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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: 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: 8

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 …

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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: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

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


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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