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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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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 …

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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 …

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GABAPENTIN DOSAGE

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GABAPENTIN DOSAGE

Post  ria on Thu Jun 09, 2011 3:45 pm


Anyone on Gaba I am taking 300mg at 6 oclock evening and my doctor said I can increase to 900mg. How do you take yours morning/noon/ night just want feed back on what time you take yours and how it makes you feel. Also does the discomfort go away as you have increased dosage. I hate taking tablets but needs must. However I dont want to keep upping the dosage and still have the same discomfort.

Hey any info would be great


thx Ria

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Re: GABAPENTIN DOSAGE

Post  Sebby (Admin) on Thu Jun 09, 2011 8:14 pm


Hey there I asked our secret facebook members and this is what one of the girls said

"I was on it and I was taking 900mg three times a day; morning, noon, and evening. My gyno took me off of it because she said it was too high a dosage for my size. They had to keep increasing and it never did anything to help me so they have weened me off of the gabapentin and now I am on Elavil, I just had an increase on that and I am taking 25mg once a day. I hope you have better luck with the gabapentin"




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GABAPENTIN DOSAGE

Post  ria on Thu Jun 09, 2011 9:42 pm



Thanks Sebby,

Ria

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Re: GABAPENTIN DOSAGE

Post  jules on Thu Jun 09, 2011 11:10 pm

Ria, Gabepentin has helped me. i started at 600 or so and moved up fairly fast to 1200, then 1800. 2000, etc. i am on the top dose of 3600 mgs. My pain clinic is not concerned about this high dose. I did not have any relief until i was over 2000 mgs. i was taking four pills (300 mgs) 3 times per day. Now i take 2 -600 mgs. 3 times per day. my middle dose is usually at lunch or dinner. sometimes i forget at lunch so i take them when i get home from work. I had a big decrease in the burning pain after my dose was fairly high. the pain was cut by 60% or so. Then my doc added Lyrica a few months later. i was on 300 mgs of Lyrica, but went down to 150 mgs (gained some weight). Now, i am also on Cymbalta at 90 mgs. lots of meds. still struggling w/ pain from sitting etc. i do sit on a cushion, but it doesn't completely protect me from pressure to the vulva. I do believe my pain would be far worse if i was not on Gabepentin. i had no side effects at all. good luck.

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GABAPENTIN DOSAGE

Post  ria on Fri Jun 10, 2011 6:48 pm


Hi Jules,

I have been on Amitriptyline, Nortriptyline, venlafaxine but had problems, the consultant at the vulva clinic put me on Gabapentin, I was scared to take them but as you know needs must when the burning starts. At the moment I am taking 300mg lunchtime and 300mg teatime I can go up to 900mg I see the Consultant next Thursday What I would like to know Jules do you have any awareness of your Vulva when walking or sitting, I am no where near as bad as I use to be sitting on ice having baths you know all the things we do to get relief, but do we ever get free from feeling any sensation down there. At the moment I have that background nerve pain, do I keep taking Medication until it has gone away.

Jules did you put weight on with Gabapentin this worries me?

Thanks so much for info

Ria



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Re: GABAPENTIN DOSAGE

Post  jules on Sat Jun 11, 2011 12:09 am

I did not put any weight on w/ Gabepentin (no side effects for me). I do actually still have a lot of pain..especially lately. I can not sit on a chair ever. i have to sit on a cushion. also, working out causes flare ups for me almost immediately. I would say i'm not in a good place right now. i did much better w/ the combination of gabepentin and lyrica (300 mgs.) I do believe the Gabepentin is helping in that the pain isn't as bad prior to meds. If you still have some pain, i don't think it would hurt to go up in the dose. but, that's something you and your doc. should decide. i needed a lot to feel a difference. I have less pain when i am walking or standing. i have had times where i wonder where the pain went. but, it was a very long time ago. i think we may always have some sensation unless your one of the lucky ones where all the pain leaves. it's possible we just don't read about women who have had a lot of success because they don't write on these logs. i am on a facebook page. one of the women has talked about having 4 pain-free days. i had two days that were pretty good this week. but, then i sat on a chair w/out my cushion and i'm paying for it. if my cymbalta doesn't help, the doc talked about trying me on AMI. what type of side effects did you have on that? years ago i tried Ami to get off of another anti-depressant. i felt like i was a walking zombie for 2 weeks. i am a little worried to try it again. oh also, i am having surgery this summer...its a neurostimulator. (spinal cord simulator). there are many options out there.

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GABAPENTIN DOSAGE

Post  ria on Sat Jun 11, 2011 11:29 am


Hi Jules,

Ami turned me into a zombie but nortriptyline was good for me but I had an allergic reaction so the Doctors took me off it. I tried Effexor some vulvodynia patients have done well on it but it did nothing for me. I am nowhere near as bad as I was it got to the point where I could not live like this anymore and dark thoughts were in my head. The problem with me now is even though it is not as painful its bloody annoying like a background toothache all the time, I just want the sensations to go.


I would love to hear from someone just one person who has not got rid of it and got there lives back to normal. All the people on Howard Glazer website when I read the backlog of patients I mean have they still got it? Well its 4 years for me and seems like a lifetime I think of nothing else I am a Holistic Therapist and do alot of treatments most days on myself.

Where the hell did it come from what is it that connects all us Ladies there must be something.

I cannot thank you enough for your feedback on the Gabapentin I am such a worrier with Meds, all my life I have always gone down the alternative route with herbs ect.

I tried Acupunture but it didnt really help. Howard Glazer told me that the Biofeedback would take it away if I did the 20 min sessions twice a day, it has helped but I still medication and everything else. My Consultant at the Vulva clinic said the Biofeedback was a waste of time....... you know Jules I dont think they really know how to treat us its so we may as well do everything.

When this started with me I saw 12 professional in this field they all told me something different. One Lady I saw was a Professor she did my Biopsy couldnt find anything it came back clear...... she didnt have a clue yet she an expert on Vulva conditions, she told me I didnt have Vulvodyna................so there we go.

Hey I am on a right old rant sorry love just feeling I want someone who hasnt got it anymore to speak out for all of us if there is such a person out there.



Take care

Ria


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Re: GABAPENTIN DOSAGE

Post  jules on Fri Jun 17, 2011 4:24 am

Ria, would it help if i pretended i didnt have V anymore? I could make up a story LOL. There are women whose condition has greatly improved. You're right about the docs. The doc who diagnosed me at a world renowned hospital..the Mayo Clinic, had no idea how to treat me. Once i was up to 1800 mgs on Gabepentin, i called her and told her i still had very bad burning pain, she told me she didn't know what more she could do for me. She was the damn expert. I am so glad i am connected to a pain clinic. That's where i have gotten the most help of all. As you know, there is no known cause for this disorder and no known cure. The meds etc. are meds that are used for others w/ different kinds of pain..ie Fibro. etc. k, will chat later.

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gabapentin dosage

Post  elleniniowa on Mon Jul 11, 2011 1:17 pm

I was on gabapentin or my vulvoynia for serveral years and the dosage I used was 2700 mg a day. I took three 300 mg capsules 3 times a day. You have to gradually go up on the dosage though. My case was very severe, and a lower dosage was not effective for me but 2700 mg worked very well.

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Post  ria on Mon Jul 11, 2011 5:45 pm


Thanks Ellen all information helps. What meds are you on now?


Take care Ria Smile Smile Smile Smile Smile

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gabapentin dosage

Post  elleniniowa on Tue Jul 12, 2011 2:44 pm

Ria, the underlying cause of my case of vulvodynia was the estrogen loss at menopause and my case was extremely severe. Estrogen loss causes the vaginal walls and vulva to thin out and that caused me to become severely sensitive to the chemicals that are in most health and beauty products, including RX's. The one chemical that I know is really bad is propylene glycol which is a known skin irritant. Presently, I use compounded bioidentical estrogen and progesterone cream, and that is the only thing I use for my vulvodnia now. My compounding pharmacist puts both the estrogen and progesterone in a cream which is applied to my inner thigh each evening. My estrogen loss also caused me another less known condition called "burning mouth syndrome". My mouth and tongue (esp. the tongue, it felt like I had burned it on hot food) burned horribly. The estrogen therapy takes care of both my vulvodynia and the burning mouth. Both the vulva and mouth are mucous membranes so I guess it makes sense. Well, actually, nothing about this horrible condition makes sense. When my vulvodynia was really bad, I was on the fentanyl patch, Ultram, nortriptyline, Lyrica, and, of course, gabapentin. Didn't note much pain relief with the Ultram, the nortiptlyline and also amitripyline (Elavil) gave me a major speech defect, and Lyrica caused me a strange movement disorder which scared me half to death. That was when I switched to gabapentin which helped me a lot at the 2700 mg dosage. But I didn't really get rid of the vulvodynia until I found the cause - the estrogen loss and addressed that. One thing I would like to mention is that when I took the bioidentical estrogen in an oral form, it did not work at all. ??? But when I switched to the transdermal cream, I noticed the difference the very first month. That was back in May of 2009 and I have been much better since. Love, Ellen

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Re: GABAPENTIN DOSAGE

Post  Sarah001 on Wed Jul 13, 2011 10:27 am

It's funny you should say hormones caused your burning mouth syndrome too ellen, I have a friend with that and a doctor has told her it was most likely caused by having the Mirena coil fitted which will have affected her hormones!
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Post  elleniniowa on Wed Jul 13, 2011 12:51 pm

Ria, well, having your friend's doctor tell her it was caused by the Mirena coil fitted, sure seems to confirm that burning mouth is hormone related. I used to work for a pharmacist who compounded, and I overheard him one day telling someone that me made up some type of estrogen for menopausal women who had burning mouth syndrome. This was before I had the burning mouth, of course. In fact, I think it was after I quit working for him and just happened to be in the store that day. Also, burning mouth syndrome is discussed in one of the two tutorials that the NVA has online. One is for health care providers and one is for patients. Last time I looked I could still access the health care provider one, but I could not access the patient one as you have to be a member of the NVA to see that one. And I don't recall which one mentioned burning mouth syndrome. My first signs of estrogen loss actually occurred in perimenopause though I did not realize it at the time. Perimenopause can start up to ten years before one's last period so that is when you can actually start seeing signs of estrogen decline. I assume both you and your friend are not yet menopause age but it is good to know that loss of hormones can cause vulvodynia, also, just in case you develop that type later. I didn't develop a sensitivity to propylene glycol until I reached menopause, but my sister's case of vulvodynia was caused by an outright allergy to propylene glycol and maybe other chemicals as well. She first devoloped vulvodynia when she was in her late twenties back in the early 80's when there was no such thing as vulvodynia. It happened after she used yeast infection cream, and, of course, the doctors thought she was having chronic yeast infections so she kept putting more and more in making things worse. In 2002, she let down her guard and used Monistat again after developing a yeast infection, which caused her to burn more and again she thought she needed more cream, and the more she used, the worse it got. In 2002, she had access to the Internet and start researching online and that is how she found the NVA. She said she doesn't care what any doctor says, that she KNOWS it was something in the Monistat cream that caused it. When I started researching online, that is how I found out about the chemical connection and propylene glycol, especially. It took her a long time to get over both episodes because once those nerves start firing, it takes a long time to get them calmed down. I hope this information is a help to you. Vulvodynia is so complicated with so many different causes, different treatment, and a host of sister disorders. But the only type I have experience with is the one caused by estrogen loss, and I also know from my sister's experience that chemicals in health and beauty products (including RX's) can cause it, also. Love, Ellen

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Post  ria on Thu Jul 14, 2011 6:00 pm



Ellen, are you free from the dreaded V now you are taking Hormones?


Take care
Ria

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Post  elleniniowa on Fri Jul 15, 2011 2:06 pm

Yes, I am, Ria, as long as I stay on the hormones. Whenever my NP tries to lower the estrogen dosage, I start having problems again. My extreme nightmare began in Nov, 2005, after I used MetroGel for bacterial vaginosis and Monistat cream for a yeast infection. It took a very long time to figure things out, and I was so sick I didn't want to live anymore. I was burning so bad all through 2006 and 2007 that I finally had to quit my job in Feb. 2007. I lost a lot of weight. Got down to 115 by the summer of 2007 from a starting weight of 156. My NP put me on bioidentical hormone therapy but I was taking the estrogen orally which did not help it all leading me to conclude that it wasn't a hormone problem. So I quit the hormones for awhile since I thought I was wasting my money. And I didn't have much money because I didn't have a job. But after reading in one of Suzanne Somers' books that the delivery systerm is very important (she useds a transdermal cream) I asked my compounding pharmacist about it and she said, yes, to try the cream. So I did and I noticed the difference the very first month. And I have been well ever since. Smile And it was estrogen loss that caused my problems after all! Ellen

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Re: GABAPENTIN DOSAGE

Post  SimplyDom on Wed Jul 25, 2012 5:10 pm

I have been taking gabapentin for 3 months now. This is one tricky drug, that is because I had to start out at such a small dosage the gabapentin did not even work. I got sick pretty badly when I tried taking a larger gabapentin dosage. Read up on this stuff and ask all the questions you can think of when you are with your doctor.

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Re: GABAPENTIN DOSAGE

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