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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 …

Comments: 9

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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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 …

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5


Letting off some of that steam...

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Letting off some of that steam...

Post  WaahwaahUK on Wed Aug 26, 2015 5:11 pm

I've had two reasonable days this week for the first time in ages with pain at about 3 or 4 out of 10. Today I'm at a 6 and feeling low... Only been on nortriptyline for about 3 weeks and its a low dose so not expecting a miracle yet. Having osteopathy treatment seems to be causing flares for days after treatment but ultimately I feel like its on the right track... I just feel so tearful today as it's one of those days where I can't see the light at the end of the tunnel. I seem to flare when I'm hormonal (around ovulation and several days before my period) and am thinking maybe that's because my body is more susceptible to pain then I don't know. I've tried so many things this last year. It's been a year now. Feel like my sense of womanhood has been stripped from me. I've heard nortriptyline can take a few months to show effect so I'm holding on desperately to that notion. Just feeling so incredibly flat today. I thought I may be able to attempt sex yesterday if it continued improving but today I'm not so sure.... This is such a cruel and twisted thing. This chronic pain with no solid guaranteed way forward. I keep reading over some of the success stories and trying to hold out some hope. Today I just feel like utter shit. Excuse my french. That tell tale burn is firing on my left side and the deep ache I get is saying hello too. Hate it. Steam over.

WaahwaahUK

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Re: Letting off some of that steam...

Post  PainBlogger on Wed Aug 26, 2015 7:25 pm

Sad I know how you feel. I've had a rough few days with my pain flaring up with no obvious trigger. Today has been a bit better though, thankfully, maybe as I had acupuncture yesterday. I'm also hoping the nortriptyline will show more effect in time. I've noticed my heartbeat is quick (it's always been a bit quick, but more now than usual > 100bpm) so I think I'd better speak to the GP before increasing to 40mg/day. I'm on several other meds which means I'm more prone to side effects. I think you really need to give the nortriptyline a bit longer but I understand your frustration totally. I feel so angry some days, especially when I've had a few better days and then it's got worse again and I analyse everything I've done/eaten and can't find any trigger factor.
It's good to read the success stories and also to have a rant and, as you say, let off some steam.

PainBlogger

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Re: Letting off some of that steam...

Post  WaahwaahUK on Wed Aug 26, 2015 7:44 pm

It's so frustrating when there's no obvious trigger. I feel like what the hell am I doing wrong? Analysing everything like you say. I'm definitely going to persevere with the nortriptyline as side effects for me have been tolerable. It's such a waiting game.... I've never had accupuncture. Does the therapist treat you specifically for the vulvodynia pain? I'm so sorry to hear you've had a rough few days too, but today hopefully is a sign some relief is coming. I'll keep my fingers crossed for you. Sometimes I just want to scream out all my hurt and anger I just don't know what to do with it all. Are you on other meds for this, or is it other things? I feel like I should be trying to do things like have sex but its been so long and although my vagina doesn't actually hurt, pretty much everywhere else does! Sorry probably TMI there! Just so sad today. Thanks for replying. It does actually help knowing other people can relate to this hideous pain.

WaahwaahUK

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Re: Letting off some of that steam...

Post  PainBlogger on Wed Aug 26, 2015 9:22 pm

Yes, there are acupuncture points specific for genital and bladder pain. But also points for general pain, I think. I have needles in my feet and lower legs, hands, abdomen and upper chest and one in the top of my head. The effectiveness of the acupuncture seems to vary from treatment to treatment but I'm sure it has some effect. My other meds I was on before this pelvic pain started (I have fibromyalgia so pain in my neck, back, hips and knees though generally not everywhere at once).

I think trying to keep doing things is admirable as long as one is sensible - there are certain things I just can't contemplate right now and in fact have been advised to avoid as if I do them and my pain flares then it will increase muscle tension and feed in to the vicious cycle of pain.

I hope you have a better day tomorrow Smile

PainBlogger

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Re: Letting off some of that steam...

Post  WaahwaahUK on Wed Aug 26, 2015 9:36 pm

I may look into accupuncture as well. Thank you. I think I have a stupid sense of must try or else I'm a bad person... I don't know. Thank you for the encouragement today. Wishing you some good days too.

WaahwaahUK

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Re: Letting off some of that steam...

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