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» I don't know what to do anymore
Yesterday at 5:21 pm by Aquaben

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

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: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

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Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Post  Tired89 on Tue Jul 04, 2017 9:01 am

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior which numbs my entrance completely. Without the ointment, insertion of anything would be impossible. I also use a compounded cream of 5% lidocaine, 5% baclofen, 5% gabapentin and 4% valium internally to try to relax the muscles. Recently, what has started happening is after therapy, or inserting my meds and after the blt ointment wears off, my vestibule starts to burn, itch, swell and throb worse than I've ever experienced and it last longer and gets worse after every time I insert anything. My therapist wants me to take a break from therapy and she's asked if I'd considered vestibulectomy. I am horrified of that word, let alone of trying the surgery. One thing that gave me hope was another procedure with a laser a woman on this forum had done that she had great success with. It's called cold laser therapy or low level laser therapy (LLLT). I messaged her, but i don't know if she visits the forum anymore and she posted about her procedure back in 2011. Has anyone else ever heard of this or tried it? I'd like to know where I could get it done or at least speak to a doctor about it. My physical therapist doesn't know anything about it and I can't seem to find out anything else about it other than articles and trials that discuss the success rate and how the procedure is non invasive and does not negatively alter or disfigure the vestibule like vestibulectomy can.
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Re: Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Post  mary jane on Wed Jul 05, 2017 5:34 pm

I wouldn't jump into doing surgery just yet, the cold laser therapy sounds very promising! I can recommend (well, half-heartedly since we all have different symptoms) Amitriptyline or Lyrica for painful intercourse, I take amitriptyline right now for general pain and I noticed I have stopped having painful intercourse as well (a bonus option) ..I take 50 mg right now...ah, it also helped me achieve some remission from painful intercourse for about a year in the past
I wish someone had an idea why we get these problems, I read a theory on central sensitization, but it's just a theory and not a diagnosis
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Re: Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Post  Tired89 on Wed Jul 05, 2017 5:54 pm

Hi Mary Jane. Thank you for your reply and suggestion. I'm always glad to see when someone has tried SOMETHING for this issue and has had success with relieving their pain. I've heard of amitriptyline many times now on the forum, but my doctor never suggested any meds to me besides the creams. I've heard between amitriptyline and nortriptyline, one is better? What side effects do you experience on it and do you have to take it for life? How long were you on it until you started seeing a decrease in your pain with penetration? I'm also curious about the drug Cymbalta. I've been reading up on it and apparently some have success with it for their pain as well as any depression this awful condition can cause. Have you heard of it or ever tried it? So far, I've tried vaginal estrogen (Vagifem, which made me gain boat loads of weight, lose my hair, and get horrid acne everywhere), hydrocortisone suppositories at another doctor's suggestion, clindamycin cream and birth control. I no longer see the doctors who suggested these "remedies," especially because not only did they not work, they made me feel terrible. I saw a pelvic surgeon who told me what this is and he gave me the script to do physical therapy. I only recently began considering surgery because I didn't want to have to be on meds for the rest of my life to control this problem. I'm not sure about the life long side effects and things like that.
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Re: Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

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