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» Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia
Yesterday at 8:15 pm by WVR00

» What helped (and practically cured) my Vulvodynia
Yesterday at 4:43 pm by Katiej

» How I cured my Vulvodynia!
Yesterday at 8:24 am by Katiej

» Amitriptyline given for vulvodyina pain
Sat Nov 18, 2017 11:33 pm by WVR00

» Needing some reassurance
Sat Nov 18, 2017 12:28 pm by Katiej

» Amitriptyline Success and new-found love
Sat Nov 18, 2017 12:24 pm by Katiej

» New diagnosis, any advice whilst I wait for a specialist
Sat Nov 18, 2017 3:57 am by jungleclover

» Vestibulectomy today and no pain
Fri Nov 17, 2017 3:28 pm by Dsrt16

» vestibulectomy success
Thu Nov 16, 2017 12:41 am by Hopeitworks

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

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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 …

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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Four months of significant improvement

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Four months of significant improvement

Post  PainBlogger on Wed May 18, 2016 10:13 pm

In the hope that it will provide some encouragement to others, I thought I'd post about my current situation, recapping on how I've got from where I was a couple of years ago to now.

My problems started when I got a UTI and thrush at the same time two years ago. I'd never had thrush before and UTIs only rarely. Despite antibiotics and antifungals (oral and topical) soon clearing the infections, I was left with vulval burning (and some redness), urethral and bladder pain, and horribly tight pelvic floor muscles. Any kind of sexual activity was problematic. After six months or so of trying to muddle through despite pain (I played down the pain to my husband - it wasn't as if he was pressuring me) we decided to stop trying as it was making the problem worse. I couldn't sit on hard chairs or wear jeans or any fitting clothes. Even walking would sometimes set off a flare and prove difficult.

Several different steroid/antifungal/antibiotic creams were prescribed to me. If anything, they just increased my vulval pain. The GP referred me to a gynaecologist who prescribed lidocaine 5% ointment. It burned so badly that I couldn't use it. I tried lidocaine 2% gel (Instillagel). That didn't increase my burning and helped a bit. I used it at night for eight weeks on a piece of cotton wool pad. The idea was to break the pain cycle, but I was still getting up to 6/10 pain some days and chronic daily burning.

I cut out fragranced bathing products, washing detergent, sanitary products and stuck to white cotton underwear. I tried a low oxalate diet (admittedly not strictly) but that didn't seem to help. I did find a benefit in cutting out caffeinated drinks, tea, coffee, citrus juices, and carbonated drinks. I drink about 3 to 4 litres a day of water or herbal (not fruit) tea. If I have a day where I drink less then I notice an increase in pain.

I was already on two of the typical drugs prescribed for vulvodynia - amitriptyline and pregabalin - before I had vulvodynia as I have chronic pain elsewhere in my body. Increasing the amitriptyline (then switching to nortriptyline due to side effects) didn't help my vulval/urethral pain. I got up to 30mg then had to stop because I just couldn't tolerate it. Then I started on duloxetine last summer. That has made a big difference and I've had no side effects except good ones (more energy, improved mood).

As well as medication I've been having acupuncture and physio/physical therapy. The physio/PT has involved various stretches and dilator exercises to reduce tension in my pelvic floor muscles. For over a year I was getting nowhere with the dilators really. I'd get up to the second one and then have a flare up and be struggling with the smallest one again. But over the last few months I've slowly but surely seen real progress. I can wear jeans again. I can sit for longer on hard chairs. It's taken a lot of patience and persistence, but, coupled with my unprovoked pain being markedly improved (it's been over four months now since my pain has gone above about a 3/10 and most days it's averaging 1/10 which means no pain a lot of the day), I've been able to get up to using the fourth dilator out of five with no pain.

I was starting to feel that progress had slowed because a) that low level pain persists with some flares triggered by bladder emptying on occasion and b) I wasn't feeling ready to try using the largest dilator despite using the fourth one for about six weeks now. But during this week, for the first time in nearly two years, I've had pain-free sex. Whether that will continue without any setbacks remains to be seen; I'm not going to stop the exercises any time soon. But it's a big milestone.

I know I've been very lucky in a lot of ways. I have a very patient and supportive husband. Even at my lowest point, I never had any doubts that he would leave me, and I know others may not be so fortunate. So at least I didn't have that stress to deal with. I've been able to pay for some private treatment that I'd not have got on the NHS and perhaps not on medical insurance either. But then I've not exactly been spending money going out partying or on holidays... The pain, at its worst, has certainly taken an emotional toll on me (and my husband) though. I've had days of absolute despair and that's no fun to live with.

Reading about mindfulness has been helpful. 'Mindfulness for Health' (Burch/Penman) is a book well worth getting hold of. 'Heal Pelvic Pain' (Amy Stein) is also useful.

I hope reading this provides some encouragement to those feeling that this condition is never ending. People do get better. 'Chronic' does not necessarily mean 'permanent'. I'm really not a naturally optimistic person, but I am stubborn. Stubbornness pays with this condition. Be stubborn and don't give up hope.

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Re: Four months of significant improvement

Post  emalita on Thu May 19, 2016 12:24 am

PainBlogger wrote:'Chronic' does not necessarily mean 'permanent'. I'm really not a naturally optimistic person, but I am stubborn. Stubbornness pays with this condition. Be stubborn and don't give up hope.

I love this part of what you said! Thank you for the uplifting message. I'm so thrilled to hear that you've gotten to a better place  Very Happy

I hope you still will come to this site from time to time to keep helping others. It's hard sometimes when all those who have made progress never come back and remind everyone that there is hope.

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Re: Four months of significant improvement

Post  PainBlogger on Thu May 19, 2016 8:20 am

emalita wrote:
PainBlogger wrote:'Chronic' does not necessarily mean 'permanent'. I'm really not a naturally optimistic person, but I am stubborn. Stubbornness pays with this condition. Be stubborn and don't give up hope.

I love this part of what you said! Thank you for the uplifting message. I'm so thrilled to hear that you've gotten to a better place  Very Happy

I hope you still will come to this site from time to time to keep helping others. It's hard sometimes when all those who have made progress never come back and remind everyone that there is hope.

I definitely feel like I'm 'not out of the woods' yet, so I will still be visiting this site regularly.

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Re: Four months of significant improvement

Post  WaahwaahUK on Thu May 19, 2016 8:43 pm

PainBlogger wrote:
'Chronic' does not necessarily mean 'permanent'. I'm really not a naturally optimistic person, but I am stubborn. Stubbornness pays with this condition. Be stubborn and don't give up hope.


Yes! I can't begin to tell you how much your posts give me hope. Wishing you continued progress, and please keep in touch with us here.

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Re: Four months of significant improvement

Post  PainBlogger on Thu Jun 16, 2016 1:46 pm

As it's been about a month since my last update, I thought I'd post again about my progress in the hope that it's encouraging to others.
Out of the last 30 days, my maximum pain has only been 1/10 on 25 of those days. I've been pain free a lot of the time. I had one day where it went up to a 2/10 a couple of weeks ago. The last couple of days and today it's more like a 3/10, spiking after I empty my bladder. BUT, I'm confident this 3/10 flare will soon pass and hopefully I can have a good run of 1/10 or pain-free days again. By looking back at my pain diary I have evidence to encourage myself that that will happen. I try to be conscious of my pelvic floor muscles and make sure they don't seem to be tightening up by breathing deeply.

Last time I posted that I'd been able to have pain-free sex again for the first time in two years and that I was hoping that would continue. Thankfully, that is still the case at the moment. There doesn't seem to be any link between my worse pain days and intercourse. Obviously I wouldn't try to have sex at times when I have pain to start with and we do have to be a bit careful and would stop at the slightest hint of pain. Emptying my bladder seems to be the main remaining trigger and the burning I get seems very localised to my urethra. Sitting with my weight forward on hard chairs (or as when driving the car) is also still a trigger, but I can mostly avoid having to do that.

I'm continuing to do the dilator exercises regularly - focusing on gentle sideways stretching with the smallest one - though if I miss the occasional day now I'm less concerned.

So, in summary, I'm still going in the right direction and am so much better than I was when the problems all started two years ago. Smile

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Re: Four months of significant improvement

Post  emalita on Thu Jun 16, 2016 2:08 pm

That is fantastic to hear! I hope you have continued improvement, and maybe one day you won't have to worry about it anymore Very Happy

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Re: Four months of significant improvement

Post  WaahwaahUK on Thu Jun 23, 2016 9:30 am

Hi PainBlogger. Your posts have so often helped me through a bad day. I am so thrilled for you that things are going so well! My pain began similarly to yours, though I've had no urethral problems with it. Please please please keep us posted! And wishing you continued improvement and happiness!

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Re: Four months of significant improvement

Post  PainBlogger on Mon Jul 18, 2016 12:04 pm

I figured I'd post another monthly update about my progress. I'll start with the not-so-good and get that over and done with first, but it's definitely not been all bad at all.

I've had five days where my pain has been about 3/10 on average. Now, that's not unbearable, but is enough that I can't help but notice it. I've also not gone more than five days at 1/10 without getting a 2/10 or 3/10 day. Overall, my pain has been a little bit worse than the previous month.

However, that is unprovoked pain - or pain provoked, so to speak, after emptying my bladder. I'm continuing to be able to have pain-free sex again. Sex doesn't seem to trigger my pain even on days where perhaps earlier in the day I've been at that 3/10 pain level. So, psychologically, I continue to feel like I'm making good progress. The pain that I have is not hugely disrupting my life it's just, literally, a pain. I continue to be able to sit better and for longer. Clothes around the area give me much less bother (if any trouble at all) than they did even a few months ago.

One possible cause of this increase in pain again may be a multivitamin and mineral supplement I started taking a few weeks ago. I stopped taking it a couple of days ago and the last couple of days I'm back to a 1/10 average. I'm sure I read somewhere that some of the B vitamins can cause trouble for those with interstitial cystitis. Maybe there's a lot of unmetabolised B vitamin or B vitamin metabolites in my urine causing urethral irritation.

Also, I'm overdue for an acupuncture session. And, thirdly, my last period was a bit unusual in that it dragged on and I had to use sanitary towels for nearly two weeks. Towards the end my skin was getting quite uncomfortable. Hopefully this month will be more normal, I'll have another acupuncture session and see if stopping the supplement continues to make a difference.

I continue to use dilators several times a week for stretching. I'm also still watching my diet carefully and avoiding known triggers.

So, overall, I'm still going in the right direction Smile

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Re: Four months of significant improvement

Post  fairlight10 on Mon Jul 18, 2016 3:22 pm

Hi painblogger. Good to hear you are improving. I have dropped back to 20mgs of nortriptyline from 30mgs. Tried 10mgs but was not comfortable on that. My digestion has been playing up so I went to gp and was put on 20mgs of omeprazole. Well after a few days I had urethral irritation. I stopped taking it for a few days then started again. Urethra l irritation again. I am on ranitidine which is ok. Did some research on omeprazole because I was on it when vestibulitis started. There is sodium laural sulphate in it. Also one site said urogenital burning as a side effect.

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Re: Four months of significant improvement

Post  WaahwaahUK on Wed Jul 20, 2016 2:35 pm

Hi PainBlogger, sounds like overall you are making good progress though which is fantastic news. Do keep us posted!

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Re: Four months of significant improvement

Post  PainBlogger on Thu Aug 25, 2016 7:51 am

Another monthly update:

The last four or five weeks have seen more improvement. My pain has only gone above 1/10 on three days and then only to a maximum of 3/10. On the 1/10 days I'm just getting a bit of a niggle sometimes after emptying my bladder (which is still not emptying with a good flow, but I can live with that).

I'm still careful about using fragrance free bathing products/detergent etc. I'm still wearing underwear that's a size too big for me and have to ensure that jeans/trousers/shorts aren't tight around the crotch/groin area. I'm still careful to not eat certain foods/drink acidic or caffeine-containing drinks etc. And I still use my pressure cushion on hard chairs. But, in the grand scheme of things, those are just minor inconveniences. I've got used to doing those things and they've become second nature.

Sex is pain-free aside from the occasional bit of discomfort if it goes on too long. I don't feel the need to use the dilators so much though I do continue to do stretching exercises with them a few times a week. I don't feel quite confident enough to stop using them yet.

I hope the above is encouraging. Two years ago I had days when I thought I'd be stuck with pain and dysfunction forever. And who knows, maybe I will have a bit of a relapse again at some point. But, if I do, I'll know that it's possible to get out of it again. So don't lose hope if you are suffering. People do get better. Smile

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Re: Four months of significant improvement

Post  WaahwaahUK on Sat Aug 27, 2016 6:44 pm

You're so inspiring in your determination, and I am so happy it's paying off for you! x

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Re: Four months of significant improvement

Post  PainBlogger on Mon Sep 26, 2016 2:36 pm

I just thought I'd post a realistic but hopefully encouraging update.

Over the last four or so weeks my average pain has been a little higher than the previous month. The maximum has not gone over 3/10 though. It's just that the number of 2/10 days has increased, 2/10 being enough that I'm frequently aware of the pain but it's not enough to significantly lower my mood. On the plus side, the pain hasn't stopped me doing anything. Aside from one occasion, I've still been able to have pain-free sex. I'm not sure why that one occasion proved painful when the other occasions didn't. It did worry me quite a bit - I started to fear that I wouldn't be able to do it again - but a few days later it was fine again. All I can think is that it was in some way hormone-related. Even before I developed problems I sometimes had discomfort in the first few days after my period had finished. I think oestrogen is lower then and doesn't rise until mid-cycle.

I'm getting on a bit better sitting on hard chairs without a cushion. The main pain trigger for me is still around bladder emptying.

I'm trying to get back to using the dilators daily (or at least most days) as a maintenance regime. Even though my PFMs feel much less tight, I wonder if the fact I lapsed a bit with the dilators has contributed to my slight pain increase. Sex is not a replacement for stretching exercises.

It's been almost six weeks since I've had acupuncture and I wonder too if I need it more often to maintain my improved condition.

Despite my pain increasing a bit from last month, I'm still feeling optimistic. I'm still heaps better than I was a couple of years ago - than even one year ago. Pain has only had a very minimal effect on my mood in the past month or so. At the end of the day, whatever number I give to my pain, if it's not impacting on my mood and/or stopping me doing normal activities then it doesn't matter. But fingers crossed I can get back to more 1/10 days in the next four weeks Smile

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Re: Four months of significant improvement

Post  WaahwaahUK on Mon Sep 26, 2016 4:56 pm

This is a really encouraging post PainBlogger, because like you say overall when you look back you can see that your pain levels have dropped a lot. I myself also noticed recently when I lapsed on the dilators that my pain increased again a bit. Wishing you lots more good days!

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Re: Four months of significant improvement

Post  PainBlogger on Sun Nov 20, 2016 10:52 pm

I'm a bit late updating, but that's because I'm doing well and I forgot!

In summary, I'm continuing to improve.

I'm still getting pain some days that is triggered by emptying my bladder. I can be fine for a week and then suddenly, with no obvious cause, get the burning after urinating. But the most severe pain I've had in the past couple of months has been 3/10. Most days it is negligible (1/10) or I'm pain-free completely.

I still use my pressure cushion, but I can manage on hard chairs without it if I have to now. Clothes haven't been a problem. I'm not wearing anything ultra-tight, but then I never really did anyway before all this.

I'm continuing to have pain-free sex. My PFMs are so much better than they were when I was at my worst. I sometimes get the urinary burning when I first empty my bladder after sex, but I just try to keep drinking plenty to dilute my urine right down and sit in warm water for a bit and that helps.

If you're suffering, don't give up hope. At my worst I felt incredibly despondent. But with perseverance (and, admittedly, some good luck) I'm no longer prevented from doing anything by this condition. It's not 100% gone, but the residual pain is something I can live with.

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Re: Four months of significant improvement

Post  fairlight10 on Mon Nov 21, 2016 10:13 am

So pleased you are still improving like myself. Still have minor setbacks. Like you said , when urinating. It's more of a discomfort. The weather being cooler is also a plus.

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Re: Four months of significant improvement

Post  WaahwaahUK on Wed Nov 23, 2016 8:33 pm

So, so happy to read this! Wishing you continued good health x

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duloxetine

Post  Tilly56 on Mon Nov 28, 2016 7:48 pm

could I ask what level of diloxetine you take, thanks

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Re: Four months of significant improvement

Post  PainBlogger on Mon Nov 28, 2016 10:11 pm

Tilly56 wrote:could I ask what level of diloxetine you take, thanks

90mg per day in divided doses Smile

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Re: Four months of significant improvement

Post  PainBlogger on Thu Mar 16, 2017 6:08 pm

I haven't posted for a while and I should have because I'm still doing well in my recovery and I hope that encourages others.

Most days now I don't get any pain at all. I still get occasional burning pain after emptying my bladder but it only lasts a couple of hours at most. I tend to get some mild discomfort still after sex but only in the few days after my period has finished i.e. when we've abstained for a week. But then the rest of the month it's fine.

I still use my cut-out cushion on hard chairs. I can get away without it if I can slouch back in the chair - say if I'm just having a drink in a café/pub - but if I'm eating a meal and need to sit more upright and forward on a hard chair I need the cushion or it can trigger pain.

Treatments I'm still using are duloxetine and acupuncture. I still watch my diet but I can drink carbonated drinks and proper caffeinated tea now in moderate amounts without it triggering my pain when I urinate. I'm still strict with the no fragranced washing products - why take the risk?

At my worst I really was in a lot of pain and had to avoid a lot of things. People can get better from this. If you're suffering don't lose hope. Smile

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Another approach and Duloxetine

Post  bambi82 on Mon Jun 12, 2017 2:57 pm

Thanks for posting re duloxetine and the positive result you have had from it.  Anything that turns down the burning nerve pain has to be good and that sounds a relatively low dose at 90mg, divided dose a day.  I have also been on amitriptaline
but I am on pregabalin 350mg (for another health condition), as have been for many years but as with many of these meds does not touch the pain felt in the vulva.  I went to talk at the weekend where a pain specialist mentioned Duloxetin e for the vulval pain so I will certainly try this. I appreciate you followed your post up this year saying you were still benefiting. All the best to you.

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Re: Four months of significant improvement

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