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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

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.

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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 …

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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 …

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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 …

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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

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


Bartholin's cyst surgery?

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Bartholin's cyst surgery?

Post  jenn31 on Mon Sep 30, 2013 11:28 pm

Hi ladies!

Wow, it's been a while since I've been on here, hope you are all hanging in there! The good news is that after my vestibulectomy, I am almost 100% pain free!!! That is truly wonderful. Bad news, my stupid surgeon messed up and covered my Bartholin's glands, and I've now developed two big Bartholins cysts. I went to Alana's awesome GYN, and he said my best option is removal of the cysts and both Bartholins glands. Now I'm terrified for a number of reasons. One, I won't be able to get lubricated anymore after the glands are removed. Two, this surgery has a high risk of complications, and pain is the biggest one!! A lot of women develop scar tissue that causes pain with sex. The whole reason I had a vestibulectomy was so that some day I could have pain free sex! I feel really depressed and devastated, like this is a cruel joke. Have any of you ladies had Bartholins cysts? Can you advise me? Thank you!

Jenn

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Re: Bartholin's cyst surgery?

Post  Alana3 on Mon Sep 30, 2013 11:47 pm

Text me

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Re: Bartholin's cyst surgery?

Post  mary jane on Sun Oct 06, 2013 3:18 pm

MY VULVODYNIA WAS CAUSED BY BARTHOLIN CYSTS !
don't do the surgery !!!!!!!!!!!!!!!!
if done wrong, you could suffer from pundendal neuralgia for the rest of your life.
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Re: Bartholin's cyst surgery?

Post  jenn31 on Mon Oct 07, 2013 9:00 pm

Hi Mary Jane,

Oh my gosh, could you tell me what happened? I am really scared because I don't know of other alternatives, my cysts are getting big and causing muscle pain. Did you have yours drained, or the entire gland removed?? What happened?? Did they make a mistake?? Please get back to me!

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Re: Bartholin's cyst surgery?

Post  mary jane on Tue Oct 08, 2013 4:50 pm

lubrication isn't the issue here, you could buy an advanced formula lubricant for post-menopausal women.
Ask you doctor about nerve damage after this surgery. If the doctor is not careful, he/she may leave you in chronic pain for life.
Where do you live? there is an expert doctor in London for this type of surgery.
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Re: Bartholin's cyst surgery?

Post  mary jane on Tue Oct 08, 2013 4:51 pm

I had mine lanced 4 times, and now I have nerve pain after the latest cyst which ruptured on its own.
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Re: Bartholin's cyst surgery?

Post  jenn31 on Tue Oct 08, 2013 9:08 pm

Hi Mary Jane,

Thanks for the reply. I live in Orlando, Florida, and have a good GYN. It is scary, because I've read so many bad things about this cyst stuff, but I don't have a lot of alternatives. Mine are growing bigger, and causing me muscle pain. So yours were all drained, but you didn't have the gland removed? Did they use a catheter after draining? Yes, I am definitely going over all my concerns with my GYN.


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Re: Bartholin's cyst surgery?

Post  mary jane on Tue Oct 08, 2013 9:56 pm

I didn't remove the gland because I simply did not trust the doctors who offered it to me. I only had a catheter placed in once, but it just delayed my healing time.
You need someone with a lot of experience and who actually wants to do this the right way and have patience, because this is basically MICRO SURGERY we are talking about.
This gland from hell has ramifications like nobody's business !

I am so sorry to hear you have BOTH glands turned into cysts, I only have one but my god, does it hurt !

Maybe I sounded paranoid in my first post, now that I look at it again. My illness is making me irrational sometimes, because of despair.
Actually, if you do pelvic floor therapy after the surgery, you have a better chance at pain-free intercourse.

Also, please let us girls know how it went for you.

I really hope you get well, no one deserves to suffer with this.

karma
xxx
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Re: Bartholin's cyst surgery?

Post  jenn31 on Thu Oct 10, 2013 9:45 pm

I'm really sorry you are dealing with so much pain. Did your cyst ever come back after rupturing? It just feels like such a vicious cycle here, because if I don't get the gland removed they say the cyst will just come back over and over. I really don't know what to do, and it is painful! Crying or Very sad 

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Re: Bartholin's cyst surgery?

Post  mary jane on Thu Oct 10, 2013 10:05 pm

yes, once you get a cyst, they always come back. I used to have them once a year.
but this last one might have been infected, and when it ruptured it might have set the gland on fire...nerve pain resulted fromthe ifnection. .... I DON'T EVEN KNOW ANYMORE what I have, I'm not even sure it's vuvldynia.
Bascially, my BARTHOLIN GLAND HURTS. I have non stop PULSATING of my right vulva and when I walk I feel a cyst/lump there which does not exist ! I have zero inflammation on the outside, zero burning, no yeast no itchiness.
MY GLAND HURTS, maybe it's atrophying, god knows what.
I'm currently keeping my pain level under control with Naproxen. I take no other drug. (my pain is a constant 3/10)

I REALLY FEEL for you girls, no one deserves this type of debilitating pain and discomfort.

I never had the surgery because I feared nerve damage and dyspareunia.
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Re: Bartholin's cyst surgery?

Post  mary jane on Thu Oct 10, 2013 10:08 pm

However, if you get a doctor which has done this surgery a lot of times, you should be alright.
Careful if you do get the surgery, you will recover in a few month's time, and after that I suggest you try pelvic floor therapy for the scar tissue.
Also, please buy HEALGEL or something similar. And be very patient.

I really wish you all the best if you go ahead with this!
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Re: Bartholin's cyst surgery?

Post  jenn31 on Fri Oct 11, 2013 7:41 pm

Hi Mary Jane,

Thank you so much for sharing, and I'm so sorry about everything you've been through. I know this might not be good, but if they removed the gland, I'm wondering if it would help your pain? Maybe the gland itself is infected and needs to come out? So sorry, I am not sure if that would help or make it worse. Ughhhh I hate dealing with these stupid cysts! Did you ever have two, or was it always the same side?

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Re: Bartholin's cyst surgery?

Post  mary jane on Fri Oct 11, 2013 8:44 pm

I will discuss this option with my doctor, I'm 100% sure it's the gland that's causing me pain, it feels inflamed, and there is a direct correlation between inflammation and nerve pain. And I clearly see in the mirror it's 5% more swollen and red comparing to the other one, but the doctor did not agree with me (crazy).
I am becoming so obsessed with my illness it's all I can think about. I want the gland out
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Re: Bartholin's cyst surgery?

Post  mary jane on Fri Oct 11, 2013 8:47 pm

mine was always on the same side.
At 19 years old, I went to a chlorinated swimming pool with really cold water. Next thing I know, 1 week later I have a cyst.
I used to get them once a year. Honestly, I would rather have recurring cysts every year than this aching pulsating pain.
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Re: Bartholin's cyst surgery?

Post  jenn31 on Tue Oct 15, 2013 4:15 pm

I know surgery is really scary, but it might help to have the gland out. I also read that pelvic rehabilitative therapy helps after you heal, which keeps the scar tissue from getting bad. Might be worth it! I go to PT, and it has really helped my pain. Hoping you feel better!

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Re: Bartholin's cyst surgery?

Post  mary jane on Tue Oct 15, 2013 4:23 pm

thank you, I am currently trying to find a doc who is willing to help me with this Smile
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Re: Bartholin's cyst surgery?

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