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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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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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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 …

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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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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, …

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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 …

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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 …

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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 …

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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 …

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Hello.New to forum but had Vulvodynia for nearly 15 years

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Hello.New to forum but had Vulvodynia for nearly 15 years

Post  Melina77 on Wed May 01, 2013 8:30 pm

hello. Just a quick hello. I only found these forums today. So I will have a lot of reading to do! I developed vulvodynia after the birth of my first son. I grazed during childbirth and this became infected and I have never been the same again. I am married and it has been tough. I feel like I can not be the wife I want to be as I can not be intimate in the way I wish nor the frequency. I am from the U>k but live in the USA now. whilst in the u.k I discovered bio fem which probably saved my life. I was in a horrendous way before with prickling and soreness-burning and I kept getting flora imbalance every time I was intimate. I kept being given antibiotics and then oral yeast treatment and it was an awful cycle. I have to order my Biofem from the u.K as there is nothing over here that has the same ingredients. It is great I do not have to visit the doctors for yeast or bacterial vaginosis for a very long time. My last gyno was pretty useless. Told me to try and enjoy the burning as normal love making-unbelievable it feels like acid!! The biofem has made it possible to have sex without getting bacterial vaginosis but I still find I get vulvodynia flairs when it is hot or if I eat certain foods.I can not tolerate fresh produce too much such as apples or oranges. I have had a good 4 years I would say but yesterday it has flaired up and it gets me down. I also notice if I am slightly in need of a bowel movement I get bad prickling, Before I left the u.k I managed to find help at a hospital vulva clinic that encompassed dietician, phsio , doctor and therapist but over here my insurance has not been very great, Unfortunately I have also been dealing with :Lyme disease so I say sorry if my typing is bad . Anyhow I am glad I found these forums. It is nearly impossible to talk about it unfortunately there is such a stigma to diseases affecting our private parts. Whilst I can openly talk about Lyme disease on facebook I can not talk about this. thank you any way for these forums!!!

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My first night on forum but 20+years with this hell!

Post  dreaming@jeans on Mon Jun 03, 2013 5:43 am

Hello there. I have been dying for a forum like this. Thank God we both found it. I understand all the same pains you do. I lately agree that sugar is the devil and is a possible huge reason why the pain flares-up. I have been taking a vaginal suppository from Whole Foods(organic chain) that I will check the name of. I believe it helped but I haven't taken it for a few weeks. I have a flare-up right now and wonder all the time why? I have been sitting a lot taking computer classes. How do you know about the fruit bothering you? Is it the acid? I've tried so many things over the years and one thing that has helped is taking hormones. I get them at a compounding pharmacy (creams) and I believe it has helped me. Do you know how you got it 15 years ago? Doctors are clueless. We have to help ourselves. I do also agree with the bowel movement pressure too. Calcium citrate is supposed to be helpful too. I never know what to do to soothe the area when I'm in pain? Any suggestions?

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..

Post  Marylynnreily on Wed Jun 05, 2013 6:08 am

Im tellin you guys, try the clindesse and gyne lotrimen..

the Acid Lovemaking, O yea..this has been my sex life in a nutshell. Ive been enjoying constant sex everyday for the last month , even 3 times, a day..never had sex like this before in my life..never thought it would be possible..but because I cured myself with massive doses of the creams, antifungal and antibacterial..a miracle happened..Im just sad that I wasted most of my sex life with this condition that turned out to be curable after all..and yea, I have done vaginal herbal suppositories and they dont do crap, and yes, most doctors are BS!! I took matters into my own hands..

Peace-
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Re: Hello.New to forum but had Vulvodynia for nearly 15 years

Post  Sebby (Admin) on Thu Jun 06, 2013 8:07 am

Welcome to the forum Ladies, I'm glad you feel you have a space now to talk openly about this condition.

We also have a secret facebook group where only members can see posts and it will not show up in your group lists to anyone but members.

Message me if you would like to join.

Take care

Sebby
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Re: Hello.New to forum but had Vulvodynia for nearly 15 years

Post  lonelyone48 on Wed Dec 04, 2013 3:44 pm

I found this forum a few days ago and I've been busy reading. I was diagnosed with Vulvodynia in 2005 and I also have recurrent Bacterial Vaginosis. The pain gets worse every day. I'm on Gabepentin, Effexor, and Lidocaine Ointment 5%. I'm thankful to have others to share with and learn from.

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Re: Hello.New to forum but had Vulvodynia for nearly 15 years

Post  jackie333 on Fri Feb 07, 2014 3:10 am

I truly can sympathize with you and I wish I had a full proof answer but I am still  searching for an answer myself.
I've been living with the pain for several years and as a lot of the ladies mentioned, the flares used to coincide with either bladder infections  or IC which I would get frequently. Now I get them all by themselves : (

I am seeing another doctor this coming week but I have found a few things that seem to help. One is keeping a spray bottle of cool water handy and using it after  urinating. I have a small 3 OZ. spray bottle that I found in the  drug store that fits in my purse for times I am out.
Today I took an Aleve,-(Naproxin) and I do think it helped a bit with the pain--and I also ordered Sudocream from Amazon as suggested by another member. At first I thought it was only for sale in the UK, but I  persevered and did find a dealer in the USA--and it is quite inexpensive!

Please don't feel things are hopeless-- we are in this together and the support and shared knowledge is wonderful--

Jackie333

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Re: Hello.New to forum but had Vulvodynia for nearly 15 years

Post  lonelyone48 on Thu Feb 13, 2014 2:10 pm

I was scheduled to see a new Gyn but due to bad weather it was canceled. Now I have to wait 2 weeks. I'm at the point where the pain is so severe I can't walk sometimes. It hurts from my vulva to my lower back and my thighs. I haven't been able to work since last April and this is really becoming to much to bear. I missed 3 dosages of my effexor and went through major withdrawal. I'll never take that again. Just needed to vent...I am physically and mentally drained.

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Re: Hello.New to forum but had Vulvodynia for nearly 15 years

Post  jackie333 on Thu Feb 13, 2014 2:25 pm

I am leaving on a two week trip next week and am so nervous about a bad flare up. Taking a little spray bottle of water with me--Cipro in case I get a bladder infection--Lidocaine and a lot of prayers.
I also scheduled an appointment with a physio therapist affiliated with my HMO. That appointment won't take place until I return from the trip--but I have been reading about physio and Vulvodynia--- I seem to fit the profile-- IC-- irritable Bowel--lower back instability  etc. From what I am seeing it appears that one cause may be associated with muscles in the pelvic region.
Please don't give up-- I truly know how you feel.
Try to relax, as tension causes stress which makes things worse. Rent a funny movie--try to do something that makes you happy. I also bought a  natural relaxant from the health food store.    http://www.amazon.com/Natural-Balance-HTP-Calm-60-Count/dp/B000K2AUCQ
It is called HTP CALM and you can find it on Amazon too--I bought extra bottles for less $$$ on Amazon when I saw that it helped the tension.  It helps in a very gentle way---

Hugs-
Jackie

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Re: Hello.New to forum but had Vulvodynia for nearly 15 years

Post  lonelyone48 on Thu Feb 13, 2014 4:44 pm

Thanks Jackie for the encouraging words and information. Have a safe and enjoyable trip.

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Re: Hello.New to forum but had Vulvodynia for nearly 15 years

Post  zarli on Fri Feb 14, 2014 7:53 am

Hey Lonely one, I have been suffering for years too although I get much relief from Lyrica and Nortriptyline. They quite literally saved my life, I suffer from neuralgia type pain constantly with out medication. I hope you can get some relief soon. Being able to live a normal life and return back to work is all you probably wish for....it will happen just never give up trying I know that is easier said than done but its important for you to stay positive. Are you on any other Meds ? You are not alone we are here for you xx

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Re: Hello.New to forum but had Vulvodynia for nearly 15 years

Post  lonelyone48 on Fri Feb 14, 2014 11:58 pm

Hji Zarli I'm only on the lidocaine and gabapentin for now. The gabapentin(1200mg) doesn't seem to help much, so I'm sure it will be increased soon. Now on top of this I now have IBS and need a hemorrhoidectomy. I'm scheduled for that on March 13th. All I can do is laugh to keep from crying.

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Re: Hello.New to forum but had Vulvodynia for nearly 15 years

Post  zarli on Sat Feb 15, 2014 4:24 am

You poor bugger...All will get better from here on, take one day at a time. Use what ever you can to get you through to your next appointments. I know all the natural stuff is great but sometimes we need to depend on other meds just for a short time. Your specialist should be able to try new meds as different things work for different people. Is gabapentin Lyrica ?
I drove myself to an after hours clinic years ago when I wasn't having any luck with pain and they put me on amiltriptyline and valium in low dose to help me relax. I know a lot of people don't agree with valium and I am not telling you to go get it but it just helped my nerves and anxiousness, now a days I only take them when my bladder is causing me grief or if I have extreme stress.
We are all different please remember this and know in your MIND that you will get better and better from this day on.
I loved Jackies advice about a movie or something you used to find that made you happy. I will never forget my early days of legs apart and up in the air with an ice pack on my privates while I watched 'Under the Tuscan Sun', my son walked in on me and he said," what the hell are you doing ??" I said nothing sexual I just got bitten by a bee in the wrong place, makes me laugh now.
My thoughts are with you xx

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Re: Hello.New to forum but had Vulvodynia for nearly 15 years

Post  lonelyone48 on Sat Feb 15, 2014 1:52 pm

Thanks for making me laugh. Gabapentin is neurotin commonly used for epileptic seizures, but also used for nerve pain. Patience is key and I'm working on that. Have a great weekend!

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Re: Hello.New to forum but had Vulvodynia for nearly 15 years

Post  sarisbaris on Mon Feb 17, 2014 6:30 am

I have struggled with vulvodynia for the first time 15 years ago and it recently came back with my pregnancy.  During the first round in my twenties, changes of my diet helped as well as my acupuncturist and herbalist.  But during this recent flare up nothing helped.  Pain would reach up to 8-9-10 levels, to the point when the doctors wanted to give me morphine even though I was pregnant.

I figured out a green drink I created takes my pain away in 25-30 without fail, atleast for me.  Then I finally found an acupoint nutritional therapist and while taking her stuff the pain over the past few months the pain has dissipated.  For the past month, the pain never gets above a 1 or a 1.5.  Now, most days I am pain free. I am deeply grateful.

I've been married for 10 years and I completely understand.

Here has been some saving graces:

Screw You Vulvodynia - Green Drink (for me personally... this would alleviate my burning pain in about 25 minutes. Not sure why)
1 bushel of cilantro
½ cucumber
1 celery
2-3 lemons
1 lime (optional)
Filtered water
1 Orange or ½ orange juice (this might have too much sugar for you but if you are still acquiring the taste for veggies in a cup, add some orange)

Braggs Apple Cider Vinegar Drink  - 1T in glass of filtered water (helps vaginal burning but I found the green drink worked faster)

Also, if I don't eat sugar, fried food, anything that is acidic, my vagina is much happier and of course, sex much better. Do some research about the akaline foods in contrast to acidic foods. That helps a lot.

Shuangliao Houfeng San (to use internally, keep it in your purse and use it during sex... my vagina loves this stuff)
My acupuncturist recommended this to me when the inside of my vagina gets too hot. TCM (Traditional Chinese Medicine) doctors usually recommend this for a sore throat. Use a little bit of organic sesame seed oil (not toasted sesame seed oil or your vagina will smell like Chinese food… I learned that the hard way) and a little little bit of this powder on your finger, insert into your vagina, rub it around and wait a few minutes. Another freakin God-send! When you are doing this for the first time, please use just a little bit of the powder. It’s really really strong.  The first few times, make sure you are next to a hot bath so you can soak if you use too much. The powder smells something awful but who freakin gives a sh-t if your vagina stops burning.  When my vulvodynia subsides enough to have sex (with intercourse) we put a little of this stuff on my partner and it is still freakin awesome. You can buy Shuagliao on amazon.

Everything above (including acupuncture/TCM herbalist) helped but wasn't a cure.  I found a practitioner of Acupoint Nutritional (or Integrative) Testing who finally pinpointed the cause of my pain and alleviated my pain in a few months. It was a slow progress but it seems like it's a permanent fix, so that's been great. (This won't allow me to add a link but just google Dawn Dolan in Cotati, CA) Basically, she uses applied kinesiology to figure out the cause of my the problem and the remedy. Sounds crazy but it worked!

Take care!

PS - It's funny but my western Kaiser doctor has encouraged me to spread my vulvodynia story because of my progress over the few months. So there you go Smile


Last edited by sarisbaris on Mon Feb 17, 2014 5:45 pm; edited 1 time in total

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Re: Hello.New to forum but had Vulvodynia for nearly 15 years

Post  Leslieg on Mon Feb 17, 2014 2:35 pm

Thank you for taking the time to share your story and recipes!!!
So glad to hear the positives! Smile

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Re: Hello.New to forum but had Vulvodynia for nearly 15 years

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