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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 3

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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: 10

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


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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