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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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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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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

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: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6


Questions regarding symptoms

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Questions regarding symptoms

Post  Delilah1 on Sun May 05, 2013 3:45 am

Before the pain and burning of vulvodynia started I noticed very defined reddish purple lines on the inside of my labia minora from the urethral opening down to the bartholins glands. On the days when the pain is at its worst they are more visible and seem to fade when the pain is more tolerable. Does anyone else have these lines?

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Re: Questions regarding symptoms

Post  Sarah001 on Sun May 05, 2013 11:01 am

Yes! I have the exact same thing! A GP thought it was lichen planus in linear formation (it wasn't) but my current physio says it's where the pelvic floor meets the bones which makes more sense as I have very tight pelvic floor muscles. On good days they are barely visible but like you on bad days they are very dark red and obvious. I've never come across anyone else who described theirs as lines before, have you had your pelvic floor checked?
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Re: Questions regarding symptoms

Post  Delilah1 on Sun May 05, 2013 2:40 pm

Thank you for responding! Just knowing someone else has noticed the same thing is so comforting. I don't want to bombard you with too much information but I really want to know if we have anything else in common.
This all started last September. I noticed a fishy smell when washing with soap. While waiting to see my Dr. had sex with my husband one night. When he entered it felt like i was being cut with razor blades near the urethra. Never had that before!! I had been very active for the previous 3 years. Exercising, lifting weights, and then bike riding...(wonder if that had anything to do with it?) Started having burning and swelling in the vagina and vulva. When it was at its worst i felt a throbbing inside on my cervix. Then the whole vulva turned red. I have red spots at 5 and 7 oclock. I have never had a yeast infection and this was the first time I have ever been diagnosed with bacterial vaginosis. All STD tests were negative for me. Dr. gave me vaginal metrogel. I took one dose and had a reaction. Lump in my throat and numbness/tingling in my hands and feet. Felt like I was being poked in the feet at times. Stopped using it and did 5 days of peroxide douche. The BV went away but the burning never did. Sometimes I have shooting pains in my clitoris and now bladder discomfort at times. I do have a history of IBS and headaches. Now here is the strangest part--- Days after sex with my husband he started having burning/pain when he urinated. He went to the doctor. They found no bacteria in his urine. STD tests negativ. Gave him doxycycline just to see if it would help. It never helped. The pain spread to his bladder and then prostate. They gave him Cipro. That didn't help. He went to a urologist. Said he had nonbacterial chronic prostatits. He has been miserable. He read the book "Headache in the Pelvis" and got his doctor to send him to Physical Therapy. I have been doing the stretches/exercises from the books "Ending Female Pain" and "Heal Pelvic Pain" We have told all of the doctors about our symptoms starting at the same time. They have no answers. Just did STD tests. Is this just a coincidence or is there some kind of virus causing this???
My pain is better than it was 5 months ago. The burning is still there but gets worse at times. I can't wear pants because they really irritate me. I don't have discharge. If anything I am more dry. I am 45 years old.
Dr. gave me estrace cream but it doesn't seem to help. My periods are still normal. I've never taken birth control. Thank you for listening!! Can you tell me about yourself?

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Re: Questions regarding symptoms

Post  Kathye10 on Sun May 05, 2013 10:10 pm

Hi Delilah,

I don't mean to butt in but I read that you and your hubby both had issues around the same time. I wonder if you guys have some sort of infection (bacterial) that wasn't picked up through testing. I bring this up because it happened to me. I'm still trying to figure out what caused this for me, but there are really only two possibilities, bacteria or pelvic floor dysfunction or a combo of both. On some cultures I would show up negative for both yeast and bacteria (I've been to several Dr's in the past 5 months) and others I would show positive for bacteria. One of the Dr's did a DNA probe test to rule out bacteria's that don't show on normal cultures. They found one that doesn't normally show called, Mycoplasma hominis. I'm being retested for it now to see if it's still there. There is also one called Ureaplasma that can cause bladder related issues in both men and women. Both need to be treated for awhile....from what I've heard anywhere from 1 month to 6 months on antibiotics. Mycoplasma reacts to doxy long term, and I think Ureaplasma reacts to Z-pack long term. Sometimes us women (men as well) can be carrier's and not have it actually infect us, but maybe the BV that you had (unbalance in PH) brought one of these to surface. I obviously don't know your entire situation but you and the hubby might want to have your Dr look into it. Another member here had Ureplasma and once she did a long cycle of antibiotics her V went away. This is why I'm retesting, because if that's all it is, I will gladly take the antibiotics. Good luck! Very Happy
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Re: Questions regarding symptoms

Post  Sarah001 on Mon May 06, 2013 1:04 pm

Hi again, the lines of red skin seem to be almost where our similarities end! Me and my partner of the time were using condoms as contraception so there was never any question of him getting anything, I tested negative for all stds and BV too and I didn't have any BV symptoms either. Mine is definitely due to my pelvis being severely unstable and my pelvic floor being very very tight and it happened after a few months of seeing a physio who stupidly thought using more pelvic floor activity might stabilise my pelvis and it just brought on vulvar pain and didn't stabilise me either. I do lack discharge like you however and find I'm very dry (I'm nearly 40) but I think for me the lack of blood flow to the area and the muscles being clenched all the time are behind that. It does seem odd you both got symptoms so close to each other and I think Kathy is right it is worth checking for the more unusual bacterias but it could just be either coincidence or, don't be offended, your husband may be bringing his symptoms on phsycosomatically which is easy to do if someone around you has symptoms. I'm not suggesting he's lying but you know how it is when someone close has for example a vomiting bug and you convince yourself you feel sick and then don't get it so you know you're bringing it on yourself? I hope you're not offended by that it is only a suggestion.
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Re: Questions regarding symptoms

Post  Delilah1 on Mon May 06, 2013 2:49 pm

Thank you Kathy and Sarah for replying. I appreciate your input and opinions. I will definitely make an appointment with another doctor and discuss the mycoplasma and ureaplasma connection. I will also ask my doctor for a PT referral and give that a try. This whole mess is a nightmare. I just want to be normal again. Just like everyone else on this forum. I wish you good luck!

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Re: Questions regarding symptoms

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