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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

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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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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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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 healed without surgery. Surgery should be your LAST resort!

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I healed without surgery. Surgery should be your LAST resort!

Post  cupcakesandaliens on Mon Jan 21, 2013 10:39 am

I've had painful intercourse since day one. The first boyfriend I had a sexual relationship with (lost my virginity on my 16th birthday) had me convinced my problem was that I was just not used to it, and over time it would go away on its own. Two years later, after we'd broken up, I went to a doctor to find out what was wrong, who (as a stroke of luck would have it) is very well educated in the condition, and has had a magnitude of success. After hearing about surgery as an option. the desperate "quick fix/instant results" side of me immediately wanted to go for it... luckily for me, she strongly advised against it and strongly advised I exercise all other options first. We decided to go the cream/ointment route to start. Clobetasol is used by many Vulvodynia patients, but it alone is likely not going to give very strong results. So I was only instructed to use it every-other night, and a ----different--- cream every morning and every-other night. This other cream, I'm not sure what the technical name for it is, but reading it straight off the perscription tube is "*TRAUM/GABA/PENT 8/2% OIN. This stuff, whatever the heck it is, is awesome. Mind you, it took a very impatient two years of use to get to where I am today (and it's been two more years since I've hit that sex-feels-good point)... but I can tell you right now, it was well worth the wait. No evasive and potentially condition-worsening surgery. I also had a problem, even after the actual Vulvodynia pain subsided, my muscles were so used to the pain that they'd tense up in anticipation (which in turn caused me pain again). They have physical therapy to help you correct this, but I opted to learn to relax those on my own with the help of a supporting partner. I've also had triumphant success with that!.
My husband (I recently married a wonderful man who serves in the Marines) is the most endowed of any man I have ever met or seen naked in person (I've been with several men, and been in various situations of nudity), and the first time I saw him naked, I wanted to run away and cry in a corner. Surprise, surprise, I am able to have sex with him and not experience much pain, if any at all! The only time I ever do experience discomfort, is after we haven't done it in awhile (his military career brings several months of abstinence at a time) the initial penetration may sting a little (because he's so large, it can sometimes take us several minutes of gentle easing to get it in the first time, but he's had that problem with perfectly-functional sexual partners before me as well), but after that, I feel almost no discomfort for the rest of our sexual session. We can change positions and re-penetrate without trouble. Sex is actually enjoyable, and feels good! If I was good and used my cream more often (now, I'm only supposed to use it every few weeks, though I forget sometimes for months on end) I bet you I'd be at 100%. At this point, I'd say I'm at about 95% fully healed, and so relieved. No more ruined relationships or feeling like I can never give my full self to another human being. I also have a very close friend with the same condition, and was able to help her with my experiences, and years later, she's doing almost better than I am.

Please. Surgery is very dangerous and can actually make your condition worse or irreparable. Do everything you can before you take that route. I started seeing results within months. They're discouragingly slow to onset, but once it starts, it just gets better and better. Ask your doctor if the creams I used might be helpful for your situation Very Happy. I'm aware that everyone is different, but I feel obligated to put this information out there. There are laser treatments as well, herbal and natural treatments, etc. for your own health, you should consider these things first.

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Re: I healed without surgery. Surgery should be your LAST resort!

Post  Alana3 on Mon Jan 21, 2013 1:00 pm

Lucky I had to go the surgery route I had for or 6 years and exhausted everything blah good tho im happy for you !

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Re: I healed without surgery. Surgery should be your LAST resort!

Post  jen007 on Mon Jan 21, 2013 1:20 pm

cupcakesandaliens,

I completely agree with you! Sometimes I wish I had tried some other things before surgery, but I had been suffering for over 5 years and now I'm not. There are only two things that I don't like about the surgery, one being I no longer have natural lubrication, and two my surgeon cut out an area that did hurt, but also gave me pleasure during anything sexual. Sex wasn't even possible before surgery and now it is...and it's pain free too Smile . Surgery was a good option in my case, but thats only because I had tried almost everything before deciding it was right for me. I also did my research. I've said this time and time again surgery is a last resort and should only be done after exhausting all other treatments. I'm so glad that the creams have worked for you! I wish it would've worked for me, but over all I'm happy with my results Smile

Thanks for the post! It's nice to see someone having such good results from the creams! Not something we see here very often.

-Jen

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Re: I healed without surgery. Surgery should be your LAST resort!

Post  Alana3 on Tue Jan 22, 2013 9:30 pm

Surgery is an absolute last resort. But using a laser is def not recommended that for sure can screw things up worse. I have only heard positive things about the surgery from the people I have talked to, and with my own experience, I highly recommend it. I tried treatment after treatment with absolutely no relief. I didn't want to wait years for it to MAYBE work, I had been suffering for 6 years already with it only getting worse, I couldn't have sex and I was sick of the "maybe this will work." But as for the laser, I certainly wouldn't go that route, too much research has been said NOT to do it.

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Re: I healed without surgery. Surgery should be your LAST resort!

Post  cupcakesandaliens on Wed Jan 23, 2013 7:17 am

I haven't heard of anyone else that has used the second cream that I mentioned, as my doctor said it was something she had initially tried on a whim on her own, and I'm almost positive that was a huge part of my success. If I had just used Clobetasol or some of the other standard cream treatments, I don't think I would have gotten anywhere. I also think that people who try the creams don't stick it out long enough, or change their cream routine too quickly because they aren't getting results fast enough. Certainly, I'm definitely not saying to not consider surgery, I just know that a lot of doctors will jump right to referring that first. Again, the creams I used didn't heal me for almost two full years, and I didn't start seeing truly great results until quite late in my treatments.

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Re: I healed without surgery. Surgery should be your LAST resort!

Post  Alana3 on Wed Jan 23, 2013 2:05 pm

Yeah, none of my doctors even suggested surgery until I went to a vulvodynia specialist and even then he tried me on topicals first and said the surgery was a way last resort and not to think about it unless I had to. I don't have the patience for 2 years lol I tried stuff for 6 months if I didn't get results in that amount of time, I went on to something else. For me surgery was a good option, because now I feel a lot better, and I don't have to wait months or years I knew in 6 weeks I was better! Everyone is different though so I'm glad you got your results, but I def didn't have that kind of time to play around with. lol Smile

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Re: I healed without surgery. Surgery should be your LAST resort!

Post  cupcakesandaliens on Fri Jan 25, 2013 11:20 pm

The problem with surgery is that it can mess you up so much worse than you were before. I would rather wait two years (and I was seeing decent results after about the first 9 months) than the rest of my life.

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Re: I healed without surgery. Surgery should be your LAST resort!

Post  jen007 on Sat Jan 26, 2013 12:32 am

I totally understand what you're saying. I've read about women, on other forums, who've had bad experiences with surgery and have ended up much worse. Maybe if I had waited longer I would've seen results, but none of my doctors had me stay on creams for more than 2 or 3 months at a time. I'm not sure why, but I was getting pretty impatient. Like I said I had been suffering for a while and nothing was helping so I felt like surgery was my only option. The creams didn't even make a slight improvement on me down there so I gave up on them. I would've done anything if it had meant not getting surgery believe me. I'm just happy my pain is gone.

-Jen

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Re: I healed without surgery. Surgery should be your LAST resort!

Post  Alana3 on Sat Jan 26, 2013 11:28 pm

The problem with any of it is there's no enough research. The creams for me made me worse and I still have some pain but I can deal with it because it's in one spot. Any kind of medical procedure can unfortunately mess you up worse and I've read other women having really bad problems but God only knows who they went to and what they had done. Most of the people I've talked to have had good results if they went to good docs but medicine isn't 100% unfortunately I guess my point is 2 years was way too long for me and I had good results and im glad you did too.

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Re: I healed without surgery. Surgery should be your LAST resort!

Post  m18 on Thu Mar 07, 2013 1:48 am

Heyy I'm not keen as surgery as an option either as I feel it will only make matters worse for me and also I live in the UK and apparently you can only get surgery done in America. Thankyouu for posting your story on being healed, I've been suffering for over 2 years now and its driving me insane, I've also lost any arrousal or libido that i may of had before so I'm never in the mood even if I'm not in pain. Has anyone else lost their arrousal and libido because of Vulvodynia?? and also are these creams available to get in the UK?

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Re: I healed without surgery. Surgery should be your LAST resort!

Post  kdonlan on Thu Mar 21, 2013 10:33 pm

That's so wonderful for you! I'm glad to hear that other routes worked and spared you the surgery.

For me, even 4 weeks after the surgery I already feel it was the best solution. There are several different types of vulvodynia and for some, the surgery is the most viable, most successful option. After a year of failed attempts with creams, Rxs and physical therapy the surgery was my last option. (I'd also been suffering from it for 13 years, the last 5 being the most unbearable) If done by someone who does them frequently, the risks are pretty low.

Jen - I'm surprised to hear they removed that gland for you! My doctor told me that she no longer removes the lubrication gland for that exact reason and that most doctors have stopped going that. That sucks Crying or Very sad But so happy to hear that so many who have had the surgery had such success.

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Re: I healed without surgery. Surgery should be your LAST resort!

Post  Alana3 on Fri Mar 22, 2013 1:53 am

I agree I thrived after mine he did a pelvic and I barely felt it who did your surgery?

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Re: I healed without surgery. Surgery should be your LAST resort!

Post  Alana3 on Fri Mar 22, 2013 1:54 am

Also I went into a remission phase where I thought I was cured and it came back I couldn't deal with it anymore so surgery

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Re: I healed without surgery. Surgery should be your LAST resort!

Post  dmilly01 on Thu Mar 28, 2013 9:51 pm

m18 wrote:Heyy I'm not keen as surgery as an option either as I feel it will only make matters worse for me and also I live in the UK and apparently you can only get surgery done in America. Thankyouu for posting your story on being healed, I've been suffering for over 2 years now and its driving me insane, I've also lost any arrousal or libido that i may of had before so I'm never in the mood even if I'm not in pain. Has anyone else lost their arrousal and libido because of Vulvodynia?? and also are these creams available to get in the UK?

Hi m18. I am also from the UK and my consultant refused to even think about surgery! He wouldn't of been able to perform it either. he said he only knew of one surgeon in Birmingham. But advised me against having it done. possibly because our medical profesion are not so up on the condition over here, than in the states, so probably operations are not so successful. I don't know? I am not even looking at that option at the moment. I am seeing a Pain specialist on the 4th of April. So hoping that he might be able to help me in some way. I am also going to give some vibrators a go. They are actually anal ones that got from Anne summers! As smaller than normal ones, so thought would be easier to use. I have also lost my libido as well, as too painful to have sex! Sad I have tried lidocaine 5% ointment, which worked at first, and didn't hurt when had sex, but that was when I was first diagnosed early last year, now that doesn't touch the pain when my hubby and I have sex! It does help it I am having a flare up during the day though, I also apply it to a cotton wool ball at insert it into my vagina at night, which is very soothing. Coconut oil is good too for soothing. Also Aveeni oatmeal bath and shower oil is good, I use it every day. I couldn't get hold of the gabapentin topical cream here, the doctor said it is too expensive for the BMA! I think I should move to America at this rate! LOL. Hope you find some relief from this horrible debilitating condition!X

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Re: I healed without surgery. Surgery should be your LAST resort!

Post  jen007 on Fri Mar 29, 2013 1:13 pm

kdonlan-

Sorry for the delay in response. I wish they hadn't removed the gland, but where the gland was, was causing me the most pain and they had to remove it. It hasn't caused me too much of an issue...I'm not dry or anything like that. It's just annoying to have to always use lube when I have sex.

dmilly01-

I'm from the states and have used gabapentin compound cream. In my case it did nothing, and from what I've read here others had similar stories about it as well. I'd try to get my hands on some amitriptyline it you can. It's the other thing that gave me some relief. The only down side to it is it makes you gain weight and sleepy. For me it made me lose a lot of weight which was very odd...so I had to stop taking it.

Good luck ladies!

-Jen

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Re: I healed without surgery. Surgery should be your LAST resort!

Post  dmilly01 on Sun Mar 31, 2013 4:56 pm

jen007 wrote:kdonlan-

Sorry for the delay in response. I wish they hadn't removed the gland, but where the gland was, was causing me the most pain and they had to remove it. It hasn't caused me too much of an issue...I'm not dry or anything like that. It's just annoying to have to always use lube when I have sex.

dmilly01-

I'm from the states and have used gabapentin compound cream. In my case it did nothing, and from what I've read here others had similar stories about it as well. I'd try to get my hands on some amitriptyline it you can. It's the other thing that gave me some relief. The only down side to it is it makes you gain weight and sleepy. For me it made me lose a lot of weight which was very odd...so I had to stop taking it.

Good luck ladies!


Hi Jen007

I was put on amitriptyline and it didn't work for e, I was continually spaced out, and put on lots of weight! It didn't even touch the pain unfortunately. strange thing is I also suffer from ibs and it did make a lot of difference to that though! Lol. I am seeing pain specialist this Thursday, so hopefully he might be able to help me in some way. Thank you though Smile x


-Jen

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Re: I healed without surgery. Surgery should be your LAST resort!

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