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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 3

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

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: 10

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


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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