Curiosity in reguards to Vulvodynia

I'm curious about a few things and would love everyone's individual input on their experience with Vulvodynia.

1) How old were you when the symptoms started?
2) How long has this been going on for?
3) Has it stopped before if so what was the length of time?
4) If it has stopped are you currently still in "remission"?
5) What are your individual symptoms? (burning, itching, aching?)
6) What do YOU think triggered this?
7) Where in your menstrual cycle do you find most relief?
Were you in a relationship when this began? If so are you still with the same partner?

Hi, yeah it'd be useful to see all this in one place!

1) 18yrs old when it started
2) Had symptoms for 7 years
3) It's never stopped for me
4) -
5) I only have pain when provoked. Most pain between 5 and 7 o'clock position. But redness all round vestibule.
6) Really don't know what caused it. Either.... the Pill (though pain started after i'd stopped taking), some sort of chemical irritation, or pelvic floor. Though pelvic floor problems could be perpetuating the problem rather than what caused it.
7) I'd say I have the least pain mid cycle (during ovulation) - definitely worst pain just before and during period.
I was in a relationship when this began, and no not with the same partner. I think this had a lot to do with it.

I'm game.

1. 36
2. Nearly 2 years
3. Never stopped
4. ---
5. Diffuse burning in outer areas and rawness and redness in vestibule.
6. Definitely pelvic floor dysfunction plus having an unstable pelvis due to HMS
7. Just before a period and the first couple of days of my period
I was and he left me because of the V despite being together for 13 years before that. Not in a relationship now.

Thank you for responses.

1) 22
2) May 2011 so about 5 months
3) Hasn't stopped but it seems to be getting better as time goes by, about a 1 or 2 now.
4) -
5) Burning
6) Either birth control or antibiotics for BV
7) Before and during my period I find the most relief.
Cool Yes, and still currently dating.

hello peps!

I cant bloomin' sleep so thought i'd catch up with the forum!

1) How old were you when the symptoms started?
18yrs...sex started it...yeast infections. followed by UTI's from the age of 20. Progressively got worse and developed into vestibulitis.

2) How long has this been going on for?
since 18yrs. last 3years got v v bad.so overall nearly 12years. great

3) Has it stopped before if so what was the length of time?
no never stopped.

4) If it has stopped are you currently still in "remission"?
-
5) What are your individual symptoms? (burning, itching, aching?)
red raw around vaginal opening, esp in lower area, bit like a horseshoe shape (so my gynae tells me)

6) What do YOU think triggered this?
YEAST YEAST and YEAST. continual self treatment over 9/10 years (after first doctor tested positive for yeast/thrush)

7) Where in your menstrual cycle do you find most relief?
i dont

Were you in a relationship when this began? If so are you still with the same partner?
I hid it from all partners up until it got bad 3 years ago. We split up over a year ago as he couldnt cope with me (i was a tearful scared witless mess). he was also a nob Now with a lovely boy, never had sex-sex...anal if u count that? but very loving, cuddles and kisses.

ooo i love answering quizes and questions, ta for that!! xxxx

1] 14/15 was when I first realised something was wrong, it could have been there all along, but I had never tried any kind of insertion before.
2] Since then it's been 7-ish years.
3] No. I don't have constant pain like a lot of women, but my provoked pain has never stopped.
4] --
5] Aching when I stand up for too long (not always, only on bad days), severe burning/tearing pain upon any kind of penetration, constant burning/rawness after sexual activity, burning when sitting down in tight clothing (more uncomfortable than painful, except on bad days), plus all of this is ten times worse during my period.
6] Severe childhood trauma, imo.
7] I'm not really sure. I've just started keeping a pain diary to find this out. I know that during my period it is at it's absolute worst, and that lasts for a few days after it finishes. I think it's maybe at it's best about a week after my period.
8] No. I have never been in a relationship because of this. I was 17 when I first tried to get help for this problem. Before that I was uninterested in dating. Since then I have been so intent on trying to get help and fix this issue that I haven't attempted to date.

1) 20 or 21, for a while I was being treated for yeast infections and I did have at least one, not sure when they stopped and vulvodynia began.
2) A year or two depending on the above.
3) Again, I had periods in between what were diagnosed as idividual yeast infections of about 3 months with no vaginal pain symptoms, but since the vulvodynia diagnosis the pain has never been completely absent for more than a few days.
4) Nope.
5) A burning/itching around my vulva and anus, sharp pain on contact (e.g. penetration). I also have a feeling of weakness in my right leg which I think might be related, but haven't addressed this with any doctors yet.
6) I think it's muscular and triggered by stress, but hormonal and diet factors also play a part.
7) The couple of weeks following my period usually aren't too bad.
8 ) Yes and yes.

Hi! Happy to share.

1 – How old were you when the symptoms started?
16

2 – How long has this been going on for?
10 years, to one degree or another

3 – Has it stopped before, if so what length of time?
Never gone away *entirely* but have had periods of drastic improvement. Hard to quantify, but a couple of years ago I had a year where I was almost normal.

4 – Are you still in remission?
No, but working on things I hope will help and getting the pain under control slowly but surely.

5 – What are your symptoms?
Stinging & burning round the vulva. Occasionally deep, stabby pain and rawness. Pain always seems to be there to some degree even if it’s minimal and always on touch.

6 – What do you think triggered this?
The eternal question! It started 9 months after I first had sex, and I’m noticing while reading others’ stories that it does often seem to have first started about a year after first penetration. No idea what this points to. I did get a bout of cystitis a few months before the pain came on but can’t think that would be related. I think it’s my nerves & muscles that are keeping it going now.

6 – Where in your cycle do you find most relief?
While I’m on my period (though I distinctly remember that that used to be the worst time). Maybe it’s just the cramps distracting me from the vulval pain!!

8 – Where you in a relationship when it started & are you still with them?
I was, and remained in it for 7 years. There were multiple problems, him being unable to deal with the V just one of them. Better off without him, with someone lovely now.

1 – How old were you when the symptoms started?
20

2 – How long has this been going on for?
about ayear

3 – Has it stopped before, if so what length of time?
I had one night in August, which somehow we managed to have sex.

4 – Are you still in remission?
No.

5 – What are your symptoms?
Pain at the vulvo, accompanied with a burning sensation with penetration. Only symptomatic with intercourse, and the use of tampons/nuvaring.

6 – What do you think triggered this?
uh. dunno. started about 3 months after first try.

6 – Where in your cycle do you find most relief?
I have no idea. I don't try very often. I dont want to.

8 – Where you in a relationship when it started & are you still with them?
Early on, we're engaged now, off to be married in April.

1) How old were you when the symptoms started? 21
2) How long has this been going on for? Six years
3) Has it stopped before if so what was the length of time? Yes, a few months in 2008
4) If it has stopped are you currently still in "remission"? No, it came back in 2009
5) What are your individual symptoms? (burning, itching, aching?) Localized pain at the entrance with pressure; occasional phantom itching
6) What do YOU think triggered this? Either hormonal birth control, or my ex-boyfriend's huge penis (NOT traumatic, but possibly did something to my nerves??) Now it's to do with my muscles down there.
7) Where in your menstrual cycle do you find most relief? I don't think I do?
8 ) Were you in a relationship when this began? If so are you still with the same partner? No, I've been with many partners over the years. First time I noticed the pain was really bad was during a fling with a friend. Can't really stay with someone more than six months. My bipolar has been more of an issue than the vulvodynia.

1) How old were you when the symptoms started?
24


2) How long has this been going on for?
Two and a half years

3) Has it stopped before if so what was the length of time?
Never stopped, but severity comes and goes

4) If it has stopped are you currently still in "remission"?
N/A

5) What are your individual symptoms? (burning, itching, aching?)
Pain with touch, burning, itching, sharp shooting/stabbing pain, rawness, swelling, and redness.
I don't always have all symptoms at once. Pain with touch is always there, even on my best days. On my worst days, I seem to have most of these symptoms.

6) What do YOU think triggered this?
I think it was a yeast infection, but can't be sure since my doctor treated me without doing a culture. The yeasts meds did help a little, so I think I may have had infection.

7) Where in your menstrual cycle do you find most relief?
Not sure, seems random to me, but I have been really bad about tracking the pain. However, the blood and discharge from my period does seem to irritate me.

Were you in a relationship when this began? If so are you still with the same partner?
Yes, I was engaged. We're still together and married now.

Hi!

a) I was diagnosed with vulvodynia when I was 25, had been experiencing symptoms for 12 months before that though. I believe a bout of thrush triggered it.
I also got thrush for the first time when I was 18 years and had ongoing problems with pain and irritation for 12 months. I now think that I probably had vulvodynia then after having thrush but it was misdiagnosed as chronic thrush.

b) It has been nearly 3 years for me now. Lasted for about 12 months when I was 18.

c) I believe it stopped when I turned 19 and didn't return until I was 25, so I had 6 years of relief.

d) No

e) I experience pain around the entrance to my vagina on insertion of tampons or sexual intercourse. I also experience irriation every now and again and redness.

f) I think thrush intially triggered it, possibly tight pelvic floor muscles as I did get some relief from physiotherapy, and I believe mine to be hormone related

g) After doing physiotherapy for a few months, I was finding that I had a pain free period of about 7 days of my cycle. Pain was worse the week before, the week of, and the week after my period and then I had a week on basically no pain. Not sure what stage of my cycle that is? I am now 14 weeks pregnant and my pain is the worst it has ever been.

h) I was in a relationship when it first began at 18. Surprisingly, I got relief when that relationship ended. I then had a 4 year relationship and had no problems. I then began a relationship with my now husband, had no problems until I had a bout of thrush and have been having problems ever since.

Hope that is helpful

I love this idea!

Short sharp snippets into everyone elses conditions... Brilliant.

Here's mine:

1) How old were you when the symptoms started?
I was just about 19.

2) How long has this been going on for?
About 3 and a half years.

3) Has it stopped before if so what was the length of time?
It stopped after about 8 months when I stopped taking the pill. This lasted about 8 months, then started again. Boo.

4) If it has stopped are you currently still in "remission"?
Nope. Still back in the horror zone.

5) What are your individual symptoms? (burning, itching, aching?)
Burning when touched. Burning when sitting down. Itching when provoked. Agonizing burning pain during sex!

6) What do YOU think triggered this?
I think it must have been yeast infections & the 8 months of every treatment under the sun to cure it.

7) Where in your menstrual cycle do you find most relief?
I'd never really thought about this until a couple of months ago. It seems to get a lot worse for me about a week leading up to my period, then eases off when it finishes. So I'd say the mid two weeks for me!

8 ) Were you in a relationship when this began? If so are you still with the same partner?
The symptoms started about a year into my relationship, and amazingly my partner is still with me 3 and a half years later. Absolute angel.

Hi

Ooooh this is fun (ish) lol
Ok heres mine:
1) How old were you when the symptoms started?
11/13 I seemed to get an itch at 11 that would come and go from 13 onwards it was a virtual chronic itch.

2) How long has this been going on for?
16 years on and off

3) Has it stopped before if so what was the length of time?
Sometimes for a couple weeks or months there will be no problem then the itch again.

4) If it has stopped are you currently still in "remission"?
At the moment Im on day three pain free

5) What are your individual symptoms? (burning, itching, aching?)
Itching like the worst thrush ever, rawness around the vulva, burning at the entrance of vulva and burning/raw/ache at 5pm and 7pm

6) What do YOU think triggered this?

Untreated yeast infection when I was too young to know what a yeast infection was and possible damage to the nerves-when I was young I was at a dance class acting a fool and climbing over chairs, I slipped and landed on the arm of a wooden chair right on my pubic area.

7) Where in your menstrual cycle do you find most relief?
My period is the only relief I get, its the week-2 weeks afterwards that the pain is unbearable.

Were you in a relationship when this began? If so are you still with the same partner?
Im 27 and a virgin, relationships have failed because I cant let anyone get close and sex is out the question and I feel selfish making someone be in a relationship with someone who cant really have sex, friends and family think its a religious/romantic 'no sex until Im in love' thing but thats a total cover. Iv done everything but have penetrative sex, I would really really like to meet someone though but I get Im not one of those people who gets to do that. Ah well at least I have shopping!

1) How old were you when the symptoms started? 15

2) How long has this been going on for? 4 years

3) Has it stopped before if so what was the length of time? no it has just got progressively worse and I believe it has reached the worst point now and I am stuck there .

5) What are your individual symptoms? (burning, itching, aching?) constant 24/7 burning, sometimes an itch but its almost too painful to be able to distinguish it if that makes sense.

6) What do YOU think triggered this? going on the pill caused recurrent yeast infections which damaged my nerves. it is the only conclusion i can come to that is backed by medical opinions, but i can't help but doubt this in some ways because there are so many unanswered questions about vulvodynia, how can we really be sure.

7) Where in your menstrual cycle do you find most relief? i never find relief, but it is a lot worse the week before i come on and during the lighter days of my period - absolutely unbearable.

Were you in a relationship when this began? If so are you still with the same partner? yeh i am still with him now but this is really taking its toll on our relationship and has been for a long time.


.

1) How old were you when the symptoms started?
23

2) How long has this been going on for?
Year and a half-ish ...

3) Has it stopped before if so what was the length of time?
Nope

4) If it has stopped are you currently still in "remission"?

5) What are your individual symptoms? (burning, itching, aching?)
Burning, stinging, stabbing, itching

6) What do YOU think triggered this?
Could be any number of things...

7) Where in your menstrual cycle do you find most relief?
During my period-weird.

Were you in a relationship when this began? If so are you still with the same partner?
Yes, I was seeing someone. He dumped me.

1.) 22
2.) 7 years
3.) Occasionally I get days or weeks when it's better. I get good and bad phases with it. It rarely completely goes.
4.) No I still have it.
5.) Initially intense soreness and pain that seemed to start in my pelvic area and through the whole of my vagina, really bad pain like an ear infection sex would have been OUT OF THE QUESTION as I was in indescribable pain. Around this time I was screened for everything and told I had cervicitis and vaginitis, unknown cause. This perisisted for 4 or 5 months and luckily it disappeared (I'm so glad, I never want to be in pain like that ever again!)
Following that I had what felt like a recurrent yeast infection with burning just at the entrance of my vagina. This would come and go but it got to the point where this burning sensation was there more than it wasn't. Sex could be painful (like a burning sensation), sometimes I could have sex, and I still felt sexual despite the burning. This went on for 5 years.
Then I had persistent cystitis where I would have discomfort just before urinating, and again burning in my vagina, sometimes I'd get pain in the front wall of my vagina at a particular point (where your G spot is supposed to be I think), and my vagina was now permanatly sore, and burning seemed to be getting progressively worse and whereas before I wanted to be sexual and intimate I now didn't want that at all as it made me feel horrible...again this went on for a year, during which I had a bout of BV (which was awful...but got that treated thank god!!!)
The last few months things seemed to have settled down quite a lot. I've had periods of not having it at all but the last week or so just the slight burning at the entrance of my vagina.
6.) I think I had some kind of non specific vaginal infection that triggered vaginitis and cervicitis and when it was cured it caused nerve damage....or it may be due to yeast infections, or the fact I had pernicious anaemia (as it settled down after I went on B12 injections) or even persisted due to psychological causes because of how it's made me feel about sex.
7.) I tend to get it mostly just before and just after a period. Then it settles down more.
8.) Yes...the relationship fizzled (not just because of this) although I feel it was a factor in us splitting up as I became stressed about the sexual side (no pressure from him it was more how I was feeling myself), since then I've dated guys but haven't had a serious relationship as I tend to find myself ending it before it becomes sexual....although I realise a lot of people do have supportive and caring relationships despite their condition so I no longer think this means I can't have a relationship or even some kind of a sex life!

1) How old were you when the symptoms started?
I was 19 when the symptoms started (had sex for 2 years prior with no symptoms)

2) How long has this been going on for?
It has been going on for 4 years.

3) Has it stopped before if so what was the length of time?
It stopped when I started using lidocaine 6 months ago for the duration of 6 months. Initially, I was using the lidocaine every time I had sex, then I stopped doing it every time and there was still no pain.

4) If it has stopped are you currently still in "remission"?
Unfortunately, no. My condition is back again : (

5) What are your individual symptoms? (burning, itching, aching?)
Prior to this last relapse into it, my symtoms were burning in the lips during intercourse caused by the friction. Now, since my relapse, the symtoms are burning and itching from any touch at all, even washing down there.

6) What do YOU think triggered this?
I believe being on the pill for 7 years affected my hormone balance and that led to overactive nerves in my vagina. The nerves then receive what should feel like touching as pain instead. This current relapse, I have no idea what caused it. I think the lidocaine might have been healing the nerve endings and going off of it re-damaged them. Or this time it could possible be a uti or yeast infection, since there is itching now. Or maybe it's a combination.

7) Where in your menstrual cycle do you find most relief?
Not sure yet, since my condition just started up again a couple weeks ago. It seems worse prior to my period and I am thinking it will be better after my period.

8)Were you in a relationship when this began? If so are you still with the same partner?
I was in a long term relationship when it started. I am no longer with him. I have been with 3 other men since him and have seen no difference in the pain with any of them, except with the one prior to my current one. There was no pain with him, but that was when I was in remission. And he was actually larger than the 1st 2 guys, so it wasn't a size thing. However, he was not circumcised. I think that helped a lot on reducing the friction.