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» Please tell me this can get better
Today at 2:10 am by anon99

» Acupuncture advice please
Today at 12:00 am by Bx11

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

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: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


Reached a plateau...

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Reached a plateau...

Post  WaahwaahUK on Thu Jan 14, 2016 1:13 pm

Thought it was time to post an update on this ever quiet forum! Wink

I've been seeing an osteopath for several months now and I've definitely seen a slow and gradual decrease in my pain, with the odd flare up. I've got to generally being about a 2/10 on a good day, and 3 or 4/10 on a bad day. In the summer last year I was 7 fairly constant. 7 for me meant constant pain, real difficulty walking all the time, very little rest due to the pain, and generally a huge impact on my daily functioning. 2 or 3 now means I can walk with pain, but it's bearable. And I'm able to function with the pain. I don't ever want to see an 8 or above as that for me personally would be not being able to get up. I have quite a high pain threshold. So, I'm seeing improvements with physio more than anything else I've tried. I had to stop medication because of really awful side effects and no difference in the pain. I'm now scared as my osteopath said to me this week, I've reached a plateau. Which I have. I know. And I want to get beyond that and improve some more.... So I have more exercises now, and he's hoping to address it, but yeah I'm scared. What if this is as good as it gets?

Just felt like writing it down somewhere. If I can help anyone with advice on my particular journey so far, feel free to ask. If you look at my previous posts you can see how it started for me.

I do feel, pelvic floor issues are present for me and the physio is helping. I never realised a burning raw feeling down there could be nerve, muscle related!

Anyway, good luck to anyone reading this suffering.

WaahwaahUK

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Re: Reached a plateau...

Post  PainBlogger on Thu Jan 14, 2016 11:30 pm

I feel similarly: my unprovoked pain is a lot better than it was even a few months ago, but my pelvic floor muscles are still ridiculously tight. I've not seen the physio for a while, just been plodding on with exercises whilst the duloxetine kicked in. I'm going back in a few days though and hoping I can try something new. I think my nerves have calmed down a lot, but trying to do dilator exercises is triggering my pain and giving me cystitis-like burning.

I hope your additional exercises help. And writing stuff down is often helpful. Smile I'll update when I've had my next appointment.

PainBlogger

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Re: Reached a plateau...

Post  WaahwaahUK on Sat Jan 16, 2016 5:45 pm

Thanks for keeping in touch! Yes have some PNF stretching to do now. My osteopath said my hamstrings are really tight also which makes sense as I feel the vulva and labia pain on my left side when I stretch them. All seems linked. Had a bit of a flare today, 3 days after osteopath appointment which seems to happen for me. Hoping it settles tomorrow. I know I've come a long way pain wise, it's just hard to imagine if it will ever be 'normal' again in terms of not having this type of pain. I've always had back and pelvic issues but the additional gynae related pain is so depressing... However, I tell myself if I can see improvement then that surely means one day I could be out of this cycle! Lovely to hear from you again. Keep me posted!

WaahwaahUK

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Re: Reached a plateau...

Post  PainBlogger on Mon Jan 18, 2016 12:33 pm

Hi Waahwaah,

Well, the physio assessed my pelvic floor muscles (which was unpleasant but not as painful as I feared it was going to be considering the pain I've been getting with home exercises). It's mainly the superficial PFMs that are overly tight and causing me the problems. She checked to see if I was getting referred pain when she put pressure on various areas and it was predominantly localised in that I was feeling the pain where she was touching and not out in my hip or up in my bladder etc.

Despite the discomfort of the assessment, I did feel better after it. She suggested I do my exercises in the mornings instead of later in the day as the PFMs should be more relaxed in the morning. I've tried that and it has been easier since the appointment, so I've just got to persist at trying to get those superficial PFMs stretched out and less tense. It's a real 'two steps forward, one step back' process and such slow going, but what can I do but persist. I'm not giving up. Smile When I think how I was 18 months ago I am so much better, I just still have things that I can't do and that's incredibly frustrating. But I do believe (now!) that I will be able to do them again. It just may take a while...

I'm still doing external stretches as well for my adductors and buttocks (piriformis) and also this first exercise (as demonstrated in the video) on this page: http://www.pelvicpainrehab.com/pelvic-pain/2011/pelvic-pain-and-exercise-what-exercises-can-help-treat-my-pain/

The physio also suggested I try a breathing exercise call 4, 7, 8 breathing, so you may want to do a search for that and give it a go. It's a simple technique for reducing tension. In short: Empty lungs > breathe in for a count of 4 (not 4 seconds necessarily) > hold for count of 7 > breathe out for count of 8. I find on the breathing out I feel a bit desperate to breathe in again towards the end, but that's normal apparently. So, I'm going to practise this when I'm emptying my bladder and a couple of other times a day and see if it helps at all. The good thing with breathing exercises is they are side-effect free (unless maybe one has asthma or another respiratory issue).

It's definitely wise to keep on telling yourself that one day you can be free of the pain cycle. I thought very negatively for the first 6 months I had this problem and negative thinking does no good. I feel a lot better in myself since a) I changed my way of thinking (which wasn't easy and was gradual) and b) since I've worked out which treatments help me and which are best left alone.

I hope your latest flare is going now Smile

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Re: Reached a plateau...

Post  WaahwaahUK on Mon Jan 18, 2016 6:20 pm

Thanks so much for that info, I'm going to look into those things you mentioned! I know what you mean about it being a slow process. Tell me about it! I do feel its worthwhile though, as like you, when I think back to where I was say 6 months ago I know I've improved. Keep me posted! I've really struggled last fee days with new exercises. I think I overdid them. It was because hubby was helping and said he didn't think I was stretching that much but I said, I have to start off small and work my way up. Should have listened to my own advice really as sooooo sore today! So back to taking it gentle and listening to my body one step at a time.

WaahwaahUK

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Re: Reached a plateau...

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