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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 …

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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 …

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 …

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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 …

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"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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