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Anyone have pain with urination?

Tue Oct 16, 2018 7:35 am 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

Sat Sep 01, 2018 5:51 pm 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 3:45 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

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 2:46 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: 2

6 year sufferer but I’ve found some hope

Tue Oct 09, 2018 6:33 pm 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 …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 3:55 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 7:31 am 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 6:52 am 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! :)

Mon Jun 04, 2018 9:13 pm 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


First internal physio session

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First internal physio session

Post  Kathy100 on Tue Dec 10, 2013 8:12 am

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 11:14 am

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 3:44 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 7:42 am

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 Wed Dec 11, 2013 6:50 pm

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 3:55 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 3:58 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 2:55 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 4:31 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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