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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


Do you think this problem is linked to trauma?

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Do you think this problem is linked to trauma?

Post  Sadgirl on Mon Mar 18, 2013 12:37 pm

I found myself up again tonight, troubled by my inability to have painless or fulfilling sex. I found this show on "MTV True Life, I can't have Sex" and I feel like I'm watching my life, it's so sad. I really wonder what is the connection to this problem and if trauma plays a part in this horrible condition? I was raised in a home where it was pounded in my head my entire life that sex was a bad thing, not natural, not something fulfilling or that one should enjoy, not a normal part of a healthy life. Basically my parents where religious nuts and if you had sex you'd get pregnant, get AIDS, it would end up ruining your life and the aids would kill you and you'd burn in he'll for all eternity. It sounds crazy as I now know that it is, but that's what I was taught from day one. I was diagnosed in 2005 due to horrible pain during and after sex, that's when we were able to have it. When we could actually have sex I would pay for it for the next 48 hours and knew I would live in the bathroom and would have excruciating lowerback and pelvic pain. I had an exam and was diagnosed with IC intersestial Cystitus I had one DMSO treatment that almost landed me in ER. I spent two days curled up in a ball crying, in
excruciating pain, and on pain killers and the Dr decided (as well as myself) that this
was not the best option for me, this specialist said in all the 30+ years he's done
treatment for IC he's never seen a case as bad as mine and referred me to a urologist at
a state of the university hospital that focuses on women's health. That is where I go
now, my urologist has Confimed my diagnoses of IC and pelvic floor damage. I have
tried medications (mostly musle relaxers and pain preventatives), and have done physical
therapy, and counseling. I do wonder how fear and lack of trust play into the fact that
I'm unable to have or have pain free intercourse. I never had issues with painful sex or pelvic pain after intercourse even after I got married in 2003, but I was attacked and raped in 2004, I had my first child in 2005 and I guess I've always wondered if this was
caused by my rape or my c-section when having my baby. I have spent a several years
in counseling dealing with the rape and assault, and feel that I have emotionally, physicologically, mentally, and have moved onto helping women and men dealing with
this same issue. I have moved from being a victim through survivor to thrivor, but I still
struggle with this disabling pain and the lack of desire to want to connect sexually
knowing the pain that it will entail and fallow. I know I hear that a lot of this is related
to anxiety and fear and although my mind is saying yes I feel like my body regardless
says no. I was wondering who else has had some type of trauma like myself that has
lead to this condition and inability, whether it be molestation, sexual abuse, rape, trauma, or being raised with the belief that sex is somehow something that is wrong or something that one shouldn't do or enjoy anyways and how this all plays into it? I know
it takes brave and amazing poeple suffering from this horrible issue to have these
discussions but now that I've found others suffering from this very under discussed and misunderstood issue I'm asking hoping someone out there is brave enough to admit if they have suffered from any of these same things and if they think it has impacted them or is linked to this issue? Thank you, and good luck to you all and your struggles with this aweful condition.

Sadgirl

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Re: Do you think this problem is linked to trauma?

Post  Alana3 on Mon Mar 18, 2013 1:19 pm

I think it could be a little of both especially when you have had the encounter you had of course you're going to be tense, but I definetely know its NOT in your head this is a real thing. I have not been in a situation like yours, and my pain was horrifying. I don't really know what to say, but do you have both IC and Vulvodynia and where are you located? I'm sorry to hear all that happened to you that's horrible but I'm glad you are able to overcome it and be a role model for others who have been thru it. Where are you located and getting your treatment at?

Alana3

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Re: Do you think this problem is linked to trauma?

Post  Kathy100 on Mon Mar 18, 2013 3:55 pm

Hi, I haven’t suffered from the same terrible things as you and I feel for you. It’s great to hear that you have come through all of that and are now helping others. When I was finally diagnosed though both my doctor & the pain management consultant asked me if I had been abused and/or raped as they said that this type of trauma can cause it / be linked to it. In my case I wasn’t & I have horrible burning pain that isn’t in my head. Mine started out of the blue with pain during & after sex followed by cystitis.
I do think when you are expecting something to be painful because of previous experiences then you start to tense more anyway - I know I do and that can make it worse. My doctor also said that the body remembers pain and reacts to defend itself??

Kathy100

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Re: Do you think this problem is linked to trauma?

Post  Sadgirl on Mon Mar 18, 2013 7:28 pm

Thank you for your replies, I'm seeing a urologist in Portland, OR at OHSU. It's a travel from where I live but it's worth it, when I started my physical therapy there several years ago I traveled there once a week just trying to get the pain under control. Since then our local hospital has gotten a physical therapist that helps with IC patients and I've seen her as well, she had me do all the same exercises but it wasnt as successful. The physical therapist I've seen at OHSU did stretching, exercise, chiropractic adjustments, and a little message therapy, the one her locally just has me do these hard exercises with no warm up, cool down, stretching, that's it. When I left I felt like I was hit by a bus and was in worse pain than when I had sex. I recently had a consult with a physical therapist that works at the pain management clinic I've been referred to, but she discussed wanting to do internal work with me, and honestly didn't explain much beside that and I don't think I could or would be comfortable enough to do that, not even with my husband let alone a stranger. Maybe this is something either of you have tried, and if so is it helpful? There are times I feel if they told me to live off pickles and stand on my head 5 times a day to help I would. I've tried changing my diet as several books suggest but I don't eat the trigger foods as they put it due to my IBS anyways but I haven't noticed any flare ups the few times I've indulged so theres only so much I can do. It is hard, I want to satisfy my husband I know men have needs and stay pretty creative to keep him happy but it still would be nice not to have to dread being intimate knowing I will be up all night and in such pain when I do. Oh I also read an article and filled out a survey and it asked about the use of pot (yes a smoking drug) as it is legal in some states and is used for medical reasons, I guess for IC and if it helped. I never have but if you all have tried this as a medical choice did it help?

Sadgirl

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Re: Do you think this problem is linked to trauma?

Post  Alana3 on Mon Mar 18, 2013 7:41 pm

If pot is legal where you are (and I'm pretty sure it is) why not try it? Can't hurt and it really cant mess you up than anything else you've probably tried. Smile

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Re: Do you think this problem is linked to trauma?

Post  Kathy100 on Tue Mar 19, 2013 2:33 pm

I've only had one physio (physical therapy) session so far. The therapist asked all about my history (and listened) checked how flexible I was and then did an ultrasound massage on my back followed by some trigger point releasing on my back, backside & legs as I have pain there as well as the V pain. This was gentle and really helped my back pain. She has also given me some exercises to do at home & guidelines on what not to do too. I do feel as if I'm getting somewhere at last. She is going to do some internal work but as I've a lot of pain there she wants to sort out my lower back pain first. I'm not looking forward to it because I know it's going to be painful but I'm going to give it a go....

Kathy100

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Re: Do you think this problem is linked to trauma?

Post  Alana3 on Tue Mar 19, 2013 2:50 pm

Its really not as bad as you think- you just have to be open for it- which you are if you're going to do it. Once they release those muscles you are going to feel so much better I promise! Smile

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Re: Do you think this problem is linked to trauma?

Post  Kathy100 on Wed Mar 20, 2013 10:57 am

That's what I'm hoping ...

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Re: Do you think this problem is linked to trauma?

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