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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6


15 year old daughter with vulval pain

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15 year old daughter with vulval pain

Post  Ameliasmum on Wed Apr 24, 2013 8:17 am

Hi all,
Just joined as been searching google about my daughter suffering from pain in this area....it has happened on and off over a year lasting days then going....but this time its lasted over a week...i took her to our gp last week and explained her symptoms which are intense stinging burning in vulva area...but daughter was afraid to be examined down there.....gp suggested drinking lots of water....thats all she does drink anyway......then Monday and Tuesday this week she couldnt go to school because of it as she finds it hard to walk has to take little baby steps because of the pain....i made another appointment to see gp yesterday and she tried to have and exam but just the action of knees bent up and flopping them out caused terrible pain that she was bought to tears....she said that walking bending just to put underwear on can make it hurt more..... the exam couldnt go ahead although she really tried.........gps advice now is to apply ice pack and yogurt and take pain meds....she had taken paracetamol and it didnt help which we explained.........gp hasnt requested to see her again ... my daughter is a sensible girl and rarely complains so i know how bad this is for her....any advise would be gratefully received....many thanks
p.s. doesnt seem related to cycle and she suffers with eczema


Last edited by Ameliasmum on Wed Apr 24, 2013 8:58 am; edited 1 time in total (Reason for editing : addition)

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Re: 15 year old daughter with vulval pain

Post  Alana3 on Wed Apr 24, 2013 1:06 pm

Unfortunately to really know she needs an exam. But they should just have to look on the outside if its vulvodynia and not do much more (maybe the qtip test). If it's really that bad (which it probably is) ask for lidocaine to put on before the exam and to use thruout the day. V wouldn't be related to a cycle it just hurts. I remember the last time mine hurt was for the mapping for surgery, unfortunately that couldn't be numbed because they needed to know exactly where it hurt. Oh my God it was the worst pain I have ever felt and I couldn't sit for a while after. Try a probiotic, but honestly, if it is V you need something like elavil, gabapentin, or amitryptilene (sp?) to try and make it stop hurting. From my experience, pain killers don't do anything except make you tired. Take her to someone who does strictly vular pain. I had to go thru 10 doctors before I found one who was even willing to admit that I had a problem and then from there found the doc I have now. Not a good feeling but it can be treated and she can be made to feel better. You could also try physical therapy for her, it helped me for a little, and I still do it now to help with muscle spasms. Good luck if you have any questions let me know Smile

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Re: 15 year old daughter with vulval pain

Post  Kathy100 on Wed Apr 24, 2013 3:11 pm

Hi,

I feel so sorry for you and your daughter. I can understand her not wanting to be examined because of the pain, I had to have my last smear test under anaesthic! I would change your gp - some of them have no idea - one of the first doctors I saw also said take paracetamol and come back in three weeks time. Paracetamol (or any ordinary pain killers) don't have any effect this kind of burning pain. Ice packs do help temporarily. I had to see several doctors before I got a diagnosis - even then I had to ask her was it V?. The doctor should take swabs & order a blood test. I then went to see a pain management specialist who specialises in V & things started to get better. I also went to see a vulval dermatologist to rule out any skin conditions. I take notriptyline which for me helps a lot with the burning pain. I'm also having physio to help ease the tight muscles which has helped too. It's very difficult but I think once you find the right GP / pain management specialist who understands V things will start to get better for her.

Good luck, don't give up & don't let the doctors fob you off! xx

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Re: 15 year old daughter with vulval pain

Post  Ameliasmum on Mon Apr 29, 2013 3:27 pm

Hi Alana and Kathy

Thank you both for replying......i shall try one more time at our surgery (i dont hold out much hope) then take advice to seek another gp....Kind Regards x

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Re: 15 year old daughter with vulval pain

Post  Alana3 on Mon Apr 29, 2013 4:57 pm

Keep us updated!

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Re: 15 year old daughter with vulval pain

Post  Loulou on Mon Apr 29, 2013 5:31 pm

Hi Ameliasmum

A few things struck a chord with me from your description of your daughter's pain as they mirrored my own pain in the early days of my vulvodynia ie painful to walk (having to take baby steps), pain when adopting the position for an internal exam, and the actual pain of my doctor trying, and failing, to insert the speculum. In my case this was due to tight pelvic muscles and tight adductor muscles in my inner thighs (which was caused by a misaligned pelvis). At the very least if you can get some help for your daughter to release these muscles it should help reduce the pain, and maybe enable an internal exam to take place.

Whatever the primary cause of her vulvodynia it is very likely that pain is causing her to tighten her pelvic floor and surrounding muscles causing additional secondary pain. So please get a referral to a women's health physio for her and have a look on here for some of my previous posts where i talk about the 'frog pose' which helps to release tight adductor muscles, this will enable her to drop her knees more comfortably. Also a great book which gives exercises for releasing the pelvic floor is 'Heal Pelvic Pain' by Amy Stein.

Another thing you can check for is whether she has any sore spots (trigger points) which indicate tight/contracted muslces in her bum, down the outside of her thighs and across her abdomen. Trigger points in her bum can be found and massaged with a friendly elbow! (just press the elbow firmly but gently into the sore spot for 30secs or so - or you can use a tennis ball). Thumbs and fingers are best for massaging abdomen (a typical vulvodynia related sore spot is in the psoas muscles - when lying flat, imagine a line from the knobbly hip bone (bit that sticks up) to the belly button and around the middle of that line feel around for a tight band or sore spot and massage gently. You might need to press quite deeply here to feel the muscle/sore spot. Outer and inner thighs can be massaged with thumbs, fingers. Or you can buy a 'knobbler' hand held massager. Repeat the massages several times and throughout the day. If your daughter has any tight muscles these should definitely help.

You say your daughter has eczema - hopefully if she can relax her muscles enough for an internal exam they will be able to identify if her pain is caused by vulval eczema. Another thought has your daughter ever had any back or pelvic injuries at any time? e.g falling off something? a slip in dance/gymnastics etc? If yes then structural or muscular problems in the pelvis might be the primary cause of her vulvodynia.

Hope this helps while you find some answers for your daughter.

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Re: 15 year old daughter with vulval pain

Post  Ameliasmum on Tue May 07, 2013 7:20 am

Hi Loulou

Thank you so much for info...daughter has episodes of really bad leg/calf muscle cramps so will check areas you mention too...many thanks

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Re: 15 year old daughter with vulval pain

Post  Alana3 on Tue May 07, 2013 10:19 am

Is she on birth control? If so mention to a doc asap about the.cramps

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Re: 15 year old daughter with vulval pain

Post  Delilah1 on Tue May 07, 2013 3:02 pm

I can't imagine being 15 and having to deal with this. Dealing with the pain and burning can be so stressful. The anxiety that it provokes only adds to the problem. The pain, worry and anxiety make the muscles in your whole body tense. You wonder why me? Will this ever go away? Do I have a sexually transmitted disease or something the doctors are missing? I am in no way saying the pain of vulvodynia is all in your head but emotional issues, stress and anxiety add to it. Has your daughter been through a particuliarly stressful event recently? Is she having issues with boyfriend, friends, school....etc. When my V first started I was going thru a stressful time in my life. I thought I would go to the doctor get some medicine and be on my way feeling better in a few days. When this didn't happen the anxiety started. I think it made all my symptoms worse.
What you can do for your daughter right now is help her to find ways to relax. Give her a back massage, play a movie that will help her get her mind off of it for a while or make her laugh, assure her that she can talk with you about anything that is bothering her. Warm baths in Aveeno Colloidal oatmeal are very soothing. And all of the exercises, stretches and trigger point techniques LouLou described are so important. One of the most important exercises I believe is learning how to breathe filling your lungs using your diaphragm muscles. Amy Stein's book "Heal Pelvic Pain" teaches you how to do this. It really helps. Whatever the cause of her V these things will help. I wish her well!!

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Re: 15 year old daughter with vulval pain

Post  Alana3 on Tue May 07, 2013 3:15 pm

All that is great if the pain is muscular, with mine it was mostly skin and nerve related and it drove me up a wall it made it a lot worse. Just make sure you have a doctor tell you if its muscular or nerve. Now that I had the surgery and removed all the skin and such that was affected I can get thru PT (because I have a little bit of muscle spasms) a lot easier.

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Re: 15 year old daughter with vulval pain

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