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» How I cured my Vulvodynia!
Does anyone else have Endometriosis? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Does anyone else have Endometriosis? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Does anyone else have Endometriosis? EmptySat Jun 15, 2019 5:22 pm by mary jane

Does anyone else have Endometriosis? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Does anyone else have Endometriosis? 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!
Does anyone else have Endometriosis? EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Does anyone else have Endometriosis? EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Does anyone else have Endometriosis? EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Does anyone else have Endometriosis? EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

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.


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

Does anyone else have Endometriosis?

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Does anyone else have Endometriosis? Empty Does anyone else have Endometriosis?

Post  CYF on Thu Oct 01, 2015 5:00 pm

Hi everyone,
I'm writing a new post because after 5 years of searching/struggling through my burning vaginal pain, I finally got a diagnosis. My Dr discovered that I have endometriosis and he surgically removed the misplaced tissue. But it doesn't end there. I have no idea how to proceed with treatment aka prevention of a future flare-up. My Dr. was wanting to put me on hormonal birth control (more specifically, the Depo-Provera shot) and I told him I wasn't comfortable with that. I have had horrible side effects to BC in the past.

If anyone has any advice/suggestions regarding what to try or what to avoid, I would really appreciate it. Thanks!

Also, FYI, these have been my main symptoms over the years:
-dull burning deep internal vaginal pain
-deep feeling of burning/inflammation/pain deep within my vagina during and after intercourse
-pain in vestibule during sex
-pinchy crawly contraction-type sensations in vagina
-digestive difficulties: alternating constipation and diarrhea
-for years i was having really heavy discharge but that has gotten better
****NOTE: Drs say that painful awful periods are the trademark symptom of Endometriosis, but that isn't always the case. My periods have been moderate. Years ago, I saw an Endometriosis specialist because I suspected that I had it, and he dismissed me after I told him that my periods were fine. 5 years later, and I realize I was right. Every woman is different and symptoms vary.

If you have any questions please feel free to let me know.



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Post  sailor_moon on Fri Oct 02, 2015 8:31 pm

I had endometriosis removed 3 months ago. However it did not contribute to my vulva problem. I also have big digestive problems, I have chronic gastritis (chronic inflammation of the stomach, kinda like chrones disease but inflammation stomach instead of bowel). I suffer from severe reflux, I used to vomit every single day, nausea. Alternating constipation and diarrhea are classic endo sufferer symptoms, even after my surgery I still get this sometimes.

I recently read about digestive issues and vulvodynia and a link between the two being associated with candida overgrowth. I tested negative for candida every time until 4 weeks ago it came back positive. Problem is it seems to be resistant to fluconazole and clotrimazole.

Also has your PH been checked?

As for birth control I refuse to go back on it as I never had any problems until I came off it and all these problems showed up. If you have a hormone imbalance and want to have a blood test, birth control will hide any imbalance you may have and you will not get a true result. Have you had your hormones checked?

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Post  CYF on Fri Oct 02, 2015 11:24 pm


Thank you for your helpful reply. Like you, I never had any of these issues until after I went off birth control.

How did you find out that you have chronic gastritis? Does that show up on a CT scan? I had a CT scan a couple years ago and "nothing unusual" was detected - my Dr wanted to proceed with an endoscopy/colonoscopy but I didn't do so; it seemed too expensive/drastic at the time.

Do you have any issues with nutrient absorption? My Dr did a stool test and it indicated that I am not digesting/absorbing fats properly. I have no idea why this is the case. Dr thought it might be Celiac but then I tested negative.

Which type of Dr did you go to for your candida testing? In other words, was it a standard yeast test that a OB/GYN typically does, or was it a different type of candida test? I'm curious what my candida level is. It tested "normal" at the OB/GYN office but I'm wondering if there is a different/more comprehensive test.

My pH and my hormones have not been tested in years. Does a too high/too low pH contribute to these symptoms?


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Post  sailor_moon on Mon Dec 14, 2015 9:05 am

I literally only just saw your reply! So sorry I never got back to you! Hope things have improved, 2 months later.

Chronic gastritis showed up via endoscopy, it's the only way to diagnose it. Was meant to have colonoscopy too but it never happened due to the doctor on duty leaving and another doctor who did it didn't have authority to do the other end!

Hormones, candida and PH all tie in with one another. I've since been treated for candida and had 2 more swab tests done which have come back negative but I still have vulvodynia. I do not get extreme redness and as bad of a blistering feeling as I did previously but the itching and burning is still there

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Post  ringostarr26 on Wed Jan 20, 2016 6:48 pm

I also have/had endometriosis. Mine was scraped off back in 2006 when I had a dermoid cyst removed from my ovary. Honestly, I don't think my endometriosis contributed to my vulva pain but I could be wrong. Mine seems to be heavily related to Overly tight pelvic floor muscles that stemmed from a bad injury/fall to my tailbone in high school. My vulva specialist told me birth control can cause problems with vulvodynia. This probably isn't much help but I just wanted to say I'm in the same boat with endo. It definitely isn't a fun condition to have.


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Does anyone else have Endometriosis? Empty Endometriosis??

Post  Jo44 on Mon Apr 08, 2019 7:54 am

I know this post is old but hope someone might offer advice and help please?

I’ve had Vulvodynia for 4 over years and for most part it’s been more good days than bad. I’m on Pregabalin and Amitriptyline. I came off the combined birth pill last year end of July and since then it seems my body has been thrown into Peri Menopause ????

Hubby and I have been able to have a fairly good, pain free, sex life the last year, but I noticed that on deep penetration it really hurt. I described it to professionals like he was hitting the end, nothing was made of it. Now this past month I’ve had awful pelvic pain which seems worse than previous months it feels inflamed and bloated and then this radiates below too. This has only happened since coming off the pill? Before going on the pill when I was 16 I had awful periods, really painful & heavy but not flooding. I wonder if the pill was helping with it?

I’m now 48 and have two grown up children, no probs conceiving them.

Thoroughly fed up atm. Was trying to avoid HRT so am using Bio Identical Progesterone cream but after the first two months which were amazing, it seems to be not helping! ????


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