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    » Acupuncture advice please
    Today at 2:25 am by ryn207

    » New and need some help
    Today at 12:49 am by Sad

    » Please tell me this can get better
    Mon Feb 19, 2018 2:10 am by anon99

    » Lichen Sclerosus
    Fri Feb 16, 2018 2:47 am by ryn207

    » MAY HAVE FOUND A CURE- PLEASE READ
    Thu Feb 15, 2018 10:04 pm by infinitelywondering

    » my rock bottom, psychological effects of vulvodynia, I told him he can leave me
    Wed Feb 14, 2018 6:43 am by renegade_magdalena

    » Some interesting information about nerve pain in general
    Wed Feb 14, 2018 3:58 am by Athena

    » Sore after using dilator for first time in a year
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    » What helped me
    Wed Feb 14, 2018 3:38 am by Athena

    New and need some help

    Wed Feb 21, 2018 4:30 pm by LindafromNJ

    New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

    Comments: 1

    MAY HAVE FOUND A CURE- PLEASE READ

    Thu Feb 15, 2018 10:04 pm by infinitelywondering

    Dear all,

    Today has been the day I've been waiting for. The day something FINALLY makes sense.
    I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


    after having a vestibulectomy with no success, I decided to visit …

    Comments: 0

    NO PAIN DURING SEX

    Sat Feb 10, 2018 12:18 am by rockylife

    I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

    Comments: 2

    Newby not sure where to turn

    Thu Feb 01, 2018 3:32 pm by Cerjo87

    Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

    Comments: 4

    Looking for a friend..... and new problems

    Sat Jan 06, 2018 11:38 pm by infinitelywondering

    Hi everyone,

    I hope you're doing well.

    I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

    6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



    Comments: 8

    Newbie to the site

    Sun Jul 30, 2017 12:16 am by Ksa

    Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

    Comments: 4

    Vulvodynia from #metoo media coverage

    Thu Jan 25, 2018 9:01 pm by dooleyhornberg

    I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

    Comments: 0

    So frustrating!!

    Thu Jan 04, 2018 1:15 am by Hannah77

    Well I'm back in pain after 7 years of pain free days.
    I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

    Comments: 3

    Looking for suggestions or encouragement

    Sat Jan 13, 2018 12:10 am by ryn207

    Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

    In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

    Comments: 4


    "Barney's" experience...

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    "Barney's" experience...

    Post  banzai on Sat Apr 30, 2011 9:35 pm

    Hello everyone. I just joined the forum yesterday. I have read through several of the stories on here and decided to share my own. I guess I hope that maybe someone out there will be able to relate. Also, they say writing is therapeutic, so maybe putting it out there will help with some of the emotional healing as well. Please just bear with me as this may be somewhat complicated...

    My story in a nutshell:
    Doctors visited: 5
    Number of office visits: 13
    Medications/Remedies prescribed: Flagyl, Monistat, Diflucan, Probiotics, Cleocin, Steroid/anti-fungal cream, Amoxicillin, Lysine, Zinc, Garlic, Multi-vitamins, Gentian Violet, Levaquin, Atarax, Baking Soda, Desitin, Gabapentin, Lidocaine Jelly
    Symptoms: Burning/Rawness, Redness, irritation, and occasional itching all over the vulvar and sometimes the anal area. I also have a fairly constant discharge. It seems to range in color and consistency. I have always had discharge and realize it is normal with our cycles, but this is far from normal. Sometimes it is white and thick (but not yeast) and other's yellow and extremely thick and sticky like glue. Still at other times, it is clear and stringy. I have a hard time asserting if the irritation I have comes from the discharge, or vice versa.

    Now for the not-so-short-version...

    This is all started for me back in November. It was actually November 1st that I woke up with a burning and discharge. I thought that maybe it was a bacterial infection as I have had one in the past and it seemed relatively similar. I went to planned parenthood where they supposedly confirmed my diagnosis and gave me Flagyl to take orally for 7 days. After the 7 days I still was not feeling right. I then got my period and when that was done, what seemed like a yeast infection. Back to planned parenthood where they told me to use at least a 3 day treatment of Monistat. I did that and still felt discomfort so I used another 3 day treatment. Still no relief. Back to PP. I actually went back 2 more times for a total of 4 visits there. In those visits, they told me they saw nothing wrong on the wet mounts but prescribed Diflucan anyway, tested me for various STDs, and said to try reducing any potential allergens. Diflucan didn't help, STD tests were all negative, and changing detergents, etc. did not seem to make a difference.

    I suffered in silence until the beginning of January before seeing another doctor. This time I was visiting my sister for a week across the country and broke down to her with what was happening to me. She insisted I see her gynecologist. This doctor was wonderful and felt like I was finally getting some real attention and on the way to a cause and cure for my woes. No bacteria or yeast, but she said she saw a large amount of white blood cells and thought potentially I had strep b. I started on a 3 day course of Cleocin, headed home and waited for the official culture results. The doctor called to tell me "good news," the culture was fine. To me, it was horrible news... back to square one.

    Next I decided to make an appointment with my own gynecologist. (I had been avoiding this as my insurance ended in September- of course- and knew it would be a lot paying out of pocket) When I saw her, she at least affirmed that I definitely had something going on. She could see the irritation as well as the toll it was taking on my life. She knows how active of a person I normally am working out 1 1/2-2 hours a day 5-6 days a week. Since all this began, I have been unable to do most of the activities I normally had done, never mind going to the gym. However, she did the routine tests and saw nothing unusual. She decided to try something very old school and we both crossed our fingers and hoped for the next 4 weeks of Gentian Violet treatments. (Bright purple liquid that was painted both inside and outside the vulvar area once a week for 4-5 weeks. I started referring to my lady parts as my "Barney.") At the 5th visit to her, she finally told me "You are very hard to treat" and said I needed to find a specialist. Problem was, she didn't know of any in the area. Luckily I had done my own research and found one about an hour away at the Cleveland Clinic. Problem was, I had 6 weeks to wait until I could even get an appointment.

    By this point, I was VERY depressed. I obviously was struggling in so many aspects of life- no full time job, but full time pain and I distanced myself from friends and of course any potential intimate relationships. My parents noticed a change in my lifestyle and behavior and were concerned. I had confided in my mom before, but I think she lacked an understanding of just how serious what I was feeling was. I can't say I blame her since I would have no idea what this was like if I wasn't going through this myself. But she now insisted that I go see another doctor while I waited for the specialist appointment. Mom sent me to her GP just to get another perspective. This was one of the worst experiences of my life...

    I was treated very disrespectfully by the GP. Being a woman and mother, I thought perhaps she would be able to be a little more sympathetic. Instead, she was rude, hurtful, and degrading. She laughed at how many doctors I had been to, laughed at the fact that I had tried so many medications, and basically just laughed at me in general. She thought I was crazy. None of my symptoms or complaints seemed viable to her because she could not see them. She suggested I needed to find things to keep me busy, that being home wasn't good for me. She took a culture and did some additional STD tests even though I already had done everything including herpes and HIV 2-3 times, prescribed me anti-anxiety medication and some more antibiotics, and sent me on my way. I had to go back to get my results from the culture (of course negative), but that will be the LAST time I ever see that doctor again!

    Finally, I saw the Specialist at the end of March. Everyone at the Cleveland Clinic was wonderful. The nurses took the time to know me and listen to all my past history. They could see I as visibly upset and did all the could to comfort me. I was so grateful as I finally felt like there was someone out there who at least understood my plight. The doctor was very thorough as well and was finally able to give me some sort of explanation for my issues, my nerve endings were out of whack and needed to start trying some things to get them under control! It still doesn't make a 100% sense to me, but it's better than anything else I have heard in the last 6 months so I am going with it. I am currently taking a lower dose of Gabapentin and using Lidocaine Jelly. I can't say it has solved my problems completely, but it has helped lessen the constant pain to a degree.

    So, that's it! If you managed to follow my story, thanks for reading all of that. Again, I know we each have our had our own journey with this and many of you for far longer than I have had. I hope that with this website and through other members of the forum, I can try and stay positive and not let this get me down so much. I'm 32 and very much have my days of feeling like the best part of my life is already over. I need some optimism, and quick!



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    Re: "Barney's" experience...

    Post  lisa98 on Sun May 01, 2011 12:17 am

    Welcome, thanks for sharing your story, I hope you find some solace in the similar stories here. I think you should write your crap doctor a letter. I wrote a letter to my rubbish gyno who, for a whole week's pay, humiliated, hurt and finally dismissed me. It was very therapeudic, and you never know, it might have made her a better doctor.

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    Re: "Barney's" experience...

    Post  Mouse on Sun May 01, 2011 10:20 am

    Hi there and welcome!

    I'm sorry you have had such a hard time. I don't know why this journey is such a hard one. Did you tell your Mother what a cow her GP is? That should sort her! Some Drs need a slap up the side of the head.

    The one who treated me like a fool and refused to give me an appointment for 3 months (until I asked for a referral somewhere else) seems to like the cafe just up the road my house!!! I get to see her regularly. I would still like to punch her. I sent her all the research I found after I diagnosed myself via Dr Google, she said yes that sounds like it and then charged me! And then charged me again when someone else advised her what to prescribe. Open a bloody book woman, you must have some! I would love to send her a letter but she seems a bit slow with comprehension. Oh she's a gynaecologist and I got the V. after she operated on me.

    I hope you are finding some answers now. The best part of your life is yet to come. Be strong hon and then come on here to whinge =) Take care.

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    Re: "Barney's" experience...

    Post  Sebby (Admin) on Sun May 01, 2011 11:17 am


    Hi and welcome to the forum and thank you for sharing your story.

    It is quite common for us to be shipped around from Dr to Dr and to be told it is all in our heads!

    I am glad you have found someone who at least accepts your pain as real

    I am on Pregabalin (another anticonvulsant) and have found it has helped to cut down the pain a great deal along with Bio-feedback pelvic floor treatment. I am doing Dr Glazers home training from www.vulvodynia.com and am finding it helpful.

    I advise you as many will on here to look into pelvic floor treatment

    Take Care

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    Re: "Barney's" experience...

    Post  Sarah001 on Sun May 01, 2011 12:52 pm

    Hi, can I just throw Desquamative Inflammatory Vaginitis into the mix? The "yellow discharge like glue" and white clue cells, and the suspicion of strep are all mentioned in this condition, it's not common so may be that you either haven't come across anyone who's encountered it before or that they're not even considering it. Look it up on Google and you'll see you fit alot of the criteria for it.
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    Re: "Barney's" experience...

    Post  Mouse on Mon May 02, 2011 12:30 am

    Sarah, I had a strep B infection after the op. I never found out what that means. The useless gyny said it can just live there indefinitely... she wasn't right about anything else. The only information I could find seems to focus on strep B and the effect on pregnant women. I don't have any discharge these days everything has dried up :\

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    Re: "Barney's" experience...

    Post  banzai on Tue May 03, 2011 4:09 pm

    Thank you all for your replies and your support. All is very much appreciated. Wish none of us had to deal with this, but nice to know I am not going through it all alone.
    As far as the Strep B diagnosis, I spoke more to my regular gyno about it and she said that many doctors, including herself, don't consider that an issue unless you are pregnant. Strep B is a natural inhabitant of our bodies and shouldn't normally cause problems. Her nurse told me even if they had diagnosed me with Strep B at the other doctor, it would have been very difficult to get rid of it because it is supposed to be there to a degree. Again, no consensus among the medical "professionals."
    I will look again into the DIV, but I believe I did research that at one point. May be worth looking into again though and bringing it up if/when I head back to the specialist.
    Sometimes I think the Gabapentin is working and other times, I feel just as awful if not worse that I was before the medication. It's such an up and down sort of thing and just another frustration trying to get a handle on the dosages, etc.
    I am not familiar with the pelvic floor treatments as I do not necessarily have that sort of "pain." Everything down there is more raw and irritated than a stabbing or tightness. What exactly do these treatments do and how do they help?

    Thanks again ladies for the warm welcome and help.

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    Re: "Barney's" experience...

    Post  Sarah001 on Tue May 03, 2011 7:28 pm

    The operative word in my post was suspicion of strep b infection, with DIV it's something they think you may have but it's not that that's the problem, the DIV is.

    Mouse your useless gynae was right about the strep b, it is normally found in the vagina but not something they generally treat unless you're pregnant. However, it would produce discharge problems if you still had too much of that bacteria so it must have settled by itself.

    DIV is something that I'd previously read about that popped into my head when I read the first post of symptoms however it may not be that at all! Rolling Eyes

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    vulvodynia roller coaster

    Post  noni on Sun May 29, 2011 3:25 pm

    hey banzai,

    Thats what I have found with this condition...symptoms go up and down...some days are better than others...and with no apparent or obvious explanation....

    The pain just doesnt make sense to me at times...theres soreness and even sometimes cutting like sensations...its so crazy.
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    Re: "Barney's" experience...

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