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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


I'M NEW - Do I listen to my gyno who I feel has it wrong?

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Post  Tunes25 on Fri Mar 09, 2018 6:17 pm

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks later got a UTI, which was followed by another yeast infection. I had a month of feeling fine, and then got another in January and from then felt I was in this horrible cycle of getting one, it being better for a week and then symptoms returning. I made every effort possible to avoid the things that trigger it too. I finally got the walk-in clinic to refer me to a specialist in April and at this time the doctor I saw suggested I also take probiotic suppositories with the oral medication for yeast and to continue taking these once a week after the yeast treatment. I was pain free and having sex for 5 weeks solid and assumed I had found the trick and so ended up cancelling the gyno specialist appointment in June because I didn’t want to waste her time.

Silly cheap me, once my probiotic ran out after 8 weeks, I thought I would try just living without taking this every week as it was a little expensive and I'd been doing so fine. Low and behold two weeks after stopping this I get another yeast infection!! I was so mad and frustrated at myself for having cancelled that specialist appointment! I ended up returning to the same walk-in clinic and getting them to refer me again, but this time my appointment wasn’t until October (this past October 2017). I treated the yeast I got in June and started up with the probiotics again, but there was a lingering pain even after the the treatment was over for the rest of the summer and attempted sex usually resulted in a burning sensation. I ended up mutually breaking up with my boyfriend in August, not over this sex stuff, but realistically it didn’t help any. In September, it had been 4 weeks since I attempted sex and I was finally starting to not have consistent vulvar pain anymore. My ex came over once and we had sex to “test me out” and I remember it actually feeling good! I was essentially pain free up until my gyno appointment in October and didn’t have much to say to her other than give my history since I was feeling fine. She told me if symptoms return she could book me in quickly in the future.

In November I decided to enter into a friends with benefits type situation with a guy friend of mine. The sex was good with him too and I was pleased to think I finally overcame this stuff. Then I started noticing a bad odour from my vagina and was getting rather self-conscious of it so I ended the friends with benefits arrangement and booked an appt. with the gyno. She did some tests which came back positive for BV and so prescribed me oral antibiotics. During that week of antibiotics I also inserted the probiotic suppositories. After that treatment was over, I felt back to normal for a month.

THEN in January I randomly and without any factor (like sex) having provoked it, started feeling a little itchy/ burning type feelings down there intermittently. I had an appointment with my gyno on Jan 16th to get a new IUD inserted and brought up these concerns with her then. She said she didn’t see anything looking wrong with my vagina and said it might be to anxiety about getting the IUD, although I didn’t feel this was the case as I wasn’t particularly nervous.

In the meantime of this going on, I starting to date a new guy. At first I put him off sex with excuses like my period, but then ended up telling him the truth and giving a brief history of my experience with infections. He was really understanding then and we made a plan to do ‘other stuff’ while we waited for this particular issue to get resolved. We did try having sex once just to see how it would be for me and it was ok at first, but quickly became painful with a burning sensation as he went deeper and there was more friction.

Anyways, a week later and I’m still getting these symptoms so I book another appointment and this time she takes me more seriously and says since we’ve ruled out the typical infections, she thinks it’s a mild case of DIV (even though I have no odd discharge whatsoever). She prescribes a clindamycin gel to be inserted into the vagina every night for 2 weeks. I had to wait a week to get the prescription filled because it was a compound and needed to go to a special place. My symptoms seemed to improve slightly in this time and I even tried having sex again which was similar basically the same as before, more burning pain with faster and deeper penetration. However, one day the following week there was noticeable itching and burning during the day so I thought the clindamycin was worth a try even thought I didn’t have ALL symptoms of DIV. I proceeded to endure 2 weeks of hell, with severe burning during peeing and wiping as the gel inevitably leaked out and significant burning/ discomfort during the day. Even though this was an antibiotic I (stupidly) didn’t go on my probiotic suppositories as I felt enough was already being shoved up my vagina. Even though my gyno said I could have sex while on this medication, that was TOTALLY out of the question. After I had been off it for a few days, I tried to have sex again and it felt ok at first with more pain as it continued and afterwards there was this severe burning sensation that lasted for 30-40 minutes, slowly fading. I was also still having intermittent itchiness/ burning during the day unprovoked.

I went to see her for the follow up and reported what happened. She looked at the inside of my vagina and said I now had a yeast infection and she couldn’t see the DIV because of all the yeast. GREAT. So she prescribed me 2 oral tablets for the yeast to take 72 hours apart. She said if I’m still getting symptoms 5-7 days after the first dose then to start on this steriod cream for the DIV, which you insert into the vagina every day for 2 weeks and then every couple days for two weeks.

WELL, where I am now is that I’ve taken the two doses for yeast and it’s been 9 days since the first dose. These past 4 days I’ve noticed significant improvement in my itchiness and discomfort during the day, with it only being there slightly every once and a while, especially yesterday. I was really hopeful that the clindymicin had done the trick and that now that the resulting yeast had been addressed I’d be good to go for sex again! However, upon having sex last night, it was just the same as before: feeling ok during but becoming a more irritated as it went on and then this severe burning for nearly an hour after.

All the times we’ve had sex my boyfriend has remarked that it feels like the muscles are tight, but not in a normal way, based on his experiences with women. This kinda sounds like the muscle spasms of vaginismus to me.

By the way, I have had years of pain-free sex so I know what this is supposed to feel like when all is well.

Obviously I have done a great deal of research into vaginal/vulvar pain problems and really feel that what I have is most likely vulvodynia or vaginismus and NOT DIV like my gyno thinks because a) I don’t have the discharge and b) I’ve read that most people see improvement after the round of clindymicin. I’m really not keen on subjecting myself (and my wallet) to this steriod cream stuff for a month, which the high potential for lots of discomfort and no improvement. I can feel this situation beginning to put stress on my relationship and I'm frustrated by the idea of wasting a month. Which I understand in the grand scheme of things isn't that long, but this guy and I really click on a lot of levels in a way I haven't experienced before and I would be pretty upset if it crumbled due to this. He's been supportive and assured me that a solution will be found, we just have to keep trying things, but he has also been honest about having a high sex drive, which my healthy vagina self would be totally into, so it's just really frustrating to feel so powerless in regards to this. I mean, we have done other stuff of course and that mitigates the issue, but we agree that nothing quite replaces sex.

What I want to know from the community here is what do you think? Are my concerns about this steriod cream valid? Has anyone been on this an can tell me how it is to be on it? Part of my wants to call my doctor before going on it and explain to her why I don’t think it will be helpful, but I don’t want to undermine her since she’s supposed to be the professional here, and I don’t even know if her secretary would even relay the concerns.

Also, does this sound like Vulvodynia to all of you who have actually be diagnosed with it?

I should also mention that I’ve really been working on the psychological aspect with myself by saying aloud to myself (and in a voice like I really believe it) the following statements 10 times on my drive to work in the morning. If anyone knows about Louise Hay’s affirmations, same idea.
1) There are solutions to any problem I experience
2) My vagina feels good
3) I deserve to have good sex*

*I had done something sexually I was a bit ashamed of in the past and at times of having these problems over the past year I would have this bad self talk like: ‘well serves me right, I don’t deserve to enjoy sex anyways’. However, through talking with a close friend and my new boyfriend I’ve come to realise that this isn’t something I should feel ashamed/guilty about and that I didn’t do anything wrong, so I’m trying to come to terms with that too. I've considered seeing a sex therapist but the only ones are kinda far away and I don't have benefits. Do you think this is worth looking into in my case?

Tunes25

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Re: I'M NEW - Do I listen to my gyno who I feel has it wrong?

Post  sarisbaris on Thu Mar 15, 2018 3:51 am

You are fighting a virus they can't detect. Don't feel bad. It's not psychological. It's real and you need to know how to kill it. You could have gotten this from sex but you could have also gotten it from a door handle or bathroom, it's like any other virus. I battled vulvodynia, UTI, yeast infections, VB, Lichen Sclerosus for years. I went to 20+ doctors and countless alternative ones. I know it was a virus because when I followed the protocol by Anthony William I was cured. No joke cured from all of the above.

Ok... so, he argues that vaginal burning is caused by an unknown/undetectable strain of strep or shingles, UTIs is usually strep although shingles can cause damage as well, yeast infections and VB are strep and lichen is shingles mixed with lead. I was healed from all of this. All of it.

Here's my blog. Read through it. I found that lately it's easier if I have a quick chat with each person to get them started on the right protocol since there is so much you can do.
http://myvulvodyniacure.blogspot.com/2016/12/if-you-are-in-pain.html

Don't give up! My email is listed on the bottom of my blog.


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Some Thoughts

Post  Nancylee on Mon Apr 02, 2018 12:58 am

I am so sorry for what you have been going through.  I am an AASECT Certified Sex Therapist who has a subspecialty in Vulvodynia for 15 years in Boston area.  Overall, I am impressed with your Gyne. You have had several different dx's in a short period of time, so it may take some time to sort it out.  One of things that can get complicated is that long usage of steroids can cause irritation in itself. Does you doc see a thinning of your V tissues?-That's usually treated with estrogen ointment (not cream).  It's also possible that you may also have a subclinical yeast infection, not showing up on a slide, but hiding in the tissue-for that, you might want to consider a systemic tx for candida and continue the probiotic.
Sometimes the infections and treatments themselves can cause an oversensitivity of the nerves (sorry) and that dilemma is often treated with a physical therapist that specializes in vulvodynia.  As far as a virus, I can't speak to that as I have not heard of that before.  As this point, you know enough to keep regular appts with you gyne.  If you feel unsure of her recommendations, seek out a gynecologist that specializes in female pain for a second opinion.  I wish you the best.

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Re: I'M NEW - Do I listen to my gyno who I feel has it wrong?

Post  jennyk2 on Wed Apr 04, 2018 6:48 pm

When I was your age and in your situation, we found plain yogurt very helpful. It’s very cooling and also a lubricant. At other times I would soak a tampon in it as it helped with the burning and itching through the day. I have had this problem a long time and for many years I found orthogynest cream inserted into my vagina daily was a big help. Then I started to take amytryptiline tablets every night. Eventually they didn’t suit me any more and now I take 8 gabapentin daily. Also these days we always use KY jelly for love making. I hope this helps

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Get a 2nd opinion

Post  wuhujen on Sat Apr 14, 2018 7:57 pm

I would highly recommend getting a 2nd opinion and trying to find someone with more knowledge of vulvodynia. This sounds a lot like my initial situation which started with resistant yeast infections and then I tried every topical cream and ointment known to man (it seemed like). They helped for a while, but eventually I developed an allergy to the steroids and the yeast infections had all cleared up. It sounds like something is going on with you and yeast, so you might want to try an anti-yeast diet (a lot less sugar). But for YEARS doctors I saw kept testing me for every STD under the sun even though I'm sexually abstinent due to religious beliefs (and for real abstinent, not everything-but-penetration abstinent) and none of them seemed to believe. I finally drove from Atlanta to Charlotte to see a vulvar specialist named Dr. Libby Edwards who was able to give me a real diagnosis for my vaginal pain. It made such an enormous difference. We were able to find a course of drugs that reduced my pain and physical therapy helped my pain tremendously. Also, a flare up for me isn't necessarily triggered by sex, but can be triggered by a whole host because my nerve pain is related to my muscles getting out of whack. So all kinds of things including working out too hard or wearing flimsy shoes in the summer can be a pain trigger for me. It's also always more irritated around my period. I would definitely encourage you to try to find a specialist in vulvar pain (mine have always ended up being dermatologists rather than OBGYNS) - it's kind of a no man's land between the two types of doctors, so finding someone knowledgeable can be a challenge. But I kicked myself after I got a diagnosis that I wasn't more proactive in trying to find other doctors earlier because it took two years to get a diagnosis and then another 6 months to get real relief.

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Hi there!

Post  stillinpain on Mon May 07, 2018 3:47 am

First off, yes, it does sound like you are experiencing Secondary Vaginismus (you used to be able to have pain free sex and now you no longer can) which has led to you getting Vulvodynia, or vice versa. These conditions work hand in hand because the pain of Vulvodynia causes your muscles to tense up in anticipation of the pain and the muscles tensing causes more pain. As far as sex therapy, I did it for years and it was $150 an apmt regardless of the therapist and it isn't covered by insurance, so if you can afford that it doesn't matter if you don't have benefits, it won't help you anyway. For me, it was a relief to talk to someone but I did not improve from going because my problem is physical (caused from my spine being curved which has shifted my pelvis into a crooked position which causes nerve pain in my vagina). I would definitely find some kind of dr you can confide in about these issues and I would recommend joining vagainismus.com's program. Their forum has a page specifically dedicated to finding drs who focus on this in the area you live in. You will also get the dilators and books along with your access to the forum so you can work through the 10 steps at your own pace and ask questions along the way. Best of luck!

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Microgen PCR testing

Post  rmb on Mon May 28, 2018 5:21 pm

Have you heard of Microgen testing? If you live in the U.S. and have insurance you should look at this testing. I'm from Canada and did the test it cost me around $400 and nothing came up Sad but I only did vaginal swab, so if you do the testing I would highly recommend doing the Swab and Urine sample.

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Vulvar Physio

Post  rmb on Mon May 28, 2018 5:27 pm

See if you can find a Vulva Physio therapist too, I think in your case it might be helpful! I did it for a couple years but my symptoms are different than yours and it was not successful for me but I truly believe it would definitely work for some women because it was the only thing that gave me a tiny bit of relief.

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Re: I'M NEW - Do I listen to my gyno who I feel has it wrong?

Post  jungleclover on Mon Jun 04, 2018 10:50 pm

So I developed vulvodynia after getting infection after infection like you. I'm 23. If you get too many infections your body freaks out and is basically on high alarm assuming that there will be discomfort even when there isn't. It is the equivalent of a house alarm going off because some leaves rustle in the backyard. This is very similar to chronic pain patients so if you read about them it can be helpful in understanding how your vulvodynia developed and what to expect.

In my experience, the only way to get rid of the nerve damage is to treat the underlying infections. I did this by using boric acid. I used gelatin capsules and created suppositories that I inserted every day vaginally while I had an infection and then once a week if I did not. I did this for 6 months (do not skip your weekly dose even if you feel better). For me, once I get on a roll of infections, like you, I become super susceptible to them so taking this extended course was very important. I maintain my current health by taking a boric acid suppository every time I feel itchy or uncomfortable. I take them at the first sign of any discomfort and it usually prevents it. Boric acid is kind of uncomfortable and makes me leak everywhere when I wake up in the morning BUT what is wonderful about it is it works for BV and yeast infections. By increasing the acidity of the vagina it prevents those bugs from getting a foothold and infecting you. So now I never have to go to the doctor to know which infection I have and what medication I should be taking. Boric acid saved my life.

What I will tell you though is that even after you have cured the infections you may have to wait a few months for the nerve damage to die down. Nerves take a long time to regenerate. For me, it took a solid 8 months. You could probably speed this up by doing stimulation therapy with a women's health physical therapist. Good luck!

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Re: I'M NEW - Do I listen to my gyno who I feel has it wrong?

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