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» What helped (and practically cured) my Vulvodynia
Today at 4:43 pm by Katiej

» How I cured my Vulvodynia!
Today at 8:24 am by Katiej

» Amitriptyline given for vulvodyina pain
Sat Nov 18, 2017 11:33 pm by WVR00

» Needing some reassurance
Sat Nov 18, 2017 12:28 pm by Katiej

» Amitriptyline Success and new-found love
Sat Nov 18, 2017 12:24 pm by Katiej

» New diagnosis, any advice whilst I wait for a specialist
Sat Nov 18, 2017 3:57 am by jungleclover

» Vestibulectomy today and no pain
Fri Nov 17, 2017 3:28 pm by Dsrt16

» vestibulectomy success
Thu Nov 16, 2017 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
Thu Nov 16, 2017 12:06 am by Jgreen81

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 …

Comments: 3

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 …

Comments: 1

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 …

Comments: 3

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 …

Comments: 0

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


Don't want to be here....

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Don't want to be here....

Post  Amy on Mon May 23, 2011 3:42 pm

but I'm glad there's a support group for this condition. Here's my story (I'm sorry if this is tmi):

Up until Jan. 2009 I had never had a uti and up until Aug. 2010 I hadn't had yeast infection in 10 years and I had never had a vaginal bacterial infection. In Jan. 2009 I started using Nair for the bikini area and I don't know if it was the Nair itself or just being hairless down there, but I started getting uti's and had 3 or 4 of them between Jan 2009 and June 2010. Last July I had 2 uti's back to back and thought I was getting a third one right after finishing the antibiotics from the second one, but it was just a really bad yeast infection. The yi I had before were just the minor itchy kind, but this was a deep burning. The day after the symptoms of this yi started I found out I was pregnant with our third child. With our 5yo son and 3yo daughter we had to go through everything short of ivf to get pregnant with them. We weren't sure if we wanted a third, but we knew we didn't want to go through fertility treatments, so we decided to leave it to God. I didn't think I could get pg on my own, so I didn't give it much thought and decided we would only have 2 kids. Well, God blessed us with our third son and with his pregnancy came all of my problems.

Throughout the pregnancy I constantly battled yi and bacterial infections. Even when I was infection free I still had redness inside the vestibule (I think is what it's called, not on the labia, but running from the opening to the vagina to the clitoris) and pain. The pain at first was unbearable and almost drove me to suicide. I laid in bed and cried all day. Over the course of the pregnancy it became more bearable and I was able to function as if it wasn't there with the exception of intercourse with my husband. I still cried just about every day. If I went more than 2 days without crying it was a miracle. I was so scared that the pain would not go away with childbirth. My obgyn was certain it was hormone related and would go away with birth. I was so scared that it wouldn't and I was scared that I would resent/hate the baby because of the pain and that my dh would leave me for lack of intimacy. I was also diagnosed with gestational diabetes when I was about 28weeks along, which I hadn't had with my first two.

Well I'm almost 7 weeks post partum now and the pain didn't go away. When all the normal postpartum stuff started healing up properly and I realized that old pain was not going away I almost went off the deep end emotionally. Between the anxiety of this pain and post partum hormones, it was a very scary time. But I was aware enough of my emotional distress to ask my dr for an anti-anxiety rx. He prescribed me paxil and that has been a life saver, almost literally. I'm actually happy now despite the pain. I haven't cried in well over 2 weeks now. I feel normal again. I haven't felt this normal since before I got pregnant. The dr also prescribed me percocet to help relieve some of the pain and I started out taking it 2-3 times a day, but now I'm taking it once a day and trying to wean myself off. At my 6 week post partum check up the dr. told me I had a "little bit of vulvodynia" from all the infections I had early on in the pregnancy and gave me a steriod cream to use. I've been using it for a week (suppose to use it for 4) but I'm not seeing any improvements. Not only that, but when I put it on, it burns for about an hour or so afterwards. I don't know if it's me touching it that burns, or if it's the cream itself. Anyway, I'm breastfeeding the baby (who I just love and adore and do not associate with my pain at all) and when we're done with that I'm going to make an appointment with a pelvic/vulvar pain clinic that's a couple of hours away from me.

Thankfully my dh has been such a rock and a support. He's been so loving and caring through all this. I don't think I would be alive right now if he had been a jerk through this whole thing.

I've been lurking here for a while because I suspected vulvodynia early on. My pain is a constant burning that kind of moves around from near the opening to the clitoris. When the dr exams me, it doesn't hurt when he touches me, but it burns afterward. I haven't tried intercourse since the pain started, but I told dh (who is still recovering from a vasectomy) that when he's back in service I want to try it. I'm scared to try, but maybe if I take a percocet before hand and use lots of lubricant it won't be too bad.

This whole ordeal has taken a huge toll on me emotionally, psychologially, spiritually (I'm Christian) and physically. Thankfully the paxil and percocet help a great deal.

Do any of you take prescription pain meds to deal with the pain? I know they're addicting and I worry about that, but just a few hours of no pain does wonders for me. over the counter pain meds don't work.

Amy

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Re: Don't want to be here....

Post  noni on Mon May 23, 2011 10:02 pm

Hey Amy,

Although I cant really comment on the pregs aspect of your story....I still can identify with the V struggle.

Pain meds? Ummmm from what I have read and from people I have spoken to about this...pain meds do not generally work for neuropathic pain...which basically most of vulvodynia is caused by. Again, vulvdoynia only implies vulvar pain...due to any number of causes but nonetheless still pain. But vulvodynia is not you regular, garden variety pain...nope its rather chronic and despite "normal" tissue appearance there is still that ever present burning, stinging, acid pain.

I had thought peharps I had a skin condition...but nope! Here I am 50mg of Amitriptyline (an SSRI antidepressant circa the 1960s) and I am getting "better". Some days even feel "normal" again.

Amy, look into a pain clinic or vulva clinic...regular Gynes dont know how to treat pain...especially vaginal/vulvar pain!!!!!

Im sure you have made yourself familiar with all the wonderful wisdom the fabulous ladies share on here ...

...we arent docs but we sure know a hell lot about this than they ever will. We live with this shite everyday. Not them.

Take care,

Noni
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Re: Don't want to be here....

Post  Sarah001 on Tue May 24, 2011 10:04 am

If it is genuinely neuropathic pain medication should work pretty well. It's harder to get the meds to work when there's a muscle issue/mechanical issue. I still wouldn't rule out hormones in your case though, your body will take time to normalise (as you know after 3 babies) so it could still go away on its own. Be careful of the steroid cream, I was told if it didn't work in a week it probably wouldn't and to stop using it so I didn't thin the skin so be wary of that. I take 50mg of Ami which doesn't help me much at all and 200mg Pregabalin which helps some and I'm about to up that to 300mg. We're all different and some people get full pain relief from meds and others don't.

Isa Herrera's book Ending Female Pain has a section about post partum pain but from what I can see apart from avoiding any recent scars etc it's pretty much the same stuff as women who haven't given birth so that might be worth a read if you can get it in your library or buy it online.
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Re: Don't want to be here....

Post  Amy on Wed May 25, 2011 7:14 pm

Thank you both! I'll definitely check out that book and I do plan on making an appointment with a clinic after in done breastfeeding. Hopefully this won't stick around very long!

Amy

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Re: Don't want to be here....

Post  Sebby (Admin) on Thu May 26, 2011 7:55 pm


Welcome Amy to the forum, im so glad you felt you could share your story with us.

I can so relate to the mental suffering that having vulval pain brings..when it all started and drs were telling me it was all in my head or just saying there was nothing they could do I really wanted just to end it all. I am seeing a counsellor and have found it so helpful.

I also recommend the book that Sarah suggested. I am currently going to try the pilates..apparently it helps to relax the pelvic floor muscle...have just bought my Gym ball..just gotta inflate it!

I am on Pregabalin 400mg now..have currently been unable to do the biofeedback (Dr Glazer) due to a dodgy vaginal sensor and am awaiting my new one...ARGHHH!! am getting right fed up as it seems to have got lost between New York and London!!

Anyway dont give up as there is a lot of things you can try..I was at my best when I was doing the biofeedback and with the Pregabalin combined

As for sex dont rush into intercourse at first..try lots of foreplay and get your vulval used to that

Good luck and dont give up!!

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Re: Don't want to be here....

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