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Today at 2:10 am by anon99

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Today at 12:00 am by Bx11

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


VVS and PN

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VVS and PN

Post  senozs1 on Thu Apr 07, 2016 7:01 pm

Hello everyone, I had vestibulectomy in December but after having the surgery done, my pain outside the vestibule didn't go away. So my doctor requested an MRN, and apparently I have thicker and more intense left pudendal nerve. The amount of pain is incredible, I can't sit, do anything at all. I'm 23 and bed-ridden. I'll see another doctor who can give me steroid injection at the end of this month. But my main concern right now is, my doctor told me that vestibulitis was probably caused by my pudendal neuralgia. I'm really afraid that the pain inside the vagina, VVS, might return. Those two pains are outrageous themselves, let alone together. Any advice?Smile


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Re: VVS and PN

Post  emalita on Thu Apr 07, 2016 9:14 pm

I'm so sorry to hear that your pain was not relieved with surgery. My pain is not nerve related (even though an OBGYN tried to tell me it was), and I haven't had surgery. So I can't provide much insight as far as that goes. What is your pain like? Where is it located? Do you notice the pain is worse during different parts of your cycle? It took me a long time to connect my pain to blood or discharge coming into contact with my vestibule...not saying that's what your issue is, of course.

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Re: VVS and PN

Post  senozs1 on Thu Apr 07, 2016 10:41 pm

emalita - Thank you for your response! My pain is right where my left bartholin gland should be. It's located on my vulva, and the pain inside vestibule isn't as bad as it used to be. It's insane during my period, I'm on Lyrica 450 mg and an antidepressant. How are you doing? Do you think this condition is forever? I mean everyone is so desperate and in pain that I feel like I have no chance of getting my life back.

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Re: VVS and PN

Post  emalita on Fri Apr 08, 2016 12:27 am

My worst pain is on the right side of my vestibule, next to my urethra. The pain ranges from rawness, to feeling like I have a cut, to feeling like acid has been poured on my skin. For me, I just knew something wasn't right beyond nerve issues. My problem started after many rounds of antibiotics and using OTC treatments. When one of my OBGYNs said that since my wet prep was "normal" twice, and she didn't see any skin issues (uh, just because they don't have flashing lights doesn't mean they're not there), she told me I had overactive or damaged nerves. So she prescribed gabapentin in a compounded cream. I never used it.

I finally saw a specialist who found something wrong and didn't just tell me I was fine. He developed his own testing system that uses a higher powered microscope or something crazy like that; so he is then able to see beyond the common things found with traditional wet preps (BV, yeast, trich, etc.). His studies and testing methods are actually published on PubMed, and he used to work at Mayo. So, I'm giving his treatment a shot. He seems to believe that a lot of vestibule pain is a result of poor vaginal health, which causes discharge (including blood) to burn and irritate the vulva. My periods cause so much pain since things are flowing out at such a higher concentration. When I read that on his website I nearly cried because I felt like someone actually was acknowledging what I had finally come to believe was my issue.

I truly believe there is a cause for all pain or disease in the body (I've proven this to myself and doctors with other issues I have). So, for me, I don't or maybe can't believe this is forever. I don't know that there is an actual cure, but I do believe there are things we can do to stop the flare ups. I'm only starting my 4th week of my 4 month treatment plan, and I can't say that my vestibule pain is any better. But he told me I probably won't start seeing significant improvement for 2.5 to 3.5 months Sad

How are your prescriptions working for you? Are they helping?

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Re: VVS and PN

Post  senozs1 on Fri Apr 08, 2016 3:28 pm

Good luck with the new pain specialist. I really hope the treatment will cure you.

I don't really know if there's a cure out there, but the thing is my pain would never ever go away. Nothing was able to reduce it. I mean after the surgery, when I thought it was all over, after the morphines, the pain on my left was there again. It was such a disappointment.

Please write about your improvements:)

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Re: VVS and PN

Post  emalita on Fri Apr 08, 2016 4:59 pm

I'm so sorry to hear that your pain never subsides. Mine is always constant, but my periods make it terribly worse. What was the onset of your symptoms? A lot of women seem to tie it back to an infection. Have you been able to "link" your pain to any specific event?

The crappy thing for me seeing this specialist was that all of the sudden about 2 weeks before I was flying out to see him, my vestibule pain seemed to nearly dissappear (the pain he later diagnosed as lichen sclerosus was still there). I had finally stopped ALL treatments internally and externally, and this was about 2 months after stopping everything. But by the time this relief showed up, I had already bought my ticket to fly out to see him. Plus, I've had so many "maybe this month will be the end of this pain" disappointments that I chose to still see him.

Even though my pain had been considerably reduced, he still said that his test showed I had a really bad case of inflammatory vaginitis (not DIV though). So why I was feeling some relief, I will never know I guess. However, his treatments have increased my pain again (not the worst it's ever been though). He did warn me about it in his treatment documents, calling it "therapeutic discomfort". He has absolutely amazing reviews all over the internet; so I'm trying to hang in there.

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Re: VVS and PN

Post  sailor_moon on Sat Apr 09, 2016 2:14 am

Hey there my pudental nerve is the cause of my problems,  only recently got properly diagnosed. Your symptoms sound very similar to mine, worse on 1 side, worse when sitting.
Are they going to do a pudental nerve block steroid injection?  I've had 2 and it has helped with the inflammation and I have had some relief.  Have any doctors pressed on certain areas along your butt cheek, thigh and vagina/vaginal wall where the pudental nerve runs? When my doctor pressed in certain spots it was so painful!  That combined with 2 successful nerve blocks has pretty much confirmed my diagnosis.  Now it's just trying to find the cause, whether it is actually a trapped nerve or just irritated or inflammed.  
I really don't (want) to believe that this condition is forever. I think it is just finding the right doctor who is willing to take the time and take us seriously.  I have bee with my doctor for 18 months and in that time he has done so much for me. He has found and removed endometriosis,  discovered that I have non insulin related PCOS,   discovered that I had hardly any hormone production whatsoever, found and treated chronic candida due to my poor gut health (I have severe chronic gastritis , chronic inflammation of the stomach ) and treated these issues successfully. All while trying to find the cause for my vulvodynia.  

I went to at least 15 other doctors beforehand.  All of who just wanted me to go on antidepressants and send my to councilling!

It sounds like this guy is on the right track.  Unfortunately it is such a long process trying to rule things out. As I said it took my doctor 18 months ruling things out and also treating the other issues that were partially involved.

It is SO hard to try and stay positive with all this. It ruins every single aspect of your quality of life.  

Please let us know how you go! I hope you get a proper diagnosis soon! xx
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Re: VVS and PN

Post  emalita on Sat Apr 09, 2016 2:16 pm

sailor_moon - What type of doctor are you seeing (Naturopath, OBGYN, etc.)? It sounds like yours is very foward-thinking! Is he the iridologist you had mentioned in a different post?

All I've learned about the medical field throughout all of this is that doctors know VERY little about the CAUSE of disease. Their schooling doesn't teach them to care. All they want to do is quiet the symptoms. It's very sad. So I'm thrilled to hear that your doctor is so willing to help you get to the bottom of this, or at least get you to someone who can.

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Re: VVS and PN

Post  senozs1 on Sat Apr 09, 2016 2:30 pm

emelita: My doctor can't link this to anything unfortunately. It started when I was very stressful due to school, boyfriend issues, and some other problems. They think it may have happened because of me being too stressful.
Wow, your doctor sounds amazing, you're very lucky to have found someone who understands this problem that well! I really hope you'll see the benefits of your treatment!
My pain increases to 10 out of 10 before, during, and after my period. So around like 15 days I can't make it out of bed. And other days aren't much different, only a little.

sailor_moon: I haven't seen this new pain specialist yet, but my doctor said that I'll get steroid injections. I really hope they can help. My doctor couldn't find the reason for my incredible amount of pain, after vestibulectomy I tried really hard to make him believe. So when I went to his office with red and swollen eyes, he requested an MRN. And apperently I have a problem with my left pudendal nerve.
I showed him where it hurt most, and when he pressed there and to my pudendal nerve inside vagina, I thought I would die! But I have no idea what caused all this.
Your doctor sounds amazing. I think a doctor who believes you and tries to treat you is very hard to find. I went to many doctors as well, and they either laughed at my face telling me I was only panicking, or prescribed heavy medicines which ruined my stomach. Are you using Cymbalta? And is there a chance of a long-term relief or even cure with the injections?

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Re: VVS and PN

Post  sailor_moon on Sat Apr 09, 2016 10:16 pm

It's sad I have spoken to so many girls who go through surgery without having their pudental nerve checked first. You sound just like me when your pudental area got pressed on!
The chance of being cured by steroid injections is possible but very unlikely as it's been 3 years since all this started. And if the nerve is trapped steroids won't fix it.
I have read the best forms of success for Pudental problems is physiotherapy for 6 months minimum, combined with injections, and if that fails, surgery.

I go back to my do in 2 weeks time for another injection, and see where he wants to go from there. He said I will probably have to be referred to a Pudental nerve specialist. We need to find out what exactly is wrong with the nerve.

I know the feeling all too well of being humiliated and belittled by doctors. I was 25 when this all started, and got the same response from every doctor "oh you're young, there should be nothing wrong with you", "All tests for pathology have come back negative, you need to see a councilor", "Oh you know if you don't have sex with your husband he will leave you". They completely destroyed me mentally. It's so hard being a young person with this condition because unless you are menopausal Noone cares.

I have tried Lyrica and Amitryptilene, both of which have done nothing for me whatsoever. My doctor seems to think they are pointless anyway as they arnt going to fix the problem. I haven't tried Cymbalta.

I don't know what caused all this as I was an exercise fanatic, and I had also had quite a few falls over the years and injured myself. It's a nightmare. I just want it to go away. I can't have a baby until I get fixed as it would crush my nerve.

I hope this injection gives you some relief. After the anesthetic wears off the steroid takes about a 2 weeks to really kick in. It hasn't done much for me in terms of sitting pain but it has helped with the inflammation, and the itching and burning.

Do you get nerve like itch or burn? Are your symptoms worse when you get up and move around and get worse throughout the day?



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