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» Acupuncture advice please
Yesterday at 11:27 pm by infinitelywondering

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

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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Feeling very isolated, in need of a connection

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Feeling very isolated, in need of a connection

Post  LearningToDeal25 on Wed Oct 09, 2013 12:45 am

Hi, I am relatively new to this whole thing but I am already so tired of the loneliness and isolation it has caused that I just have to tell someone about it. So here it goes:

I've had a couple yeast infections before all of this. They were mild and cured quickly with Monistat kits. About five months ago I got one that was not responsive to over the counter treatment. It felt the same of the ones before, but it just wouldn't go away. I went to my OBGYN and she gave me a round of Diflucan. Symptoms got better for a day or two, but then quickly got worse. I went back, got swabbed, and was given another round of Diflucan. I went back when that didn't help, got swabbed again and tested negative for yeast overgrowth. I was beyond surprised. I am still constantly itching, burning, stinging and just generally feeling irritated down there. Sitting hurts, walking hurts, and bowel movements are the absolute worst. I have pain in my lower back (ovaries? Kidneys? I'm not sure), frequent headaches, and my digestive system has been completely dysfunctional. My OBGYN basically told me there wasn't anything she could do so I've made an appointment at an integrated health and allergy clinic as well as another OBGYN that seems to be more experienced than mine (and will hopefully have better bedside manner-I saw my doc 5 times in the last 5 months and she still doesn't know who I am!). I have been on probiotics, flax seed oil, garlic and cranberry supplements for about a month now. I drink monumental amounts of water. I've been trying the whole anti candida diet thing for a couple months as well, but lately my willpower keeps faltering. It's hard to maintain such a strict diet because I'm in college and I work part time. It's hard to control my stress levels for the same reason. I'm so confused as to whether I'm doing the right thing at this point. Is it a yeast infection that refuses to go away because I was overprescribed antibiotics as a child (and boy, was I ever)? Is it vulvodynia or vestibulodynia? Is it multiple conditions?

What's perhaps even more troubling than all of this physical pain is the fact that I've become completely, overwhelmingly, undeniably depressed. Every morning I wake up dreading the day ahead of me because I know it will be full of pain and awkwardly trying to get out of social engagements (I hate being around people now. The constant itching makes me so self conscious and the dietary restrictions exclude me from most things) I have no focus for the things that I am (was?) passionate about and I can't relate to anyone around me anymore. I am prone to depression, but I had things under control before this. In fact, things were going really well. I have the most wonderful boyfriend who has been so caring and patient with me, but the lack of physical intimacy and the fact that I am becoming increasingly withdrawn is putting a strain on our relationship. He puts the color in my world and I'm so scared he's going to leave me. I know I'm supposed to "be strong" and "have a sense of humor about life" but it just makes me feel so hopeless to know that I'll probably have to deal with this for years and years. This pain is so awful. The thought of living with it for the rest of my life just makes me want to give up on everything.

I know this is a stone cold bummer and it probably seems stupid to some of you who have been dealing with this for a long time, but I just had to express to someone how deeply this is affecting me. I'm scared, anxious, and confused and I just want to feel normal again.

LearningToDeal25

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Re: Feeling very isolated, in need of a connection

Post  Leslieg on Wed Oct 09, 2013 1:28 am

Hi learning, you are not alone in this.  It's exhausting but it sounds like you are on the right track and getting the help you need.  I've had similar experience starting w/ a yeast infection and then symptoms never really went away.  I mostly have raw sore red, inflamed skin with pin prick feelings and some itching.  I use lidocaine to survive.  I thought I had a skin condition called lichen planus but have been recently told by a new specialist that I don't.  She refered me to allergy testing for chemical irritants that I just completed.  Apparently I have an sensitivity  to an ingredient in the soap and shampoo I've been using.  I'm in shock to be honest because I really didn't think they'd fine anything.  That also said it will take 6-8 weeks to heal.  Maybe more.  I haven't used the products for over a week.  My symptoms were mild so I was hopeful but now having a bad night.  I keep praying things will get better and better.  I've read many many success stories....we will all have our own!  Please try to stay positive....I know it can be hard.  Lidocaine helps some of us so I would ask your doctor if its Appropriate for you.  It can help you enjoy a social event and decrease distraction during work and school.  Rinse after you pee and try to keep things cool and dry with loose clothes until you feel better.
I had a lot of antibiotics too prior to this.  I think they change our bodies immunity and create sensitivity. I often wonder if diflucan can do that too in the GI tract which is strongly involved with our immune system. Unfortunately, answers don't come quick.  Just try to attempt only one remedy at a time and give it time.  I did not do this and now I have difficulty knowing what has helped. For example I tried switching soaps awhile back but only gave it a week or two. When I didn't feel better I switched back. I didn't know the healing time was was so long.  Also, some reactions dont occur for days after exposure. Diet changes can take months as well as new medications.  Keep a journal if you can...you may find a pattern to your symptoms.  Trying to help you avoid the mistakes ive made. listen to the specialists. if they are not a vulvar specialist , find one.  regular gyno truly just dont know.  Hang in there.  For home relief women use baking soda baths, rinsing, ice packs, rest, etc. wishing us all well sooner than later!  xo

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Re: Feeling very isolated, in need of a connection

Post  LearningToDeal25 on Sat Oct 12, 2013 1:05 pm

Thank you, Leslie. It's really been helpful to see that I'm not the only one going through this (not that I would ever wish it on anyone!) I think your one-remedy-at-a-time advice is sound and I will definitely keep that in mind. My symptoms seem to gradually be getting better, save for a flare up or two each day. Positivity definitely helps, even if it isn't always easy. Let me know how switching products goes for you.

LearningToDeal25

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Re: Feeling very isolated, in need of a connection

Post  Sunflower82 on Tue Oct 15, 2013 7:46 pm

Hi,
I have been suffering with v for years now and the
Last 4 years have been the worst. About a year and a half ago I hurt my back hoovering ( of All things) since then my v symptoms got worse. I recently had a nerve block in my back for a trapped nerve and surprising this has really helped my symptoms I've gone from not being able to have sex to being able to have sex with hardly no pain, on ocassons there complely reduced feeling but better than no pain. As u mentioned lower bk pain it maybe worth asking your GP for a MRI.

Hope this helps

Kt

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Re: Feeling very isolated, in need of a connection

Post  burningturning on Tue Oct 15, 2013 8:58 pm

Could that be cystitis? Do you experience pain during urination? In some cases, cystitis could last for 3-4 months.

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Re: Feeling very isolated, in need of a connection

Post  Alana3 on Tue Oct 15, 2013 10:01 pm

Cystitis can be permanent too. .

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Re: Feeling very isolated, in need of a connection

Post  tinkerbelle2 on Thu Oct 17, 2013 10:43 am

Hey honey, I was feeling quite isolated too but since finding this forum I feel much happier! You aren't on your own with this.
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see your docotr and get checked for BV

Post  lavrose on Tue Oct 22, 2013 1:13 pm

Go to a good GYN or more than one GYN and get tested for BV cuz i learned over the years that if your yeast infection is unresponsive to the creams you have a bacterial infection or somethin else goin on..Thru my v struggles Ive cultered out for BV many times..
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Re: Feeling very isolated, in need of a connection

Post  vetinprep on Thu Oct 24, 2013 10:39 pm

Hi!
I know it's such an isolating and lonely condition-and it's all so stressful! But you're definitely not alone and you should know there is hope and there are treatments!
I second the recommendation about going to a gyn who's really good with treating/diagnosing vaginal pain. I had to go to four separate gyns before I found one who had an explanation for my pain (which was vestibulitis).
It's really annoying but you definitely need to take charge of your health-if they keep prescribing those meds that aren't working get yourself into a clinic that deals with different pain disorders. And seriously don't give up-it may take awhile but there are a myriad of treatments out there so the situation isn't hopeless!

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Re: Feeling very isolated, in need of a connection

Post  Kathy100 on Fri Oct 25, 2013 12:06 pm

Hi, it is really stressful & scary - especially when you are waiting for a diagnosis and first find out. To start with I used to cry a lot with the pain and hopelessness of it all. This forum helps a lot - you're not on you own. Gradually you start to find the right people to help you & this can take a while & be stressful and then you start to get better. I'd echo the others & just try one med at a time some will work; some won't (e.g. lidocaine made me worse, notriptyline helped me), find a gynae and/or pain management specialist who is familiar with this condition. The other thing I did to help me with the mental side of things was see a therapist who specialised in helping women with chronic pain conditions such as V.

Difficult but try not to think about the future too much for the moment - it just makes you feel worse - I try & go with one day at time approach & compare with how much better I am now to what I was a few months ago.

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Re: Feeling very isolated, in need of a connection

Post  Takver on Mon Oct 28, 2013 10:52 am

Hi, welcome to the forum. Out of curiosity, why are you taking flaxseed oil?

My gynae found that a change in shampoo had flared up the vulvodynia too. It's definitely worth going through all your toiletries, laundry detergents etc.
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Re: Feeling very isolated, in need of a connection

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