Log in

I forgot my password

Latest topics
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

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: 2

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

Comments: 3

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: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

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


Another Newbie

View previous topic View next topic Go down

Another Newbie

Post  toobusy on Thu Mar 31, 2011 8:34 pm

I am 43 married with two children 6 & 7. Four years ago my husband and I left our regular jobs to run our own business. When we left our jobs we also left health insurance. Two years ago I was diagnossed with Fibromyalgia and hypothiroidism. Both are under control with mild medications. In Dec. I got a sinus infection which led to antibotics....2 rounds which of course led to a yeast infection. Then came bacterial infection, a UTI, another yeast infection, UTI and Yeast again! I finally kicked the yest and ensured no UTI with the Candida diet, Pro-B and Cranberry supplemnts. Thought I was in the clear...then this irritation that would not go away...and it got worse! Here I am in the process of being diagnossed with possible Vulvodynia.

This is crazy...one day I am going along and the next things are buring and I don't know what to think. I don't have time for this, not like anyone does. I am good dismissing pain once I know what it is but, this may be a bit more difficult!

Does anyone know of any herbal supplemnts or booster that could help? If I correctly understand this is an autoimmune disorder and is the fibromyalgia. Concerend with medical test and procedures without insuranse.

toobusy

Posts : 2
Join date : 2011-03-31

View user profile

Back to top Go down

Re: Another Newbie

Post  noni on Fri Apr 01, 2011 12:08 am

Hey toobusy!

Welcome!

So what is vulvodynia exactly? Good question!!!

Well, most believe that it can be due to any number of things, such as: skin condition, nerve irritation/entrapment, pelvic floor muscle issues, or re-current yeast that once treated pain never goes away.

I was diagnosed with neuropathic pain of the vulva...esentially nerve damage/irritation...which has caused other problems like severe muscle spasms, ie vaginismus.

In terms of natural approaches to the treatments...yea...I dunno...alot of us gals are on anti yeast and anti gluten diets...relaxation...accupuncture...meditation...physio for the floor muscles...

I cant really recommend anything natural per se...as it didnt do jack for me....Im on Elavil for the nerve pain 40mg, some of the lovely ladies on here take pregablin....

My appraoch is a combination of: meds, proper nutrition, sleep, and relaxation for my V.

Its really a crap shoot for this! Still, there is hope for relief. This thing strikes out of nowhere at any age it seems...its a bit of a mystery.

Have a looka round on the forum!

Cheers!
noni Smile



avatar
noni

Posts : 242
Join date : 2011-01-10
Age : 30
Location : Ontario

View user profile

Back to top Go down

Re: Another Newbie

Post  Sebby (Admin) on Sat Apr 02, 2011 4:21 pm

Hi toobusy and welcome to the forum

As noni says there are a number of theories on the causes of Vulvodynia.

As for natural medicine, I am currently doing pelvic floor bio-feedback and also use water spray and vaseline after unrination. I have had to look to conventional medicine for painkillers as I do not know of anything natural that would do the job.

Im currently on 300mg of Pregabalin and it helps to control flare ups. My flare ups coincide with my periods (the use of pads/tampons). They tried to stop my periods with Cerezette but I bled for 3 months on and off and still had pain and was too dry when they stopped

Other things that help are:

Wear only 100% cotton knickers/panties (im from uk so getting used to speaking in us terms lol)
Do not use any bubble baths etc, only let water touch your vulval area
Wash knickers/panties on high temp 60 or 90 degress with no detergent. If you feel you must use detergent then use non bio and give them an extra rinse. High temps are enough to kill any bacterias
I am cutting down on sugars and wheat (I see you have done the anti candida diet)
Get a foam doughnut cushion (with a hole in the middle) to sit on at home so there is no pressure on the vulvar

The term Vulvodynia simply means vulval pain and is what they tell you, you have after they cannot find a simply cause such as infection or skin disorder


_________________
Sebby
XxX

admin@vulvodyniasupportforum.com
avatar
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 36
Location : London UK

View user profile http://vulvodyniasupport.forumotion.net

Back to top Go down

Re: Another Newbie

Post  Sebby (Admin) on Sat Apr 02, 2011 4:22 pm


Oops I pressed send before I wanted to!

Anyways, dont be afraid to come on here to vent your feelings and to get support

Take Care


_________________
Sebby
XxX

admin@vulvodyniasupportforum.com
avatar
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 36
Location : London UK

View user profile http://vulvodyniasupport.forumotion.net

Back to top Go down

Thanks

Post  toobusy on Sun Apr 03, 2011 1:48 am

Thanks for the info ladies. I will keep searching and trying new treatments, will let you know what I find. By the way...officially got the diaganosis and doctor recommended a special physical therapist who specializes in treatment of vulvodynia and related problems. The Dr. says there are only a few in the country and we have one in NJ. Not sure how accurate that is but, I guess I have nothing to loose by calling. Anyone going to this type of physical therapist?

toobusy

Posts : 2
Join date : 2011-03-31

View user profile

Back to top Go down

Re: Another Newbie

Post  noni on Sun Apr 03, 2011 1:20 pm

Hey toobusy,

I will be trying this approach in time.

I know that mouse is doing some type of physio...you could ask her.

take care,
noni
avatar
noni

Posts : 242
Join date : 2011-01-10
Age : 30
Location : Ontario

View user profile

Back to top Go down

Re: Another Newbie

Post  Mouse on Sun Apr 03, 2011 7:49 pm

Hi toobusy and welcome!

I'm sorry you have found yourself having to join us but you are in good company. We are all searching for answers and being proactive about improving our health. Well most days, sometimes we just howl at the moon but that's ok as well.

Things that I believe have worked for me are - diet modification!!! I am sugar and gluten free, the gluten is because I have celiac disease but the sugar is to reduce acidity. I've had a huge improvement since I started that. I drink a lot of water, limit coffee and alcohol. I meditate, try to find as many natural feel good chemicals as I can, they are hard to find sometimes. I do PT and that has also made a huge difference, she does trigger point therapy and I also have acupuncture as I've annoyed some other nerves as well. I would think any womens health PT could help you. When you think about it there are a lot of reasons the pelvic floor gets irritated in women. I have a friend who has a torn muscle from childbirth and then there are prolapses and incontinence which can also be from childbirth or the pelvic floor becoming weaker with age. If you can't get into the one your Dr suggested have a look around for someone else.

I also think getting out in the sun, enjoying time with friends and family or trying to be social improves your mental health. Try for good sleep patterns so create an environment that helps you sleep well ie not too much stimulation before bedtime, low lights and good curtains etc.

Oh get a therapist! While this isn't in your head it's a hard condition to live with so unloading all the crap in a safe environment works wonders for most of us. In fact this would be number one on my list. My therapist helps me sort what seems like a huge mess into neat little compartments.

And I also believe that having sex if you can helps to heal. Check out Sarah's consult with Dr Glazer. I have generalised V so I can have sex without pain, well mostly - I have unprovoked pain all the time.

Ooops work time!

Good luck
Vicki

Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

View user profile

Back to top Go down

Re: Another Newbie

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