Vulvodynia Support
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» Hope to all my suffering ladies
New Here so Frustrated! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New Here so Frustrated! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New Here so Frustrated! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New Here so Frustrated! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New Here so Frustrated! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New Here so Frustrated! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New Here so Frustrated! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New Here so Frustrated! 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 Here so Frustrated! 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


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Post  Alana3 Tue Sep 25, 2012 6:40 pm

I have been having problems since I was about 15. I had erratic, heavy periods which would stay for 2 weeks every 2 weeks. I was taken to a gyn who lectured me the entire time (while telling me that I was making it up so I could have free sex without the chance of getting pregnant). None of this was true, I was in a lot of pain and wanted relief. She never told me what she was doing and shoved the spec in me where I tensed up and freaked out and did the whole finger in butt thing (which I have never had after). So my first experience was horrible, but I got BC. And now I tense up whenever anyone goes there.

After being on ortho and enjoying an amazing sex life for a while, I decided that I wanted to switch to a different BC which made me crazy and bleed for forever, here is where sex started becoming impossible. I made excuses saying I never have it that's why it hurts, later I was put on Yaz which I had the same sex issues. I have since gone thru other birth control and have been on Seasonique (bled for 10 weeks straight), and Mircette, my current one.

Fastforward to about a year ago. I had supposedly an infection after infection where I was treated 27 times with different antibiotics where NOTHING went away. Finally, a urologist told me to go to a physical therapist who helped me like no other. I went to a doctor in Orlando and she right away said that I had endometriosis and IC and she wanted to do surgery for the endo and a Potassium Challenge for the IC. I wasn't convinced that this was for me. I knew that my skin there hurt, and felt like hell when I had sex not really endo related (a guy cant get past the opening-OUCH!)

So I went to a new doc last month. She put my on acyclovir (which is for Herpes but I don't have that). The pain went away somewhat but I ended up breaking out in hives. I have been on estrace, a compound of estrogen and lidocaine, benadryl, muscle relaxers, the acyvlovir. This doctor said that the only other thing I could do was take antidepressants, which I really don't want to do. That's a lie, I'm scared out of my mind to take them. She also said that this wasn't hormonally related, which I heard it was. I am so confused and so scared to take the antidepressants. I do want to feel better, but I feel like there has to be something more than those.

What do you girs do for this? Are there any other treatments? I am so sick of this, I want my normal sex life back. I cant get off the pill because I'll have my period for 2 weeks and I can't handle that either. I am sick of itching, burning and the feeling of having to pee sometimes. Is there hope that I can find some kind of treatment that won't make me gain weight, change my mood, have my hair fall out, etc, etc. Any advice will be great!!! (Sorry I know this is long and I'm complaining a lot, but I'm at my wits end)! Thanks!

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  LillyK Wed Sep 26, 2012 5:33 am

Acupuncture is what worked/works for me! That and getting off all pills. It may not be what you want to hear but it's worth it to clean up your diet and not put any meds into your body so that you can heal. Acupuncture could also address your endometriosis and IC issues as well. I would recommend looking for an acupuncturist who is trained to deal with female issues and can prescribe herbs. The other thing that works for some people (including myself) is to do an anti-inflammatory diet or a low-acid diet. Eat organic and healthy foods as much as you possibly can. You can beat it. It may take time but you can do it.

LillyK

Posts : 28
Join date : 2012-09-01

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Post  Alana3 Wed Sep 26, 2012 1:43 pm

Thank you! Yeah I want to get off everything for sure (except the pill I can't I've tried and bled for 6 months straight haha nice). I mostly take supplements, my diet isn't bad, and I'm at the gym or horseback riding at least 4 days a week. I am just so sick of feeling like I have a UTI all the time! Not to mention the burning, itchy ugh! I def don't want to go on anti's- they really scare me not only the dependency but the side effects too.

I actually am going for accupuncture on Friday. She isn't exactly for this, but said she was doing a lot of research for me and I trust her 100%. On top of that looking at a new doctor who actually specializes in v on Monday, we'll see what he says! I'm just so excited to possibly be taking a step in the right direction. I'm happy to hear that accupuncture works for you! Do you know what points she does and how often do you go? (Hope this isn't too personal to ask!)

The sad thing is, this doctor looked at me and automatically said surgery without taking the time to try other things first. So I don't really know for sure that I have endo or IC, but I'm sort of assuming I don't. I said no way, I don't want to go drastic when other things may help. But I'm adament about no anti-depressants (I swear they only put you on them so you don't care anymore). I'd be willing to try Estrace again or some other hormone in as little quality as possible, but nothing too crazy!

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  BpCookie Wed Sep 26, 2012 4:49 pm

Alana, I really feel for you hun. Ive tried many creams, many ointments, many pills, Ive ordered things that I saw on the internet, bought things at health food stores, if they said it would help I bought it. Nothing ever worked. I was so depressed. After about a year and a half of this Hell on earth, I was put on Lyrica and I thought that I had finally found the miracle pill. For about 1 and a half months I was out of pain and then it came back. uuuggghhh I just recently had a Pudendal Nerve RCA ablation done. I will know with in a few weeks whether it worked or not. If it doesn't help, then I'm back to square one. I will then cry, be depressed, be pissed off at the world, etc. Here is a small list of some of the things that I have tried. Maybe one or more of these may help you. Smile

Clobetasol ointment

Protopic ointment

Amitriptyline gel (this I recommend because it numbs the skin)

Neogyn

Gabapentin

Amitriptyline tablets

Emu oil

Vitamin E oil

Boric Acid suppositories

Ice packs (which does help)

A and D ointment (this helps a bit also)

Ive been on so many different meds that I can't remember their names. My best advice is, NEVER GIVE UP!!!! Always continue the search for relief. When it comes to your Dr.s, don't be afraid to speak up. Don't just follow your Dr.s orders blindly. Do research. There is something out there that will help you, you just haven't found it yet.

Hang in there. hugs

BpCookie
BpCookie

Posts : 209
Join date : 2012-01-25
Location : Arizona

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Post  Alana3 Wed Sep 26, 2012 5:49 pm

Well am I being stupid for not wanting to be on antidepressants? I will look into all of your meds! Now all of a sudden my bladder hurts, I really hope its not IC cuz that sounds even worse! But this is a new symptom as of last week how annoying. :/ do you ever feel like you need to pee a lot? haha

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  Alana3 Wed Sep 26, 2012 5:50 pm

BpCookie wrote:Alana, I really feel for you hun. Ive tried many creams, many ointments, many pills, Ive ordered things that I saw on the internet, bought things at health food stores, if they said it would help I bought it. Nothing ever worked. I was so depressed. After about a year and a half of this Hell on earth, I was put on Lyrica and I thought that I had finally found the miracle pill. For about 1 and a half months I was out of pain and then it came back. uuuggghhh I just recently had a Pudendal Nerve RCA ablation done. I will know with in a few weeks whether it worked or not. If it doesn't help, then I'm back to square one. I will then cry, be depressed, be pissed off at the world, etc. Here is a small list of some of the things that I have tried. Maybe one or more of these may help you. Smile

Clobetasol ointment

Protopic ointment

Amitriptyline gel (this I recommend because it numbs the skin)

Neogyn

Gabapentin

Amitriptyline tablets

Emu oil

Vitamin E oil

Boric Acid suppositories

Ice packs (which does help)

A and D ointment (this helps a bit also)

Ive been on so many different meds that I can't remember their names. My best advice is, NEVER GIVE UP!!!! Always continue the search for relief. When it comes to your Dr.s, don't be afraid to speak up. Don't just follow your Dr.s orders blindly. Do research. There is something out there that will help you, you just haven't found it yet.

Hang in there. hugs



And OMG that is overwhelming! haha

Alana3

Posts : 1093
Join date : 2012-09-25

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