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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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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.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


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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