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» Dating with Vulvodynia and Vaginismus advice
Sun Mar 17, 2019 4:46 pm by Lemonade_lemons

» Lyrica has been classed as a Class C drug in UK
Mon Mar 11, 2019 9:20 pm by mary jane

» Long Time No Talk... What's been going on with my V pain the past few years...
Mon Mar 11, 2019 9:15 pm by mary jane

» An absolute success story- please read!
Fri Mar 08, 2019 10:57 pm by Persevere1990

» I'm sorry im rambling
Fri Mar 08, 2019 7:34 pm by scrumptuous

» New member need advice please
Fri Mar 08, 2019 7:11 pm by scrumptuous

» MonaLisa Touch
Fri Mar 08, 2019 4:46 pm by rl2091

» Diagnosed Recently
Thu Feb 14, 2019 6:35 pm by davesjen

» New and need advice and help
Wed Feb 13, 2019 12:42 pm by feeling desperate

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3

New member desperate need of other vulvadynia sufferers

Fri Feb 08, 2019 6:55 pm by Tfc13

Hi there hope some1 reading this is going through the same shit as me!, I'm new to this so don't really know where to start , I'm Teresa , I've just been diagnosed with vestibular vulvadynia , after countless appointments with GPS being misdiagnosed, tested for god knows everything , eventually under my gynochologist ,who done all her necessary tests, I now have been given a diagnosis I'm in …

Comments: 5

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: 7


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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