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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: 1

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 …

Comments: 0

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


Please Help. Almost 10 weeks post vestibulectomy and still in pain

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Please Help. Almost 10 weeks post vestibulectomy and still in pain

Post  Summer1 on Tue May 30, 2017 2:15 am

I had a vestibulectomy with vaginal advancement performed on March 24th for my provoked vestibulodynia. My surgeon told me she had only performed 15 vestibulectomy, but as a urogynecologist that performs many pelvic reconstructive surgeries a vestibulectomy was a piece of cake. Thererfore, I had her perform the surgery and now almost 10-weeks later I regret having the surgery because I feel worse than pre-surgery.

I initially had the burning and cutting feeling only when I had penetration. Now, without any penetration I am experiencing a hot/burning feeling along with a pricking feeling (like tooth picks stabbing me or little cuts) on my vestibule. I occasionally have this feeling like I have something stuck in my vagina (almost like a compact dry tampon) and I can't wear tight clothes without irritation. Also, I am able to sit, but I still have to position myself to a degree where my vagina isn't completely on my seat, as it causes soreness and a dull pain. And when I have been sexually aroused the pain is unbearable.

I am terrified by what I am experiencing and have been crying the last week because I have read that by week 8, your pain should be gone and week 8 determines if your surgery was a success. Yet, here I go on 9 1/2 weeks and it feels like I just had surgery. Because my doctor hasn't performed many vestibulectomy, I wasn't given detailed post-op instructions, so a few days ago, I tried inserting my dialtor and was in extreme pain and I don't know if I made things worse by using my dialtor. I also resumed exercising at week 7  (i.e. burpees, squats, mountain climbing)

Should I be in panic mode? Has anyone experienced pain at this point post-surgery or does it sound like I got a botch job and I should make an appointment with Dr. Goldstein to see if he can correct my problem. My doctor is nice, but because she hasn't done many vestibulectomy she hasn't given me that best post-op instructions. I even told her I was dry down there and did she cover my bratholin gland and she wasn't sure. (Yikes) At my 6 week post-surgery check up she said everything looked good, I still had stitches that needed to dissolve and follow up with her after week 10.

I don't know what to do. Any advice or input I would greatly appreciate. I feel like pulling my hair out because I feel like I am in a worse position than before. At 10-weeks can what I am experiencing be normal? Or is my panicking justified? Should I make an appointment with a more seasoned surgeon (like Dr. Goldstein) or once you have this surgery there is no way to correct a problem?


Thank you

Summer1

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Re: Please Help. Almost 10 weeks post vestibulectomy and still in pain

Post  mary jane on Thu Jun 01, 2017 9:30 pm

Summer1 wrote:I had a vestibulectomy with vaginal advancement performed on March 24th for my provoked vestibulodynia. My surgeon told me she had only performed 15 vestibulectomy, but as a urogynecologist that performs many pelvic reconstructive surgeries a vestibulectomy was a piece of cake. Thererfore, I had her perform the surgery and now almost 10-weeks later I regret having the surgery because I feel worse than pre-surgery.

I initially had the burning and cutting feeling only when I had penetration. Now, without any penetration I am experiencing a hot/burning feeling along with a pricking feeling (like tooth picks stabbing me or little cuts) on my vestibule. I occasionally have this feeling like I have something stuck in my vagina (almost like a compact dry tampon) and I can't wear tight clothes without irritation. Also, I am able to sit, but I still have to position myself to a degree where my vagina isn't completely on my seat, as it causes soreness and a dull pain. And when I have been sexually aroused the pain is unbearable.

I am terrified by what I am experiencing and have been crying the last week because I have read that by week 8, your pain should be gone and week 8 determines if your surgery was a success. Yet, here I go on 9 1/2 weeks and it feels like I just had surgery. Because my doctor hasn't performed many vestibulectomy, I wasn't given detailed post-op instructions, so a few days ago, I tried inserting my dialtor and was in extreme pain and I don't know if I made things worse by using my dialtor. I also resumed exercising at week 7  (i.e. burpees, squats, mountain climbing)

Should I be in panic mode? Has anyone experienced pain at this point post-surgery or does it sound like I got a botch job and I should make an appointment with Dr. Goldstein to see if he can correct my problem. My doctor is nice, but because she hasn't done many vestibulectomy she hasn't given me that best post-op instructions. I even told her I was dry down there and did she cover my bratholin gland and she wasn't sure. (Yikes) At my 6 week post-surgery check up she said everything looked good, I still had stitches that needed to dissolve and follow up with her after week 10.

I don't know what to do. Any advice or input I would greatly appreciate. I feel like pulling my hair out because I feel like I am in a worse position than before. At 10-weeks can what I am experiencing be normal? Or is my panicking justified? Should I make an appointment with a more seasoned surgeon (like Dr. Goldstein) or once you have this surgery there is no way to correct a problem?


Thank you


Hello,

I have never had a vestibulectomy, however what you are describing is what I had a long time ago.. it's just nerves being irritated or maybe some minor nerve damage in one of the areas. I would not panic, stay calm and ask for nerve pain medication to control the symptoms. In time you will be able to wean off them and you should go back to normal. Lyrica is considered to be the best. It has been over 2 months and you shouldn't feel this pain. I doubt the surgery was poorly done, it;s just that any type of surgery can have a minor risk of nerve damage. Even labiaplasty. Nerves do grow back at a rate of 1 mm per day so in time you should be healed. I have had countless surgeries for my bartholin glands and even with my most invasive one in 8 weeks I was back to normal. Can you also apply some topical lidocaine 5% ointment ?
the feeling of tampon stuck or inflammation when there is none is nerves sending wrong signals.
Again, this can sometimes happen and is no cause for panic. the solution lies in medication, pelvic therapy and topical numbing gels.

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mary jane

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Re: Please Help. Almost 10 weeks post vestibulectomy and still in pain

Post  mary jane on Thu Jun 01, 2017 9:33 pm

I doubt it was a botch job. Do NOT under any circumstance have any other surgeries just yet.
ANY surgery on the face of the planet has a very small tiny risk of nerve damage. Nerves do grow back or stop sending pain signals. You can act now and do gradual desensitiziation, take medication and when ready, you can try pelvic therapy.
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Re: Please Help. Almost 10 weeks post vestibulectomy and still in pain

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