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» Acupuncture advice please
Yesterday at 11:27 pm by infinitelywondering

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

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 …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


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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