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» 7 months since the diagnosis
It feels like I’m going to have pain forever   EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
It feels like I’m going to have pain forever   EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
It feels like I’m going to have pain forever   EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
It feels like I’m going to have pain forever   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 like I’m going to have pain forever   EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
It feels like I’m going to have pain forever   EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
It feels like I’m going to have pain forever   EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
It feels like I’m going to have pain forever   EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
It feels like I’m going to have pain forever   EmptyMon Apr 08, 2019 7:54 am by Jo44

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 like I’m going to have pain forever

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Post  dunkelma on Mon Jul 16, 2018 9:36 am

Hi, Everybody,
I am 32 year old engaged woman. My fiancé is absolutely wonderful. The problem is that sex is incredibly painful. I have gone through great lengths to try to make it pleasurable. I did dilator work and went to a physical therapist for over a year and a half. It just doesn’t feel good. At least, intercourse doesn’t feel good. Foreplay is great! It has come to the point where my fiancé and I don’t have intercourse anymore because, frankly, I don’t really like it. He’s a good sport about it, but I feel like I’m less of a woman for not engaging in this primal activity that everyone else I know can do so easily and without pain (or so it seems). I’ve been trying to convince myself that it’s ‘not that big of a deal’ but secretly it bothers me. Does anyone have any suggestions or positive affirmations?!

Thank you,
Dunkelma

dunkelma

Posts : 3
Join date : 2018-01-02

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It feels like I’m going to have pain forever   Empty It can get better :)

Post  mhhh on Mon Jul 16, 2018 12:11 pm

Hello dunkelma,

I know exactly what you are going through. You feel less feminine and kind of jealous that any other girl can enjoy a healthy sexual life and that you are somehow dysfunctional! I used to cry alot after having sex with my husband (been only married for a year and 3 months, I was a virgin before that). So all my wedded sex life expectations and excitement went down the drain. BUUUUT, things have gotten soooo much better (I'll let you know about my treatments shortly).

First, you have to know that you are not the only one in this. Based on the internet community (of those who actually post about it), there is such a huge number of ladies in pain like us. Yet, we are so embarrassed to talk about it with friends or family that we feel alone in this. But my gyno assured me that it is more common than I thought and that many women, even those not diagnosed with vulvodynia, have painful intercourse at different times. But we all like to pretend that everything is okay and many ladies lie about it in fear of feeling alone on this or being judged by others. Second, movies and series put up such false realities like couples just having sex without any foreplay like it is so simple and pain free. THAT IS FALSE, most of the time. They make us expect it to be great, but it is not how it works. In fact, my NORMAL lady friends need to take their time in foreplay and use lube to avoid painful intercourse (and they do not even have any conditions like us!). So it's okay if we have to take the extra stretch and thats totally normal. Third, life is not about sex. Yes, sex is meant to be nice and pleasurable, but it is not the end of the world if it isn't. It took me half of my first year of marriage to understand that, although my husband constantly assured me that sex is the last thing he cares about in our marriage and he is a great support system in all this. So please do not get fixated on your sexual life, there are many other things that can be enjoyed and that can make life beautiful without even sex. Fourth, there's always hope for things to get better and things to try to improve it. It might not completely go away, but any small improvement is greatly celebrated! Finally, you well get used to its idea and it will no longer bother you like it did before. Things do get better in time, especially the psychological and emotional part involved in this affliction. I no longer cry or obsess about it, even if I still get some painful days, I just shrug it off and accept things the way they are while hoping to get better.

Sorry for the long post, but your mental state about all this plays a major part by not letting vulvodynia affect your daily life and Happiness. It used to bring me down and I felt so frustrated, but now I am so free of all that unhealthy emotional state and I feel great like any normal person despite what we have.

So for the treatments, I tried antidepressants (not for my mood but it was meant to reduce the pain), I tried Xylocain (numbing creams), and was prescribed Estrogen cream (which I bought but decided not to use), etc. They worked temporarily but the pain resurfaced. What I have found to be a beautiful natural remedy was the application of pure bee honey directly on my vulva and a bit inside my vagina. I apply it directly after my period (when I flare up like hell) for the next 5 days or so. Each day I would place like half a teaspoon of honey on my vulva and vaginal opening and a bit inside and lift my legs up while lying on my back for 30 mins to avoid it dripping and letting the honey seep more into the vagina. I do this for 5 days. Then throughout the month (up until my next period starts), I would only apply it like 1 or 2 times a week incase I feel some irritation. 6 months doing this and my pain has decreased by 80%, and sex has been amazing and we do it so much more often and I can get orgasms and try different positions. There might be some litttttle pain and adjusting positions can help find a pain free one. And given how painful it was before, any little pain can be easily ignored Smile AND PLEASE RELAX BEFORE PENETRATION otherwise it will tighten your opening and vaginal canal making it painful. You will learn to relax eventually so take your time and do not rush your healing process Smile

If you need anything or just wana talk about it, I am here to help you get through this.

mhhh

Posts : 4
Join date : 2017-11-26

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It feels like I’m going to have pain forever   Empty Re: It feels like I’m going to have pain forever

Post  Guest on Sat Jul 28, 2018 6:19 am


Ladies!!!
I am trying to get the word OUT!!! 20 years of “vulvadynia”, ic, vestibulitis. Whatever the docs want to calll it. It’s been beyond depressing and has made me feel downright crazy at times. Incredibly painful, living in silent pain, going to doctor after doctor just to hear that “my mind is causing my vestibular area to flare up”.
PLEASE INSIST ON GETTING TESTED FOR A MICROORGANISM BACTERIA CALLED UREAPLASMA!!!!!!!!!!!!!!!!!
It’s a VERY hard bacteria to find!! Does NOT show up in urine cultures!! There’s a very specific test to find it and you MUST insist on being tested!!!! PLEASE BELIEVE ME!!! After 20 years of this craziness I FINALLY was diagnosed with this bacterial uti and THIS is what has caused the vulvadynia!!!
Doctors don’t even know about this. My new primary care tested me after showing up with a Walgreens uti rest showing positive leukocytes. The urine culture came back negative as usual. She had a sad talk with me about vulvadynia.
I don’t know what came over her to send the urine off to a lab and get it checked for ureaplasma, but she did. I am SO grateful. I am FINALLY HEALING quickly!!
Ueraplasma only responds to certain antibiotics. I’m on doxycycline. 14 days and it may take several rounds. This is a serious bacteria and it can kill you.
Some doctors will dismiss this test and bacteria and say it’s part of our flora. NO-INSIST. If it shows up as an infection because it’s colonized, it IS the cause of vulvadynia.
GET TO THE BOTTOM OF THIS VULVADYNIA LADIES!!! DO NOT BACK DOWN!! FIND A DOC WHO WILL TEST YOU for UREAPLASMA!!! DO NOT WASTE 20 YEARS OF YOUR LIFE GOING THROUGH THIS HELL LIKE I DID.
I’ve been through biofeedback, neurontin, creams, specialist after specialist.
I’ve found small handful of other ladies on the internet who have posted the SAME about their ureaplasma diagnosis. They are doing cartwheels like I am!!!
I am really trying to get to word out!!! I promise you ladies!!!! There is a CURE!!!
DO NOT GIVE UP!!!!!

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