Vulvodynia Support
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» Hope to all my suffering ladies
Life turned upside down!! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Life turned upside down!! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Life turned upside down!! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Life turned upside down!! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Life turned upside down!! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Life turned upside down!! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Life turned upside down!! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Life turned upside down!! 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!
Life turned upside down!! 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


Life turned upside down!!

+3
Sebby (Admin)
Mouse
helen4444
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Life turned upside down!! Empty Life turned upside down!!

Post  helen4444 Fri Oct 08, 2010 8:17 pm

Hi all, I would not wish vulvodynia on my worst enemy but it is such a relief to find others who no exactly what I have had to endure for nearly 2 years.Ironically, I was working as a research nursing sister in pain management focusing on clinical trials of new drugs. Like many sufferers mine started as thrush, used all the usual stuff ended up at GUM clinic given aqueous cream, told to have salt baths.Ended up in A&E to be given anaesthetic cream which just made burning worse.I was struggling to sleep and drinking a litre of vodka over a 2 day period for the agony.Finally after many trips to GP my husband decided enough was enough and we paid for me to see my fab gynaeo Mr Lane who diagnosed me in 10 mins ,was put on amitriptyline and then Pregabalin ( ironically i was lead nurse when this drug was on trial).I agree with others that for this to be effective you need to be on a dose of at least 100mg twice a day and higher if tolerated.
I have been close to taking my own life, my kids have had to put up with alot, my husband even more ( no sex now for nearly 2 years ) .I have lost my job as alot of my time was spent sitting at a PC - nightmare! My life is so resricted now as I know what sets the BAD pain off eg sitting on highback chair, driving etc.It was also felt that I could not focus on my high stress job so was finished.
I have felt so alone with this thing and it is reassuring to know i am not on my own.
Sorry for this long winded intro but I wish you all if not a cure then relief with whatever treatment suits you best. If I can help anyone with any nursey advice please feel free to ask, I really miss been the nurse I hate been the patient.
Love and best wishes to u all Helen xxxxxx

helen4444

Posts : 11
Join date : 2010-09-26
Age : 56
Location : Leeds, uk

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Post  Mouse Sat Oct 09, 2010 12:04 am

Hi Helen,

I'm so sorry that you are in pain. It really is incredibly difficult to try to appear normal when you have this silent illness robbing the enjoyment from your life. My husband is amazing but when I'm having a good day he thinks that means I'm cured! And when I groan when I get up (this happens a lot)or grimace a bit he then thinks it's life threatening.

I'm relatively new on here as well and have never really posted "my story" as such. I can't even get my timeline sorted as it's been a blur of constant ill health for the past year. I did however have thrush after taking antibiotics earlier this year but can't even recall what the hell that was for! I had surgery in February on two bartholins abscesses and have had pain since then. After the surgery "pain" went away the vulvodynia first presented as PGAD. I have generalized unprovoked, it would have been particularly cruel if I'd had another version with the PGAD. I no longer have the arousal (makes it sound fairly glamorous when it's really a bloody nightmare) I "just" have constant pain which now seems to fit with my cycle. At least 4 horrid days at the start and in the middle.

I hope you are finding some solutions. I too went very low before I decided I wanted my life back. On good days I can see that, on bad ones not so much. I was also fortunate in finding a fabulous sub specialist and was only treated like a crazy person for about 4 months. I have a therapist who keeps me sane and a great GP. I feel very lucky about that. Originally I discounted seeing my GP because my Gynaecologist was less than helpful (that's a whole other story) but when I finally went to her she knew all about it! I was gobsmacked and a bit peeved I didn't go sooner.

It's reassuring to know there are people who understand. I'm about to have lunch with one of my GF's, I know that someone who hasn't had a chronic pain disorder has no idea what it's like so I tend to keep details to a minimum and even then I feel like I'm whining. Thank goodness for forums like this. Take care. Kia kaha.

Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

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Post  Sebby (Admin) Sun Oct 10, 2010 9:03 am


Welcome Helen

I too have had this for nearly 2 years now. Im going for a nerve block soon as Im on citalopram and buspirone for anxiety so I have to be careful about taking other meds.

When Im in bad pain I do take 15mg of codine x 2 (co-codermol) its getting me through the bad patches so I try not to take it unless I really need it.

I managing to work but it is difficult, I too work at a pc but I have a soft cushion that I sit on and get up regularly for breaks.

Im actually thinking of trying to cut down on the citalopram in case I do need to switch to Amitriptaline in the future but I get side effects and the anxiety has been bad over the last couple of weeks.

I too have felt like I didnt want to go on living and that i didnt have a future. I do hope we can help to support you and I pray the treatment works for you

Godbless
Sebby
xx
Sebby (Admin)
Sebby (Admin)
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Post  naomi Sun Oct 10, 2010 6:06 pm

hi sebby, have u considered pregabablin?

http://www.lyrica.com/

just my therapist put me on this for anxiety but it is now used for nerve pain too.

im no doctor so check out the link above, pregablin is also called lyrica.

ohhhhhh man what a friggin weekend Sad went to a wedding fair at the NEC with my future sister in law....a whole day packed full of girls getting all excited etc. It was sooooo hard not to burst into tears. I feel like im being left behind. All my other close mates have boyfriends now and listening to them and their sex lives......such a hard weekend. Today Ive spent the day in bed just crying and feeling so low. I have to force myself to do these things (go to wedding fairs, visit friends with babies, go out on the tow) because if i dont i isolate myself completely and dig my self in deeper mentally.

Helen i know what u mean with the vodka, i drink it too numb the pain, its the only thing that seems to take the soreness down...either that or im so pissed it numbs my senses Sad I have thought of ending it all, the only thing that stops me is the strong feeling that I DESERVE A DECENT LIFE LIKE ALL MY FAMILY AND FRIENDS! and I want may FAIR SHARE DAMMMMMIT!!!! I dont want to die! just want this damn thing to eff off.

I really wish we lived closer and could physically support each other. You guys are the only ones who really truely understand. It feels like my lifes in knots and i cant undo them.

Thinking of u guys, hope u had good weekends xxxxxxxxxxxxx
naomi
naomi
Moderator

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Location : Cheltenham

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Life turned upside down!! Empty Pregab is definatly worth a try

Post  helen4444 Sun Oct 10, 2010 6:36 pm

Hi Sebby,
Thanks for your reply.Has your Gyno told you to use codeine ? This and paracetamol don't really touch neropathic ( nerve) pain.I can't tell u the difference Pregabalin made to me especially as i increased the dose. There are other meds like it too, your medic should know. My Gynao asked the consultant i actually did pain trials 4 and she said it is really effective.She travels the world lecturing on pain management and has written books - she really knows her stuff although she never contacted me directly even though she knew what i had - thats some dr's 4 u !!!!!! i asked about pain block injections and apparently some only work 4 48hrs which to me is not worth it,my source may be wrong but it's worth checking.
Time for a medicinal vodka now.
Love Helen xxx

helen4444

Posts : 11
Join date : 2010-09-26
Age : 56
Location : Leeds, uk

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Post  Sebby (Admin) Thu Oct 14, 2010 8:43 pm


Hey guys

Im not sure about pregabalin as my mum was given it once along with another med and she felt really anxious.

Im a bit on the highly anxious side at the mo so will try it when ive settled down more as I think a change in meds mite not be a good idea right now

I read about codine on a nerve pain leaflet..I does work for me as I prob relaxes me enough and releases those endorphines. I find the pain less raw and acute with it. I only take it if pain is bad tho

I have been told the block if it works should last for 6 weeks..I will wait and see

Sebby
xxx
Sebby (Admin)
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Post  jules Fri Oct 15, 2010 3:07 am

hello all...i am now at the top dose for Lyrica. I don't feel anxious. but, it does different things to different people. i have had no side effects. i am on 300 mgs. as for pain meds, codeine won't touch nerve pain. i tried that before. i take Vicodin daily (i'm afraid to say). it does take the edge off..but if the pain is hot and burning..it is too late for relief..unless i use a cool gel pack. but..that doesn't last. opiates help block nerve pain..but..you need a strong dose. oxy helps..but, not easy to get a hold of..very addictive as well.

jules

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Post  elmyra Tue Mar 29, 2011 6:19 pm

Hi all. I have just been diagnosed as suffering from Vulvodynia by a gynaecologist but like Mouse, I also suffer from PGAD- like symptoms.

When the condition started, I experienced contractions in my pelvic region, which caused me a great deal of pain and discomfort. This has since abated somewhat, but I still suffer from a range of symptoms, including a 'blocked feeling' 'down below', numbness/ 'pins and needles' sensations, pain (which varies considerably in intensity) and throbbing. Sometimes it can feel almost like a minor 'electric shock' and sometimes it feels almost sexual.

This may sound weird but I can actually cope better when the sensations are moderately painful than when they feel more 'sexual' (I also suffer from OCD, which has really latched on to me having these sensations).

I'm worried that my condition might be PGAD rather than Vulvodynia, because I experience both types of sensations. I really want what I'm suffering from to be Vulvodynia, rather than PGAD, because I feel more can be done to help me- I'm scared that if it is PGAD, I'll be stuck feeling this way for the rest of my life. However, I feel a bit more reassured now that I've read Mouse's post.

Has anyone else with Vulvodynia experienced this?

elmyra

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Post  Mouse Tue Mar 29, 2011 6:58 pm

Hey hon,

I'm just off to work BUT I will respond in full later today. Don't be afraid that this is PGAD. My lovely specialist says that pain no matter how it presents is pain. My arousal symptoms would alternate with pain and one would be a relief from the other. Eventually it settled into pain all day every day and now I'm almost pain free. It's a journey but I think it's possible to beat it!

Talk soon

Mouse

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Location : New Zealand

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Post  elmyra Wed Mar 30, 2011 2:27 pm

Thanks for replying to my post. I'm so glad that you're so much better XX.

elmyra

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Post  ves Sun Apr 03, 2011 7:36 pm

Hi all, and hugs to Helen- sounds like you've been through a rough couple of years. It really does help talking to this lot!

Naomi, interesting about pregabalin (I'm currently on Citalopram for anxiety but not loving the side effects) and am so with you on the occasional bitter rage!

ves

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