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» Just Diagnosed with Vulvadynia
Today at 1:57 am by angelique2016

» Vulvadynia
Yesterday at 7:45 am by mary jane

» Constant pain, I want to die.
Sat Jul 22, 2017 9:41 pm by Meggiemay

» What is Vulvodynia?
Sat Jul 22, 2017 9:21 pm by mary jane

» 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

» 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

Just Diagnosed with Vulvadynia

Tue Aug 02, 2016 9:11 pm by CherryTree23

Well, I was just diagnosed today, yay...my symptoms are just burning pain in vaginal opening. This all came about after taking Bactrim, Monistat, Clindomycin and Diflucan. This doctor was extremely confident I have Vulvadynia. Also told me my vaginal skin isn't red. Yes, it is, mine isn't typically electric red. He prescribed Ampytripline (sp) said, I have a very mild case, and worse case …

Comments: 7

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 …

Comments: 3

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: 21

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

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


New Here so Frustrated!

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New Here so Frustrated!

Post  Alana3 on Tue Sep 25, 2012 6:40 pm

I have been having problems since I was about 15. I had erratic, heavy periods which would stay for 2 weeks every 2 weeks. I was taken to a gyn who lectured me the entire time (while telling me that I was making it up so I could have free sex without the chance of getting pregnant). None of this was true, I was in a lot of pain and wanted relief. She never told me what she was doing and shoved the spec in me where I tensed up and freaked out and did the whole finger in butt thing (which I have never had after). So my first experience was horrible, but I got BC. And now I tense up whenever anyone goes there.

After being on ortho and enjoying an amazing sex life for a while, I decided that I wanted to switch to a different BC which made me crazy and bleed for forever, here is where sex started becoming impossible. I made excuses saying I never have it that's why it hurts, later I was put on Yaz which I had the same sex issues. I have since gone thru other birth control and have been on Seasonique (bled for 10 weeks straight), and Mircette, my current one.

Fastforward to about a year ago. I had supposedly an infection after infection where I was treated 27 times with different antibiotics where NOTHING went away. Finally, a urologist told me to go to a physical therapist who helped me like no other. I went to a doctor in Orlando and she right away said that I had endometriosis and IC and she wanted to do surgery for the endo and a Potassium Challenge for the IC. I wasn't convinced that this was for me. I knew that my skin there hurt, and felt like hell when I had sex not really endo related (a guy cant get past the opening-OUCH!)

So I went to a new doc last month. She put my on acyclovir (which is for Herpes but I don't have that). The pain went away somewhat but I ended up breaking out in hives. I have been on estrace, a compound of estrogen and lidocaine, benadryl, muscle relaxers, the acyvlovir. This doctor said that the only other thing I could do was take antidepressants, which I really don't want to do. That's a lie, I'm scared out of my mind to take them. She also said that this wasn't hormonally related, which I heard it was. I am so confused and so scared to take the antidepressants. I do want to feel better, but I feel like there has to be something more than those.

What do you girs do for this? Are there any other treatments? I am so sick of this, I want my normal sex life back. I cant get off the pill because I'll have my period for 2 weeks and I can't handle that either. I am sick of itching, burning and the feeling of having to pee sometimes. Is there hope that I can find some kind of treatment that won't make me gain weight, change my mood, have my hair fall out, etc, etc. Any advice will be great!!! (Sorry I know this is long and I'm complaining a lot, but I'm at my wits end)! Thanks!

Alana3

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Re: New Here so Frustrated!

Post  LillyK on Wed Sep 26, 2012 5:33 am

Acupuncture is what worked/works for me! That and getting off all pills. It may not be what you want to hear but it's worth it to clean up your diet and not put any meds into your body so that you can heal. Acupuncture could also address your endometriosis and IC issues as well. I would recommend looking for an acupuncturist who is trained to deal with female issues and can prescribe herbs. The other thing that works for some people (including myself) is to do an anti-inflammatory diet or a low-acid diet. Eat organic and healthy foods as much as you possibly can. You can beat it. It may take time but you can do it.

LillyK

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Thanks!

Post  Alana3 on Wed Sep 26, 2012 1:43 pm

Thank you! Yeah I want to get off everything for sure (except the pill I can't I've tried and bled for 6 months straight haha nice). I mostly take supplements, my diet isn't bad, and I'm at the gym or horseback riding at least 4 days a week. I am just so sick of feeling like I have a UTI all the time! Not to mention the burning, itchy ugh! I def don't want to go on anti's- they really scare me not only the dependency but the side effects too.

I actually am going for accupuncture on Friday. She isn't exactly for this, but said she was doing a lot of research for me and I trust her 100%. On top of that looking at a new doctor who actually specializes in v on Monday, we'll see what he says! I'm just so excited to possibly be taking a step in the right direction. I'm happy to hear that accupuncture works for you! Do you know what points she does and how often do you go? (Hope this isn't too personal to ask!)

The sad thing is, this doctor looked at me and automatically said surgery without taking the time to try other things first. So I don't really know for sure that I have endo or IC, but I'm sort of assuming I don't. I said no way, I don't want to go drastic when other things may help. But I'm adament about no anti-depressants (I swear they only put you on them so you don't care anymore). I'd be willing to try Estrace again or some other hormone in as little quality as possible, but nothing too crazy!

Alana3

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Re: New Here so Frustrated!

Post  BpCookie on Wed Sep 26, 2012 4:49 pm

Alana, I really feel for you hun. Ive tried many creams, many ointments, many pills, Ive ordered things that I saw on the internet, bought things at health food stores, if they said it would help I bought it. Nothing ever worked. I was so depressed. After about a year and a half of this Hell on earth, I was put on Lyrica and I thought that I had finally found the miracle pill. For about 1 and a half months I was out of pain and then it came back. uuuggghhh I just recently had a Pudendal Nerve RCA ablation done. I will know with in a few weeks whether it worked or not. If it doesn't help, then I'm back to square one. I will then cry, be depressed, be pissed off at the world, etc. Here is a small list of some of the things that I have tried. Maybe one or more of these may help you. Smile

Clobetasol ointment

Protopic ointment

Amitriptyline gel (this I recommend because it numbs the skin)

Neogyn

Gabapentin

Amitriptyline tablets

Emu oil

Vitamin E oil

Boric Acid suppositories

Ice packs (which does help)

A and D ointment (this helps a bit also)

Ive been on so many different meds that I can't remember their names. My best advice is, NEVER GIVE UP!!!! Always continue the search for relief. When it comes to your Dr.s, don't be afraid to speak up. Don't just follow your Dr.s orders blindly. Do research. There is something out there that will help you, you just haven't found it yet.

Hang in there. hugs

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BpCookie

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Re: New Here so Frustrated!

Post  Alana3 on Wed Sep 26, 2012 5:49 pm

Well am I being stupid for not wanting to be on antidepressants? I will look into all of your meds! Now all of a sudden my bladder hurts, I really hope its not IC cuz that sounds even worse! But this is a new symptom as of last week how annoying. :/ do you ever feel like you need to pee a lot? haha

Alana3

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Re: New Here so Frustrated!

Post  Alana3 on Wed Sep 26, 2012 5:50 pm

BpCookie wrote:Alana, I really feel for you hun. Ive tried many creams, many ointments, many pills, Ive ordered things that I saw on the internet, bought things at health food stores, if they said it would help I bought it. Nothing ever worked. I was so depressed. After about a year and a half of this Hell on earth, I was put on Lyrica and I thought that I had finally found the miracle pill. For about 1 and a half months I was out of pain and then it came back. uuuggghhh I just recently had a Pudendal Nerve RCA ablation done. I will know with in a few weeks whether it worked or not. If it doesn't help, then I'm back to square one. I will then cry, be depressed, be pissed off at the world, etc. Here is a small list of some of the things that I have tried. Maybe one or more of these may help you. Smile

Clobetasol ointment

Protopic ointment

Amitriptyline gel (this I recommend because it numbs the skin)

Neogyn

Gabapentin

Amitriptyline tablets

Emu oil

Vitamin E oil

Boric Acid suppositories

Ice packs (which does help)

A and D ointment (this helps a bit also)

Ive been on so many different meds that I can't remember their names. My best advice is, NEVER GIVE UP!!!! Always continue the search for relief. When it comes to your Dr.s, don't be afraid to speak up. Don't just follow your Dr.s orders blindly. Do research. There is something out there that will help you, you just haven't found it yet.

Hang in there. hugs



And OMG that is overwhelming! haha

Alana3

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Re: New Here so Frustrated!

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