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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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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 …

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New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

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New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

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Death would be kinder than this...

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Death would be kinder than this...

Post  sailor_moon on Wed Jan 27, 2016 9:07 am

I literally feel like I want to kill myself right now. I wouldn't do it but I sure as hell can see why people do. I have been thinking suicidal thoughts. I can't stop crying. My skin is red raw, inflammed and itchy as f*ck. How can this not be a skin problem?? I'm red raw in particular areas, always the same areas. Some days are worse than others but the redness in certain areas is always there. How is this NOT a skin problem? Biopsies only show non-specific inflammation....or is that the poor excuse term that overqualified lazy biopsy testers use when they can't be bothered to test properly?

I showed positive for candida back in October....since then cultures have come back negative...over almost 3 years of this hell only 1 test has shown positive for candida.

I am on 20mg Amitryptilene but it isn't doing anything for the redness. I thought it was helping a bit but no, I have this horrible flare up which proves me wrong again.  I have tried Lyrica for 6 months and it did nothing but burn a hole in my wallet.

I recently had back scans done which I am yet to get results for, but if it is nerve related why the hell am I so red?

I have tried literally everything except for internally absorbed Estrogen [cream made me worse], Ami in cream form, Steroid injections, Botox, Physio [which I can't really afford being on mimimum wage and no-one local knows what theyre doing anyway] or Surgery. I seriously wish it could just be cut out.

My relationship with my husband is falling apart. He sees me breaking down crying and completely ignores me, acts as though I don't even exist. He just carries on and lives life as though I'm hardly in it. I feel so emotionally disconnected, like my emotions for love and happiness have completely run dry and I have no such possibility of feeling either. Its so hard. He doesn't know what to do and I can't blame him

All I feel is self hate, hate for everyone else with their happy lives, despair, sadness and fear. Fear of being stuck like this forever.

I have almost 3 years of hate for this thing built up inside me. And I feel like it is starting to win.
It has taken away all my happiness.

I feel as though I am at the end of the line. Like their are few options left for me.
I have no real physical form of support. I always have someone tell me I have reached the end of the line and to learn to live with it.

Noone can help me. Australian doctors have no idea what they're doing. I am on minimum wage so I can't go overseas.

Even the members on this forum say my symptoms are unusual and not typical of vulvodynia.

I just don't know what to do. I feel so lost. I need any advice I can get. Please don't say I need councilling, I am in a small town and the Psychologists around here are hopeless and gossipers. I have tried a pshychologist and it did nothing for me except make me feel worse.


Last edited by sailor_moon on Sun Jan 31, 2016 2:43 am; edited 1 time in total
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Re: Death would be kinder than this...

Post  WaahwaahUK on Wed Jan 27, 2016 2:41 pm

I am so sorry you are feeling this way. It's an incredibly lonely condition, and very much misunderstood. I am still coming to grips with my own pain and I wish I could tell people a definitive cure but of course, we all have the pain for varying reasons. I just want you to know that I know you feel alone, we all do, and we all need to know someone is reaching out with a small piece of understanding. Small as it may be.

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Re: Death would be kinder than this...

Post  WaahwaahUK on Wed Jan 27, 2016 2:45 pm

And please don't give up. I truly do believe personally that we all need to find our individual treatments that can come from many different angles. It can take so long for some of us admittedly, but there are stories of women finding themselves better after years of pain. Don't give up. You will find your way with this. I really believe that.

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Re: Death would be kinder than this...

Post  PainBlogger on Wed Jan 27, 2016 10:10 pm

I agree with everything Waahwaah has said. It's understandable to feel hopeless when in so much pain and dealing with additional consequences of that pain. I think when feeling in such a crisis it's important to focus on what one can change and not give up on the other things but just put them to one side for the time being. It's very difficult but I've found it helpful to try and focus on the good things that I do have in my life. If we look hard enough I think we can all find some positive things. I've found the book "Mindfulness for Health" (Burch/Penman) helpful. It's a lot cheaper than going on a mindfulness course.

People do get better from chronic pain conditions. It's difficult to believe, I know that from personal experience. But just because you feel so bad today, doesn't mean you will in a few weeks time, or months or years time. I hope you get some relief soon.

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Re: Death would be kinder than this...

Post  sgw11 on Thu Jan 28, 2016 10:06 am

Hey sailor_moon,

I just want you to know that I am feeling exactly the same! I've had vulvodynia for about 2.5 years now and it's driving me fucking insane! I'm the same as you, I've tried Lyrica, physio, fluconazole for a month, amitriptyline cream and meds (I'm currently on 50mg which I've been on for about 3 months and still no change), laser therapy (which is meant to plump up the skin and make the nerves further away from the surface so there's not as much pain - but I'm 23 so should have no problem with the collagen levels in my tissue...and that also didn't help), numbing cream, changed to sensitive laundry detergents, and I'm now taking some chinese herbs which taste like shit but what else can I do!? I've also just started seeing a psych so we'll see how that goes.

I am so fed up with my life revolving around this condition, the gyne appointments, the psych appointments, the physio appointments, re-filling my meds, drinking the herbs morning and night, taking my meds before bed. And not to mention all the money that I've spent on this bloody thing! I'm also from Australia so I know what the fees are like. I'd much rather be spending the money on holidays or something that I actually enjoy!

I don't have a husband, but I do have a boyfriend. I'm also sick of him having to be my support system, seeing me upset all the time. And I can see that it's taking an emotional toll on him too. I'm not interested in any other form of sexual contact anymore. I feel like a totally different person and I hate it. I hate that this is affecting someone else apart from me. And I can see that it's stressing my mum out too coz she just wants to help and she feels so helpless.

And I also feel the envy that you feel too. I look at my sisters, my friends, everyone just enjoying having sex, not even thinking twice about their vagina! I miss those days and I'm so fucking pissed that I've got this fucking condition.

I apologise for the language but it's just how I feel. If you ever need to talk to someone, don't hesitate to send me a message. I'm always here for a vent.

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antibiotics

Post  Marylynnreily on Sun Jan 31, 2016 2:26 am

You can take my advise or not but...Ive been right where you are, and please let me ask you to ask your doctor for a round of clindamycin capsules They are what cured me. Ask for 300mg, 3 times a day for 10 days, and you must, MUST take floraster (sachromyces boulardii) and another strong probiotic like align with it, and 2 weeks after your done with the prescription) and tons of high quality kefir and yogurt to prevent c diff, diarrhea and other intestinal issues, that's how POWERFUL clindamycin is. It kills a great many different bacteria. It IS an INFECTION> I don't give a damn if anyone agrees with me or not right now. That WHY it is inflamed. Your vagina is not liking a foreign bacteria up in there. It happens. Bacteria gets in our flowers, they love it there. it sux. its a curse being a women.
anyway, clindamycin is prescribed for tooth infections, dental abscess, and bacterial vaginosis aswell here in the states. usually 300mg twice a day, but you need a good strong dose. Please ask your doctor, I am not a medical professional, but that is what worked for me.
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Re: Death would be kinder than this...

Post  sailor_moon on Sun Jan 31, 2016 2:54 am

Thanks ladies. To get any form of reply means the world to me.

WahhwahhUK I wont be giving up any time soon, I WILL get to the bottom of this!! I hope everyone else on here does too!

Another aussie girl with this condition, you would know how hopeless and incompetent the doctors here are! Most have no frigging idea what Vulvodynia even is.

marylynnereily thankyou I have thought about Clindamycin for Desquamative Inflammatory Vaginitis but usually it is accompanied by an excessive discharge so it kind of slipped my mind actually. Thankyou for the reminder! Much appreciated .I have had biopsies n numerous swabs done with no result of infection, but apparantly DIV does not show up as any form of infection, it is due to an 'unknown organism'.  I am not very confident of the way things get tested anyway! Can I please ask what your symptoms were? I would love to hear your story of how you got diagnosed and how long you had it for too.
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Re: Death would be kinder than this...

Post  mrs.optimistic on Fri Feb 19, 2016 9:23 am

Sending love your way. Please don't give up. There's more to life than just this. God works in mysterious ways. Things aren't any better here in the U.S. I've seen dozens of doctors and no one is educated about this condition here either. I can only home vulvodynia becomes more well known over the years. Maybe if people knew it existed we could find a cure. There's breast cancer walks and this and that - yet not a single soul knows about vulvodynia unless they have it..

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Re: Death would be kinder than this...

Post  mrs.optimistic on Fri Feb 19, 2016 9:24 am

*hope

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Re: Death would be kinder than this...

Post  emalita on Thu Mar 31, 2016 2:42 pm

I'm hoping you're doing better since you wrote this!

I know you've said you had a biopsy, but have you been seen by a doctor who specializes in Lichen Sclerosus (or any of the "lichen" family)? I know if you google LS or any of the lichens the pics are frightening! However, part of my issue (not the worst of the pain) was slightly itchy, sore, raw, sticky, shiny, burning skin. I have NO whitening or scarring like the the horrible pictures show, but a specialist looked at me for my main source of pain and immediately told me I had a mild form of LS. I was devastated!! However, he put me on a hydrocortisone cream compounded in a Vanicream Lite Lotion base. It seemed weird and wrong to put that lotion on my bits, and I have gotten yeast infections in the past from hydrocortisone ointments. However, within about 3 days of using a small amount twice a day, I have seen drastic improvement. The cream does NOT sting, soaks in nicely, and does NOT leave a horrible unbreathable film.

From what I've read, even though biopsies are used to aid in the diagnosis of LS, they are more so there to rule out other conditions. Meaning that the biopsy isn't going to come back showing LS.

Please be careful using strong antibiotics. They have only ever made my condition worse, and I believe they are what made me unable to get a handle on a "cure". I was on 4 rounds of strong antibiotics in a month, and in the end it was boric acid that helped tip the balance back in my favor a bit.

Where is your pain? On your inner labia? Near your vaginal opening?

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Re: Death would be kinder than this...

Post  sailor_moon on Sat Apr 02, 2016 11:44 pm

Thankyou so much again everyone for your replies. I was in a terrible state when I wrote this but now I have some good news and can tell you I FINALLY have a proper diagnosis after almost 3 years. I have either Pudental Neuralgia or Pudental Nerve Entrapment!

I have had 2 nerve block injections done with Anesthetic and steroids, 1 month apart, and both times I got immediate relief and it has reduced my symptoms and inflammation a lot! I am currently in the process of getting these injections done once a month as the steroid is slowrelease over a couple of weeks and my doctor is also in the process of trying to find the best specialist he can who will be able to do the appropriate tests to find out whether the nerve is trapped or just irritated and inflammed.

He discovered my pudental nerve was the problem by pressing on different areas around my vagina, thighs and butt cheek. On the one side there was a spot he pressed under my butt cheek that was extremely painful. He then pressed on the same side where the pudental nerve runs on my vagina wall and once again my pain was through the roof. Had the injection and the anesthetic kicked in and all pain was eliminated.

It will be a long road ahead for me as it is a very difficult thing to treat, there is no easy fix. But at least I am now on the right track. If you havn't had your pudental nerve checked please do it! I will keep everyone up to date on my progress, and thank you all so so much.xxx
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Re: Death would be kinder than this...

Post  senozs1 on Thu Apr 07, 2016 7:04 pm

Hello sailor_moon, how are you feeling after the steroids? Do they last long, and is there a chance of long-term (hopefully forever) relief? Are you on Lyrica or anything?

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Re: Death would be kinder than this...

Post  sailor_moon on Thu Apr 07, 2016 10:51 pm

Hi there! The steroids have helped a fair bit, I still have bad flares on my period but it's only intense itching and aching nerves, I haven't had the unbearable burning sensation once which I usually get before my period. The steroids take 2 weeks to fully kick in as they are slow release, after a week and a half my itching was minimal in comparison. Still getting bad left side nerve pain down my butt cheek and leg though, especially when I sit. It took my inflammation down a lot appearance wise twice I am happy about.

Unfortunately people are very rarely cured fully by steroid injections alone. My doctor is in the process of finding the right specialist who excels in the pudental nerve and send me to them so we can find out what exactly is wrong with the nerve. I will definitely keep posting my progress as I go Smile His wife is a specialist pelvic physio but she not long had a major operation so I can't do physio with her...he is trying to find someone as knowledgeable.

I was on Lyrica for 7 months, 300mg a day and it did absolutely nothing. Same with Endep. Currently in the process of weaning myself off it.
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Re: Death would be kinder than this...

Post  orangelight on Thu Apr 14, 2016 7:01 pm

Hi sailor_moon, happy to hear that you have a proper diagnosis! I've had pain with intercourse for 6 years now, and it took 14 doctors and all sorts of self research to find out what it is. It's so important to not give up on finding a proper diagnosis. After so many years every time I see a new 'practitioner' I have to trust my gut and ask if they are giving me a diagnosis they can back up with facts, or if they're biding their time and throwing possible solutions at me.
For your pudendal nerve neuralgia, have you tried acupuncture? I don't know if they have someone like that in Australia. There are some people here who have a specialization in urology/urogenital neurology, and use acupuncture to treat certain muscles and nerve tissue around the pudendal nerve. It is less invasive then steroid injections in the long run.

Also, this is my first post on this forum. Nice to meet you all Smile

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Re: Death would be kinder than this...

Post  sailor_moon on Thu Apr 14, 2016 8:56 pm

Hi orangelight Smile welcome to the forum! Would love to hear your story!

We have a lot of acupuncture available here in Australia but it is really hard to find a good one. I live in a small town rather than a city which makes it even harder.
I will definitely keep in in mind though and see if I can find someone good! I've never had acupuncture before so I don't know what to expect or look for in someone good.

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Re: Death would be kinder than this...

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