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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

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: 22


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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