Log in

I forgot my password

Latest topics
» I don't know what to do anymore
Yesterday at 5:21 pm by Aquaben

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


Reached a plateau...

Go down

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

Posts : 117
Join date : 2015-07-31

View user profile

Back to top Go down

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

Posts : 219
Join date : 2015-07-27

View user profile

Back to top Go down

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

Posts : 117
Join date : 2015-07-31

View user profile

Back to top Go down

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

PainBlogger

Posts : 219
Join date : 2015-07-27

View user profile

Back to top Go down

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

Posts : 117
Join date : 2015-07-31

View user profile

Back to top Go down

Re: Reached a plateau...

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum