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» What's next?
Today at 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

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 …

Comments: 4

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 …

Comments: 3

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

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

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 …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


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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