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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 member looking for self-care and treatment ideas

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New member looking for self-care and treatment ideas

Post  Millie on Thu Jan 15, 2015 4:12 pm

Hello
I am 25 years old and have been suffering from provoked Vulvodynia (Vestibulodynia) for the past year.

About 2 years ago I changed my contraceptive pill from Microgynon to Mercilon because I was experiencing side effects such as nausea and vomiting, however the side effects of Mercilon were much worse and I believe the main cause of all the problems I have experienced over the past two years; including vulvodynia. My skin and hair has become very dry and I have suffered from eczema on my arms and legs and also seborrheic dermatitis on my scalp, resulting in hair loss. I have become more anxious and stressed and have problems with digestion and bloating. About a year ago I started to experience pain during sex but tried to ignore it putting it down to vaginal dryness, the pain only got worse and worse until sex was unbearable. Believing I had thrush I used a clotrimazol pessary but this had no effect on the pain whatsoever. Weeks later I noticed a patchy, red rash on my back that was itchy and dry. A doctor explained that it was a yeast rash and prescribed me with a miconazole cream, after using this for over a week, the rash had engulfed my entire back, stomach, thighs and face. I was traumatised and had no idea what to do. I saw three nurses and three doctors and all of them were baffled, I was sent away with antihistamines and a hydrocortisone cream (something I was told would initially make the rash worse) and the rash calmed down and disappeared literally over night. On top of all of this I was getting urinary tract infections on a weekly basis. Believing all of these issues were down to the pill I stopped taking it, and noticed an amazing difference in the quality of my hair and skin, however sex was still painful so I was referred to see a Psychosexual Therapist after being told the pain was psychological.

I have now been visiting the same psychosexual therapist for the past 9 months who after taking some swabs diagnosed me with Bacterial Vaginosis, I was given a course of antibiotics I hoped that this was the end of the pain. Unfortunately it wasn't and after trying Trimovate cream with no success she referred me to the hospital last month where I was properly diagnosed with Vulvodynia. The doctor told me that it is possibly nerve related and advised me to take antihistamines and use a 5% lidocaine gel before having sex. The antistamines have not helped but I have recently been told to take a higher dose. The lidocaine gel helps but only very slightly and ideally I am looking for something to cure my Vulvodynia completely.

I am very much against the idea of taking Amitriptyline and will avoid it at all costs. After spending endless nights researching I think that I may have a hormonal imbalance, and that all of these symptoms are linked. I am waiting for the results of a blood test to confirm this even though my doctor has told me this is highly unlikely.

does anyone else with vulvodynia have these symptoms? or believe their vulvodynia is caused by a hormonal imbalance?

I have also tried; unfragranced soaps, moisturisers and washing detergents. (helped with skin irritation and urinary tract infections)
calcium vitamins (reduced pain when urinating)
drinking more water (reduced urinary tract infects)
different positions whilst having sex (helps slightly)
Latex free condoms (no help)
Lubricants (no help)
100% Natural tampons and sanitary towels (pain and irritation was reduced greatly in comparison to synthetic tampons)

Millie

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Re: New member looking for self-care and treatment ideas

Post  sailor_moon on Thu Jan 15, 2015 11:02 pm

OMG i dont believe it, your symptoms are just like mine, minus the skin rash. I had chronic nausea and vomiting 24/7. Every single day. And my vulvodynia started at the exact same time. My hair is falling out. I am constantly fatigued. My skin is dry.I get hot flushes. My vulvodynia symptoms are not just during sex, they are every day with no known aggrivators. It all started when I went off the pill. My vulvodynia is mainly itching and burning with nerve like pain in 1 side.

No treatment worked, antifungal, steroids, prebiotic, creams and lotions, antibiotics. Antidepressants because I got told it was all in my head (antidepressants made me so much sicker in terms of nausea and vomiting!) I got my hormones checked at least 10-20 times and the doctors said I was all good. What a load of shit that turned out to be! I got told it was all in my head and that I needed councilling.!

It took me 14 doctors and $12000 down the drain on non successful doctors and treatment til I found my current doctor. He did a hormone profile test which is when you get a blood test on day 7,14,21 and 28 of your cycle to measure what your hormones are doing from week to week. He also did an AMH hormone test. Well... results came back and we were blown away. I have very low estrogen, my FSH and LH are way too high and the AMH test as well as an ultrasound confirmed I have PCOS. Now this is where things get tricky. Most women with PCOS have high estrogen, not low!!. My Androgen is slightly high which is normal in PCOS.

I need estrogen, but the doctor also suspects I have endometriosis, which feeds and grows on estrogen. With endo, it can settle on nerves causing vulvodynia. So I am on a waiting list for a laproscopy and hystoscopy to see if I have it and remove it, and also see what else internally could be causing my vulvodynia.

So it's just a waiting game now for my upcoming op to come around and go from there. It could either be endo or the hormone imbalance causing my problems. I dare say a mixture of both.

Oh, and if you have any form of hormone imbalance, antidepressants will make it worse, hence me getting sicker. My doctor told me this info and was disgusted at how I have been treated. I came off them and feel so much better.

So yes, Get your hormones checked properly! Definitely! And get off any birth control because if you are on it the blood tests won't give an accurate reading.
I hope my story has helped you! Feel free to ask any questions!
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Re: New member looking for self-care and treatment ideas

Post  Millie on Sun Jan 18, 2015 8:11 pm

omg that's crazy, I have stopped taking the pill as well, it seems to me that the contraceptive pill just messes everything up and then even when you stop taking it you're stuck with the side effects. oh no it must be horrible to suffer with vulvodynia every day and not just during sex Sad I can only imagine how awful it must be.

I also got told the pain was all in my head to begin with and am constantly being told to use dilators. I cant believe you had to go through all that before getting some answers, my doctor was reluctant to give me the test as she believes there is nothing wrong with my hormones. so I am expecting to be told the same as you, that everything is fine when I really believe that it isn't.

I will definitely avoid the antidepressants after hearing your story! I'm still waiting for the blood test results but am thinking about trying a low oxalate diet but don't know much about it. I am also wondering if my vulvodynia is nerve related then how can my hormones be a part of the cause. its all so confusing!

Good luck with your op and all your tests and treatments, I hope everything goes well for you and you can figure out the cause of the vulvodynia. Thank you for your reply!

Millie

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Re: New member looking for self-care and treatment ideas

Post  sailor_moon on Fri Jan 23, 2015 11:04 am

Get your hormones checked. Obviously something hormone related has been going on for you to have been nauseated and vomiting on the pill. It has probably thrown everything out of whack. When my symptoms first started all I focused on was the vulvodynia, rather than focusing on what was going on with my entire body as a whole. Apart from vulvodynia I have nausea to the point of double vision, vomiting, irregular periods, Super heavy painful periods when I actually do get them, super sore boobs, hair falling out on head underarm and public area, migraines, hot gushes, period pain when I don't have a period, dry skin, extreme bloating, IBS, reflux, chills and fever on occasion.

If you can't get your doctor to help you, move on. Do your research on who the best specialist is in your area. Or try a really good naturopath.

Do you regularly suffer any other symptoms?
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