Vulvodynia Support
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» Hope to all my suffering ladies
Redness won't go down... Help!!!  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Redness won't go down... Help!!!  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Redness won't go down... Help!!!  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Redness won't go down... Help!!!  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Redness won't go down... Help!!!  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Redness won't go down... Help!!!  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Redness won't go down... Help!!!  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Redness won't go down... Help!!!  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!
Redness won't go down... Help!!!  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


Redness won't go down... Help!!!

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Post  morgaan_xo Wed Sep 10, 2014 9:15 pm

I don't know what to do... Or if this is in vulvadynia... My skins is so sore and red and I'm in so much pain... Does anyone else experience this?

morgaan_xo

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Post  sailor_moon Wed Sep 10, 2014 9:49 pm

I get this. I end up taking an Antihistamine and some Ibuprofen + Codeine. Helps a bit but generally you have to just deal with it. Sad good old ice pack on the fanny is good too.
sailor_moon
sailor_moon

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Post  morgaan_xo Thu Sep 11, 2014 5:18 am

Is it part of vulvadynia? I don't want to have tk deal with it

morgaan_xo

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Post  sailor_moon Thu Sep 11, 2014 7:20 am

I havn't been properly diagnosed yet. But it is proven that my problem is coming from "the inside" out. No-one should be made to deal with it, but unfortunately until we find someone who can diagnose us we can only do what we can Sad are you like this 24/7? Or is it worse at certain times on and off? Hope you are ok.x
sailor_moon
sailor_moon

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Post  morgaan_xo Thu Sep 11, 2014 7:32 am

I don't feel as if I have been diagnosed properly yet I have been told it's so many different things

morgaan_xo

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Post  sailor_moon Thu Sep 11, 2014 8:02 am

I have been told a million different things but so far no treatment has worked. I am only just seeing a decent doctor now who is doing further testing on me over the next 2 months. How long has it been since you have seen a doctor? Have you tried to find a vulva specialist/Uregynocologist? You have bladder problems too don't you?
sailor_moon
sailor_moon

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Post  sailor_moon Thu Sep 11, 2014 8:14 am

I have been told a million different things but so far no treatment has worked. I am only just seeing a decent doctor now who is doing further testing on me over the next 2 months.  How long has it been since you have seen a doctor?  Have you tried to find a vulva specialist/Uregynocologist?  You have bladder problems too don't you?
sailor_moon
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Post  morgaan_xo Thu Sep 11, 2014 8:38 am

Me too!!! That's exactly the same with me but am I still yet to discover a doctor that wants to help me

morgaan_xo

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Post  morgaan_xo Thu Sep 11, 2014 9:52 am

What sort of testing are they doing on you? And I last saw my gynae in May! And no not yet, I'm going to see how it goes today then go back to my doctor and asked to be refered to skmeone else!!! And yea I've got an over active bladder and bladder pain syndrome, but I take medication for both so there ok now, just need to sort the burning pain and soreness out

morgaan_xo

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Post  sailor_moon Thu Sep 11, 2014 11:02 am

I am currently having a blood test every week over a month, to see what my hormone levels are doing. My periods are extremely irregular, I suffer a 'morning sickness' even though I'm not pregnant and my burning/itching/ soreness is worse at certain times of the month. I am also getting my stress levels blood tested and had a special test for Heliobacter bacteria (not sure how thats spelled lol).Look up specialists in your area, preferably a vulva/vulva pain specialist or at least a gynecologist who has extensive experience.
sailor_moon
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Post  morgaan_xo Thu Sep 11, 2014 11:19 am

Oh my god that's exactly like me, this is bit crude but do you get discharge at certain times off the month too? Hopefully I can get some more tests done! And what's heliobacter Bacteria? And I think I'm going to do that tonight! Thank you for messaging me back by the way means a lot!x

morgaan_xo

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Post  sailor_moon Thu Sep 11, 2014 11:38 am

Haha there's no such thing as being too crude on a website that is all about Vulvas! Lol. Yep I sure do get discharge at certain times...I sometimes get a ridiculous amount of clearish sticky discharge, sometimes so bad that if I sneeze I can feel it come out of me and I have to go clean myself up...it's awful. I find it only comes round about 10 days after my period...and comes and goes until I get my next period.. I only get my period once every 70 days or so, so who knows WTF my hormones are doing. You are most welcome, I know how hard it is being a young person trying to deal with this shit. We should be having the best time of our lives, not the worst. What tests have you actually had done? Heliobacter is a hidden bacteria in the stomach that can cause all sorts of problems.
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Post  morgaan_xo Thu Sep 11, 2014 12:10 pm

Ahahaha that's very true!!!! See I have my periods to much so I get it before and after my period so it's near enough all the time!! Yours sounds a lot like mine to be honest!!!! And same with me, mine all started when I had the implant I should never had had it

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Post  sailor_moon Thu Sep 11, 2014 12:26 pm

Mine all started when I went off the pill. It is so messed up, no doctors tell patients the REAL side effects of birth control and what it can do to your body in the long run. It's bullsh*t . It makes it so hard when the doctor doesn't take the patient seriously. If it is one thing I have learned, do NOT let the doctors walk all over you. You need to be assertive. If you do not agree with what they are saying or doing, tell them....or go elsewhere. I found being young I got completely dismissed because of my age, and over and over again I would say about my hormones and lack of periods and they would just blame it on stress and want to give me antidepressants. I was stupid and gave in and took the stupid antidepressants. ..which made me 10 times worse over a 3 month period. I finally saw doctor number 12, who believes I almost definitely have hormone problems given all my symptoms. And said that antidepressants highly interfere with whacked-out hormones and that I should not have ever gone on them! When you go to the doctor do you go in alone? I ended up having to get my mum to come in to consultations with me because I felt I was being treated like an idiot. And I was...my mum was like "They are looking at you like a f*cking joke!" Fingers crossed this new doctor. ..who is completely different to all the others, can help me. You havn't been to a doctor in a long time. Get googling for a good one close to your area!
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Post  Alana3 Thu Sep 11, 2014 1:29 pm

I am NOT disagreeing with you here when I went off bcps all my endometriosis problems went away. HOWEVER, like any pill, the side effects dont happen to every patient. Where it seems like a lot, because we are on this forum, in actuality, unfortunately, we are in the minority. So the pill is a good use, but there are a lot of side effects that we don't know about until they happen. I think we arent told because it may happen to one or two women per practice in a regular gyno office. Once you hit the specialist, you are shit up a creek. Literally. I am so sorry this is happening to you. I second sailor moon, if you dont like what the doc says go somewhere else! I always have my mom or boyfriend come with me. Though snow, I have an amazing doctor who takes me seriously and I love him. But he's about my 20th doctor I have seen and have thankfully stayed with him for 2 years now (except hes older and I'm worried he's going to retire lol).

Just FYI discharge is a very normal vaginal activity. Just if it smells bad or looks funky is when you have a problem. It can even look like egg whites when you are ovulating. Don't feel upset over it unless it has symptoms along with it, is a gross color or smells bad!

It sorta sounds like you have endo. My periods were irregular and I am nauseous all the time. Do you have really bad pain in your uterus/ovary area too? And throughout the month not just during your period? I think the hormone test is a great idea for you! I would go to a specialist if I were you it's your best bet Smile

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Post  morgaan_xo Thu Sep 11, 2014 2:22 pm

The thing that annoys me is they say my implant and injection had nothing to do with it yet it all started after about 3 months of me having my implant and I was bleeding all the time! And I quite agree with Alana when you say about te side effect not happening with every paitent but when I kept going to the doctors with my constant bleeding on the implant demanding it was taken out, they wouldn't until I had been on it for over a year but by that time all my problems had already started and were there! That's what annoys me with them!!! And it's happened to so many people yet they wouldn't admit it! And my mum always came with my to my bladder ones but not to my gynae ones, I think I should though as she never listens the only reason I got the tests last time was because I demanded them... Like you said you have to be assertive... I've got loads of notes I've taken over the last couple of months that I'm taking into her today! And same with me, I've been to a few docs already and thinking I'm going to move again if I don't get anywhere today! And I'm on antidepressants for my bladder so I suppose that's a lower dose! I hope you get some answers sailor moon! Sorry if I missed anything!

With the discharge thing I know it's normal as I've always had it! But it increase when my burning pain gets worse too that's what concerns me! And no I never get any pain like that but I think you may have suggested endo before! My periods all over the place now though as my injection is wearing off and mu body is still not back to normal! so I never know if it's a normal one! I'll suggest all of this to her today, and I demanded a hormone test and she said nothing came back but she only did one test I didn't realise you had to have one like every week, so she is mugging me off there

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Post  morgaan_xo Thu Sep 11, 2014 3:31 pm

I am now being refered to a vulva dermatologist... Woohoo!!! And I said about the blood tests once a week to show signs of a hormone imbalance and she said no you don't, I'm so confused

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Post  sailor_moon Fri Sep 12, 2014 2:33 am

Oh that's wonderful news! Smile I'm so happy for you!! Hopefully you get somewhere with this new doctor! Be sure to let us know how you go! Is it a long wait?

You say you have your period way too often...obviously your hormones are not right! It took me multiple doctors to listen to me, they completely dismissed me when I asked about hormones being a factor. But with my new doctor, I described all my symptoms and the hormone profile test was the first thing he wanted me to do, I didn't even suggest anything to him about hormones.

It may be hormonal, it may be something completely different, it could be multiple problems but obviously something internal is wrong to be having problematic periods.

I'm so glad you are getting referred to someone else!
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Post  sailor_moon Fri Sep 12, 2014 6:53 am

OMFG ladies! I just went back to my GP who has half the test results I am currently having done and I have some form of answer!!!!! I got a specific hormone test done and the normal level of this particular hormone is 30...mine is 129!!!!!!!

I have to get another 2 tests done yet before I actually see the specialist for treatment but...yewww! Progress!!


Last edited by sailor_moon on Sat Sep 13, 2014 8:43 am; edited 1 time in total
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Post  morgaan_xo Fri Sep 12, 2014 7:47 am

I hope I get some where too, don't want to get my hopes up though like I have done ever other time!! And I will definately let you all know if I get some where

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