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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

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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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Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

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anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

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Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

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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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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

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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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Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2


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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