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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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Surgery Failure :(

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Surgery Failure :(

Post  vetinprep on Thu Oct 24, 2013 10:35 pm

Hi
I joined this forum because I've been feeling really isolated and alone while slogging through a vestibulectomy recovery-hoping to talk to some people who understand!
I'm 28-I was diagnosed with vulvodynia and provoked vestibulitis last year-although I've probably had it forever I just hadn't tried intercourse before haha.
I ended up having a vestibulectomy exactly three months ago and I can't help feeling it was a failure.
I was lucky enough to have a pretty mild form of vestibulitis-I was always able to wear tight pants, have no trouble sitting and could use tampons easily. I really only had pain with intercourse.
Well since the surgery I now have pain sitting and bending over and tampons feel raw and irritating. I haven't tried intercourse yet but I can't help but feel that I'm worse than I was before the surgery.
I'm trying physical therapy now (it didn't help before surgery but hey I'll try anything!!) but I'm feeling so sad about everything-I think I may have made the wrong decision.
Sorry for all that venting Wink

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Re: Surgery Failure :(

Post  Alana3 on Thu Oct 24, 2013 10:37 pm

Hey I had the surgery too it took a little while for it to go away try physical therapy it worked well!

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Re: Surgery Failure :(

Post  vetinprep on Thu Oct 24, 2013 10:42 pm

Hey Alana-thanks for responding!
That's good to know about the PT and I will definitely keep trying!
Do you mind me asking how long it took for the pain with sitting to go away? I keep stressing myself out because three months seems way longer than most people had (I expected sex to be painful for awhile but the sitting pain is so new and unlike anything before surgery).

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Re: Surgery Failure :(

Post  Alana3 on Fri Oct 25, 2013 12:07 am

Like a week for me but I was a major success story. I healed before 6 weeks too.. but its different for everyone

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Re: Surgery Failure :(

Post  mary jane on Fri Oct 25, 2013 12:37 am

did you have throbbing pain?
did they remove your bartholin glands?

get well soon
xxx
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Re: Surgery Failure :(

Post  Sarah001 on Fri Oct 25, 2013 11:31 am

If you search for surgery threads there was a lady called jen007 I think who had a full vestibulectomy and a slow recovery but she has recovered so it might be an idea to send her a PM to chat about it
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Re: Surgery Failure :(

Post  Alana3 on Fri Oct 25, 2013 12:11 pm

Yeah shes my friend ill send her a fb msg and tell her to talk to you but she eventually healed too! She's doing well now I think everyone isdifferent in healing and depends on what and where you had stuff removed but you arent entirely healed until 6 months so give it more time

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Re: Surgery Failure :(

Post  vetinprep on Fri Oct 25, 2013 7:40 pm

Thanks for your replies!
Wow 6 weeks that's awesome!
And I will look for Jen-thanks!
I didn't have the bartholins glands removed (I don't think)-I had the partial vestibulectomy as I only had pain and tearing in the lower vestibule. My dr keeps telling me everything looks good and healed-which is why I can't understand why I still feel so bruised.
But I appreciate the heads up that it could be 6 months-it's definitely hard not to stress but I'm sure my anxiety isn't helping.
Alana I'm so glad it worked for you Smile
This forum is really awesome-I'm glad I found a community of people who 'get it!'

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Re: Surgery Failure :(

Post  Alana3 on Fri Oct 25, 2013 7:48 pm

Who was your dr? I seriously doubt u had ur glands removed I messaged jen so hopefully shell respond to you but remember everyone heals different you may have to stimulate the area yourself to get things going but check with your doc first. You may just have.to move and not protect yourself so much I did a lot after surgery I went for walks and kept moving... so maybe uf you took it easy itll be more difficult to bounce back?

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Re: Surgery Failure :(

Post  jen007 on Fri Oct 25, 2013 8:34 pm

Hi vetinprep,

I'm sorry to hear that you think your surgery wasn't a success, but I wouldn't give up all hope yet. It took me quite some time to get back to what felt "normal." My surgeon told me that the normal healing time for a full recovery can run from 8 months to a year. I happened to fully heal in about 6 to 8 months. For me the surgery was pretty much a success. I would say I'm 95% cured of this ailment. I do still have painful areas around the inner ring, as I like to call it, but as long as I dilate everyday for 10 minutes or so, I can have pain free sex!

Some background on my situation...I have PVD, Provoked Vestibuldynia. I was diagnosed around the age of 17. Tampons had always been hard, but I eventually got one in there. I realized something was wrong when I tried to have sex for the first time. It was extremely painful. I also had chronic yeast infections. No matter what I did they kept coming back. Most doctors thought I had a bacterial infection, but it always just came back as a regular old yeast infection. After changing body washes and underwear (100% cotton only) I stopped having the yeast infections, but I was still left with nerve pain. I saw about 5 or more doctors over a 2 year period until I found the right one. She then got me in with a surgeon and then I had the surgery. I had my vestibulectomy July 6, 2012 in New York. Recovery took about 2-3 months, until I could do normal activities. Full recovery was 6-8 months.

Let me know if you have any specific questions about surgery or recovery and I'll try my best to answer them!

-Jen

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Re: Surgery Failure :(

Post  mary jane on Mon Jan 06, 2014 11:15 pm

though very rare, this surgery can cause more damage. pain with sitting and bending is pudendal neuralgia, although I seem to quickly classify a lot of symptoms as this, however some cases just do not sound like vulvodynia to me....

on this forum you can find a few ladies who've had worse pain after this vestibulectomy surgery:
http://www.pudendalhope.info/forum/viewtopic.php?f=2&t=4474&p=34692&hilit=vestibulectomy#p34692
just an example:

08 diagnosed with vulvar vestibulitis
'09 vestibulectomy-Dr. Goldstein-failed
continued worsening pain
'11 right labral repair and release-Dr. Coleman
2/10-8/12 severe depression, minimal dr appointments
Treated with 4 different physical therapists from 08-12 no improvement whatsoever
'13 pudendal nerve blocks-Dr. Chapman
'3 MRI both hips showing labral tears
Dr. Conway officially diagnosed PN/PNE 7/13
9/13 Bilateral hip repair Dr. Coleman
Looking for help..hoping for answers
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Re: Surgery Failure :(

Post  Alana3 on Mon Jan 06, 2014 11:36 pm

Why are you constantly comparing everything to what you think you have? Not everyone has that. My surgery was extremely successful. Im not sure why you're pulling up stuff from months ago. But did you know most docs wont consider surgery unless its provoked localized vulvodynia? Therefore many people arent even considered unless it meets specific terms. All of the people I have talked to have had successful surgeries. Stop comparing everything to you we arent all the same case. And for the love of god not all surgery is bad. Had I had you on this forum when I did it it would have scared the hell out of me for absolutely no reason. They arent going to perform a vestibulectomy for what you have.

Ill site my problems: pain for 14 years and starting when I was 3 surgery in 2013 and cured. So don't bring up the worst case that's not ok. Its quite honestly annoying and awful to see this because youre telling people not to do stuff that their doctors thinks is right for them. Thank the fucking lord I did it I would still be in agonizing pain had I not. Its fucking medicine its not going to be an exact every time. Unfortunately one treatment isnt the same for everyone which is true for any disease. So please stop bad mouthing surgery. It was a lifesaver for me and so many others.

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Re: Surgery Failure :(

Post  mary jane on Tue Jan 07, 2014 3:47 pm

no offence alana, but you tell everyone here "oh it might be endo" so you're in the same boat as me.

I am not badmouthing surgery, but they need to know it does not work for EVERYONE as a matter of fact some women get 20 surgeries to "fix" their problems, it only makes them worse. I go to support meetings for this crap and NONE of those ladies were cured by surgery, mostly it's PT and medication combined.

My case is 100% unique and until I get a high-res MRI I won't know for sure, but I no longer trust anyone with a scalpel in their hands
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Re: Surgery Failure :(

Post  Alana3 on Tue Jan 07, 2014 4:46 pm

I really DO wish you the best of luck seriously! No one deserves this its quite honestly terrible. But in order to get to a vestibulectomy you have to jump thru a ton of hoops before you get to the last resort. If you see OMG IT DOESNT WORK DONT DO IT you're feeding into a persons head. You're making that decision so much harder. You're losing half your vulva its not an easy decision and made harder when someone is like a lot of people are made worse. Stop being Eeyore (sorry I love him!!!) a lot of people are made a heck of a lot better. Be encouraging tell people your own experiences which aside from your cyst (which had to be awful) you haven't had this particular surgery. I understand you have spoken to people who were made worse, and I feel for them, but just because that happened to a few people doesn't mean everyone. And certainly doesn't mean that its a bad surgery. It was by far the easiest surgery I have ever been thru and the best decision I made for myself. Possibly the priciest however lol...

I say to check out the endo avenue when people have INTERNAL pain and symptoms that are like mine. And I never flat out say you have endo. Painful internal sex IS a symptom. Sadly, there are no two cases of any disease that are alike. You say everyone has your nerve problem which no they do not. Just because someone sits down and it hurts doesn't mean it's what you have. I used to sit down and it hurt but I didn't have that same nerve problem.

Once again, a vestibulectomy which is what this page was about is a last resort which everyone faced with the decision knows about. It is not guaranteed. And is only reserved for (unfortunately) a select few people who actually have provoked localized vulvodynia. So, if people are getting the surgery for problems other than that they aren't going to be "fixed". Remember that some people are willing to take the risk for a chance to feel better. I did. It was a HUGE risk. But I did it. And no, surgery isn't for everyone. But I never responded to meds, was sick of taking meds, and no longer wanted that experience. But you have no idea why someone is getting a hysterectomy, ovary removal, vestibulectomy. Sometimes THERE IS NO OTHER OPTION. How would you like it if I said "oh your treatment sucks, don't do it" when you have nothing left to turn to?

Try to stop bad mouthing doctors. Maybe the ones you have seen aren't the greatest for you, but that doesn't mean all doctors are bad and that you can't trust them. Maybe start hitting up specialists and don't go to a regular obgyn. YOU are your own advocate. If one doctor doesn't do it for you go to someone else. I went to 14 in a year until I found someone who took me seriously. And traveled. (Than again, I'm not sure how it works in Europe, so maybe this isn't a feasible option??) And if you cant trust someone and get a diagnosis how the heck are you going to get treatment? I mean if its not what you want to hear are you going to go through with it? Also, the more you bad mouth the docs, the harder it is to find treatment, it will be like a mental block. I'd hate for you not to get well because a few doctors couldn't help you. There are a bunch more out there!

Not trying to be bitchy, but I'm just sick of seeing how you hate doctors, how treatment that other people are willing to try "is bad and not to do it". You're right everyone is unique! But at the end of the day we're all different, none of us have the same things and it's really unfair to see its nerves like mine! It may be nerves, but may not. Sometimes it isn't vulvodynia. Endo can actually mimic vulvodyna so can IC, polyps, infections, etc etc. It's a completely unfair, frustrating disease.


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Experiencing the same after surgery

Post  Peachy92 on Wed Jun 29, 2016 2:40 pm

Hello vetinprep,

I know this is an old post now, but I am 3 months into recovery from my partial vestibulectomy, and I really feel I made the wrong decision Sad like you, I only had pain on penetration (which I only found out when I
Became sexually active at ages 22) not now I have tightness/discomfort just sitting in certain positions, and a fair bit of itching too. I Am so upset at the way it looks too (my surgeon did not tell me about this) as my vestibule area is so lumpy on one side, and the labia minora much shorter and unsymmetrical. I could deal with the altered appearance if I felt the op was a success, but I don't. If anything, it seems worse.
My dermatologist is now unhelpfully telling me that she feels the partial vestibulectomy was unecessary, and hasn't helped. Great Sad she said I should have tried lidocaine, amytriptiline and physical therapy from the start.

I am in a new relationship, and all of this is so hard to deal with. I have been told by my pyschosexual therapist just to do pelvic floor excersizes for the next three weeks before dilating, but I'm terrified.

So sorry, what I was really wondering is did things improve for you since this post? How are things going? Has it seemed worth it?

Thankyou for any advice you can offer me,
Sophie

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Hello I introduced myself and joined yesterday. My name is Sophia. Been suffering for 18 years now.

Post  Sophia15 on Thu Aug 18, 2016 1:49 pm

Hello everyone,
I've been a suffer of this dreadful condition for 18 years and tried just about everything out there. I even went as far as doing nothing and just dealing with the pain and ironically that was when I was doing my best but that was also when I screwed it up. I'm not saying that having a vulva vestibulectomy is wrong for everyone. I don't want to join a group where I need the support. Believe me, it's not. It was just a poor choice on my part and I feel guided the wrong way. I recently was diagnosed with pudendal neuralgia with a lot of secondary issues because of having the surgery. I now have pelvic floor issues and vulvodynia. Which I didn't have the spasms in my pelvic floor until I had the surgery. Nor was I incontient like I have now. My point is I don't blame my doctor. I blame myself for not listening to my own gut. It was an unnesscary surgery as my team of specialist have told me now because I always had the pudendal neuralgia and my pudendal nerve should have been checked prior to surgery. Vulva vestibulitis and pudendal neuralgia have almost identical symptoms. This is my fear, that so many young woman are fast to be cut , to be cured , because yes it's very temping when you hear the words that a surgery can cure you. For some it does. For others, it can destroy what quality of life you already had. I just want the woman on this forum to be smart and do the research before you let a surgeon touch your vagina. My surgeon was the best and still is. I would never knock him or her. Do I blame him or her? Part of me thinks he or she should do things a little differently. I can't be the only failure he or she
had. I'm trying fix what's broken the best way I can now. So, I can at least get out of bed on a daily basis. I lost a lot but I'm a fighter and will continue to fight. Thank you for this group. Sophia.

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Re: Surgery Failure :(

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