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
Don't want to be here.... EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Don't want to be here.... EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Don't want to be here.... EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Don't want to be here.... EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Don't want to be here.... EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Don't want to be here.... EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Don't want to be here.... EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Don't want to be here.... 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!
Don't want to be here.... 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


Don't want to be here....

4 posters

Go down

Don't want to be here.... Empty Don't want to be here....

Post  Amy Mon May 23, 2011 3:42 pm

but I'm glad there's a support group for this condition. Here's my story (I'm sorry if this is tmi):

Up until Jan. 2009 I had never had a uti and up until Aug. 2010 I hadn't had yeast infection in 10 years and I had never had a vaginal bacterial infection. In Jan. 2009 I started using Nair for the bikini area and I don't know if it was the Nair itself or just being hairless down there, but I started getting uti's and had 3 or 4 of them between Jan 2009 and June 2010. Last July I had 2 uti's back to back and thought I was getting a third one right after finishing the antibiotics from the second one, but it was just a really bad yeast infection. The yi I had before were just the minor itchy kind, but this was a deep burning. The day after the symptoms of this yi started I found out I was pregnant with our third child. With our 5yo son and 3yo daughter we had to go through everything short of ivf to get pregnant with them. We weren't sure if we wanted a third, but we knew we didn't want to go through fertility treatments, so we decided to leave it to God. I didn't think I could get pg on my own, so I didn't give it much thought and decided we would only have 2 kids. Well, God blessed us with our third son and with his pregnancy came all of my problems.

Throughout the pregnancy I constantly battled yi and bacterial infections. Even when I was infection free I still had redness inside the vestibule (I think is what it's called, not on the labia, but running from the opening to the vagina to the clitoris) and pain. The pain at first was unbearable and almost drove me to suicide. I laid in bed and cried all day. Over the course of the pregnancy it became more bearable and I was able to function as if it wasn't there with the exception of intercourse with my husband. I still cried just about every day. If I went more than 2 days without crying it was a miracle. I was so scared that the pain would not go away with childbirth. My obgyn was certain it was hormone related and would go away with birth. I was so scared that it wouldn't and I was scared that I would resent/hate the baby because of the pain and that my dh would leave me for lack of intimacy. I was also diagnosed with gestational diabetes when I was about 28weeks along, which I hadn't had with my first two.

Well I'm almost 7 weeks post partum now and the pain didn't go away. When all the normal postpartum stuff started healing up properly and I realized that old pain was not going away I almost went off the deep end emotionally. Between the anxiety of this pain and post partum hormones, it was a very scary time. But I was aware enough of my emotional distress to ask my dr for an anti-anxiety rx. He prescribed me paxil and that has been a life saver, almost literally. I'm actually happy now despite the pain. I haven't cried in well over 2 weeks now. I feel normal again. I haven't felt this normal since before I got pregnant. The dr also prescribed me percocet to help relieve some of the pain and I started out taking it 2-3 times a day, but now I'm taking it once a day and trying to wean myself off. At my 6 week post partum check up the dr. told me I had a "little bit of vulvodynia" from all the infections I had early on in the pregnancy and gave me a steriod cream to use. I've been using it for a week (suppose to use it for 4) but I'm not seeing any improvements. Not only that, but when I put it on, it burns for about an hour or so afterwards. I don't know if it's me touching it that burns, or if it's the cream itself. Anyway, I'm breastfeeding the baby (who I just love and adore and do not associate with my pain at all) and when we're done with that I'm going to make an appointment with a pelvic/vulvar pain clinic that's a couple of hours away from me.

Thankfully my dh has been such a rock and a support. He's been so loving and caring through all this. I don't think I would be alive right now if he had been a jerk through this whole thing.

I've been lurking here for a while because I suspected vulvodynia early on. My pain is a constant burning that kind of moves around from near the opening to the clitoris. When the dr exams me, it doesn't hurt when he touches me, but it burns afterward. I haven't tried intercourse since the pain started, but I told dh (who is still recovering from a vasectomy) that when he's back in service I want to try it. I'm scared to try, but maybe if I take a percocet before hand and use lots of lubricant it won't be too bad.

This whole ordeal has taken a huge toll on me emotionally, psychologially, spiritually (I'm Christian) and physically. Thankfully the paxil and percocet help a great deal.

Do any of you take prescription pain meds to deal with the pain? I know they're addicting and I worry about that, but just a few hours of no pain does wonders for me. over the counter pain meds don't work.

Amy

Posts : 4
Join date : 2011-05-23

Back to top Go down

Don't want to be here.... Empty Re: Don't want to be here....

Post  noni Mon May 23, 2011 10:02 pm

Hey Amy,

Although I cant really comment on the pregs aspect of your story....I still can identify with the V struggle.

Pain meds? Ummmm from what I have read and from people I have spoken to about this...pain meds do not generally work for neuropathic pain...which basically most of vulvodynia is caused by. Again, vulvdoynia only implies vulvar pain...due to any number of causes but nonetheless still pain. But vulvodynia is not you regular, garden variety pain...nope its rather chronic and despite "normal" tissue appearance there is still that ever present burning, stinging, acid pain.

I had thought peharps I had a skin condition...but nope! Here I am 50mg of Amitriptyline (an SSRI antidepressant circa the 1960s) and I am getting "better". Some days even feel "normal" again.

Amy, look into a pain clinic or vulva clinic...regular Gynes dont know how to treat pain...especially vaginal/vulvar pain!!!!!

Im sure you have made yourself familiar with all the wonderful wisdom the fabulous ladies share on here ...

...we arent docs but we sure know a hell lot about this than they ever will. We live with this shite everyday. Not them.

Take care,

Noni
noni
noni

Posts : 242
Join date : 2011-01-10
Age : 36
Location : Ontario

Back to top Go down

Don't want to be here.... Empty Re: Don't want to be here....

Post  Sarah001 Tue May 24, 2011 10:04 am

If it is genuinely neuropathic pain medication should work pretty well. It's harder to get the meds to work when there's a muscle issue/mechanical issue. I still wouldn't rule out hormones in your case though, your body will take time to normalise (as you know after 3 babies) so it could still go away on its own. Be careful of the steroid cream, I was told if it didn't work in a week it probably wouldn't and to stop using it so I didn't thin the skin so be wary of that. I take 50mg of Ami which doesn't help me much at all and 200mg Pregabalin which helps some and I'm about to up that to 300mg. We're all different and some people get full pain relief from meds and others don't.

Isa Herrera's book Ending Female Pain has a section about post partum pain but from what I can see apart from avoiding any recent scars etc it's pretty much the same stuff as women who haven't given birth so that might be worth a read if you can get it in your library or buy it online.
Sarah001
Sarah001

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

Back to top Go down

Don't want to be here.... Empty Re: Don't want to be here....

Post  Amy Wed May 25, 2011 7:14 pm

Thank you both! I'll definitely check out that book and I do plan on making an appointment with a clinic after in done breastfeeding. Hopefully this won't stick around very long!

Amy

Posts : 4
Join date : 2011-05-23

Back to top Go down

Don't want to be here.... Empty Re: Don't want to be here....

Post  Sebby (Admin) Thu May 26, 2011 7:55 pm


Welcome Amy to the forum, im so glad you felt you could share your story with us.

I can so relate to the mental suffering that having vulval pain brings..when it all started and drs were telling me it was all in my head or just saying there was nothing they could do I really wanted just to end it all. I am seeing a counsellor and have found it so helpful.

I also recommend the book that Sarah suggested. I am currently going to try the pilates..apparently it helps to relax the pelvic floor muscle...have just bought my Gym ball..just gotta inflate it!

I am on Pregabalin 400mg now..have currently been unable to do the biofeedback (Dr Glazer) due to a dodgy vaginal sensor and am awaiting my new one...ARGHHH!! am getting right fed up as it seems to have got lost between New York and London!!

Anyway dont give up as there is a lot of things you can try..I was at my best when I was doing the biofeedback and with the Pregabalin combined

As for sex dont rush into intercourse at first..try lots of foreplay and get your vulval used to that

Good luck and dont give up!!
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

Don't want to be here.... Empty Re: Don't want to be here....

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