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» 7 months since the diagnosis
Anyone have pain with urination? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Anyone have pain with urination? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Anyone have pain with urination? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Anyone have pain with urination? 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!
Anyone have pain with urination? EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Anyone have pain with urination? EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Anyone have pain with urination? EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Anyone have pain with urination? EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Anyone have pain with urination? EmptyMon Apr 08, 2019 7:54 am by Jo44

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


Anyone have pain with urination?

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Anyone have pain with urination? Empty Anyone have pain with urination?

Post  mertzwl on Tue Oct 16, 2018 2:35 pm

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 when you pee? I feel burning/razor blades/fire every time I pee and especially if I've had a few drinks. I've had what I call flare ups before that seem come out of the blue but are more likely if I've had a few drinks. Either the pain goes away after several seconds or it escalates and I want to die. I've done antibiotics, been scoped, and had blood and urine test and haven't gotten an answer.

I don't have issues with sex or tampons. I got an ablation last year so I don't have to worry about that any more.

I'm so thankful I found this "bread crumb!" I can't get in to see the Dr until Dec so I'm going to just use my lidocaine until then.

Thank you for any feedback. Being new to this, I'm looking for support.

Thanks!!
WM

mertzwl

Posts : 4
Join date : 2018-10-15

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Anyone have pain with urination? Empty Re: Anyone have pain with urination?

Post  emalita on Wed Oct 17, 2018 11:16 pm

Hi,

Does it feel like the pain with urination is coming from within your urethra or that the urine is causing burning when it comes into contact with your skin?

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

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Anyone have pain with urination? Empty pain with urination

Post  mertzwl on Thu Oct 18, 2018 1:11 am

Well, I'm not sure. It's really painful at the point when urine leaves the urethra. I don't think it's within the urethra, it's more the opening. And if urine comes into contact with the skin around the urethra, it's not a problem.

How about you? Is this a problem for you too?

mertzwl

Posts : 4
Join date : 2018-10-15

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Post  emalita on Thu Oct 18, 2018 1:16 am

Yes, sadly this has been a symptom of mine off and on the last year or so. I've found varying causes (lubricant irritation, urinating when I don't really have to, food irritants, etc.).

I can deal with a lot of pain types, but urethral symptoms make me want to give up on life. Sad

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

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Post  mertzwl on Thu Oct 18, 2018 1:52 am

Ugh, me too. I wouldn't wish it on my worst enemy. I've had exacerbated episodes that don't go away that are like a blow torch on my "business". I end up suffering until I can take a hydrocodone. Then I'm useless.

I see an escalation with coffee and alcohol. I feel like the only thing I can drink is water (boring)!

And I also feel like it's worse when I go to the bathroom when I don't have to pee really bad. So weird.

Have you been treated? What are you doing for it?

mertzwl

Posts : 4
Join date : 2018-10-15

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Post  emalita on Thu Oct 18, 2018 1:56 am

Well, the first thing I did was identify my food irritants by doing a massive elimination diet (removing supplements like B6 and vitamin C too), and then I took aloe vera supplements to encourage healing in my bladder. I think I have the food irritations under control, but then there are other things causing me pain...I just have to figure put the causes one at a time.

Have you tried an elimination diet?

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

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Post  Gaby on Thu Oct 18, 2018 9:55 am

Hi WM,

Next to my VV i also have urination problems. I also have a weird pain after peeing that goes away a few minutes later. I feel like a sharp needle being pulled in my urethra and the feeling of keep on peeing, it is AWFUL!! Fortunately i have found a doctor who is treating me with gabapantine creme 2 times per day.
I also to take cranberry tablets to avoid cystitis, ( i noticed that after my last one this pain started next to my vv).

My advise is to find the right doctor for this kind of issues, here i leave you a link http://www.cvvd.org/.
You can find some tips and help there.

Good luck!

Gaby.

Gaby

Posts : 8
Join date : 2018-07-10

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