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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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Hello. In Need of Advice, Please and Thank You. Long Read.

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  lindsey_taylor on Sun Jul 03, 2016 8:24 pm

Thank you so much for those links. It's so unfair for those women that have a hard time with oral contraceptives. I took mine for years with no issues and now, as of two years ago, this is the shape I'm in. My mother even encouraged me to look into stopping or switching birth control because she watched The Dr. Oz show and they talked about it causing "burning vulva syndrome". I will definitely talk to my doctor about this and about being put on an estrogen cream. I looked for a bioidentical cream that is prescribed here in the US but sadly could not find much information.

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  emalita on Mon Jul 04, 2016 12:40 am

Oh, something else I wanted to warn you about...if your doctor decides to do a culture and the culture comes back showing some bad bacteria, please please please be careful about accepting antibiotics. My test had a lot of bad bacteria present, and I didn't take any antibiotics to get it down to a lower state.

Below is info from Dr. Fowler's, my specialist, website about it:

"When lactobacillus counts are low, these 30+ other bacteria that are normally in the vagina at low concentrations proliferate and can become the dominant strains. If a vaginal bacterial culture is done in this setting, it will grow out something like Beta strep, Enterococcus, E. coli, Klebsiella, Gardnerella Vaginalis or some other bacteria that can be normally found in the vagina. This simply reflects what specie of bacteria has become dominate in the vagina at that time. It does not usually represent an infection."

I just would hate to see more antibiotics thrown at you unnecessarily Very Happy

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  lindsey_taylor on Thu Jul 07, 2016 11:17 pm

Update:

I faxed a lot of information out in regards to my continued symptoms and the testing that I wanted to have done, and she called me and said that she was going to send me to a Vulvodynia specialist in Atlanta, a couple of hours away from me. She said she would get into contact with me again once she'd gotten into contact with them. I am to still have my regular appointment with her on the 22nd of this month (my annual, for my pap smear, etc.). I don't know if she's become frustrated with me or simply doesn't know what else to do for me. But maybe now I will get some answers.

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  emalita on Fri Jul 08, 2016 12:40 am

I know it's frustrating starting over with someone new, but seeing someone who is more familiar with vulvodynia is a good step in the right direction!

Keep us updated on who the specialist is and when you get to meet with them Very Happy

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  emalita on Fri Jul 22, 2016 9:07 pm

Hi lindsey_taylor,

How did your appointment go? Was your doctor able to find a specialist for you to see?

Hope you're doing better sunny

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  lindsey_taylor on Sat Jul 23, 2016 1:11 am

Awe thank you so much emalita. I'm not any better and had my regular annual pap smear and exam today. I am set to see someone at Emory, about 2 hours from here, on August 10th but I looked at reviews of him and many have said he is rude. Rudeness is the last thing I need when I have had pain for two years but I will give him a shot. Thank you so much for your concern.

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  emalita on Sat Jul 23, 2016 2:51 am

I really hope this specialist isn't rude, or if he is, that his knowledge and treatment recommendations far outweigh his bedside manner. I've certainly been there with specialists who don't listen, don't care, are egotistical beasts, or really have no idea how to treat feminine pain beyond the very basics.

My best advice is to not take it personally and don't let them discourage you. Be very organized and bring copies of everything you think is relevant (even a printed timeline of events helps you stay organized on what you used and what happened when). However, don't be surprised if they don't care or won't even look at what you've brought. That speaks to their lack of knowledge in treating vulvodynia, not you, your condition, or your ability to heal.

I'm keeping my fingers and toes crossed for you that he will have answers for you Very Happy Keep us updated on how you're doing and how your visit goes!

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  meelie on Thu Jul 28, 2016 11:11 pm

Good luck Lindsey, I saw a lady urogyno at Emory, said she specialized in Vulvodynia. She was next to useless. Sent me home with a Rx. for a hormone cream and never said anything about coming back or anything. My small town gyno seems to know as much about it at least she appears to care more than the woman at Emory. Please let us know how the visit goes and what you learn.

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  lindsey_taylor on Mon Aug 01, 2016 12:46 am

Thank you very much emalita. I actually faxed copies of everything I have shared with my gynecologist to this doctor that I am going to see on August 10th. I just hope he is able to tell me something all the others couldn't. I can handle rude (think Dr. Gregory House lol) as long as he can help me but if he treats me like I'm crazy and nothing is wrong with me I will ask to see someone else because I know something is wrong with me and has been for two years. Thank you for your encouragement. Smile

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  lindsey_taylor on Mon Aug 01, 2016 1:03 am

meelie wrote:Good luck Lindsey, I saw a lady urogyno at Emory, said she specialized in Vulvodynia. She was next to useless. Sent me home with a Rx. for a hormone cream and never said anything about coming back or anything. My small town gyno seems to know as much about it at least she appears to care more than the woman at Emory. Please let us know how the visit goes and what you learn.

Thank you meelie. May I ask where you live? I live near Warner Robins GA. I have never been to any specialist at Emory so this will be new. I'm so sorry for your experience. Did the cream help at all? How are you doing now?

The thing that scared me is that I'm worried this doctor will tell me nothing is wrong with me when I've not been "right" for two years. Even without my nurse background I know my own body and know when something is wrong. Sad

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  meelie on Mon Aug 01, 2016 8:56 pm

Lindsey, I pm'd you, did you get it?

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  lindsey_taylor on Tue Aug 02, 2016 12:00 am

I'm sorry meelie, I didn't. No clue why. Sad

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Update as of 8/10/16

Post  lindsey_taylor on Wed Aug 10, 2016 10:55 pm

So today I saw a gynecological specialist at the Emory Clinic in Atlanta, Georgia. His name is Stephen Weiss. He was not rude, as someone else had said. He did listen to me, but he seemed somewhat... scattered? I told him everything that had been going on, and right from the get-go, he said, "Your issue isn't an infection. Your issue is a nerve problem." He informed me that I could try Lidocaine on a cotton ball nightly for a couple of months, said it has a 30%-40% success rate of fixing the problem. He said I could try Neurontin, which has an even lower success rate. He told me that the highest success rate he has seen has been in patients that have had a vestibulectomy. He officially diagnosed me with secondary provoked vulvodynia. He said that because my issue started around the same time I had a kidney stone and UTI, that those combined things could have caused a problem. I also fell down a few steps around that same time, and used a sex toy which made me feel uncomfortable, and shortly after all of these issues I had what I thought was a yeast infection, but as I said before here... when I was tested for that, when the symptoms arose and even my doctor at the time was certain it was yeast and did a swab anyway... it did not show yeast, only WBCs. Dr. Weiss told me today that that is because I never had a vaginal infection of any kind. Something caused a problem and set off the nerves in that area and now stimulation is painful, and probably the medication given to treat all the things I don't have did not help me, and possibly made things worse. He used a cotton swab and gloved, lubricated fingers to touch me in several spots, and to stimulate the labia and the entrance and most distal "inside" of my vagina, and it was incredibly uncomfortable. He's referring me to a neurologist to make sure the issue is not with a trapped nerve or something in my spine, since I also have tingling/heaviness in my feet which did not arise until this problem began in 2014.

I still don't know how to feel. I had a good cry. He was very adamant in the belief that my birth control has nothing to do with my symptoms, and he doesn't advise me stopping it, since I've tried swapping birth controls since this began and that hasn't helped. I asked about checking hormone levels, which he also did not think was necessary. He didn't take a sample of my discharge to be tested either, though he did review my previous labs in which I tested negative for EVERYTHING. He went over all the things that have not helped me so far. He is very, very certain that I have a "nerve problem".

I don't feel any better about all of this. I know I probably should, but the bottom line is I still don't know how to FIX what is wrong with me and I'm beginning to believe that no-one else does, either.

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  emalita on Wed Aug 10, 2016 11:40 pm

I'm sorry that you didn't leave the office visit feeling more confident in his answers.

Personally, I didn't accept it when several doctors assumed my issue was a nerve problem since, to me, that seems to be the knee jerk response of many specialists who don't know how to look any further. Now I'm not saying yours isn't a nerve issue because nerve problems are very real, but sometimes you have to trust your gut.

The ridiculous thing is that if you go to a different specialist with different beliefs of vulvodynia you will get a different answer. For example, if you would have seen my specialist, he would more than likely be treating you for inflammatory vaginitis due to your high WBC count. I agree that you probably don't have an active infection, but that doesn't mean that your flora and vagina aren't all upset and inflammed. Unfortunately there isn't a one size fits all test for identifying the cause of vulvovaginal pain. It's more trial and error Crying or Very sad

So what treatments did you decide to move forward with? I really hope they work for you, and you get some relief!

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  fairlight10 on Thu Aug 11, 2016 1:25 pm

Hi lindsey taylor now you have been diagnosed with nerve pain you can give antidepressants a try. These are prescribed in low doses with minimal side effects. I was were you are 4 years ago. Many women on this forum have used them and got their lives back from this spiteful condition. It takes time and patience. It is one way forward. Surgery is a last resort. Some have had success and others have thought it made it worse. Start reading some of the posts from the beginning of this forum. I found them very useful and you don't feel so alone. Hope this helps.

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  meelie on Thu Aug 11, 2016 3:41 pm

Hi, the guy you saw is the one I wanted to see but the waiting list was so long I agreed to see a female urogynocologist. They said she was experience in the problem ya da ya da ya da. So I saw her. After reading about your visit, I don't think I missed anything. The Dr. I saw was so impersonal, did a lot of measuring down there, didn't really seem interested in my history and what was happening when it started. She never did "talk" to me about it, said my perineal area didn't look real bad. I asked what I could do about it, she just sighed and gave me a Rx. for Estraderm cream. I had to ask if she wanted to see me again, she sighed again and said yea, come back in a coupe of months. Well, I had my cry too. Cried in the parking lot like a baby. Finally went to see my home town gyn, should have done that in the first place. Saw her about the same time I would have seen the Dr. you saw. She tried me on flexeril, and gababintin. Really didn't get any help. My pain would go away while I slept. started up the next day by 10:00. I had had an accident a year before it began, pelvic fracture, fractured L2 and 4 ribs. An unexpected flight off the back of my horse. Anyway, I remember them telling me that my area down there was really bruised and swollen, think I hit the saddle horn. Anyway, we put all that together and the fact that I had been sitting on my right sit bone since my left was fractured and hurting, muscles are contracted for over a year and we think this is what was causing it. After many PT apointments that helped some and yoga it got a little better most days but my life was still hell. I used to be an active person. So I finally went to my hometown internest and asked for some pain med. he put me on Tramadol 100mg BID. It had so changed my life. I still do yoga, I still do conscience relaxing breathing and all but this is what has made it possible for me to live. By the way, I am a retired RN. So we have something in common.

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emuaid

Post  emuaid on Thu Aug 18, 2016 5:59 am

Hi my name is Kc Ive had this problem before.Online theres a product called emuaid type 22 dollar bottle of emuaid for deal itll 30 fast shipping.Get cheaper toilet paper 1.00 .Use acidophilous probiotic and airborn.cold water air .never put ice on it directly only over panties.sry your going thru this but emuaid is a good start

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  lindsey_taylor on Sun Aug 21, 2016 7:49 pm

emalita wrote:I'm sorry that you didn't leave the office visit feeling more confident in his answers.

Personally, I didn't accept it when several doctors assumed my issue was a nerve problem since, to me, that seems to be the knee jerk response of many specialists who don't know how to look any further. Now I'm not saying yours isn't a nerve issue because nerve problems are very real, but sometimes you have to trust your gut.

The ridiculous thing is that if you go to a different specialist with different beliefs of vulvodynia you will get a different answer. For example, if you would have seen my specialist, he would more than likely be treating you for inflammatory vaginitis due to your high WBC count. I agree that you probably don't have an active infection, but that doesn't mean that your flora and vagina aren't all upset and inflammed. Unfortunately there isn't a one size fits all test for identifying the cause of vulvovaginal pain. It's more trial and error Crying or Very sad

So what treatments did you decide to move forward with? I really hope they work for you, and you get some relief!

Thank you emalita. I'm so sorry for my late response. I'll be going to the neurologist on October 6th. I'm going to ask him if he wouldn't mind getting some blood work to test my estrogen and testosterone levels while I'm there. Dr. Weiss didn't seem interested in telling me anything apart from either I need to try Lidocaine, Neurontin, or surgery. He wasn't interested in testing my flora or anything either. I know for sure I'm all irritated and inflamed, but I don't know why. I shall see what the neurologist says and go from there. I'm just... frustrated and upset. I don't know. I don't feel like I'm making any progress, I guess.

I do know that all of this started around the time I had a kidney stone in 2014. My fourth kidney stone. I honestly don't even know if I ever passed this one or not but I know I had felt it in my urethra at one point. I do hope it isn't somehow lodged somewhere in there and causing issues. After most of the pain from the kidney stone moving had stopped I followed up with the doctor and that same day I asked about the discharge I was having cos I was sure it was a yeast infection. He was too, took a sample of the discharge, gave me a script for Diflucan, and told me to use Monistat as well since I also had a UTI from the kidney stone and he put me on Bactrim and sent me on my way. I did everything I was supposed to but two weeks later I was no longer itching but still burning, and it hasn't gotten any better at all ever since. And I only found out at the end of 2014 that the swab that that doctor did during that follow up for my kidney stone troubles didn't even test positive for yeast at all. Just white blood cells. And that was how my story started. I'm sorry. I'm just reiterating what I have already said. Sad

I'm not sure of where to go from here until my neurology appointment. I will say though that 5% Lidocaine lubricant is the ONLY thing I have found that helps me have intercourse for a short while. But I'm always super sore after. However, that is something. It allows SOME intimacy.

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  lindsey_taylor on Sun Aug 21, 2016 7:52 pm

fairlight10 wrote:Hi lindsey taylor now you have been diagnosed with nerve pain you can give antidepressants a try. These are prescribed in low doses with minimal side effects. I was were you are 4 years ago. Many women on this forum have used them and got their lives back from this spiteful condition. It takes time and patience. It is one way forward. Surgery is a last resort. Some have had success and others have thought it made it worse. Start reading some of the posts from the beginning of this forum. I found them very useful and you don't feel so alone. Hope this helps.

Thank you so much fairlight10. It is so easy to feel alone in this issue; that is why I am so thankful for this forum. You and other ladies here have made me realize I am certainly not alone in this. I have had some good crying spells after receiving my diagnosis. I will certainly look into low-dose antidepressants. Do you know if having them in a compound cream to use vaginally rather than to be taken systemically has had the same positive effects? I will do some research on that. Again, thank you so much.

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  lindsey_taylor on Sun Aug 21, 2016 7:55 pm

meelie wrote:Hi, the guy you saw is the one I wanted to see but the waiting list was so long I agreed to see a female urogynocologist. They said she was experience in the problem ya da ya da ya da. So I saw her. After reading about your visit, I don't think I missed anything. The Dr. I saw was so impersonal, did a lot of measuring down there, didn't really seem interested in my history and what was happening when it started. She never did "talk" to me about it, said my perineal area didn't look real bad. I asked what I could do about it, she just sighed and gave me a Rx. for Estraderm cream. I had to ask if she wanted to see me again, she sighed again and said yea, come back in a coupe of months. Well, I had my cry too. Cried in the parking lot like a baby. Finally went to see my home town gyn, should have done that in the first place. Saw her about the same time I would have seen the Dr. you saw. She tried me on flexeril, and gababintin. Really didn't get any help. My pain would go away while I slept. started up the next day by 10:00. I had had an accident a year before it began, pelvic fracture, fractured L2 and 4 ribs. An unexpected flight off the back of my horse. Anyway, I remember them telling me that my area down there was really bruised and swollen, think I hit the saddle horn. Anyway, we put all that together and the fact that I had been sitting on my right sit bone since my left was fractured and hurting, muscles are contracted for over a year and we think this is what was causing it. After many PT apointments that helped some and yoga it got a little better most days but my life was still hell. I used to be an active person. So I finally went to my hometown internest and asked for some pain med. he put me on Tramadol 100mg BID. It had so changed my life. I still do yoga, I still do conscience relaxing breathing and all but this is what has made it possible for me to live. By the way, I am a retired RN. So we have something in common.

Meelie I can only imagine your frustration! However, I am so glad that you have found some relief with Tramadol. May I ask, do you also have abnormal discharge, which you did not have before all of this started?

And it is a pleasure to meet and hear from a fellow nurse who also has this horrible issue. I'm so sorry that you have been having to battle it though.

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  lindsey_taylor on Sun Aug 21, 2016 7:56 pm

emuaid wrote:Hi my name is Kc Ive had this problem before.Online theres a product called emuaid type 22 dollar bottle of emuaid for deal itll 30 fast shipping.Get cheaper toilet paper 1.00 .Use acidophilous probiotic and airborn.cold water air .never put ice on it directly only over panties.sry your going thru this but emuaid is a good start

Hello KC and thank you for your response. I have been taking a probiotic daily on and off for the past two years without any improvement and I use hypoallergenic toilet paper. Can you tell me how emuaid helps? I'm willing to try anything but I don't want to keep spending money on things that don't help. Thank you so much.

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UPDATE AS OF 8/29/16

Post  lindsey_taylor on Mon Aug 29, 2016 11:45 pm

My original gynecologist, after speaking with the doctor I saw at Emory, has placed me on nine days of the three-day clotrimazole (anti-yeast) treatment followed by 21 days of the vaginal clindamycin, thinking I may have some latent infection that the swabs aren't catching. Thinking that I may need stronger and longer doses of these medications. I am currently on day 5 of the clotrimazole and even though it doesn't burn me inside like monistat did (that stuff hurt so bad when I used to use it for yeast), I'm not seeing any relief. My feet are tingling really bad today (which the doctor I saw at Emory told me it is because those nerves are closely related and I could be experiencing referred "pain") and my labia and vestibule are burning. My clitoris is painful to the touch, and it hurts to wipe, as usual. Just feels like my symptoms are "louder", as it were. I'm guessing because the medication is causing irritation, and messing with already messed-up nerves.

I see a neurologist on October 6th. I'm supposed to put up with this treatment until then. And then what... I don't know. Meh.

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  meelie on Tue Aug 30, 2016 12:11 am

Please, you need to call your gyn and tell her. This pain isn't right. Pain is telling you something is wrong.

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  lindsey_taylor on Tue Aug 30, 2016 2:49 am

Thank you meelie. The pain is the same that I have had for two years now. I just think the cream makes the pain at my vestibule and labia even more noticeable because it causes irritation. Sad When I was on a combination cream of estrogen and clindamycin and hydrocortisone the same thing happened. Sad

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UPDATE AS OF 9/14/16

Post  lindsey_taylor on Wed Sep 14, 2016 11:18 pm

Just posting an update. Right now I'm doing this weird thing where I'm meant to do 9 days of 3-day clotrimazole treatments, and then 21 days of vaginal clindamycin, and then repeat the same dosage of clotrimazole to see if that eliminates any underlying fungal or bacterial infection I might have. So far I'm well into my second week of clindamycin and haven't really noticed a difference except with the discharge... but that isn't even fair to say because I haven't seen anything come out of me lately except the creams, so who is to say.

I have an appointment with a neurologist on October 6th. Here's to hoping I get some help. If that leads me nowhere, I'm coming off birth control.

lindsey_taylor

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

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