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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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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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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

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 …

Comments: 2

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 …

Comments: 10

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 …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6


New here and in need of a pick-me-up

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New here and in need of a pick-me-up

Post  horsejumper on Thu Dec 04, 2014 1:37 am

Hi everyone,

I'm new here (but not to V, sadly). I wanted to share my story and see if anyone is has been in the same boat.

The first time I tried to use a tampon (I was around 13), putting it in was OK. Taking it out was absolutely agonizing. 9/10 pain. I've never used a tampon since. When I was around 15, I went to the gyno for probable ovarian cysts. Again, the internal exam was agonizing, but the doctor didn't say that it wasn't normal to be in that much pain. Had sex for the first time at age 19. It was OK. More soreness than the burning pain that accompany tampons/exams, and some deeper internal pain, but not enough that I stopped. Shortly after, I went to get my first annual, and my new doctor told me being in so much pain for the exam wasn't normal. He referred me to a very highly regard medical school's specialist for vulvodynia.

At this time my only symptoms were burning provoked by touching the vestibule and very occasionally unprovoked burning. My specialist did the Q-tip test, which I failed with flying colors--no pain on thighs, labia, etc., but everything inside Hart's line was bad. 5-9/10 bad, depending on the spot. Started me on amitryptiline, where I noticed some improvement and had the only pain free annual (with full sized speculum!) of my life. Improvement halted and she started me on gabapentin, too. I didn't notice much of a difference with that.

Last spring (2014), I saw a partner of my normal gynecologist who I'd never seen because I was having cyst pain and needed to get in right away. Cyst confirmed on R ovary, but more relevant is that he said he had great success with doing submucus lidocaine/methylpresinisolone injections directly into the vestibule. I thought "Why not?" and did the recommended 3 rounds of injections in 3 weeks. First round caused the entire vestibule to go numb--I couldn't tell when he was/wasn't touching me. That faded after some hours, and the remaining two rounds didn't do much.

At that same time, I began to have burning just before and especially after (but not DURING) urinating. I was so convinced I had a bladder infection that I had 3 urinalyses done at different doctors, and everyone said no bladder infection. Also, my clitoral area became more tender than normal to the touch, and after a few months, tender turned into painful. Touching it (even just the hood) is tender-painful now, even when I'm gently cleaning everything (water only) in the shower.

Saw a new specialist at the beginning of November. I was diagnosed with IC (although I don't have bladder symptoms, only urethral), confirmed vestibulitis and pudendal neuralgia, and added pelvic floor dysfunction (the only doctor to EVER consider an internal contributor to my pain). I started some meds for IC and am continuing on my amitryptiline (I've been on it for 3 years now). Next month I'm going to retry gabapentin. I also am using lidocaine cream in the vestibule as of last week, which HOPEFULLY will retrain the nerves and give me some long-term relief, and I'm seeing a pelvic floor therapist.

After 3 appts with my pelvic floor therapist, she said she noted a difference in color (my vulvar area looked healthier) and notable relaxation of my pelvic floor muscles. This, coupled with a day of no urethral pain, gave me a high today! And then I did a self-exam at home, complete with a Q-tip test. Absolutely no improvement in that regard. It was so painful I couldn't check the whole vestibule. Damn burning.

I just feel somewhat in a different boat than other people. I can have sex (at least I could, I haven't had any [not by choice] since clitoral pain started) with enough comfort to enjoy myself (though not pain-free). I was going with just vestibular burning for years, and then BAM! Clitoral and urethral pain. Honestly, the clitoral pain is what gets me the most right now. Not in that it's debilitating, but it's a worse kind of pain for me...I can handle the burning, which lidocaine also helps, but the tender-pain is scary in that it's not external--lidocaine doesn't do anything, and I can't just push through the pain even if I wanted to.

My new specialist has done a really good job explaining the mechanisms of the pain and what's causing it, and I understand what's going on. I just am particularly down about it right now. I'm 22 years old and just want to at least reclaim my clitoris. I'm not usually down about my condition at all, today was just rough with the elation then letdown.

To top it off, I have piriformis syndrome (related to the pelvic floor dysfunction; if you haven't heard of it, it's a muscle in your butt that the sciatic nerve runs through), and I've been cramping for two days straight after a week of relief. UGH.

End of rant. I really just wanted to share this with someone...anyone!

horsejumper

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Join date : 2014-11-30

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Re: New here and in need of a pick-me-up

Post  Alana3 on Mon Dec 15, 2014 7:58 pm

You sound like me and we have another thing in common- horses! I'm sorry to hear about this it sounds like me except I don't have IC tho it was suspected at one point. It sounds like you have non-provoked vuvlodynia, and I am very sorry to hear it Sad I really dont have any advice, but just to say hi and I know what you're going thru. And the frustration is the worst. Where are you from??

Alana3

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Re: New here and in need of a pick-me-up

Post  horsejumper on Mon Dec 15, 2014 8:29 pm

I'm from Michigan but currently live in New York. Yes, the frustration really is the worst. After living with this for ten years and trying to get it treated for three, I'm just ready for it to be done with!

horsejumper

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Re: New here and in need of a pick-me-up

Post  Alana3 on Tue Dec 16, 2014 12:59 am

What part of Michigan? I hear you just be patient (as if 10 years isn't enough to be patient with) have you seen Dr. Goldstein? He's supposed to be the best up there and he's in New York!!! And D.C. I think you should check that avenue out. I will caution you tho, most specialists don't take insurance, mine doesn't- but it was totally worth it!

Alana3

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Re: New here and in need of a pick-me-up

Post  meelie on Sun Dec 21, 2014 2:10 am

I talked to a spine specialist that told me about a spine stimulator that you can actually try before they insert it. It interrupts the pain signal from getting to your brain. Has anyone ever heard about something like that.

meelie

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Re: New here and in need of a pick-me-up

Post  horsejumper on Mon Dec 29, 2014 7:52 pm

I'm from southern MI. I actually see a specialist in Pennsylvania right now--Dr. Echenberg at the Echenberg Institute for Pelvic and Sexual Pain. He's amazing.

horsejumper

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Re: New here and in need of a pick-me-up

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