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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


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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