invisible' but it does mean so much to have people who can relate. Thanks so much for being out there but im not thanking your condition one bit!!!

Evil or Very Mad

Im currently waiting to go to the airport - Turkey, Im so worried about being away from my comfort zone (mum and dads house, sofa, hugs etc). I fret that I might get so down and my best mate has to cope with me on hol and i'll spoil it for her Sad My moods just go up and down and so unpredictable!! Not moody or PMT at all but low, 'despair' I know that sounds like a strong word but thats whats its come to after so long. So planning trips, evenings and social things have to be played by ear.

Im babbling again!

~Sarah! Im only doing a winnie the pooh cross stitch but its about 30cm x 30cm....taking me soooooo long to do!!! I'd like to find some funky modern ones that would sell if I framed them but Ive had a look around and found none! So if anyone can recommend?!


If anyone is in England and wants to do a day retreat etc I can recommend this place.....

http://www.globalretreatcentre.org/retreats/odr.html?event_id=483

I went last year with my friends and is very very good. Run on donations too so there is no set fee to pay (good for me as Im now on shitty benefits) I'll be booking another day retreat when I get home from holiday, so if anyone fancies it?

Right, deep breathes. Im off, speak to you soon.

HUGE HUGS FOR YOU ALL XXXXXXXXXXXXXXXXXXXXX

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Re: Just needed to let it out

Post  tweety on Sat Jun 26, 2010 5:58 am

Hey Naomi,

I think you should make the most of your getaway to Turkey. Just enjoy it and let it be. Your friend is there to support you, so trust me, you're not ruining their holiday.

As for you're cross-stitch... its sounds gorgeously cute! You'd be what designs actually sell. I think if you put it into a modern simple frame.. like a white frame that's deep... it would look fab!

Anywayz, take care

Sue

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Re: Just needed to let it out

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