Vulvodynia Support
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» Hope to all my suffering ladies
Cystitis/UTI EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Cystitis/UTI EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Cystitis/UTI EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Cystitis/UTI EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Cystitis/UTI EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Cystitis/UTI EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Cystitis/UTI EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Cystitis/UTI EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Cystitis/UTI EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

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 …

Comments: 4

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: 6

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: 3


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Post  Sunflower82 Sat Sep 01, 2012 8:22 am

Hi,
I have been diagnosed with vulvodynia, I am currently taking antidepressants and have been seeing a women's health physio over the last year, and have also seen a chiroprator. The problem is I get cystitis or UTI everytime we try to have sex, due to the pain this doesn't happen very often twice a month, and really doesn't last that long before we have to stop. I follow all the rules wash and wee before and wash and wee after. I've tried water d mannose powder but it hasn't work for me. Doctors are useless as their answer is long term antibotics, or to take one antibotic after sex which I really don't want to do! Just wondering if anyone else can offer advice.


Many thanks

Kt

Sunflower82

Posts : 82
Join date : 2012-02-17

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Post  Sarah001 Sat Sep 01, 2012 12:38 pm

I'm not sexually active right now but I have started getting repeated UTIs, it's got to the stage where I get one every other month at least and the last one went to my kidneys and made me really, really ill so I asked my Women's Health Physio about this and she explained if your pelvic floor is tight (mine is horrendous) it inhibits the detrusor muscle which should contract to empty the bladder at the same time the pelvic floor relaxes to allow this to happen. If your pelvic floor can't relax fully clearly your bladder isn't going to empty properly and the urine left in there is in her words "like stagnant pond water and a breeding ground for infections to take hold" so she recommends women with tight PF muscles and UTIs do double voiding which is basically exactly what it sounds like and go once until your brain thinks your bladder is empty followed by waiting a couple of minutes either in place or move around a bit then try again to see if there's more in there. Do this every time you pee to make sure nothing gets left behind to help infections take hold and especially after sex. I do the double voiding (and triple voiding if I can still feel some urine in there) and I always have some left after my brain is convinced I have an empty bladder. My PF is brutal and feels like wood because of another health condition so my physio is looking into trying to get me a device that vibrates and you hold it over the bladder every so often to stimulate the bladder to empty, patients with MS sometimes use them for this reason so if she does manage to acquire one for me I'll update with results but definitely try the double voiding routine to see if it helps.
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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Post  Rainy Day Sat Sep 01, 2012 6:17 pm

I used to get UTI's every time I had sex too. I finally stopped them by drinking at least 16 oz of water immediately afterwards. And, I never have sex before going to bed. Unfortunately, I got lazy on this in Feb, and that's when I got a UTI again (and the dreaded V).

Rainy Day

Posts : 54
Join date : 2012-07-19
Location : US

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Post  Sunflower82 Sun Sep 02, 2012 12:38 pm

Hi,

Thanks for both responses, all ready doing both of these, yeah I also have problems with not always being able to empty my bladder something physio has helped me with, but still stuck with infections, generally 24 hours after sex I will have cystitis, or recently within half an hour the frequency goes up, need to go every15-20 mins. Doesn't burn as much during sex or after sex used to burn for hours anywhere between 3-6 hours. During sex I get a slightly burning sensation and a stretching sensation. Then we have to give up. Still working on the dilators, problem is once I have an infection even doing the dilators are out of the question, I told my doctor this and she responded well u shouldn't have to stop using the dialators because you have an infection!! At which point I wanted to shout at her!
I find if I use the dialators regularly this helps when it comes to trying sex, however I find I need to do it everyday and then having infection I seem to go back to square one, so frustrating, but I am sure everyone can see where I'm coming from.

Sunflower82

Posts : 82
Join date : 2012-02-17

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Post  Sarah001 Sun Sep 02, 2012 1:47 pm

I have the same issue, if I don't clench for a while then get a UTI I clench like crazy because of the irritation and no you shouldn't use dilators with an infection present stupid doctor! Evil or Very Mad It may be that you're still retaining urine without knowing it, an ultrasound can tell you this and you have one with a full bladder then pee and have a repeat one to see what's still in there, apparently 100ml is normal but over that isn't according to my physio. I'll be having one soon if my frequent UTIs continue. Do you use lube? Anything oil based can allow bacteria to cling to it and help it into the urethra so if you use oil based probably shouldn't however water based ones can do it with me too so it's not foolproof.
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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Post  Sunflower82 Sun Sep 02, 2012 9:03 pm

Hi,
Thanks for the message about lube, never knew that used to use oil based but generally now used water based.

Thanks kt

Sunflower82

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