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» 7 months since the diagnosis
Newbie and feeling helpless EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Newbie and feeling helpless EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Newbie and feeling helpless EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Newbie and feeling helpless EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Newbie and feeling helpless EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Newbie and feeling helpless EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Newbie and feeling helpless EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Newbie and feeling helpless EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Newbie and feeling helpless EmptyMon Apr 08, 2019 7:54 am by Jo44

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Newbie and feeling helpless

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Newbie and feeling helpless Empty Newbie and feeling helpless

Post  Taylor1 on Wed Jul 11, 2018 1:52 pm

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does calm things down a little for me. I have also got the same pain in my bottom area and I have shooting pains in my legs, my muscles are going in to spasms. I feel so scared and so helpless and I dont know what else to do, I am a single mom with 2 small boys and I am so scared of what this condition means for us. I have started some physio and she said my pelvis is out of line and I have nerve damage in my legs so I am hoping that is going to help. I am keep to learn more about the LO diet too.. I am also thinking of trying st johns wort. I will do anything if anyone has any advice thanks x

Taylor1

Posts : 4
Join date : 2018-07-02

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Newbie and feeling helpless Empty Re: Newbie and feeling helpless

Post  emalita on Thu Jul 12, 2018 6:35 pm

Hi Taylor1,

I am not a doctor, and you need to do what is best for you. But what I'm about to say and ask is in NO way meant to diminish your pain or suffering. Please trust me when I say I know how absolutely terrifying genital pain is especially at the beginning.

I know I'm going to sound like a broken record to anyone on this forum that has read any of my posts, but since the treatment of your UTI and thrush/yeast, how long have you gone with doing absolutely nothing to your vulva and vagina (i.e. no antibiotics, creams, diflucan, washing too often, using wipes/soaps/douche/scented products, etc.)?

The reason I ask is that you are still in the very early stages of your pain (this is a GOOD thing), and this is a crucial time to ensure you don't unintentionally cause long term damage/pain.

My issue hit a point of no return after a UTI and multiple rounds of strong antibiotics too, which also lead to a yeast infection. My biggest regret was continuing to ask my doctor for something...anything...to relieve my pain. This resulted in many rounds of antibiotics, creams, boric acid suppositories, diflucan, etc....because that's all most doctors are able to do - prescribe medication. As excruciating as this thought would've been at the time, I wish I would've given myself at least 2 weeks of doing NOTHING in the beginning right after my UTI and yeast infection. I read that it can take the bladder 3 months to heal from the damage of an infection. Plus, I was also eating and drinking a lot of acidic foods (e.g. orange juice, oranges, pineapples, etc.), which was further aggravating my already sensitive bladder. You can read more about my story at the link in my signature.

I can’t speak to the muscle spasms in your legs because I never experienced that, but what I would encourage you to consider is doing nothing. Yes, absolutely nothing. Give your body a chance to rebalance, rebuild healthy vaginal flora, reduce inflammation and sensitivity, and eventually just calm itself back to your “normal”. I found baths soothing (with or without Epsom salt added), but don’t wipe yourself dry after…just dab your delicate tissue dry. Be more gentle than you ever thought you needed to be with your lady parts (it hopefully won’t always be this way). Your vagina has been through a heck of a lot in the last few months, be kind to it. My Chinese medicine dermatologist did not like coconut oil as many people develop reactions to it. So she recommended applying a very thin layer of hempseed oil to the vulva after a bath to lock in moisture. I also applied the waterbased YES lubricant to my vaginal opening. It did sting for a bit after application, but the stinging faded. I felt better about using YES, even with the stinging, because it would help keep my vaginal pH acidic unlike most other vaginal lubricants.

I know a lot of women on this forum have agreed that they’ve made their condition horribly worse with all the medications they’ve tried, and they wish, like I do, that they would’ve just suffered through the pain of doing nothing to let their body’s heal. Heck – you’re in pain anyways, but sometimes doing nothing is the absolute best medicine because your body doesn’t want to be sick or in pain. Give it a chance to heal itself naturally…slowly.

I hope some of this helps you, and I wish you all of the luck in the world!

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

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Newbie and feeling helpless Empty Re: Newbie and feeling helpless

Post  Guest on Sat Jul 28, 2018 6:23 am


Ladies!!!
I am trying to get the word OUT!!! 20 years of “vulvadynia”, ic, vestibulitis. Whatever the docs want to calll it. It’s been beyond depressing and has made me feel downright crazy at times. Incredibly painful, living in silent pain, going to doctor after doctor just to hear that “my mind is causing my vestibular area to flare up”.
PLEASE INSIST ON GETTING TESTED FOR A MICROORGANISM BACTERIA CALLED UREAPLASMA!!!!!!!!!!!!!!!!!
It’s a VERY hard bacteria to find!! Does NOT show up in urine cultures!! There’s a very specific test to find it and you MUST insist on being tested!!!! PLEASE BELIEVE ME!!! After 20 years of this craziness I FINALLY was diagnosed with this bacterial uti and THIS is what has caused the vulvadynia!!!
Doctors don’t even know about this. My new primary care tested me after showing up with a Walgreens uti rest showing positive leukocytes. The urine culture came back negative as usual. She had a sad talk with me about vulvadynia.
I don’t know what came over her to send the urine off to a lab and get it checked for ureaplasma, but she did. I am SO grateful. I am FINALLY HEALING quickly!!
Ueraplasma only responds to certain antibiotics. I’m on doxycycline. 14 days and it may take several rounds. This is a serious bacteria and it can kill you.
Some doctors will dismiss this test and bacteria and say it’s part of our flora. NO-INSIST. If it shows up as an infection because it’s colonized, it IS the cause of vulvadynia.
GET TO THE BOTTOM OF THIS VULVADYNIA LADIES!!! DO NOT BACK DOWN!! FIND A DOC WHO WILL TEST YOU for UREAPLASMA!!! DO NOT WASTE 20 YEARS OF YOUR LIFE GOING THROUGH THIS HELL LIKE I DID.
I’ve been through biofeedback, neurontin, creams, specialist after specialist.
I’ve found small handful of other ladies on the internet who have posted the SAME about their ureaplasma diagnosis. They are doing cartwheels like I am!!!
I am really trying to get to word out!!! I promise you ladies!!!! There is a CURE!!!
DO NOT GIVE UP!!!!!

Guest
Guest


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Newbie and feeling helpless Empty Re: Newbie and feeling helpless

Post  Taylor1 on Thu Aug 02, 2018 10:56 am

Thank you both for your replies...

I am still in pain, I have not taken any drugs for this they tried to put me on amitriptaline and gabapentine but both made me feel so ill then I read the side affects on line and decided this was not for me. They then gave me steriod cream and that seemed to make me worse so yes I have done pretty much nothing. I am massaging myself with coconut oil when it is really bad and then also I have lidocaine when it is really bad.

I am living in skirts and cotton underwear and going no underwear when I can, I have a donut cushion for work as I sit down for a lot of the day.

I am still in pain it seems to be mostly on the outside and feels like I am being pricked with pins from the outside of the vulva right to were the hair growth is the labia. Today is a bad day.....

I am so depressed mainly with the pain but I am single and I really want to meet someone and I cant imagine any man would want to be with me especially if I am unable to have sex.

Feeling desperate....

I may ask my doctor about that bacteria though although they are not particularly helpful



Taylor1

Posts : 4
Join date : 2018-07-02

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