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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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NEW MEMBER: Not diagnosed but sharing symtoms and history

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NEW MEMBER: Not diagnosed but sharing symtoms and history

Post  mmorgan on Thu Jul 14, 2011 1:09 am

I have been experiencing this burning sensation for about 3 months now though it has a mind of it's own. In November of 2010 I was diagnosed with HSV-1. Fast forward a few months later in April of 2011 was told I had BV, took antibiotic's cleared that up and began to take Femdophilus. Two weeks later I started experiencing the dreaded burning sensation. I thought it was because of my recent birth control dosage up-age and so I discontinued usage of the birth control and Femdohpilus to see if the pills had anything to do with it. At first it was the part above my urethra and it felt like someone had a lighter to it, it was not constant and would come and go. I went to Planned Parenthood and was told there was no infection and was given pyridum. That helped but still had this burning sensation. After traveling from above my urethra it went more internal into my vaginal opening. Two weeks ago I began taking 2 Advil every morning along with a Femdophilus morning and evening. Things started to feel way better, actually felt normal again until recently right after my menstruation. The burning is back but not as intense, I just want to know what's wrong with me! I had made an appointment to a OBGYN/GYNO but cancelled it after I started feeling better. I feel like I jinxed myself, anyone have had the same symptoms? I'm a bit of a worry-wart and have an obsessive personality which led me to this site as to some of the symptoms seem to lead to Vulvodynia.
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Hi, you have a lot going on....

Post  Mary on Thu Jul 21, 2011 9:21 am

You sound like I did some time ago.
I have had thrush, followed by UTI's, followed by random itching, burning, swelling...on and on.
The difference is that I just put up with it.
For about 20 years :-)
The wonderful thing is that you are in a time when doctors are becoming aware that a lot of these symptoms are connected.
I feel that you are very stressed about this...I understand that too.
It is hard to advise you on what to do with your complex range of symptoms. It sounds like you have had some medical intervention already.
The key thing that "clicks" with me is that you cancelled when-you-felt-better....!!!??? That is when you should allow yourself to speak about your situation. When you are NOT in physical crisis is when you should try to get a candid diagnosis. But we do that, I have done that. You think, I can cope, I will just get on with it.
Try again.
Keep knocking on doors and asking who to talk to...you haven't found the right medical carers yet if you are here on this Forum asking for advice.
I am Mary of...
www.happyinmyskinnz.blogspot.com.
Take care x
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Re: NEW MEMBER: Not diagnosed but sharing symtoms and history

Post  Sebby (Admin) on Thu Jul 21, 2011 7:31 pm


Welcome to the forum,

Deff go back and see a gynea if they cant help then see a Vulval Specialist

Vulvodynia just means pain in the Vulvar and describes a range of painful symptoms. Dont get too hung up on the label just try to find someone that can help you

Have a read of what the other members have posted and see if you can relate to any of it and if any of it can be of help to you

You have had a rough ride and I do wish relief for you

Dont ever give up looking for answers and treatments. Its not obsessive its what anyone would do when in pain


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Re: NEW MEMBER: Not diagnosed but sharing symtoms and history

Post  mmorgan on Fri Aug 05, 2011 3:50 pm

Thank you for all your support. I have not had a chance to reply but I have an update and some questions in hope that maybe they could be answered.
I was scheduled for an appointment for this Monday, (had to wait a whole month) then I get a call this morning and my luck that the doctor wanted to request that day off and I would have to reschedule. Thankfully it was just a few days later on Thursday. So with this I'm wondering what questions I should be asking. I mean I know how I'm feeling but I'm afraid I'm going to forget something. I will be paying for this visit out of pocket, due to the fact that I do not have health insurance so I want to make sure I make this visit worth the $200+ bill. I'm most afraid of leaving her office with no answers.
Also a couple of weeks ago I got a UTI. I never use anti-botics, I always just flush my system out with tons of fluids. So I got rid of that and during this UTI my vaginal burning disappeared. The only time I felt discomfort was after sex. I had been suffering for about 2 1/2 months and this was the second time the burning magically disappeared. Does anyone else have these moments of relief? It's almost two weeks then my period starts and I felt burning on my cervix but today I seem fine besides the usual menstrual cramps. I'm so confused at what is happening with my lower half it's driving me crazy! It's always something and like everyone else I'm desperate to feel good again!

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hi

Post  Melissa777 on Fri Aug 05, 2011 5:04 pm

Hello there! and welcome to the board.
Okay first symptoms can mean varying things, as Im sure your aware. For instance burning can= infection caused by yeast, parasite (trich), or bacteria, latex allergy to condoms, even food allergy<<yes food allergy, or simply no infection at all... but Vulvodynia-

Here is what I would suggest:
A) Don't have sex again until after you are seen from a GYN or even gen pract if you know of a good one...

B) Request complete cultures and sensitivity (to determine which drug works best on an infection) done- Get these tests 1) Yeast/Fungi culture (candida probe), Bacterial culture for BV and Trich, and routine genital culture- which will test to see if you may have overgrowth of something like group B or A trep, e-choli, etc:
Especially since your prone to UTI- you may have some sort of bacterial infection going on. Don't just let them get away with swabbing you and looking under the micro scope- because this is not completely accurate... and in my case i was misdiagnosed with an infection once this way, and treated it with boric acid- which is what led me to having vulvodynia. Then my culture results later came in showing NO INFECTION- oh doctors suck sometimes!

C) after your lab results are in- if your negative try and seek out a vulvar specialist. They are hard to find... but some of us on this board can help if you let us know where you live, we may point you in the right direction.
- But if your positive for infection make sure you know exactly what infection you have- what strain of bacteria, yeast, or parasite.... if its "heavy growth", "moderate growth", etc;

D) if you need an anti biotic- please REQUEST diflucan or other antifungal to take after the antibiotic to avoid a yeast infection. Also take a good pro-biotic 2-3 hours after every anti biotic (dont take it at the same time)

E) If you need an anti fungal- make sure its the right anti fungal. There are MANY oral anti fungals... each work on different kinds of yeast. Albican and non albican yeast.<< this is why its important to know what strain of yeast you have.

For instance if you had candida glabrata- diflucan usually wont work UNLESS you take 1 pill at at least 100-200 mg a day every day for at least 2 weeks to a month.- this is because glabrata is resistant to azoles.. generally they have you do boric acid suppositories for this.<<which i dislike.

But there are other anti fungals that can work, most doctors dont like to give them because they have side effects.

There are also natural approaches to treating bacteria and yeast issues... but you really need to find a good holistic MD for that.
Don't try and do remedies on your own, as they can make you worse. Some natural anti yeast supplements have anti biotic compounds like berberine in them which can disrupt your gut flora and make issues worse.


You may simply have an infection that needs to have a medication

Oh BTW- try to ask your doctor to not use any vaginal medications since your irritated there- ask for oral.
Metro gel for BV can make you more irritated...
although, I prefer clindesse vaginal cream over metro

and many of the topical (vaginal) yeast creams seem to cause women to get Vulvodynia due to the base of the cream

There are natural yeast remedies like Yeast Arrest by Vitanica

so make sure you get a good doctor who will listen to you and take time to help you.

Hope this helps
=) Melissa

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Re: NEW MEMBER: Not diagnosed but sharing symtoms and history

Post  JustWantHelp on Fri Aug 05, 2011 8:04 pm

I know how you feel, it is very frustrating! I think the worst part is not knowing exactly what it is that is causing the pain and discomfort. Mine started almost 2 years ago right after a REALLY bad yeast infection. It felt like my skin was really tight, and it was on fire. It is itchy on and off but never really too bad. The worst thing for me is the burning. It it the worst after I get out of the shower, if I don't put something (ANYTHING) on down there such as Vaseline or steroid cream I have the tightest feeling in my skin and it burns! I could go on and on about the things that make it feel worse but the shower...that's the worse What a Face
I have been to 17 doctors and have been told that it is lichen sclerosis to use steroid cream, that works for a couple hours and then burns worse than it did before! I have been told that it is herpes...I have been tested by swab and by blood and all my tests not only for that but for everything have been negative. I have been told that it is all in my head and that I just need to go relax...BIG insult I must say, just because YOU don't see anything doesn't mean that I am NOT feeling anything! UGH! I have been treated so many times for yeast when I know I didn't have it...Nobody seems to want to help me and the ONE doctor that really does act like he cares is the one that keeps telling me it is lichen sclerosis and says that vulvodynia is def not what I have! But I keep using the steroid cream he gave me in hopes that it will help and it is NOT..So I really know what you are going through, it sucks!! If you figure it out let me know and I will keep you posted if I get mine figured out...I hope you feel better soon!


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Re: NEW MEMBER: Not diagnosed but sharing symtoms and history

Post  mmorgan on Sun Aug 14, 2011 8:59 pm

I had my appointment Thursday. My doctor sat down and listened to everything I had to say then began a yearly exam. She told me that I didn't have much discharge and she would check under the microscope but from what I had told her she thought it was yeast. Now what scares me is that she made this diagnoses without scientific proof but from visual inspection. I'm afraid to use any yeast infection medicine if there's no proof there is infection considering the last time I used antibiotics is when this whole fiasco started. What would you do? She said the results of my pap-smear would be available in 10 days but does that include the findings of yeast or bacteria in my discharge?
After my pap-smear I had bleed for 2 days and today I had yellow tinted thick discharge. So could I really have a yeast infection since my discharge is thick? I'm so confused and frustrated because there is no way I'm going to medicate myself if I'm not for sure there is yeast. My burning went from like a lighter to feeling like there's a heating pad in my va-jay. I don't have any external skin irritation but internal burning (no swelling or redness). If this is a yeast infection what medicines should I avoid for further irritation? confused
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Re: NEW MEMBER: Not diagnosed but sharing symtoms and history

Post  Sebby (Admin) on Mon Aug 15, 2011 12:15 pm


Hi there, I would feel the same and would want proof that it was yeast. There is no reason why your doctor cant do a swab and send it off to the lab for results.

It would probably take a week or so for the results. Personally I would avoid creams and pessarys and use an anti-fungal oral pill. Speak to your doctor first to make sure you can take the oral pill/s and to discuss any possible side effects if you are worried. I dont think they give antibiotics for yeast as its fungal and not bacterial.

I do not think smear tests include any yeast or bacteria results, unless whilst doing the smear the doctor also took an additional swab to send off for yeast/bacterial test. This is possible so do call them up and double check.


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Pap results and frustration

Post  mmorgan on Wed Aug 17, 2011 3:23 pm

Upon this already dreaded and frustrating journey, my Gyne called with my pap results. They found low grade abnormal cells on my cervix and want to do a colposcopy. Honestly I don't even care about the abnormal cells I just want this burning to go away! Telling me it's yeast with no proof doesn't do me justice. No Where are all the compassionate people in the medical community? I'm so frustrated but I'm very thankful I have a supportive family and boyfriend but I feel like a burden to them. I don't like for them to see me pain and I know they get frustrated sometimes.

Sure I feel better than when this all started but all I find myself doing is dreading that the level 8 pain would come back. Sex is now back to being pain-free *knock on wood*, but there are random times in the day where the shots of level 2 pain do surface. Like I have stated before I do not have external irritation my burning comes internally and never in the same spot. Wish this had some consistency instead of waking up and wondering what is today going to bring? I have some questions to ask for those of you who have been dealing with this for quiet sometime.

1) Is there such thing as "remission"?
2) Does your pain fluctuate? (I take no medication nor do therapy)
3) The cotton swab test, is that a definite deal breaker with having Vulvodynia? (Tried this myself and it didn't trigger burning)

I feel odd compared to everyone else's stories. Mad
Does anyone know of any specialist's in San Antonio, Texas?


Last edited by mmorgan on Wed Aug 17, 2011 3:50 pm; edited 1 time in total (Reason for editing : Added question.)
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Re: NEW MEMBER: Not diagnosed but sharing symtoms and history

Post  Mouse on Thu Aug 18, 2011 10:33 am

Have you got generalised unprovoked V? That's constant pain and not pain to touch. If so the cotton swab test probably won't be an issue for you. If you have generalised, the pain does fluctuate and we're all hopeful that one day it will just bugger off.

It seems to be cyclic with some of us and more intense around period time. My pain is back to around 2/10 now. It's mainly at the top left but does move around. I think that's because it travels around the pudendal nerve.

Yes I do believe it goes into remission and I think for some women it goes away. We live in hope.

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Re: NEW MEMBER: Not diagnosed but sharing symtoms and history

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