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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 …

Comments: 3

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 …

Comments: 5

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 …

Comments: 3

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 …

Comments: 6

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 …

Comments: 3

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: 10

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.

Comments: 1

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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what do I have? is it vulvodynia or something else?

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what do I have? is it vulvodynia or something else?

Post  sal2016 on Sun Apr 10, 2016 11:49 am

Hi everyone

I really need help. I have been suffering from pain during intercourse for the last 4 months. I am newly married and this is affecting my marriage. The pain started in January just right after having intercourse, I noticed rash that looked like a wound around the vaginal opening. Then it started to burn and hurt every time I had sex. Outside sex, nothing hurts, no feel of burn or anything else.

I went to a gynecologist in Italy, she wasn't very helpful, the test results were all negative and positive for Ureaplasma urealyticum and Lattobacilli. She said that the Ureaplasma urealyticum does not cause the pain I am describing, she suspected that I have vulvodynia but she wasn't sure. I had to leave to another country to work and didn't have time for physical treatment as she was suggesting. I am using Saginil gel and had few antibiotics to treat the Ureaplasma urealyticum. The pain is still ongoing. I stopped the perfumed shower gels, I am only using Saginil cleansing liquid as suggested by the doctor.

Now, I see my husband every two weeks or so. The pain is less during intercourse but if we don't use lube it gets really painful and I cannot continue (we don;t use condoms - some types of lubes increased my burn feeling, so now we only use Aloe Vera as a lube). The burn becomes unbearable after I finish/come, so my husband had to finish in other ways, not the best sex life ever.

I really don't know what to do, I am working in a developing country with no qualified gynecologists. I also don't know if this is vulvodenya or something else. Please advise me! Thank you very much..

sal2016

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Re: what do I have? is it vulvodynia or something else?

Post  emalita on Sun Apr 10, 2016 3:25 pm

Unfortunately the term "vulvodynia" simply means "chronic vulvar pain without an identifiable cause". So someone could certainly diagnose you with it, but it's just giving you a medical term for something you already know (your lady parts hurt!). I know some women feel a sense of relief getting the diagnosis, but I was insulted. Thanks for diagnosing me with pain, Doc!

Sorry, off my rant. I wish I could say find a doctor qualified in vulvar pain to give you an exam. However, there aren't many good ones out there, and you mentioned you are working where there are no qualified gynecologists. So, I will tell you what my vulvar specialist told me to start with.

You are doing the right first steps! Eliminate all chemicals that are coming into contact with your vulva. This includes: flushable or feminine wipes (they are the devil in wipe form), shampoo (my OBGYN has me washing my hair in the sink - he says it only takes a single drop in the shower to set off a reaction), laundry detergent (I make my own, but my OBGYN recommends All Free & Clear or Cheer Free & Gentle), shaving cream (my OBGYN recommends Vanicream Shaving Cream), super soft or scented toilet paper (lots of chemicals go into making super plush TP), not 100% cotton tampons/pads (I use a UK brand of organic 100% cotton tampons called TOTM - ordered from Amazon), douches, etc.

I know some women have found success by also eliminating feminine washes, but my OBGYN says not using a soap to eliminate bacteria/film buildup is a mistake. He recommends Grandma's Pure Lye Soap or Vanicream Bar Soap. However, I am a vegan, so lard soap is a no-no for me, and the soaps sounded a bit drying (pure soaps generally are). So I did my research, and I choose to use Sliquid unscented wash. It doesn't burn, sting, or cause me any dryness. I use this once a day (it is an external wash obviously). I also use this as my body soap since everything runs down in the shower.

Another huge thing I can't stress enough since you are having intercourse pain is that your partner MUST use these hypoallergenic products also. Afterall, his skin is coming into contact with you. So any chemical residues on his skin can rub off on you. It also can take weeks to months for your skin to calm down. So give this a fair shot before writing it off.

I know it sounds daunting, but these are the easiest things to try until you can find a specialist. I hope you find some relief!

Also, a few more things to think about:

Do you have pain only with intercourse or with any insertion (tampons, finger, etc.)?
Does your skin elsewhere easily turn red and inflamed (for example, if you scratch an itch, does your skin get overly inflamed)? You mentioned you had a rash-like appearance...could be dermatographia?

emalita

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Re: what do I have? is it vulvodynia or something else?

Post  sal2016 on Mon Apr 11, 2016 7:10 pm

Thank you very much emalita for the useful advice. I don't think it's dermatographia, my skin is quite resistant. I did some
laser brazilian sessions (and still need a few) but still shave down there, and it doesn't get irritated unless I cut myself.

I cannot surely say that pain is only with intercourse, I honestly stopped using tampons or even coming near that area after I started getting pain. So only intercourse makes it painful at the moment, so ya fingers included.

I also get some discharges, yellowish, not that much but very annoying. I now always need to wear the daily pad..

The weird thing is that I can sit and walk normally, not like what most women with vulvedynia feel, the pain only happens with intercourse. My spouse and I are quite frank about it, but he thinks that it's becoming psychological. It's NOT, it's just pain that I want to go. I love him so much and don't want to ruin this relationship, esp. with the disappointing sex we have!


sal2016

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Re: what do I have? is it vulvodynia or something else?

Post  sal2016 on Mon Apr 11, 2016 7:15 pm

I forgot to ask, do you know any good gynecologist in New York (preferably Manhattan or New Jersey), if not, Washington DC could do (although a bit far). I am planning to go in July, and i really should see someone to fix this problem...If you tried any one with very experience it'd be really helpful to share his details...thank you so much!

sal2016

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Re: what do I have? is it vulvodynia or something else?

Post  emalita on Mon Apr 11, 2016 7:49 pm

The Centers for Vulvovaginal Disorders (Dr. Goldstein) is in that area. I've never been there; so I can't speak to his treatments or the cost to be seen. Take a look at his website: www.cvvd.org

I chose not to go to that clinic because, from my research, it seemed like he focuses on treating vulvodynia as a pain condition (injections, antidepressants, anticonvulsants, anesthetics, etc.), which I was not interested in. I instead flew across the country to see Dr. Fowler in AZ. He believes a lot of vulvodynia pain is caused by poor vaginal health. I'm only on week 4 of his treatment; so I can't say for sure that it will cure me, but his philosophy was more aligned with my own. I know this is on the opposite side of where you want to seek treatment, but here is his website (it's quirky - so look past that): www.fowlergyninternational.com/diagnostics

Good luck! I hope you find relief! If you need someone to chat with, since this site isn't very active, don't hesitate to PM me.

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Re: what do I have? is it vulvodynia or something else?

Post  sal2016 on Mon Apr 25, 2016 1:51 pm

Thank you so much, sorry it's been sometime for me to log into this forum. I don't honestly wish to be treated by injections or other similar ways, but let's see how bad it's..

Does vulvedenya by any chance cause yellowish discharge every now and then? maybe it could be something else!

sal2016

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Re: what do I have? is it vulvodynia or something else?

Post  emalita on Mon Apr 25, 2016 5:30 pm

Well, something we have to remember is that vulvodynia isn't a single disease/condition for everyone (it's not like testing positive for a UTI or yeast infection). Vulvodynia is a diagnosis based off of elimination of other conditions (e.g. yeast, BV, STDs, etc.), and when your doctor cannot find a cause for your pain, they may diagnose you with vulvodynia, which is simply chronic vulvar pain without a known cause. Simply, they are telling you that you're in pain, but they don't know why.

I had a similar discussion with another member on here not too long ago, and I'm going to repost some of the things I said in that post.

For some women vulvodynia is caused by an undiagnosed infection (undiagnosed for whatever reason) or is the aftermath of a really bad infection that has since cleared (which was basically my issue). Some women have overactive or damaged nerves, or some have pelvic floor dysfunction. True* vulvodynia should NOT be an active infection, but I've found a lot of tests done at a regular OBGYN office miss things. Or the doctors don't know exactly what test or lab to order. A pretty good book that walks through all sorts of down there lady issues is The V Book by Elizabeth Stewart. I highly recommend it.

So, on to your question about discharge...unfortunately yellowish discharge can indicate many things. I am not a doctor or nurse. So the info I'm providing is only from my research and googling. Creamy yellow may be super normal for some women. However, yellowish discharge could also be a sign of things like pelvic inflammatory disease, trichomoniasis or other STDs, inflammatory vaginitis, BV, etc. I don't want to scare you because none of these things may be your issue. Have you gone in to see a doctor yet to have basic tests run to see if they can find anything? That's really where you have to start.

*When I say "true" vulvodynia, I mean no disrespect and am not diminishing the suffering of those who are struggling with a possible undiagnosed infection. However, the National Vulvodynia Association states vulvodynia is not caused by an ACTIVE infection. So, I just wanted to make sure I wasn't making up my own rules by saying vulvodynia could be caused by an undiagnosed infection.

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Re: what do I have? is it vulvodynia or something else?

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