Vulvodynia Support
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» Hope to all my suffering ladies
New to sudden yelps and hops in public... EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New to sudden yelps and hops in public... EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New to sudden yelps and hops in public... EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New to sudden yelps and hops in public... EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New to sudden yelps and hops in public... EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New to sudden yelps and hops in public... EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New to sudden yelps and hops in public... EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New to sudden yelps and hops in public... 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!
New to sudden yelps and hops in public... 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


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Post  Tinabeauxbina Thu Jan 26, 2012 10:10 am

Pain started in Dec 2011 and I've had it off and on since. Amazing. Who knew what surprizes were in store for so many unsuspecting women. It's my left labia that's affected. The painful area is about the size of a quarter, and there are two things that I do for it when the pain (cigarette burn/razor cut) hits; I am VERY careful with my personal hygiene (wiping/washing) and I use good ol' vaseline to cut down on any friction. I was horrified to read that the painful area can actually increase in size for some sufferers. Besides the pain I find it annoying to be so aware of my vulva all day and into the night for weeks at a time. It's like having a monkey on my head, constantly pulling my hair! Don't get me wrong, I like my vulva, I just don't want to have it on my mind like a bad dye job. Anyone wonder if vulvodynia might be somehow connected to sexual abuse or incest? Just wondering...Tinabeauxbina

Tinabeauxbina

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Join date : 2012-01-25
Location : Indianapolis, IN (USA)

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Post  mmorgan Thu Jan 26, 2012 4:45 pm

There are some "theory's" as to a link with sexual abuse, that the pelvic floor tightens. Have you got your pelvic floor checked?
mmorgan
mmorgan

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Post  Tinabeauxbina Fri Jan 27, 2012 2:41 am

Pelvic floor...loose or tight...my Doc says mine is loose. And thanks for answering! Smile

Tinabeauxbina

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Post  lolainslacks Fri Jan 27, 2012 11:22 am

There is a theory that sexual abuse can rewire the brain, so that the nerve centre (the part that deals with pain) no longer works correctly. You associate the general vaginal area with pain and trauma, so the brain tells the nerves they are in pain when they shouldn't be. I personally believe this to be true. Obviously not for all women, because there are a million different causes, but for some I think this is accurate.

lolainslacks

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Post  Tinabeauxbina Fri Jan 27, 2012 8:02 pm

Well, this theory certainly explains why merely wiping myself with toilet paper feels identical to the sensation of my father grinding his whiskery saturday chin into my three year old vulva. It also explains why I can tolerate such extremely painful sensations with a kind of grin and bear it attitude, since I learned how to do so at a very early age. Incest is the gift that keeps on giving. Yes, there are a million different causes for vulvodynia, but for me the links to sexual abuse speak the loudest. Some of the women on this forum have written about having painful vulvas since childhood and that their daughters are experiencing vulva pain at a very young age; I hope for the best, but have to wonder about sexual abuses ugly head rising in their lives. I thank you very much for sharing this with me, Lolainslacks. I consider you to be a friend. sincerely, Tinabeauxbina

Tinabeauxbina

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Post  lolainslacks Fri Jan 27, 2012 9:50 pm

Aw, you're so welcome! I think it's the cause of mine, which sucks, because it's like, when you've suffered abuse you already have a ton to deal with emotionally, but on top of that sex continues to be traumatic because of the pain. I've read dozens of theories but none of the suggestions that work for others (such as cutting out certain foods, stopping use of chemicals, or going to physiotherapy, etc) have helped me at all. And my pain is only on contact, mostly internally. Like you said, this theory is the one that jumps out at me. I've read quite a lot about it and it seems really applicable.

I'm sorry to hear that you also had to endure something so awful.

lolainslacks

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Post  Tinabeauxbina Fri Jan 27, 2012 11:03 pm

I'm sorry you experienced sexual abuse, too. I read about the different treatments and surgeries for vulvodynia, and the thought of surgery makes my hair stand straight up. It's beyond my strength to allow anyone near my vulva with their hands and knives and eyes...I'm a total control freak about my body; even taking care of it with a normal pelvic and pap is a mental and emotional wrestling match. My Doc is a female and understands how I feel, but she doesn't cut me any slack and insists that I can and will have yearly exams, and so I do. But, man, it's tough! It's like I have to put medical care into a compartment all on its own to be able to handle it at all. That's why vaseline and toughing out the pain are my treatments of choice since I can do it on my own and feel some control. Pain is an old familiar friend, after all. You have opened my eyes to the fact that internal vaginal pain is not a normal experience. I have always had painful sex; it's the vulva pain that's new.

Tinabeauxbina

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Location : Indianapolis, IN (USA)

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Post  lolainslacks Sat Jan 28, 2012 12:14 am

I totally understand that, medical examinations are a nightmare for me too. I am not sexually active, and have never been because the pain has always been so bad that sex has never been possible, so I have never had a pap smear, but any other check-up is horrible. Physio was so hard for me because I too am terrible at letting anyone near that part of me.

I have only very recently started talking about my abuse. Before a month or so ago I had never ever told anyone, even online, because I just didn't want to think about it, so it's still difficult for me to talk about in person. Which means that I haven't been able to tell any of my doctors. They know about my pain so they are careful with me, but I suppose they would be more understanding of my reluctance to be touched if I told them everything. Maybe one day.

Have you tried using a lidocaine gel/ointment? I use it and it is an absolute miracle product for me because it removes ALL of my pain. When I apply it before using dilators, I can use all of the dilators, even the biggest ones, which means that in the future, pain-free sex might be possible. It's great because you apply it yourself like the vaseline, meaning you can go at your own pace and no-one else has to be involved.

lolainslacks

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Post  Tinabeauxbina Sat Jan 28, 2012 6:19 am

Lidocaine gel/ointment...it does sound like it could be a workable solution. I never thought of it as usable on mucus membranes however, because of the possible absorbtion of too much lidocaine: is it safe? It has a big warning about absorbtion; how much and how often can it be used? How long does the pain easing effect last? Is it a new product? Did your Doc give you a prescription for it? Does it cost much? Do you have a male or female Doc?

If I may ask, are you in therapy for the abuse? Therapy helped me a lot, especially with communication. For me, the hard part about therapy wasn't remembering and talking about the actual abuse itself. For me, the hard part was clearly looking with open eyes at just what damage had been done to my life, how pervasive sexual abuse is and how far reaching into my mind, body and spirit the damage is. Amazing. I've been sexually active since I was three. Kinda early, if you ask me, but nobody bothered to ask, least of all my father. I'm not sexually active now, either, and discomfort certainly has a part in it.

Question Dilators? Question

I'm open to talk about any subject, but I'm also respectful of other peoples limits; if you do not care to discuss a subject let me know and I will respect your request without questions and without judgement, ok? Other peoples lives are none of my business unless they want to share. silent

Tinabeauxbina

Posts : 6
Join date : 2012-01-25
Location : Indianapolis, IN (USA)

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Post  lolainslacks Sat Jan 28, 2012 8:59 pm

I don't mind sharing here. It's fine for me, because we're not face to face, and we are all here for intimate pain so I trust you guys. I'm comfortable talking about anything with you all.

I'm not currently in therapy. My local rape crisis centre offers free counselling for anyone who has been abused, and I went to one session a few weeks ago. It was arranged that I would go back weekly for as long as I need, but I haven't been back since. It was really great, the therapist was lovely and it was all fine. But I just felt overwhelmed. I have never spoken about it out loud in detail before, and I think in the first session I was in such a rush to just get it all out that I said too much too fast, and afterwards felt really weird and uncomfortable. I plan to go back in a while, when I'm ready. But right now I don't feel like I can talk about it face to face with anyone.

Dilators, yes, I use them sometimes. They look like this -- http://www.soulsourceenterprises.com/images/ordering/orderpic_sm.jpg

You just lubricate them, then insert the smallest one, and sit with it there inside you for a while breathing deeply and trying to relax. Then once you're comfortable with it and it doesn't hurt, you move on to the next one, gradually getting bigger over a long period of time. They are used to allow the body to get used to penetration, and primarily they help women who have problems with muscle tension as a result of expecting pain. They start out as small as your pinky-finger, and get to about as large as the average male. I have been using them for about a year. I was told to use them back when my doctor thought my problem was 'all in my head'. I don't have problems with muscle tension anymore, and I use them only very occaisionally now, just to keep my body used to the feeling so that when I do start having sex, it's not too much of a struggle.

The lidocaine is amazing, but I use a very specific type that I think might only be available in the UK. It's called 'Instillagel'. I get it prescribed. I have to use this as opposed to the actual lidocaine ointment, because that stuff is no longer available where I live. Instillagel is a similar type of thing, just a numbing gel that is mostly used by doctors before catheterisation. My gyn gave it to me originally, and many women in the UK with vulvodnia are being given it to use, so I'm sure it's safe. You should ask your doctor about it, or about any other kind of lidocaine ointment. She will be able to answer all of your questions. I have been using HUGE amounts of the gel for months and months now, with no problems. Unfortunately, some women so react badly to it, but it all depends on the individual.

I apply it, then wait five minutes, and then my pain is gone. I am pain free for around two/three hours. I really recommend giving it a try.

lolainslacks

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