Vulvodynia Support
Would you like to react to this message? Create an account in a few clicks or log in to continue.
Log in

I forgot my password

Latest topics
» Hope to all my suffering ladies
New to Group, scared and depressed EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New to Group, scared and depressed EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New to Group, scared and depressed EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New to Group, scared and depressed EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New to Group, scared and depressed EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New to Group, scared and depressed EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New to Group, scared and depressed EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New to Group, scared and depressed 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!
New to Group, scared and depressed 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


New to Group, scared and depressed

+2
Sebby (Admin)
Coldchris
6 posters

Go down

New to Group, scared and depressed Empty New to Group, scared and depressed

Post  Coldchris Thu Jun 09, 2011 6:29 pm

Hi Everyone:

So glad to have found this site. This is my story. I had an UTI. After UTI, yeast infection, treated by diflucan, cream and OTC monistat. Did not get better. Many trips to dr. Treated shabbily. Went to Seattle (I live in Alaska) to a specialist who said I had a hyperimmune response to the yeast and had swelling and inflammation. Got some cream to use 2xs a day for 6 weeks to help get it in check. Mid way through, got an absessed tooth and had to go back on antibiotics (still on them). Had antibiotics (pro biotics to balance them), vicodin, advil, tooth numbing injections, etc. Urine was like acid I bet and really irriated the heck out of inflammed vestibule. Sitz baths and keep on the cream. Started using domeboro sitz baths but I think this may be trying out the rest of my skin. (Has anyone tried Aveeno?) I am struggling with this and feels like it just keeps coming. I'm scared, depressed and feel very alone. Go back to specialist next Wednesday. Did anyone else feel so overwhelmed and depressed?

Coldchris

Posts : 9
Join date : 2011-06-09

Back to top Go down

New to Group, scared and depressed Empty Forgot to Add

Post  Coldchris Thu Jun 09, 2011 6:33 pm

Pain is in my vestibule. Was like razors, but the sitz baths seem to be helping, but seem to be itching on lips now. I'm about to have my period, does anyone else have flare ups around this time?

Coldchris

Posts : 9
Join date : 2011-06-09

Back to top Go down

New to Group, scared and depressed Empty Re: New to Group, scared and depressed

Post  Sebby (Admin) Thu Jun 09, 2011 7:29 pm


Welcome to the forum and hope you feel you can let out your feelings on here

I was recommended Aveeno by the Vulval dermotologist..am gonna deff try it. Got a huge bottle. She said that it helps to moisturise the area and get the vulvar used to touch and calm the nerve endings down.

Myself and if not every member has at some point felt extremley low and depressed. I didnt want to go on anymore. It is also a very isolating condition which is why I set up the forum in the first place. I'm sure if we all had sore and painful arms or legs we would feel more able to talk about it with others but because it is our sexual organ it feels so taboo to talk about!

Your not alone with us and if you wish we also have a secret facebook group you can join. Posts do not appear on your profile or newsfeed

Let us know how the steriod cream goes and try anything you feel may help you. A lot of this is trial and error and wading through tons of creams, meds etc until we can find the right combination.

Do not give up...I am managing better than ever now. Am on 300mg pregabalin and biofeedback as mine is most deff due to an unstable pelvic floor. I have even managed to start having sex again..so remember we can get better



Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

Back to top Go down

New to Group, scared and depressed Empty Re: New to Group, scared and depressed

Post  Sebby (Admin) Thu Jun 09, 2011 7:33 pm


Oh forgot to mention..I deff get flare ups just before my period and then around the middle to the end. This is very common in women with V. I think it is a combination of the hormones, womb cramps (im sure they gotta effect the pelvic floor) and the pads/tampons we have to use.

I use the softest pads I can find. The Always silk or Boots cottons seem to work best.
Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

Back to top Go down

New to Group, scared and depressed Empty Re: New to Group, scared and depressed

Post  Sarah001 Thu Jun 09, 2011 7:36 pm

Yep the antibiotics, yeast treatment, UTI all sound alot like how some of us started with this. I for one got to the point where I didn't know how to go on with this pretty quickly but found learning alot about the subject helped. Read books such as Amy Stein Heal Pelvic Pain or When Sex Hurts and you'll soon see you're far from alone in this. Definitely get your pelvic floor checked too, I've been doing something recently to my tight pelvic floor that helps quite a bit so like Sebby I'm in the hypertonic pelvic floor group.

And Sebby, holy moly you're having sex now? Fantastic! If I get to that stage I'm wondering where I'll find someone to actually have sex with! Laughing
Sarah001
Sarah001

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

Back to top Go down

New to Group, scared and depressed Empty Re: New to Group, scared and depressed

Post  Sebby (Admin) Thu Jun 09, 2011 7:47 pm


Yeah, I found a fella! ...really dunno how I did that! Well actually we were flirting at work and I drunk texted him one evening and it all went from there lol

We only had sex a few times but I am managing to relax more and more. I still havent got hold of the new biofeedback sensor. Havent got back to Dr Glazer yet to say it not turned up yet.. yeah its naughty of me..the boyfriend kind of distracted me!

I did tell him I get pain etc and explained I couldnt always have sex etc...he dont seem to mind anyway and he like the kindest man I have ever met!

cheers

Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

Back to top Go down

New to Group, scared and depressed Empty Re: New to Group, scared and depressed

Post  gem123 Thu Jun 09, 2011 8:16 pm

hi i have just got back from a appt with a dermotologist and she has also said the same to me about thrush so i will be starting of a 3 mth treatment soon, i know how you feel i have been really down the last few weeks but i am feeling a bit more positive i have just ordered the aveeno oatmeal satchets to try i will let you know what there like, i just wanted to say you are not alone and thinking about you

gem xx

gem123

Posts : 7
Join date : 2010-09-10

Back to top Go down

New to Group, scared and depressed Empty I think we have all been there

Post  annaCA Thu Jun 09, 2011 8:56 pm

I think we have all felt depressed, lonely, and fear that the pain will get worst. I know I felt it this past week as on top of v, I got a possible uti and have cramps from my period. I definitely get worst right before my period and right after. It is pretty exhausting going to all the doctor appointments and trying out new medication and dealing with the side effects. This board has definitely helped me even just by reading other people's posts and knowing I am not alone in this and that although we each have a different story, we have a lot of similarities. It was really helpful for me knowing I wasn't a freak and that more people than you think have this condition. I am trying to take each day as it comes which I feel is harder than it sounds. Hope you are feeling better!

annaCA

Posts : 8
Join date : 2011-05-16

Back to top Go down

New to Group, scared and depressed Empty Re: New to Group, scared and depressed

Post  Coldchris Thu Jun 09, 2011 9:51 pm

This just feels like hell mentally and physically. It has knocked me for a loop. It's just too much. I am normally happy and outgoing, but this is making my life miserable. I work full time, have a five year old son (very best thing), a supportive husband, but how much more can I do here? I'm trying things, following doctor's orders, and I'm just feel beaten.

Coldchris

Posts : 9
Join date : 2011-06-09

Back to top Go down

New to Group, scared and depressed Empty Re: New to Group, scared and depressed

Post  Coldchris Fri Jun 10, 2011 12:30 am

Would love to join facebook group, sebby! Love it.

Coldchris

Posts : 9
Join date : 2011-06-09

Back to top Go down

New to Group, scared and depressed Empty Re: New to Group, scared and depressed

Post  Sebby (Admin) Fri Jun 10, 2011 7:25 am


I have inboxed you with details regarding the facebook group Smile

Take one day at a time, sometimes thats all we can do and know that when we get the real bad flare ups it will calm down..Im on my period at the moment and OUCH! I cant use the softer pads at the moment as I am real heavy and these big old pads are rubbing! Shocked

In the meantime we can at least support each other and have an outlet for our feelings knowing that others know exactly how you feel Smile



Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

Back to top Go down

New to Group, scared and depressed Empty It's ok!

Post  Louise Tue Jun 14, 2011 10:57 pm

We are all here for you & yes your story sounds a lot like how mine started! You are not alone I can totally relate to how you feel ! x x x

Louise

Posts : 10
Join date : 2011-01-27

Back to top Go down

New to Group, scared and depressed Empty Re: New to Group, scared and depressed

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

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