Vulvodynia Support
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» Hope to all my suffering ladies
It feels so good to get this off my chest.... EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
It feels so good to get this off my chest.... EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
It feels so good to get this off my chest.... EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
It feels so good to get this off my chest.... EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
It feels so good to get this off my chest.... EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
It feels so good to get this off my chest.... EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
It feels so good to get this off my chest.... EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
It feels so good to get this off my chest.... EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
It feels so good to get this off my chest.... EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

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


It feels so good to get this off my chest....

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Post  mypalal8907 Thu Jan 03, 2013 6:52 am

I've known the name for my condition for a year and a half now, but I've had it since always. At least that's what it feels like. When my doctor asked me to think back on when I first noticed the pain, I realized it was when I first tried to use a tampon. I don't know when the symptoms really began though because I didn't try to use a tampon until I was about 15 or 16. (It wasn't until my doctor told me all the symptoms that I realized that tight pants and sitting wrong also caused pain. I don't know why I thought random, searing, but brief pain in vagina was normal, but I did.) Anyways, my mom figured that I was too young for tampons. I started my period when I was 10 and I never put anything in my vagina to notice if there was pain before I tried to use a tampon. It was so embarrassing when I tried to use them the first time. It hurt and my mom figured that I couldn't put it in right so she helped me. It still didn't work. My dad would get upset because I wouldn't swim in our pool with the family during my period. He actually told me one time that I just needed to "shove it up there". Those were his exact words. I asked my mom if it could be that I hadn't had sex yet and was maybe smaller than average down there. She agreed with me and we both assumed it would get better if I tried to use tampons more and if and when I eventually had sex. I couldn't keep using tampons because if putting them in was painful, and after a period of time they would start to burn, the pain of taking them out was terrible so I just stopped using them. I went to college not using tampons. I couldn't even use the extra small light ones. My friends didn't understand no matter how I tried to explain it to them. They thought I was just weird and that it was gross that I used pads. I started doing more stuff with guys eventually which is when I began to notice that fingering hurt. Those were some conversations!!! I was already told by so many people that a girl's first time having sex would most likely hurt, that I became utterly scared of sex. I still am. I mean I figured if fingering and tampons hurt that sex would only be worse. However, I had this lingering hope that maybe once I finally had sex things would sort themselves out down there. That my vagina might stretch out a bit and the pain would go away and I could have a normal sex life. The summer right after I turned 22, I had a brief fling with this guy. We didn't have sex but when he tried to finger me I had to stop him as per usual. As I didn't know yet what was wrong down there, I explained to him as best I could why he couldn't do that. He was pretty understanding. Then I went to Europe for a few weeks and he moved away. When I came back I decided that I was tired of not being able to go further and that I wanted to have sex. I've never had a boyfriend and my experiences with guys have been limited to mostly drunken encounters. These drunken encounters were getting more serious the more sexually frustrated I became and I was worried that I'd end up drunkenly having sex one night and I was yet to be on birth control. I'd been on it once before but it messed with my emotions and since I wasn't having sex I got off it. Well, now I wanted to be protected just in case and my period pains were usually pretty bad, not to mention my periods were just plain irregular. So, I went to my doctor. She prescribed birth control and asked if I had any questions. I told her about not being able to use tampons and having pain when fingered. She said she wanted to do something called the q-tip test. This is how she diagnosed me with vulvodynia, which she also told me is a fairly broad term. She lightly, and I mean lightly, touched the opening of my vulva and it burned. But, the weird part is that I've never had any physical kind of trauma there, which she thought at first could be the cause. She thought maybe it could be emotional but I don't know. When I was little kids were mean to me about sex stuff I guess, I developed faster than everyone else in my grade and my sex drive is shamed by the religion I used to prescribe to. I no longer do, the feminist in me won't allow it. Maybe the physical pain is a manifestation of the shame I've been made to feel for most of my life concerning my sex drive and now that it's physical just mentally undoing the damage is no longer enough. But, I don't know. I just want to understand this. I want to understand why I just can't be normal. I'm 23 now and I have self-sabotaged so many potential relationships since I've found out because I don't want to have the sex talk. The weird thing is that I still have drunken hook-ups sans sex and drunkenly tell strangers that we can't have sex and why. I was in physical and mental therapy while it was free at school (well practically) and I seemed to be making progress. Now that I'm home and struggling to find a job, my dad won't allow me to use our insurance for either of these things because it's a bank of money not a copay system. I have the dilators my physical therapist gave me and special lubricant she recommended. But, I can't get myself to use them. I'm scared of them. I'm scared because I live at home and have no real privacy. I'm scared because I think I'll hurt myself and make it worse. But, most of all I think I'm scared of sex and what it'll mean to get better. I've been this way for so long that I'm scared of changing. I'm scared of my own sexuality and I hate myself for that. I know that I have to want to get better and a good part of me wants to get better. Yet, there is that small, dark part of me that is just straight scared.


Last edited by mypalal8907 on Thu Jan 03, 2013 6:56 am; edited 1 time in total (Reason for editing : grammar)

mypalal8907

Posts : 3
Join date : 2013-01-03
Age : 34
Location : Ohio, United States

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Post  Alana3 Thu Jan 03, 2013 2:12 pm

I think it's normal that you're scared, I am too, and sex can be enjoyable for me. Or it was. I just had the surgery. I think that you need to take a deep breath go to a gyno and figure out a treatment option for your pain. Trust me there are several, but it's quite hit or miss. I couldn't take it anymore so I opted for surgery. All of what you're feeling is normal for people with our condition, so don't discredit yourself. Sucky but true.

I too am scared of having a boyfriend and having that "talk". But I think trying is better than not. I'm told not all guys are idiots. Have you done anything to help your vulvodynia besides physical therapy? Medications, chiropractor, or acupuncture? It can help too. Where are you living? What treatments have you tried? Just know you aren't alone in this, and where it's shitty there are some things that can be done Smile

Alana3

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Join date : 2012-09-25

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Post  mypalal8907 Thu Jan 03, 2013 8:21 pm

Thanks for the support. I live in the United States in Ohio. When I was in college, my mom was able to hide my trips to physical therapy showing up on the insurance from my dad. I wanted to try other things but cost is a big issue right now and I don't really have anyone to turn to for that kind of support at this point. I went to another doctor specializing in vulvodynia here and he prescribed me lidocaine to be used with the dilators because I don't have constant pain, only when things touch it with the exception of occasional spasms and sensitivity around my period. So that is helpful but not exactly because I'm afraid of and uncomfortable with the dilators on my own. Also, with the physical therapist, she would work that whole area including my stomach, legs, and lower back. I also discovered that talking to a psychologist about other issues worked well with the physical stuff, but again cost is an issue there too. My physical therapist thought their might be a link between me holding stress and tension and the vulvodynia. But I'm willing to look at other options and reexamine costs, I've been hearing a lot about biofeedback but I don't know what that is. Do you or anyone was have information on this or links to information?

mypalal8907

Posts : 3
Join date : 2013-01-03
Age : 34
Location : Ohio, United States

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Post  Alana3 Thu Jan 03, 2013 9:07 pm

Oh Ohio! I went to school in KY, live in Florida and am obsessed with the Buckeyes. Smile Ok that being said... Why is your dad so against this? I don't really know that I'm aware of biofeedback. I did physical therapy, tried every medication under the sun, and finally did the surgery a month ago yesterday. If it's provoked localized surgery may be an option for you too, it's a long recovery and I'm bored but I heard its worth it. So far it's just long and I want to workout lol... I was never given dilators, but I can imagine that it's pshycohologically intimidating. I don't really know what to tell you, but you def aren't alone in this, I promise! How about acupuncture or massage would your dad be ok with that?

Alana3

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Post  juleps Tue May 07, 2013 7:38 pm

i just read your part and realized i also had always problems with tampons.
is it possible there is an anatomic reason?
i mean it seems not normal to have so early on such issues no?
i for example still have a bit of my hymen leftover. i never thought it might be an issue but it seems weird to have problems of such a young age on? (like me too)

juleps

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