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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 …

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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, …

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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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some relief

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some relief

Post  jules on Sun May 09, 2010 3:25 pm

Hello,

I am going to again recommend pain clinics as a help to women w/ Vulvodynia. I visited numerous gynecologists. Gynecologists are not known for treating pain. I am feeling much more hopeful now that I have a connection with a pain clinic. I have had two spinal blocks. For me, neither helped. I take 3000 mg of gabepentin a day. That helped someone but, the pain was still there. The nurse practitioner at the pain clinic added Lyrica to what I am already taking. Lyrica seems to have taken the edge off of the pain. I still have some pain. But, when I look back, I have less pain. It is not as severe. I was taking 50 mgs of Lyrica. I will start taking 75 mgs of Lyrica today and I will continue to take Gabepentin. Lyrica is used for patients with nerve pain. My doctor also gave me a prescription for Vicodin. Vicodin for me, helps take the edge off of the pain. This has helped a lot. Also, I am being referred to physical therapy at a clinic that specifically helps women with vulvar pain. I also continue to use a foam donut to sit on. I can tell a huge difference when I sit in a chair without it. I am definitely not pain free. However, I have less pain. Will keep you posted. Feel free to ask questions...I want to help others who suffer with this complicated disorder.

Julie

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Re: some relief

Post  Sebby (Admin) on Thu May 13, 2010 6:41 pm

Hi Julie

I have thought about asking to be refered to a pain clinic.

I wasnt sure though as I am being refered to a vulval clinic within the next six weeks and Im wondering if I should wait to see them first?

I could ask my GP as I am seeing her in a couple of weeks (trying to get a smear done! and Im terrified!) so I could ask her to refer me.

I just wondered if it would complicate things seeing two consultants for the same disorder??

Sebby
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response-don't wait around in pain

Post  jules on Thu May 13, 2010 7:36 pm

are you seeing a gynecologist who specializes in Vulvodynia? My experience with every single doctor I have had (at least Cool is that they may be able to diagnose the disorder but, they do not usually know how to treat the pain. I went to a vulvar clinic to get the diagnosis (Mayo Hospital). the doctor i saw told me to increase my neurontin. but, when i called a couple of weeks later in horrible pain, she told me she didn't know what else she could do for me. I finally saw this so called specialist (one of 6 docs who treats the disorder in Minnesota). In that appt. I was the one who asked to have a spinal block referral. she didn't really seem to know how she would treat the pain. The pain clinics specifically address the pain. The doc and nurses at the pain clinic knew what Vulvodynia. they continue to add meds to try to help me. I would speak w/ your general practitioner to see what he/she thinks. I would not wait around for 6 weeks to deal w/ horrible pain. But..still keep the appt. at the vulvar clinic. that's my advice. let me know how it goes and what you decided. good luck w/ your pap smear. that is never fun, especially when you have pain.

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Re: some relief

Post  Sebby (Admin) on Sun May 16, 2010 9:45 pm

Yeah I will have a word with my GP when I go for the dreaded smear!!!

It does seem odd that a gynea who can diagnose Vulvodynia cant actually treat the pain!

I will keep you updated

sebby
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Re: some relief

Post  hopeful on Sun Jun 05, 2011 6:25 pm

Hi Julie,

Apologies if you have already mentioned this somewhere else on the forum but I was wondering if you could let me know where you got your donut cushion. I was thinking of getting one as I read somewhere that it could help and I work in an office so need to sit all day.

Thanks!
Christine

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foam cushion

Post  jules on Sun Jun 05, 2011 7:38 pm

here's the site i ordered from. i have four now. i'm collecting Sad hope it helps.

http://www.allegromedical.com/pain-management-c6489/molded-foam-donut-pillow-w-cover-p213745.html

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Re: some relief

Post  hopeful on Sun Jun 05, 2011 7:58 pm

Great thanks!

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Re: some relief

Post  noni on Mon Jun 06, 2011 12:02 am

Hey Jules

I have always identified with your posts. I was diagnosed with neuropathic vulvar pain back in March, although I had suffered for months with intense burning and aching. Jules, you are spot on with Gynecologists. They have absolutly no idea how to treat vulvar pain ...they just are completely clueless about vulvodynia. If you arent pregnant, have some STD, or need diflucan they are not interested in helping you!

I am on the Ami at 50mg dose. It helps. I had a relapse a few days ago...maybe it was something I ate or my anxiety in general these days. But how could I not be anxious? I am scared the pain will return. It has a mind of its own. So, basically, the burning made a comeback but has now disappeared into the vulva wilderness.

I think this is just something I will need to manage for the rest of my life. Just take it a day at a time. Continue with meds. I know meds arent for everyone, but pain is pain...and I am happy that some relief can be found.

Jules: Have you tried physio yet? I want to but my work health insurance does not cover this. And it aint cheap to treat pelvic pain. Geez, I couldnt have asked for a more expensive condition..






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Re: some relief

Post  jules on Mon Jun 06, 2011 3:25 am

hey noni, glad to hear you have some relief here and there. i don't have anxiety, just depression that is pretty much gone because of my Cymbalta. Currently, i am on Gabepentin 3600, Lyrica 150 mgs, Cymbalta 90 and Percocet..as needed. I do have a P.T. I have met w/ her a handful of times. interestingly enough, i really do not have pelvic floor issues. i do have pain from sex when it is from behind...the walls hurt. but, my walls are pretty good. I have generalized V. so, i can insert tampons and penis' (LOL)..but, it hurts all over the vulva and is often times on fire. My P.T is referring me to a acupuncturist. I will call this week. So far, i haven't had much relief from my P.T. and my meds are not working too well. I am looking at having surgery for a neurostimulator. the surgery will probably be in july. in the meantime, i'm hoping the Cymbalta helps. otherwise, Ami is next. years ago when i tried it, i did not like it. i tried it to get for migraine headaches. i'm still working w/ the pain clinic. they keep on pulling ideas out of a hat. as long as they do..i will be there to see what kind of magic they have for me. Surprised do you see a physio? Hope you continue to do well. i did have relief awhile back for a good few months...you always feel like it's too good to be true. Enjoy!!!!

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Re: some relief

Post  noni on Tue Jun 07, 2011 11:01 am

Hey Jules

I havent done physio yet...its expensive and work insurance doesnt cover it. Besides, I am pretty sure my muscles are not to blame for this hell. I have generalised V...meaning pain on the outside and all over. Not a specific area of pain.

I havent tried any other meds for V ... other than amitriptyline. Which I get bad days and good days with. Its a mixed bag really. The pain is so random and its hard to tell what brings it on.

I think alot of the younger gals on here in my age group have vulvar vestibulitis which can be treated with lidocaine and meds. This is where I get confused, since I have generalized unprovoked V pain...I am wondering why my specialist told me to try lidocaine...I havent received it yet because I had to put ina special order in the pharmacy. I am willing to try anything. I ofcourse have a gel pack in the freezer just in case...

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Re: some relief

Post  Sarah001 on Tue Jun 07, 2011 12:04 pm

I've got constant unprovoked generalised pain too and I was given lidocaine to try. It doesn't mean physio won't work either, last November I thought I was heading into provoked pain only with biofeedback only to find it flared back up again but it shows it can help. There seems to be some confusion about physio only being for VVS and it's not, it's for any type of V.
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Re: some relief

Post  jules on Wed Jun 08, 2011 2:43 am

I will second Sarah's comment. P.T. is for all types of Vulvodynia. The pelvic walls generally are not the cause of the pain on the outside (could be for some). The pain in the walls for me are secondary to my pain on my vulva. When you have burning pain on the vulva or inside the vagina, without realizing it, you tighten up your pelvic walls. as a result they get tight and for some people, they spasm. For me, they aren't too bad, but i do feel them and they hurt when i have sex in certain positions. If you can calm the walls on the inside, it's possible it won't be as bad on the outside???? It would be worth at least having them checked out by a P.T. who specializes in pelvic pain disorders. as for the lidocaine, it can burn the skin...but, not all women. i can now use it w/out the burning. it generally burns for a couple of mins. it only numbs me for a very short time. But, like you said...try it all! good luck!

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Re: some relief

Post  noni on Wed Jun 08, 2011 9:42 am

Thanks ladies.

I really appreciate your comments.

Where would I be without this forum ?? Surprised
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Re: some relief

Post  jules on Thu Jun 09, 2011 10:32 pm

it's so nice to be able to speak freely about pain and treatment options. This forum and our facebook page has been a huge help for me. i stopped checking this forum because i was so busy talking on the facebook site for women w/ vulvodynia. you can write a lot more here and for those who want to remain anonymous, this is a good spot. Noni, are you in our facebook group? it's private. If you're interested, you can let sebby know. she'll add you. otherwise, this is fine too. where are you from? I'm from the US. hope your feeling ok today.

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Re: some relief

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