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» Vulvadynia
Yesterday at 11:53 pm by Linda Williams

» Will I ever be able to wear jeans?
Wed Jul 19, 2017 11:02 pm by jungleclover

» Looking for a friend IRL; LA/OC
Wed Jul 19, 2017 10:58 pm by jungleclover

» Constant pain, I want to die.
Wed Jul 19, 2017 10:55 pm by jungleclover

» What is Vulvodynia?
Wed Jul 19, 2017 10:42 pm by jungleclover

» Anyone else get this from yeast infections? (new member)
Wed Jul 19, 2017 10:37 pm by jungleclover

» Owner of vulvodyniSuppoet.com
Wed Jul 19, 2017 10:28 pm by LaurenVV

» anyone from southern california in here?
Tue Jul 18, 2017 2:38 am by crypticcalico

» Surgery Success - Still early days, but going well so far!
Sun Jul 16, 2017 8:42 pm by sarahjane1332343

Vulvadynia

Fri Jul 21, 2017 11:53 pm by Linda Williams

I am 68 years old and a year ago was diagnosed with vestibulitis, then vulvadynia. I have a history of chinchilla bladder infections, have had major bladder repair, hysterectomy, mid 30's, an auto immune disease. I take a daily antibiotic to keep UTI's at bay. My doctor has done the Quip test which was uncomfortable but did not test anything. I use Premarin vaginal cream 2 times a week. These …

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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.

Comments: 1

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 …

Comments: 20

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 …

Comments: 0

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!!!

Comments: 6

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 …

Comments: 2

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 …

Comments: 1

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 …

Comments: 12

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 …

Comments: 3


I... just... ARGH (I'm a horrible person)

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I... just... ARGH (I'm a horrible person)

Post  Haze on Wed Oct 19, 2016 1:18 am

Last posted May 2016 in the new members section, having been referred to a dermatologist and waiting an appointment following a 5-year-provoked-pain-sex-impossible-very-miserable ordeal. I feel like I should have posted here since, tried to provide some support to others, but since I haven't found anything that's helped me in the slightest it's a bit difficult to give advice... sorry, but all I have is anger about the whole thing and I don't think that helps anyone. I just need to rant before I hurt myself and I can't write something like this to a person I know IRL without consequences.

Had my appointment this week and the dermatologist confirmed everything I had previously said about my referral to her in the first place - there is no dermatological issue, and nothing she can help me with. I knew that already and this non-revelation certainly wasn't worth the five month wait.

This is the pattern. Get a referral, wait 5-6 months, have an appointment, be prescribed something, wait 5-6 months, return to discuss how the prescribed treatment has not worked, wait 5-6 months, receive letter informing of who they're passing me off to next, rinse and repeat. Go back to the GP as often as possible to be told that they won't do anything else at all while I'm waiting for my letter/appointment/whatever.

So, imagining for a moment I didn't have a vagina that feels like an open wound, my newly engaged finance and I would ideally like to get pregnant after our wedding in 2018 (at which point we'll have been together 7 years, living together for 5), but open to getting pregnant before that - because what if we miss our only chance because we're waiting? We're still sexually active, minus penetration and contraception, and we're aware that it's unlikely (but possible) to get pregnant this way - even more so unlikely because I have PCOS and go months without a period. We may never have full intercourse again, it certainly feels that way.

So we optimistically decided that with waiting times, criteria, funding, chances of pregnancy reducing with aging etc, etc, etc... let's go to the doc, tell them we want to get pregnant, let's get on a waiting list for any form of fertility treatment. I thought I'd prepared for the worst, maybe being handed a leaflet and shuffled out of the door, maybe being told that we would be waiting years past our timeline for even the first consult, etc.

I was NOT prepared. Artificial insemination not available to me, at all. IVF available only to couples who had been trying to conceive via regular sexual intercourse for 12+ months, so not me. No allowances for the fact that I CANNOT have regular sexual intercourse. No allowances for the likelihood that there are other fertility issues with the PCOS/lack of periods - I can't prove it, because I can't say "I'm having sex AND not getting pregnant".

So what are my options? I have to wait until they fix me, then have regular sex for a year and THEN they will refer me for my first consult if I don't get pregnant. Lucky whooping-fucking-do me. It's only been FIVE WHOLE YEARS that I haven't been able to have sex, during which I've averaged two five minute appointments a year with specialists who shrug their shoulders and leave me waiting half a year with nothing to do but sit and wait around, thinking about how defective my body is.

I know I'm probably over-reacting but I have basically been told that if the pain doesn't go away then no children for me ever.

And I know I'm probably over-reacting but I don't understand how they could expect me to be okay with sitting and wait patiently for them to figure out what's wrong and fix it when it's been five years and virtually nothing is being done to help.

And I know I'm probably over-reacting but I really don't feel I can cope with the concept of never having my own children, and even worse, forcing that on my partner too - that isn't sharing my pain with him, that's just doubling the pain.

And I know I'm probably over-reacting, but it's been hinted to me that the next referral I'll be getting is for psychological help and fucking hell... I'm more than happy to try therapy, but my past experience of mental health referrals suggests that my next wait is going to be well over 5-6 months (over a 2 year wait following teenage suicide attempt many years ago - and if they can't fast-track the overdosing child, what hope is there for a sad woman with a hurty vagina?)... I've actually been asking for a mental health referral for a long time now, but I know it's not the solution to my pain! At this rate I'll still be waiting for help as I hit the menopause.

The only alternative is private care that we cannot afford. I'm doing everything I can do with what I have. I've been thinking about hurting myself enough down there to maybe force surgery to happen. I've been thinking about obtaining something along the lines of heroin... maybe that could numb the pain/knock me unconscious for long enough so that he could have sex with me. I've been thinking that maybe I will need to ask him to physically restrain and essentially rape me.

I don't feel like a woman. I might as well have no reproductive organs, they're all broken. Suicide was kind of lingering in my brain's periphery and now it's standing centre stage, waving it's arms. Not planning for it in the near future, but it definitely feels like my brain is trying to schedule some kind of cut off point, where I decide I'm not willing to wait anymore.

Just want to end with: I'm actually very sane and level-headed when this issue isn't at the forefront of my mind. I am in an exceptionally healthy relationship (going strong despite no sex, genuinely only two small 1-hour arguments in over five years, and it goes without saying my partner would NOT agree to the drastic measures above). I hold a full time job, I have friends, close family relationships, I even have a couple of hobbies - I'm a functioning person! I don't WANT to die, I don't WANT to conceive a child while unconscious, I know that harming myself is not a sensible action to take if I want to be a parent - these are last resort thoughts that repeat over and over in my head against my will and best judgement. I read back through this before posting, and if the writer was a stranger to me, I wouldn't think they were fit for motherhood. But this is what my medical problems are doing to me. It is holding ransom everything I hold dear, all my plans for the future, control over my own life. Perhaps I'll feel better in the morning, or maybe in a few years I'll be able to accept a life without children, or maybe they'll fix me but I'll still be a headcase. I am so sick of this.

Haze

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Join date : 2016-05-25

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Re: I... just... ARGH (I'm a horrible person)

Post  PainBlogger on Wed Oct 19, 2016 9:00 am

I'm sorry to hear how bad you're feeling. I can appreciate to some extent how stressful it is to deal with this condition as well as wanting to conceive. I'm finally able to TTC with my husband again (you can read about my history here: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement ) but we just had some fertility tests done because we've had no success in over 18 months (12 months before vulvodynia and 6 months since being able to try again), the tests did show a problem, and IVF is not available on the NHS where I live for anyone. Sad So I feel like every obstacle I overcome I just get another one put in front of me. I have to be grateful though that there is a chance it could happen naturally before I get too old. I don't mean to equate my situation to yours, I just wanted to say that I can empathise.

Are you able to insert anything (like a tampon or small dilator)? I've seen info on the Internet where people have had success with DIY artificial insemination at home. Obviously you'd need to be able to use a small syringe (minus needle of course) for that to be an option and it wouldn't be as likely to work as AI where they inseminate into the uterus directly (IUI). Have you tried physiotherapy and/or dilators? What about lidocaine gel/ointment? Which medications have you tried?

Another option, which is not ideal but I'm sure people have done, would be to say to your GP you have been trying for over a year. I don't like to advocate lying, but, honestly, in your situation (and maybe this makes me a bad person) I would personally consider it. I guess you'd have to wait another year before doing that though as the GP knows that at the moment you haven't been able to.

Whatever you do, don't try to push through the pain and have sex. It will only make things worse and you could cause relationship difficulties in a relationship which sounds very strong.

I hope you find something that helps you soon.

PainBlogger

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