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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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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 …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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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: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

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


Suffering 2 years, diagnosed 5 months ago

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Suffering 2 years, diagnosed 5 months ago

Post  cndianwoman on Wed Apr 16, 2014 2:32 am

My name is Sara.

I'm in a relationship of 4.5 years, about 2 years in (shortly after moving in together) our sexlife went downhill on his part. I was always up for it and was turned on by him and wanted sex but he only wanted it sometimes and eventually after being turned away so many time I realised it was really hurting my self esteem and making myself feel unwanted and unnatractive so I stopped purseuing him for sex and just let him come to me. Eventually I felt like it was no longer that he was attracted to me but instead that he just was horny and wanted sex. I spoke to him about it several times and he would get better for a while but then things would always go back to how they were.

Then 2-3 years into the relationship it suddenly started hurting to have sex. Sometimes it would get better enough with enough lube and patience that I could actually enjoy myself but it got worse. When our sex life was in severe decline and I tried to talk to him about it once more he tried to blame the pain I had and "not wanting to hurt me" I called him on that and said no, this started long before the pain did I WANTED to have sex. But still out sex life petered out and finally stopped.

Over the period of about 5 months I went to my nurse practitioner who sent me to a gynaecologist who diagnosed me with Vestibulodynia. We hadn't had sex once during that time and after the diagnosis I felt hopeless and blindsided.. I expected her to tell me this was something in my head or that it was vaginismus (the only thing my own research sounded similar to). She told me there was no tightening of the walls like you often see when people start having vaginal pain (which becomes the vicious cycle of your body expects pain, so it tenses, which causes pain, etc.).

She mentioned that maybe surgery could help and I was in shock. I came home with an appointment for 3 months later and instructions to avoid any soaps, bubble baths.. etc etc. She told me to do exercises with numbing stuff and to try to stretch my entrance but the whole thing appals me plus I can't help but wonder what this can honestly do in the long run. I can't bring myself to do them at all.

I thought about the option of surgery and finally decided that this is what I wanted to do. I went back to my appointment ready to tell her to schedule me in. Instead she did another physical exam and told me she now did not think surgery would be an option because of WHERE the pain was, there's really nothing they could remove.

I went home with a prescription for a low dose of amitriptyline to try to numb the nerve endings and treat the pain (and with the plus of being a mild antidepressant to help deal with all of this) I've now been on it for about a month but have noticed no difference, except a bit in my mood.

Tonight though, I'm feeling lost and like my boyfriend is completely insensitive to how I feel.

What drove me to look for support right now is that for the last three nights in a row he (so romantically) said something like "So, wanna fuck?" Knowing full well that I will say no. He then says, "Well you're no fun." And sometimes that's it and sometimes he bugs me more. It doesn't help that his approach is so blunt and in no way trying to get me in the mood but also his physical approach is to just grab part of me, like it's some giant turn on for him to just reach for my lady parts.

He knows what I have and that I feel awful and I've even outright told him that it makes me feel worse when he pressures me and then huffs and turns away. I've told him it makes things even worse for me but just like every problem we discuss he gets better for a while and then goes back to old habits again. I want to scream at him to not touch me every time he does this but he just doesn't get it or doesn't care. I'm going away for 5 months in May for a job and I can't tell you how much I'm looking forward to not having to worry every time I get into bed that he's going to ask me to have sex and turn away with both of us feeling resentful. I haven't even tried to have sex in so long and I know the pain has only gotten worse (each exam I had was worse than the last) and I'm too afraid to even try.
I just don't want to be touched but all he does is moan that I won't have sex and I feel awful.

I'll add that I'm currently waiting for an appointment with another gynaecologist who is apparently a bit of an expert with this and I'm hoping that he has some answers. I was told it's about a 6 month waiting list to see him.

cndianwoman

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Re: Suffering 2 years, diagnosed 5 months ago

Post  zarli on Wed Apr 16, 2014 10:29 am

I think the time away will be great for you to get to know your self again without him being your focus. Just out of interest is he like into himself such as fitness and looks ?

zarli

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Re: Suffering 2 years, diagnosed 5 months ago

Post  meelie on Wed Apr 16, 2014 9:43 pm

I will be 67 in June, life 4Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6Love does not delight in evil but rejoices with the truth. 7It always protects, always trusts, always hopes, always perseveres.is short.
Honey, I know you love him but I also know there are better people out there. You should not have to live like this, you should not have to keep "explaining" this to him. Get out now and find someone who deserves you. "This ain't a dress rehersal it's the real thing, the only life you will have, find someone who deserves you.
Sorry, I don't know how to sugar coat anything.

meelie

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Re: Suffering 2 years, diagnosed 5 months ago

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