Vulvodynia Support
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» Hope to all my suffering ladies
Bartholin's cyst surgery? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Bartholin's cyst surgery? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Bartholin's cyst surgery? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Bartholin's cyst surgery? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Bartholin's cyst surgery? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Bartholin's cyst surgery? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Bartholin's cyst surgery? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Bartholin's cyst surgery? EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Bartholin's cyst surgery? EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Bartholin's cyst surgery?

3 posters

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Post  jenn31 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

jenn31

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Post  Alana3 Mon Sep 30, 2013 11:47 pm

Text me

Alana3

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Post  mary jane 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.
mary jane
mary jane

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Post  jenn31 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!

jenn31

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Post  mary jane 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.
mary jane
mary jane

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Post  mary jane 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.
mary jane
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Post  jenn31 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.


jenn31

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Post  mary jane 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
mary jane
mary jane

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Post  jenn31 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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Post  mary jane 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.
mary jane
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Post  mary jane 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!
mary jane
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Post  jenn31 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?

jenn31

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Post  mary jane 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
mary jane
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Post  mary jane 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.
mary jane
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Post  jenn31 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!

jenn31

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Post  mary jane 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
mary jane
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