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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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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: 22


cannot cope anymore

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cannot cope anymore

Post  smile22 on Tue Feb 07, 2012 11:49 pm

Hi, I just found this website today. I am 19 years old and first started suffering badly when I was 15. I can't sit here and share my history of this today as I am in such a bad frame of mind I think it may just reduce me to tears for the fourth time today, so maybe I will share that another day! To put it simply I started having sex and went on the pill and everything was fine, then 5 months later the problems started, and it has progressed from pain during sex and my period to how it is now 4 years later - 24/7 pain that has completely taken over my life.

PROBLEM - I have unprovoked vulvodynia which burns 24/7, there is no time when it is not hurting me. My relationship with my boyfriend who I have been with for over 4 years is really suffering. I cannot have sex, and haven't for so long that I don't even remember the last time I did it, certainly not within the past 2 years. I do not leave the house. I cannot wear underwear. I had to leave a job I had just started last year. All I can wear is very loose very thin tracksuit bottoms and nothing else on my bottom half. I have no life anymore literally, I am just stuck in the house. I can't even go for a walk or do any exercise. I don't know how else to explain it other than I feel that this condition has completely stopped everything in my life and I am so down about it that I don't know what to do with myself. No money, no social life, no sex life and no happy thoughts any more.

TREATMENTS THAT I HAVE TRIED AND THAT HAVE FAILED -
-I have been on pretty much all thrush treatments..That includes creams, internal creams, pessaries, oral tablets, the LOT..this was when I was much younger and the problem began.
-I have also been on several types of tricyclic anti depressants which were supposed to act as nerve blockers, amitriptyline and some others.
-I have been given so many creams I can't even remember the names.. a few that spring to mind are hydrocortisone, daktarin, anti fungal creams, ketoconazole.. there are more but I can't think of names.
-I have also been on gabapentin and lyrica on several different doses, higher each time with no effect.
-I have also used lidocaine 5% which is a sort of ointment/cream..it is not a solution, it does not get rid of my pain, but it is the only thing that I have ever been prescribed which has made a teeny tiny difference, so I would recommend this. However it is still excrutiating, just a tiny bit less excrutiating!
................. I can't even begin to think of what other treatments along the lines of tablets and creams I have used because there are so many!

-Also I went to CBT therapy which didn't help, the therapist was lovely and tried to boost my confidence, but it didn't help in the way of my actual pain.

-In December I had steroid injections. I have been worse than I have ever been in the last 2 months and am going back to my consultant in 2 weeks.

I know that every woman who has vulvodynia is suffering and I would appreciate replies from all of you on this forum, but is there anybody out there who is at the same stage as me and can't even go out anymore?

Thank you for reading my post, I really appreciate that there are people out there that can empathise with what I am going through and to anyone reading this..I wish you all the best with your treatments and hope that you feel better ASAP. Also, if you are in the earlier stages of vulvodynia and have any questions about treatments that I have tried, please feel free to ask me anything!


Last edited by smile22 on Wed Feb 08, 2012 12:46 am; edited 1 time in total (Reason for editing : edited as I forgot to add that I had seen a psychologist/therapist whatever you call 'em lol!!)

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Re: cannot cope anymore

Post  pepper7 on Wed Feb 08, 2012 12:05 am

My heart goes out to you, I have cyclical pain-it comes mainly after my period and can stay anywhere from a few days to a month. I cant imagine being in your position and Im so sorry that you are so young and you have suffered like this. I cant offer anything in the way of treatment-it seem like you have tried it all but Ill let you know what has worked for me-I use betnovate when the pain it bad-I always seem to get a yeast infection after my period so I have to use a pessary and cream and it helps.
Im allergic to a lot of foods so I avoid wheat, dairy, sugar, yeats and corn and I do notice a difference in my pain.
As I said I cant offer many remedies as you seem to have tried them all but I can offer my support in any way
Pepper x

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Re: cannot cope anymore

Post  smile22 on Wed Feb 08, 2012 12:25 am

Thank you for replying Smile I really appreciate your support.
Have you ever thought about going on the mini pill to stop your periods for a while? I tried it before and it didn't really agree with me (contraceptive pills never seemed to agree with me!) but maybe it is something that would reduce the amount of time you spend in pain? Just a thought Smile. Also, the internal creams are good for yeast infections, you've probably tried them but if not I would recommend them as they used to be the most soothing for me when my problem first started. They're just like a pessary but cream instead.

I don't think I have tried Betnovate so I will mention it in my next appointment and see if its worth a try, thanks for recommending that.

Ah yeah I have read a lot about changing your diet to reduce oxylates or something to reduce pain, think I need to research a bit more though to distinguish what exactly I should cut down on.
Thank you so much again for your support, if you have any questions about anything that I have tried just let me know and I will be happy to answer them x

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Re: cannot cope anymore

Post  Sarah001 on Wed Feb 08, 2012 12:58 pm

I have unprovoked generalised V and VVS too and creams aren't going to fix diffuse burning so I'd stick to using nothing down there if you can. You don't mention anticonvulsants which can be tried to reduce pain so if you haven't tried them I'd ask your GP about Gabapentin or Lyrica. I also see no mention of physiotherapy, have you had you pelvic floor checked for tightness? It would be worth going down that route too. Some of the girls on here wear long skirts with no underwear when they go out or soft leggings. I understand your situation because I'm also very restricted about going anywhere because of the V and other conditions so I don't have a full time job (I have a part time one from home), have no social life and my partner left me because of my health issues so no sex life too so I do understand how hopeless you feel but you haven't tried everything yet so there are still options out there.
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Re: cannot cope anymore

Post  smile22 on Wed Feb 08, 2012 9:47 pm

Hi. I've already been on gabapentin and lyrica I did mention it in the 'treatments I have used and that have failed' bit, but thank you anyway, neither made any difference even though I was put on several higher doses over quite a long period. I had a 'tense test' for tightness before which left me in agony, but tightness isn't the problem because I never experienced pain at all not even during sex before. I believe repeated yeast infections from going on the pill caused the nerve damage leading to vulvodynia. Yes I was wearing leggings for a while but I realised that clothing that doesn't allow any air there seems to make it worse, I know it sounds silly but if I get at all hot there it is much worse. Thank you for the skirt idea though I will definitely try this soon. If you don't mind me asking what job do you do from home? I have been trying and trying to find something that I can do at home with no luck Sad. Don't worry if you don't want to say though Smile. Thank you for replying to my post I really appreciate your understanding and advice Smile.

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Re: cannot cope anymore

Post  pepper7 on Wed Feb 08, 2012 10:28 pm

Hi

Iv got insanely irregular periods so my doctor is making me stay on the pill for a year to regulate them (I have periods lasting up to 15 days sometimes sooooo not fun Rolling Eyes )
I also believe my vulvodynia was caused by constant yeast infections which is why I try and keep my the infections to a minimum-which is were the restricted diet comes in-I would recommend Good Gut Healing by Kathryn Marsden in regards to candida, food allergies, Leaky Gut Syndrome etc I find when I stick to her diet and follow her advice my symptoms reduce dramatically. For me Sugar is a Massive instigator of my V pain and when I avoid it the pain is definitely less.
I use a pessary for the yeast infection but Ill look into the cream Thanks Smile
I agree with Sara you should check the pelvic floor exercises Iv not tried them myself but I will be looking into them.
Px

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Re: cannot cope anymore

Post  smile22 on Wed Feb 08, 2012 11:10 pm

Hi again Pepper7 from my experience and many others that I have spoken to the pill creates thrush problems and so do periods, so I know you need to stay on it to regulate your periods, but you could maybe discuss trying a new pill or going on the mini pill where you don't really have periods. I know it's not really ideal but it may help because if your problem is cyclical then getting rid of your periods for a little while would, in theory, get rid of the problem. It may not be that simple but you could always research it or something. Just a thought as it may help to relieve your pain Smile.

thanks I will have a look at your recommendations for the diet changes, its just hard because well I love sugary foods and chocolate ha ha !!

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Post  pepper7 on Wed Feb 08, 2012 11:57 pm

Hi Smile22,

OMG me too! I miss chocolate sooooooo much!

Im going the doctors tomorrow for a check up (sometimes I need someone else to check its still all V pain and nothing else) and a referral but Ill talk to her about the mini pill too.
With the coming off sugar just try it one day at a time like have one day of just water, loads of fresh veg, plain meat or fish and judge the pain from there if its less try the same the next day and so on etc thats what I do and Im on my 3rd day of a relative pain free foof. I also have had two days without pantyliners which I have wore every day since I was 13-I reckon they cause a lot of problems too and its been nice feeling vaguely normal the past few days.

Thanks for the pill advice

Px

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Post  smile22 on Thu Feb 09, 2012 12:14 am

that's good, you never know one of these things may help your pain to completely disappear which would be great!!

i am quite a chocolate addict ha ha, i love fruit and veg but i get such bad cravings for junk food sometimes! thanks so much i will try sticking to that for a couple of days within the next week and see if i feel a difference from a normal day. fingers crossed Smile!

yeah, i cant even wear underwear right now, but i would say you should avoid the pantyliners completely, i used to wear them all the time too but its a good idea to try and get used to not wearing them, it will probably really help as its one less thing that can irritate you down there.

No problem I hope your doctor is helpful tomorrow Smile!!

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Re: cannot cope anymore

Post  Aussie on Tue Feb 14, 2012 2:13 am

Sorry to hear you are suffering. I had a period of time where I could not even tolorate underwear either. I have/had 24/7 pain also. Read into my herbs thread. I tried ALL of the antidepressent and anticonvulsant meds (word of warning Lyrica flared me terribly) I tried creams. pelvic floor therapy (VERY HELPFUL with sex pain but not with daily pain)

Advice:

Try evening primrose oil to regulate your periods and get off that bloody pill that started the process in the begining (I use EPO and it has got my irregular periods down from once every 3 months (pre pill) to every 2 months. Still not ovulating though. Stops all the pms and heavy periods too (i used to pass out from periods) I also get no yeast infections off the pill - sometimes it's hard to tell the difference between yeast and vv irritation but that yeast has gone since being off the pill.

Diet diet diet - NO Acidic food at all. (IC diet list on IC network)
Bicarb soda in a bath - it works I don't know why
I use a menstrual cup instead of pads/tampons to avioid irritation, but have taken to using it daily - stops the vaginal secreations from irritationg my vulva skin as it doesn't even get there (I don't have pain inserting things anymore though)
Get all your hormones tested from your GP.
Pelvic Floor therapy

Thats all I could think of for now that you have not tried.

Good luck!! xx

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Re: cannot cope anymore

Post  pepper7 on Tue Feb 14, 2012 10:58 pm

Hi Smile!

Hows it going?
I went to my docs and have been put on a months supply of Amitryptaline (sp) and a refferal to a gynie therapist (my doctor thinks I need some sort of sex therapy haha)
I still havent touched sugar and I have had virtually no symptoms since but I just got my period and my pain is always worse after my period so.........we'll see.
Px

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Post  smile22 on Sat Feb 18, 2012 4:12 pm

Hi Aussie, I am going to look at the acidic food and try to cut it out, its just hard because I am stuck at home so all I want is to eat eat eat because of boredem! Thanks I haven't been on the pill for about 3 years, I'm not sure if that bit was aimed at me or the other woman posting on this thread but my periods are pretty regular.
Yes lyrica is pretty rubbish! Did nothing for me :/.
I can't put anything in not even a milimeter so the menstrual cup is out of the question for now, but if I get better I may consider it as it sounds less irritating than pads.
Thanks so much, I'm going to see my consultant on Monday so I will suggest the hormone tests if they give me the time of day and see what comes of it. Thanks so much for your advice I will definitely look into the non acidic diet and herbs route! And I'm sorry to hear that you have the 24/7 pain like me Sad its so awful I wouldn't wish it on anybody X

Hi Pepper, not so good, I'm really struggling this week, crying all the time and just lying in bed cause of the burning Sad. I have been on Amitriptyline for a few months a couple of years ago, it didn't do anything for me but as your pain is a bit different to mine hopefully it'll give you some permanent relief! Good luck with the therapist, I hope they can help you. I really want to do the non sugar diet, but I just can't, its like because I'm stuck in the house all I can think about is eating lol! I have no self control with food its terrible! It sounds like you are really making some progress though which is brilliant, keep going :)X

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