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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 …

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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


First internal physio session

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First internal physio session

Post  Kathy100 on Tue Dec 10, 2013 4:12 pm

Felt I had to share this with the only other people who would understand. So there I was yesterday - having my internal trigger points and knots eased out! The things we have to go through with this condition.... I was really nervous - my legs were shaking before she started but it was ok. She found my muscles were knotted up on both sides; the left worse than the right & pain at the 12 o'clock position. It hurt like hell when she released the trigger points but if it means an end to this whole nightmare I can do it. I could feel my muscles releasing which felt really good (worth the pain). She warned me I may have all sorts of flare ups this week. I was ok last night but today it hurts when I walk (spikey pain) but not when I'm sitting down. Normally it's the other way around....hopefully things will settle down - I've got another session next week.

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Re: First internal physio session

Post  meelie on Tue Dec 10, 2013 7:14 pm

Keep going, sounds good. It will help if it's muscles. Must give it time. Yes, it is horrible what we women have to do to get better. I still feel humiliated when I go and have her work on my muscles but it does seem to help. Problem is my deductible starts over in Jan. and I may not be able to afford it any more. This is something I must find out and decide. My biggest problem is that I just can't seem to relax and muscles somewhere on my body are always tensing, most especially in my pelvic area. Ugh! I don't know how relax and stay that way. Wasn't always that way, used to be so laid back, don't know if is age or the whole dang situation and now I am expecting pain all the time. Any suggestions on relaxing?

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Re: First internal physio session

Post  mary jane on Wed Dec 11, 2013 11:44 am

@ meelie, I have the same issues. Have you tried baclofen ??
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Re: First internal physio session

Post  Kathy100 on Wed Dec 11, 2013 3:42 pm

Hi Meelie, thanks for your support - it really helps to know there's someone else out there like me! I'm feeling much better today - the pain has gone at the moment apart from one or two small flares so fingers crossed! I'm like you relaxing is difficult now especially the pelvis.... I used to be able to relax fairly easily. I think it's this condition and everything that goes with it. I try doing deep breathing when I remember and to relax my shoulders & pelvis throughout the day. I do some very gentle pelvic floor stretches & pilates which calm me down too (as long as there's no pain). I listen to a mindfulness CD at night which gets me to sleep. I've just bought a relaxation CD from Amazon to try aswell. I hope you find a way round your deductible.

@mary-jane - I've heard of baclofen and it is used a muscle relaxant. I've never tried it - I don't want to take anymore meds yet if I can avoid it. Something to bear in mind though.

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Re: First internal physio session

Post  meelie on Thu Dec 12, 2013 2:50 am

No, I haven't tried baclofen, is there a another name I would know it by? my gyn gave me flexerile but my PT says it doesn't affect the pelvic floor muscles. I have had two good days so far this week. Missed my PT visit today due to a wreck on the freeway that tied up traffic so long that I missed my appointment altogether. Hope there is a cancellation on Friday so I can get in there. I really think it is helping. I do deep breathing. Have not tried pilates. I don't know any of those moves. I bought the book about pelvic pain by Laura someone, I don't have it right here for her last name. I need to get back to that. PT told me not to do any of them at first cause I was so tight but I'm going to as her about them next trip. What is the name of your relaxation music? I haven't thought of that. I am constantly catching myself tightening up in my buttocks and have to keep reminding my self to calm down. It is so ingrained after 2 1/2 years of sitting on right side to escape the pain of the left pelvic fx. It's so hard to unlearn something isn't it?

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Re: First internal physio session

Post  Kathy100 on Thu Dec 12, 2013 11:55 am

Yeah - really hard to unlearn things. Physio is definitely helping me too - today has been good so far. The pelvic floor stretches I do are from the Amy Stein book Ending Pelvic Pain. To start with I couldn't do some of them at all - they just caused me more pain but now they seem to help. I had some 1:1 pilates sessions - so the pilates I do is very gentle from that. I did go to a beginners class a couple of weeks back but that just caused me to flare up. The relaxation music is Yoga Nidra - Guided Deep Relaxation - it hasn't arrived yet so I don't know how good it is...but it's worth a try. I'll let you know. I'm the same constantly tightening buttocks, shoulders etc - always trying to remind self to relax....I use a donut cushion at work as most of the time I'm sitting down. Hope you get to PT Friday.

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physiotherapy

Post  topcat on Mon Feb 17, 2014 11:58 pm

Hi I will start physiotherapy March 10, 11, 17 cost is 140.00 per session. I will have to pay first then they'll bill Blue Cross. Just got done with having bladder surgery in Dec. for anterior prolapse. Women and our hysterectomies so long ago, but gravity does pull the bladder and other stuff if not corrected, or not having the reinforcement at the time of the hysterectomy. Just got done ordering from Aidanceskincare.com femmesil ultra and terasil original for my vulvar irritation. Has good reviews service is very knowledgeable.

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Re: First internal physio session

Post  jackie333 on Sat Mar 22, 2014 9:55 pm

I too had a first physio session and got through that but when she gave me exercises to do at home, my lower back went out so bad I had to go to my chiropractor the next day. I emailed the PT and she said I might have done the exercises incorrectly but even when she showed them to me, I could already feel pain in my lower back.
I see the Gyno this Tuesday and will ask her if I should continue with the PT. The other side of the coin was that my wonderful chiropractor--who I have been going to for about 17 years not only fixed my back that day but when I told him I had the lower pelvic area pain he said that MD's send him clients for help and I have to say that what he did really truly helped the back and vulvodynia pain--yipeeeeee!
Also, my Gyno has prescribed a compounded ointment- (3 ingredients) that is so expensive I'm going to ask her this week if it is really worth the price, that is,- are the results that impressive?
I will scrimp on just about anything to feel relief--

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Re: First internal physio session

Post  Guest on Fri Aug 22, 2014 11:31 pm

How are all you ladies progressing? Just started PT and i didnt get a ton of amswers, but im practicing the stretches and massage anyway. Im looking for success stories of women who have hard sore pelvic muscles and inflamed vulvas like me. By success i mean even a little improvement. Thanks ladies!

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Re: First internal physio session

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