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Sat May 26, 2018 5:21 pm by Aquaben

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Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


New Here so Frustrated!

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New Here so Frustrated!

Post  Alana3 on 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

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Re: New Here so Frustrated!

Post  LillyK on 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

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Thanks!

Post  Alana3 on 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

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Re: New Here so Frustrated!

Post  BpCookie on 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

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BpCookie

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Re: New Here so Frustrated!

Post  Alana3 on 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

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Re: New Here so Frustrated!

Post  Alana3 on 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

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Re: New Here so Frustrated!

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