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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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Lyrica VS Amitryptilene

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Lyrica VS Amitryptilene

Post  sailor_moon on Wed May 27, 2015 12:04 pm

Hi ladies,

I have been on Lyrica for 2 months now which has done nothing. I'm on 150mg.

Just wondering if anyone has used both Lyrica and Amitryptilene and if one works better than the other?

I have not tried Ami. I got told to give Lyrica 3 months to kick in but it's done nothing these past 2 months.

My main symptom is itching with burning in the 2nd half of my cycle and I get relief on my period. I am inflammed down there 24/7. Had every swab test under the sun and 2 biopsies only showing non specific inflammation.

As with most of you, all cream I use makes things worse.
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lyrica

Post  sadone on Thu May 28, 2015 8:23 pm

I have been on both, sailor-moon. The ami relieved my pain but it the side effects were too much. the lyrica helped a lot- worked up to 300 mg. It made my pain go down to zero, during every day activities. sex is still another story, but at least I can function.

Sometimes, a combination of the two may help also. I hope you find some relief soon.

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Re: Lyrica VS Amitryptilene

Post  sailor_moon on Thu May 28, 2015 10:07 pm

I took my first Dose of Lyrica 300mg last night. I feel so dizzy and drowsy. My burning has gone down a bit, I'm having a bad flare up atm, I have been red raw too which I really want to go away Sad . Can I please ask what your main symptoms are? How long did it take for your pain to go to zero? I don't have pain during sex, but my whole vulva itches like crazy afterwards.
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Re: Lyrica VS Amitryptilene

Post  yoginimom on Fri May 29, 2015 2:47 pm

sailor_moon wrote:Hi ladies,

I have been on Lyrica for 2 months now which has done nothing. I'm on 150mg.

Just wondering if anyone has used both Lyrica and Amitryptilene and if one works better than the other?

I have not tried Ami. I got told to give Lyrica 3 months to kick in but it's done nothing these past 2 months.

My main symptom is itching with burning in the 2nd half of my cycle and I get relief on my period. I am inflammed down there 24/7. Had every swab test under the sun and 2 biopsies only showing non specific inflammation.

As with most of you, all cream I use makes things worse.

Sailor moon i have tried nortriptaline and it's helping a bit, but i haven't been on it long enough to tell. The side effects are much more mild than Ami, and it basically does the same thing. It helps with the nerve related symptoms though, (burning pain) so i don't know if it would help with itching.

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Re: Lyrica VS Amitryptilene

Post  BpCookie on Mon Jun 01, 2015 3:04 pm

Hello Sailor hun, Ive tried both. Right now I'm taking Lyrica and its the only pill that has helped me. I was using 150 mgs 2 times a day but now I am taking 100 mgs twice a day. I also use Lidocaine %5 ointment but I don't think it would help your itching, I use it to numb my burning.

I finally found a fantastic Gyno who specializes in this sort of pain and he has done two surgeries and 4 alcohol injections. The second surgery cut my pain down by about 30%. The last two alcohol injections have helped.....I think. *scratches head*. My left butt cheek, along the left side of my episiotomy scar and a bit of my labia majora is now numb but thats not exactly where the pain was. LOL. Close but no cigar. The last alcohol injection was done a few weeks ago and it seems to be helping my burning pain but I still have to take 100 mgs of Lyrica.

Keep doing research, keep looking for that special Dr. who can help you and never ever give up.

hugs
Cookie

p.s. The lyrica side effects suck but I would rather be in my own little bubble and drooling, instead of being in sssoooo much pain.
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Re: Lyrica VS Amitryptilene

Post  Georgia H on Mon Jun 01, 2015 6:56 pm

Hi girls. Lyrica resolved all my generalised symptoms ... The overall burning etc. Swear by it. It's a bitch to be on but it works. I was on 150 then upped to 300 where it did the job.

I'm off all meds now and haven't had the generalised burning for years (since I came off the Lyrica in 2012)

Some other random symptoms came back but never the hideous burning pre-Lyrica. They're gone now too.... Stick with it!!

Xxx

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Re: Lyrica VS Amitryptilene

Post  sailor_moon on Fri Jun 05, 2015 1:09 am

Hey ladies,

Been taking 300mg at night with no difference, it has been 60 days since my last period and the longer I dont have my period the worse my symptoms become Sad

This week has been a very hard week for me, my symptoms are so bad. I am so inflammed and itchy its not funny. All I have done this week is cry...I have had this for 2 years and dont seem to be getting anywhere. The only thing that helps with the itch is warm baths with baking soda but this also dries me out which leads to further irritation.

I dont have any bad side effects with lyrica other than a really bad short term memory and some drowsiness, but I suffer constant fatuige 24/7 anyway so it doesnt really make much difference.

The only thing Lyrica helps is with the real severe BURN but not the rawness soreness and definitely does nothing for the itching and inflammation which are my main concerns.

How long does lyrica take to get any REAL form of effect?

I tried Nortryptiline for all of a week a year and a half ago which made me VIOLENTLY ill and so so so much dopier than Lyrica ever has.

I have found not many women on here suffer from itch like I do.

Seriously I am at my wits end....should I just knock myself off now? Because I am going insane suffering like this, my vagina is all I can think about 24/7 because I am always in some form of discomfort. No-ones first worry in life should be their snatch!

I am scared I will never be able to have a child because of this shit, let alone live a normal happy life again.
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Re: Lyrica VS Amitryptilene

Post  BpCookie on Fri Jun 05, 2015 3:35 pm

Sailor sweetie, You poor dear. I can only imagine that you feel like you are going insane!!! My suggestion is this, do a search on line and find a specialist who is willing to do what ever it takes to help you. Surgeries, injections, nerve blocks, what ever. I was so tired of trying pills and ointments and I still burned so badly that I thought my life was over. I would lay in bed and just cry. I just wanted to die. Finally I got MAD, mad that I had this, mad that it had control over my life. So thats when I went from Dr. to Dr., from pain specialists, to nerve specialists to gynos and then I finally found a Dr. who was brilliant. He did two surgeries and alcohol injections. He was the only Dr. who wasn't afraid to actually DO something. By that time I was willing to try anything!!!! I figured that it couldn't make the problem any worse. I can't say that I am cured but I can do things that I wasn't able to do before. I can go out to dinner, I can sit at my computer for hours now, I can sit and make jewelry, I can wear underwear................I still can't go to the movies, go swimming very often, wear pants or have sex more than once a month but its better than it was.

I wish you the very very best honey.

hugs
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Re: Lyrica VS Amitryptilene

Post  sgw11 on Fri Jun 12, 2015 12:24 pm

I've done both Lyrica (300mg) and Amitriptyline cream. Amitriptyline has allowed me to have sex (pain at the start but then goes away but I'm tender after) and I would highly recommend going on it. I also went on Lyrica 300mg a day at the same time to see if it would make all my symptoms go away completely but unfortunately it did nothing for me. Everyone is different, but I would definitely give amitriptyline a go. Plus there a no side effects using the cream rather than taking oral medication.

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Re: Lyrica VS Amitryptilene

Post  sailor_moon on Sat Jun 13, 2015 6:54 am

Thanks Cookie, my doctor wants to get to the bottom of things but he really insists on doing a Laproscopy and Hystoscopy first to ensure there is no internal cause to my problem...I am supposed to have my operation in 2 weeks, fingers crossed they don't cancel on me again!!! I swear my messed up hormones HAVE to play some part in all this, I have just finished my period [first one in 60 days!] and now my period is over the itching is back with an absolute vengeance - it is driving me absolutely insane, it is almost as bad as when all this first started. I am getting headaches every day and my gastritis is playing up and I feel so nauseous I want to throw up and pass out. The big question is how do they fix low estrogen and progesterone? Seeing as both of these factors are low, surely they must play some part in this shit? I have no idea where I am going to go from here if my doctor is all out of ideas. I am feeling very down and quite distraught about everything, especially given the fact I am having such a dramatic flare up.

I upped my does of Lyrica to 300mg, and as I say, these past few days have been worse than ever, obviously Lyrica is doing squat diddly for me.

How long does Amitryptiline cream take to start working? Also, does it burn when when you apply it. My main symptom is itching, not "pain" so I wonder if it would do me any good? I am willing to try anything..just wish it all wasn't so freaking expensive. Any form of cream I use down there just burns and irritates, I wonder if any compound pharmacies would be willing to compound it in coconut oil to reduce irritation?
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Re: Lyrica VS Amitryptilene

Post  BpCookie on Sat Jun 13, 2015 3:44 pm

Hello Sailor, you poor sweetie. I really feel for you.For low estrogen they can give you a small patch to wear called Mini-ville and you change it twice a wk and for the progesterone they can give you a pill.

Has any of your Dr.s ever done a biopsy yet? I had a biopsy done and they found that I had Vulva Lichen Simplex Chronicus which is the thickening of the skin around the vulva.. Perhaps they should do a biopsy just in case there is an actual cause. Also, if your Dr. tells you that there is nothing else they can do for you, find another Dr. There is always something else that can be done. There is a Dr. out there, some where, who can help you with this.

Hang in there honey
Badpuppie

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Re: Lyrica VS Amitryptilene

Post  sailor_moon on Sat Jun 13, 2015 7:37 pm

Thankyou again Cookie . Much appreciated. Yeah I have had 2 biopsies done 6 months apart by 2 different doctors, it only showed non specific inflammation. ..As if I didn't already know that ! Lol!

I think the next step is HRT but my doctor needs to make sure I don't have endometriosis because it grows and feeds on estrogen.

Oh you poor thing, LS would be horrible! I feel for you.
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Re: Lyrica VS Amitryptilene

Post  mikan92 on Fri Jun 19, 2015 12:12 pm

sgw11 wrote:I've done both Lyrica (300mg) and Amitriptyline cream. Amitriptyline has allowed me to have sex (pain at the start but then goes away but I'm tender after) and I would highly recommend going on it. I also went on Lyrica 300mg a day at the same time to see if it would make all my symptoms go away completely but unfortunately it did nothing for me. Everyone is different, but I would definitely give amitriptyline a go. Plus there a no side effects using the cream rather than taking oral medication.

Hi sgw11!

Just wondering what's the difference between taking the pill form and the cream form? Does it do the same trick as the pill form?

Thanks Smile

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Re: Lyrica VS Amitryptilene

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