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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

» IMPORTANT FOR UK SUFFERERS
Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6


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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