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» What's next?
Tue Apr 24, 2018 4:01 pm by jennyk2

» Pain management - what works for me
Tue Apr 24, 2018 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

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: 4

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: 3

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

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


What on earth is wrong with my hoo-hah?

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What on earth is wrong with my hoo-hah?

Post  tensetensetense on Tue May 24, 2016 12:16 am

Hi all
Will try to be brief. 40s female, 15 years married, childless by choice.  Sorry if TMI!

My entire life sex has been tight. Painful. I can't relax. Same with pelvic exams.  Tampons? Hell no.  No sexual trauma in my past and I am sex-positive, comfortable with my body.

My husband is normal size. Very patient.  The reason it has taken a back seat is that we have an otherwise nice intimate life - we enjoy ALL forums of sensuality and there's plenty to do and we are both able to achieve orgasm in other ways. But he prefers sex.  We have tried positions, tons of lubes, kegels.  I cannot relax. It makes it worse.  Usually I just enjoy all the foreplay and feel very ready, we add lube and hell no.  I suffer through it usually hoping it ends quickly.

If I have an orgasm manually with him, it has to be AFTER penetration because after orgasm I am even tighter and there's just no way - and very sensitive.

I have had the same gyno for 10+ years. She's good, but short.  Quick. But a ball buster and I appreciate that because when it comes to labs and referrals, no one beats her.  She knows I am tight. I just suffered through it. I am kicking myself for not dealing with this 10 years ago!!    I asked her about it last time and even had my husband come in.  She just said I need to learn to relax.  Uh, as if I have not been trying that.  And I think she questions if am lubricated.  We add a ton of lube on top of my natural lube, and I do produce enough.

She prescribe Estradiol (sp) thinking my tissues were having trouble. I had a hysterectomy (including ovaries and cervix) two years ago since I was not having kids, they could do it laporascopically, and I had adenomyosis.  I do not regret the hysterectomy at all. I also take .0375 of estradiol 2x week as hormone replacement but my menopause symptoms are almost nil.

About a year prior to that I started to get UTIs. Never had one until then.  Azo and antibiotics worked but they kept coming back. I saw a urologist. She put me on oxybutynin, scoped my bladder and found no problems. The medication helped, but the blurred vision is KILLING ME.  She was not receptive so I got a second opinion.  By then I was having increased OAB TOO!!  Talk about nightmare.

Not OAB from stress -- like sneezing or laughing - mine is urge.  I am on a great bladder diet, no citrus, no soda, no booze, enough water, proper shape, eat well.  Lots of visits to urologist when I am having bladder pain. They cannot figure it out.  Tried all the classes of drugs: vesicare, mybetriq (sp), and now back to oxybutyin and I am just dealing with the vision.  I tried cutting the pills i half and my OAB came back. Sometimes I have to cancel business meetings (I work from home so I am safe here).  Sex? Uh, no.  Barely ever.  My poor husband.  We have intimacy in other ways but I know it's killing him.  He is a saint.

Now I am starting to have minor cognitive issues. I can't write (apologies if I repeat words in sentences) and I write for a living.  This is a dagger. I have to get off this drug.

Here is where I am --

I was referred to a pelvic floor phys. therapist (are they MDS or no?) and see her in a week. Fingers crossed.  Three appointments already booked after.  To be honest I tried insertables to see if I could "fix"myself and it was horrible. I want to be prepared for these visits.  The THIRD opinion uro I saw (a gyno urologist) told me the OAB and pelvic pain are NOT related. Although PT can help OAB.  All my urologists told me that if medication is out, I have to consider botox in the bladder or the nerve interstim thing (both freak me out). The idea that 20% of people that do the botox have to self-cath for up to ONE MONTH after is a deal breaker, I can't do it....I highly doubt at least. I travel, I go to meetings, I am out a lot, and I also am not good at that kind of thing and do NOT want to make my husband do it - talk about ruining the mystery and sensuality of my body!

And I asked her - can you add some botox to whatever muscles are related to my pelvic floor so I can have pain free sex and she no, totally not in the same area, not even an option. So it only solves ONE problem any way.

I am so depressed. I am also trying cognitive therapy.  Since I work from home I make sure I urinate ALL the time.

I have never had pain-free sex. Again, I am very down on myself because I never told anyone and always thought it would be better in time and since we did other things for intimacy it wasn't a big deal, but not my husband is starting to be like...wtf.  When we DO have full intercourse, I feel like I have to pee, on top of the pain, even if I went right before, and I cannot relax and it hurts like HELL.  But I pretend it does not.  Talk about shame. I just want him to be happy - it is so unfair to him.

Has anyone had a similar situation?  Any advice what I tell my urologist and/or PT?

Thank you!

tensetensetense

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Re: What on earth is wrong with my hoo-hah?

Post  emalita on Tue May 24, 2016 12:39 am

Hi,

Nothing is TMI for this forum Wink

I can certainly relate. My fiancé and I have been together for 12 years, but we haven't been able to have sex for over a year now. I feel like such a horrible partner.

I personally have not tried PT because my pain is not currently related to pelvic floor dysfunction, but I will be using at home dialators once my pain is at a good permanent level. I have heard that PT can be a life saver, and from what I understand, the therapists have a lot more tests/treatments than what you can do at home...they can test your tightness and pinpoint the worst areas. So I think you are absolutely doing the right thing by seeing a physical therapist. I've also heard most women find that the therapists are very kind and gentle because all they do is deal with this type of pain.

As far as your UTIs go, have you tried the supplement D-Mannose?

I'm not sure why your doctor would be so dismissive of your conditions being related to each other. I know my pain has caused urinary frequency and urgency in the past when it had nothing to do with a UTI. Everything is very closely linked down there; so don't give up hope that finding relief for one will lead to improvement in the other.

I hope you find relief soon! Keep us posted on how your appointments go sunny

emalita

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Re: What on earth is wrong with my hoo-hah?

Post  kell on Tue May 24, 2016 2:11 am

I appreciate your post and I feel so much for you - I just never thought these type of issues even existed and I feel like I (and we) are all cheated somehow. I hope you are able to get some help with PT and hope also you will report back as to your experiences. I understand SO MUCH when you say you feel bad for your husband and its so unfair. I pretty much have had infrequent sex with him for a few years now and just endure the pain because I know a man needs that, but I miss having goddamn orgasms like I used to! Why does this have to happen.

kell

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Re: What on earth is wrong with my hoo-hah?

Post  PainBlogger on Tue May 24, 2016 11:05 am

I hope you find the pelvic PT helpful. It's definitely helped me get my overreactive and tense PF muscles back under control. (I won't repeat here what I've posted elsewhere, but you can read about my problems and progress here if you like: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement ) In my case I hadn't always had painful sex - it was fine before I got the UTI and thrush that started my issues - though interestingly I've never found tampons that easy to use.

Is duloxetine an option in the country where you live (I'm guessing the US) for OAB? I'm not on it for OAB (though I did have a lot of OAB symptoms when my problems started) but as it also can help pain it might do two jobs for you. I've had no side effects on it other than good ones. Acupuncture is another treatment with virtually no side-effects that could be worth a try if you have access to it.

In terms of your first PT appointment, the best advice I can give is for you to go in with some written notes and any questions you want to ask. Maybe keeping a pain diary/bladder emptying frequency diary would be helpful. Good luck.


PainBlogger

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Re: What on earth is wrong with my hoo-hah?

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