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» New here would very much appreciate advice at the end of my rope
Fri Jan 11, 2019 1:46 am by Jma990o

» Diagnosed Recently
Tue Jan 08, 2019 3:55 pm by flissyg

» Looking for suggestions or encouragement
Thu Jan 03, 2019 11:09 am by Gaby

» Clinical Trial for Vulvodynia Treatment
Wed Dec 19, 2018 7:13 pm by wramirez

» New and need advice and help
Thu Dec 13, 2018 9:48 am by Derry59

» Things that have worked for me
Tue Dec 11, 2018 11:32 am by Amethyst

» Found relief after more than 15 years of pain!
Tue Dec 11, 2018 11:17 am by Amethyst

» I'm new to this forum and would love some advice! :)
Tue Dec 11, 2018 3:06 am by Cin124

» I think I know what causes vulvodynia-it's the memory of pain
Sat Dec 08, 2018 1:24 pm by foxysugarpants

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: 2

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: 0

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 6

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: 4

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: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0

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 …

Comments: 3

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


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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