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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 …

Comments: 1

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 …

Comments: 0


Constant disappointment at Doctor's office

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Constant disappointment at Doctor's office

Post  leitheij on Sat Oct 11, 2014 12:02 am

I don't know why I keep going to the doctor's office hoping that some new doctor will give me a treatment that works. I am constantly disappointed. I can't tolerate most if not all anti-depressants (whether it's a tricyclic anti-depressant, SSRI or SNRI) and many anti-convulsant's I can't tolerate. The burning in my vulva started about 14 months ago and was triggered by a yeast infection and sexual activity. I remember thinking it was strange that I was burning badly after sex. At the time it would subside eventually. I quickly ended my relationship. And two months later it just came on suddenly unprovoked by starting a new job. I did pelvic floor therapy which helped. Spring of this year my pain was down to about a 1-2 out of 10. I all just about forget about Vulvodynia until I got into a new relationship. Sex kicked it off. That was 4.5 month ago and it has been mostly unprovoked since. This time pelvic floor therapy didn't help. I have tried all kinds of creams. I have tried oral medications and trigger point injections into the prudendal nerve but nothing has worked.

I am told I now need to fly out to Washington D.C. to see Dr. Andrew Goldstein. It is an hour flight. I just can't believe that I live in a major metropolitan city (Detroit) and there isn't one doctor that can help me. I feel humiliated. My boyfriend and I broke up a few weeks ago over this and I had to quit one of my part time jobs. I also suffer from chronic head pain which is mostly under control unless I cry...which of course I' doing a lot of that lately. I would love to just die. I keep trying and trying and trying.. and nothing gives. I am looking for a new job that will not aggravate the V. The neurologist I see for my head pain thinks that both my head an V pain are Central nervous system related.. so essentially the pain originates in my brain.

I'm sorry for venting. I just wish people would see me not for all my failures especially surrounding this but for how hard I keep trying to make things better. I just don't know what to do anymore. Sad

leitheij

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Re: Constant disappointment at Doctor's office

Post  sailor_moon on Sat Oct 11, 2014 10:40 am

Oh I know how you feel. I am onto doctor number 12 or 13...I have honestly fucking lost count.

I hate it...going in to see a new doctor and having your hopes up.. and then it all comes tumbling down when the doctor is clueless. Its a big kick in the guts...or on this case, a big kick in the snatch!! Lol sorry...gotta try n keep a sense of humour with this issue.

I am finally seeing a doctor who has done a rare hormone test not many doctors test for... it has come back with a result...my hormone levels are terribly wrong! !! I go back to him for the full result on Monday and don't know what to expect.

Hope you are coping ok!! What is the next step in your treatment?

Have you seen a proper vulva specialist?
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Re: Constant disappointment at Doctor's office

Post  leitheij on Sun Oct 12, 2014 5:28 pm

I have seen a Vulva Specialist (Or so I think I have). The Vulva Specialist told me all her ideas but none of them really helped.
I have had two Gynecologists suggest possible Desquamative Inflammatory Vaginitis because of all of the discharge but I'm just not sure. I am also getting what feels like stabbing pains in my urethra especially after I pee and bowel movements.

I hope you get some answers from your appointment on Monday regarding the hormone test!

I'm also very hard on myself because this all started when I was dating a guy last summer (2013). We weren't careful sometimes and I found out I had HPV and I also got a yeast infection. I know it's not something that he purposefully did. But I keep blaming myself.. If only I had broken up with him earlier and maybe the sequence of events wouldn't have happened.

And, I miss my most recent ex. We started dating in may 2014 and then a month later the V issue got triggered again and has been with me ever since June. I tried to hide it as best I could from him all the while searching for answers. In september I started telling him a little more about what was going on because the burning pain just kept getting worse. The pain kept me from being able to stay over his house as much as I could. He started acting differently. We could barely have intercourse. I know there is oral sex and everything but honestly, this condition makes you not want to do anything. I ended the relationship because I just felt that he was just not happy. I kept trying to talk to him but he would shut down. I miss him so much. But, I'm just too embarassed to call him. I tried to overcompensate by doing nice things for him during our dating.. bringing his dog treats.. cooking things for him..etc. Even now, Whenever the phone rings.. or I get a text.. I just keep thinking.. maybe it's him texting me to tell me that I was enough for him the way I was. That even if I have this condition for the rest of my life that he will still support me. I know I have to stop thinking about him and move on I'm just so angry.... I go to so much counselling - it's just not working. I'm so plagued by if only I had done things differently in my life maybe I wouldn't be dealing with this. Sad

leitheij

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Re: Constant disappointment at Doctor's office

Post  sailor_moon on Sun Oct 12, 2014 8:31 pm

Hmmm.... Have you seen a Uregynocologist?  Sounds like if it's the urethral area a Uregyno might be the way to go?

I totally get what you mean about this condition making you "not want to do anything". I feel the exact same way. Oral sex feels like a chore. I'm married and my husband is super supportive and understanding.  He has degenerative discs in his back as his own health issue so he knows what it's like being in constant discomfort.  His back is so bad he can't have sex all the time anyway. I have tried to push my husband away so many times because of this thing...but he keeps coming back, says he will never give up on me. He must really love me huh? I'm very lucky.

I can't really offer much advice in the Ex department. Sad the only thing I can say is try and focus on yourself, try and get yourself into the best frame of mind you possibily can. Make yourself and your health your first priority.

I went to a so-called vulva specialist who was supposedly one of the best in Australia. ..and she was useless. Had no idea n told me I needed antidepressants and councilling and shipped me out the door.


Don't give up. I myself will never give up. I believe somewhere,  the right doctor will know something. I will never give up because living in constant discomfort and misery is not my idea of living. I Can't and I won't live with this forever...or I'll die trying to rid myself of it. though it feels like it, this shit isn't caused by nothing, SOMETHING has to be causing it. It is just finding the cause that is the hard part.

Another thing is try to find a specialist who has travelled and practiced around the world. More experience than  your average Gyne. Different countries have different ways of doing things and have studied differently.

If you haven't tried a Uregynocologist,  that may be your next step? OR....A really goid naturopath who specialises in womens health?

Please hang in there. Lol mind you, easy for me to say all this, I'll probably get in to see this doctor today, and get no answer (as usual) and come out a crying mess.

DIV is usually treated with antibiotics. ..Doxycycline if I remember correctly.  Have they tried you on that?


Last edited by sailor_moon on Mon Oct 13, 2014 10:35 am; edited 1 time in total
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Re: Constant disappointment at Doctor's office

Post  leitheij on Mon Oct 13, 2014 12:38 am

Sailor_Moon -

Thank you for your words of encouragement and advice. I will look into going to a Urogynecologist. I think that's a good idea. I want to keep looking for answers, too. Everytime I feel my mood go down when I think about this I need to try and do something else to lift myself out of that funk.

I know I can't even think about dating for a long long time. It's just weird to think that a man would still want to date me when I can't have sex. Sad I'm happy that your husband is so understanding. It's encouraging to know that there are still decent guys out there that will love us anyway. Smile

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Re: Constant disappointment at Doctor's office

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