Vulvodynia Support
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» Hope to all my suffering ladies
I'm new here, I'm so scared :( looking for girls who are new in this EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
I'm new here, I'm so scared :( looking for girls who are new in this EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
I'm new here, I'm so scared :( looking for girls who are new in this EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
I'm new here, I'm so scared :( looking for girls who are new in this EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
I'm new here, I'm so scared :( looking for girls who are new in this EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
I'm new here, I'm so scared :( looking for girls who are new in this EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
I'm new here, I'm so scared :( looking for girls who are new in this EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
I'm new here, I'm so scared :( looking for girls who are new in this 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!
I'm new here, I'm so scared :( looking for girls who are new in this 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


I'm new here, I'm so scared :( looking for girls who are new in this

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Post  Ewa Wed Dec 02, 2015 7:28 am

Hi everyone, I'm from Poland, I'm 28 and I think I have vulvodynia. It all started with a bacterial infection. There is no infections anymore and I'm still suffering, painfull bladder and painfull vulva, it lasts already 8 months. Hard to get any support in Poland, hard to get to a good doctor... I am so so scared, that I will suffer for the rest of my life, that I will end up alone, no man, no children, just misarable life, I'm so scared if I tell my partner - he will leave me. I can feel only a strong anxiety now, I'm week, can't eat. I'm afraid of vaginas sex, I can have it, but after I feel terrible and so much worse. I'm afraid of depression also, because I don't know if I will be able to fight it. I will be glad and happy to talk to somebody here, has anyone here got vulvodynia after a long infection and taking many medicines?
Kiss
Ewa

Ewa

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Post  PainBlogger Wed Dec 02, 2015 4:49 pm

Have you tried eliminating all potential problem foods and drinks from your diet like caffeine, alcohol, chocolate, artificial sweeteners, citrus fruit and juice, vinegar (basically anything acidic or bladder/urethra/vulva irritating)? Some people find a low oxalate diet helps. If you search low oxalate diet you can get a list of high oxalate foods to avoid.

Simple changes to washing detergent and soap can sometimes help too. Avoid all fragranced soaps and washing powder on your clothes. The same with toilet paper and sanitary towels - use unscented ones.

My problems also started with a urine infection and thrush infection. It seems to be quite common that vulvodynia starts with a simple infection which clears up but leaves pain behind.


PainBlogger

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Post  Ewa Wed Dec 02, 2015 5:55 pm

I'm using soap for babies, cotton underwear, not tight trousers, only fresh water for cleaning etc. About low oxalate diet I just read and started few days ago, but I guess it needs more time. Do you know about any herbs or suplements that might be helping? Is it any better with your problems? How long are you suffering?
Kiss

Ewa

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Post  PainBlogger Wed Dec 02, 2015 9:19 pm

It's best to persevere with the low oxalate diet for at least three months. I didn't find it much help, but I also have muscular issues (tight pelvic floor muscles) contributing to my pain. I've had the problem for 17 months now, but not as bad now as when it first started. Cutting out acidic foods has helped reduce frequency of the burning I get after emptying my bladder.

I've read that aloe vera capsules and marshmallow extract can sometimes help with a painful bladder. I haven't tried marshmellow extract. I tried aloe vera but only for a month. I think I need to try it again for longer.

I hope you find something that helps you.

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Post  Ewa Thu Dec 03, 2015 3:55 am

Do you also have a worse and better days? I don't know how to handle it when it's getting worse again. I'm just overwhelmed by stress. Thank you for advices.

Ewa

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Post  PainBlogger Thu Dec 03, 2015 10:57 am

I definitely have worse and better days. On the better days, which now are about 50% of days, my average pelvic pain is 1/10 or maybe 2/10. On the worse days (about 25% of days) it is maybe 4/10 going to a maximum of 6/10. (I rate my pain quite conservatively as I also have a chronic sensitization syndrome which affects most of my body not just vulvodynia. To my way of thinking, nobody could remain conscious with a 10/10 rated pain, so when people say their pain is 10/10 I'm sceptical.) On the other 25% of days it is somewhere in between.

It is very stressful to have any persistent pain. Vulvodynia is even worse because it's in an area of the body that it is difficult to talk about with people. For example, all my friends know I have back/neck/leg/head pain. But many have no idea what I have been suffering with vulval and urethral pain. I think it's important to be able to talk with a partner or trusted friend about how you feel. Even if they can't fully understand because they haven't experienced it, it can be good just to talk about it.

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Post  Ewa Thu Dec 03, 2015 4:00 pm

My scale of pain is from 1 to 4, one is almost perfect, 4 is hard to stand, past two months I had 2 everyday. Today my pain is 4. I had this problem for eight months now, and I already don't remember my old life Sad Do you think your pain will gone completely one day? Will it be perfect like it was? Or for the rest of our lifes there will be something wrong there... Sad I had headaches also, migraines. I tried to talk with my mother and sister, but everybody has some problems and that their problems are the worst...

Ewa

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Post  PainBlogger Thu Dec 03, 2015 4:53 pm

I also find it difficult to remember what I felt like before this pain started Sad . I'm not sure I believe I will ever be completely cured of it, but I do believe it will be better than it is now. I have to believe that or I would get too depressed. The pain specialist I saw in the summer said that neuropathic (nerve) pain often goes away after a couple of years. So I think ahead to summer 2016 and really hope that by then it will be mostly or completely better. Many people do get completely better - but once they are better they don't visit websites like this one, so the messages on websites like this will always be skewed towards the negative because most people are posting messages to ask for help or share advice. Try not to be too discouraged when you read about people that have had the problem for a long time. It doesn't mean that you won't ever get better. (I know it is difficult not to get depressed. I've had some really miserable days.)

The worst thing, for me, is the disruption it causes to my life: if it hurt but I could still do everything I wanted to do then it would be easier to cope with. I just want to be able to sit on a chair for more than two minutes without having to take a giant foam cushion everywhere(!) and I want to have a full relationship with my husband again.

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Post  Ewa Fri Dec 04, 2015 3:14 am

Have your other pains also started at the same time as vulvodynia? Are you able to have sex sometimes? Without suffering after... I think it would be easier to stand if I were single... My partner keep telling me that he will wait, that he is patient, but he also thinks that I am panicking too much... I'm sure his patience soon will be over.

Ewa

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Post  PainBlogger Fri Dec 04, 2015 9:02 am

No, I had my other pains for over a year before the vulvodynia, and the headaches for years. Sex - no, it's just not possible at the moment. Luckily, I have a very supportive husband. Communication is very important. If your partner loves you and is the right person for you then he will support you through this. It may not be easy - he's bound to get frustrated and impatient at times as he is only human - but talking about those feelings is important.

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Post  Ewa Fri Dec 04, 2015 7:12 pm

What kind of headaches do you have? Migraines? I read that women with vulvodynia suffer also for migraines... What is this other pain feels like? I am trying to be very honest to my partner, telling everything, I guess if he leave me it won't be my fault.

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Post  PainBlogger Sat Dec 05, 2015 3:48 pm

Migraines, yes. My whole CNS is pain sensitized.

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