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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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 …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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 …

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New Member - Looking for Advice an Support

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New Member - Looking for Advice an Support

Post  MLily92 on Mon Sep 29, 2014 10:55 am

Hello everyone,

Im a 21 (female of course) from Australia. Over the last week I have had this strange vaginal tingling (in the upper area of my vulva). On my fourth visit to the GP this week I was successful in receiving two referrals to different gyno's who specialise in vulva pain. They of course are going to take a couple of months to see and I was hoping to seek some advice from people experiencing similar problems, mainly on relief and any ideas of what I have and if it will just go away (fingers crossed).

I have tested negative to UTI, Yeast Infection, STI. I've had a pap smear and that came back negative. The area looks completely normal. I don't experience any pain on urination. Sex was normal until later in the week, my vaginal muscles seem to be contracted and after trying to have sex to relieve the sensation I vomit (gross) due to possibly the pressure. I guess you could describe it as uncomfortable.

The sensation is in my cliterous. Its a tingling sensation, I think more to one side now (the right). It has gotten worse over the last couple of days. It's like i'm almost sexually aroused but like the song 'my mind is telling me no but my body is telling me yes'. The doctor told me to use lignocaine for relief and this has helped today for an hour or two.

I have been unable to sleep because of this continuous sensation (ice and pressure haven't' been able to relieve it). It's been stressful, I haven't been able to work or do uni work. I'm scared that I will never be the same but I'm trying to stay positive. I used to have frequent panic attacks about it but I think I'm to tired to panic now.

I have had a previous back injury (nerve damage) which has been well healed over the last two years but the pain (sciatic in nature) as returned at a similar time to when I sudden got this sensation. The doctor agreed that it might be a cause and in consultation with a specialist this should go away with time (not sure how long, any answers?) as the symptoms are not as severe as others with nerve damage or entrapment.

Luckily I have a loving boyfriend who keeps my spirits up and does everything he can to make me happy. This condition however is taking its toll on our relationship and my quality of life and it's only been a week so any feedback, advice, or positive personal experiences shared would be greatly greatly appreciate!!

And to all you lovely strong ladies out there that are probably experiencing far greater suffering then me, I salute you for your strength. You are truly inspirational, I'm astonished how people live with this conditions.


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PLUS

Post  MLily92 on Mon Sep 29, 2014 10:58 am

I'm about to have my period. I know its probably not going to happen but I hope it relieves the sensation. Fingers crossed.

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Re: New Member - Looking for Advice an Support

Post  sailor_moon on Wed Oct 01, 2014 11:20 am

Hi,

I'm an Aussie girl too. Can I ask what state you live in?

Sounds like your problem is nerve-related. Have you tried any pain-killers with anti - inflammatory action? Generally for nerve pain the first choice of relief is Voltaren 25mg tablets for 5 days straight (no more than 5 days as all anti inflammatories are not good for you gut or kidneys), and if that doesn't clear it up, go straight back to the doctor.

However, despite it sounding like a nerve issue, there are SO many different things that can be causing your problem.

Do you have any other symptoms?  Is the area red and inflammed or swollen?  Are your periods regular?

Hope your period brought you some relief!

X


Last edited by sailor_moon on Mon Jul 06, 2015 7:31 am; edited 1 time in total
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RE: Sailormoon

Post  MLily92 on Wed Oct 01, 2014 1:55 pm

Good to get a reply. I'm from NSW.

The tingling sensation is now on and off I think or I could be getting used to the symptoms (I get relief at least once a day for an hour or two). I try not to dwell on it too much because I'm scared that thinking about it will spark the tingling sensation again.The urge to urinate frequently with minimal urinating is starting to happen more. My right leg seems to tingle and be sore at time also, but I've had that on and off for a while.

I have no inflammation or swelling but my vaginal muscle seem to be in a vice grip. I used to be able to insert a tampon easily but now it is slight uncomfortable and hard to remove so I'm not using them at the moment. I feel sick when I do use them and other muscle in my abdomen seem to cramp up upon insertion.

Other than that I don't have any symptoms. I've used an antihistamine for sleep but they must make me feel smacked out. I haven't really tried ibuprofen or anything like that yet, would you think it's worth a try?

My period has been a lot less heavier and the day before it was due I had the worst nausea I've experienced with my period. I felt faint and just shit.

I've also been getting pretty fatigued but thats about it.

Each day seems to be a tad better but.

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Re: New Member - Looking for Advice an Support

Post  sailor_moon on Wed Oct 01, 2014 9:30 pm

I'm from New South Wales too Smile If you don't get any better I can recommend a great specialist. I have seen 12 different doctors, 1 who claimed to be the best in Australia. ..pfft! What a frigging joke that turned out to be. Travelled 6 hours only to be treated like shit, she told me she couldn't help me and said I needed antidepressants and councilling!! Only now am I starting to get some form of answers with my new doctor, who was the first person to take me seriously. Turns out I have a super rare hormone disorder.

It does sound like a pelvic issue, but if your periods are bad it sounds like there may be hormones playing a role too. There are so many different issues that can cause your problem.

My symptoms are different to yours, but my periods are terrible...but I am only getting them once every 3 months.

I know what you mean by lack of sleep and antihistamines. If I take Phenergan I feel drunk for the next 3 days. I find Claratyne gives the best relief out of the non-drowzy antihistamines.

Do you have a long wait til you see a specialist?







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RE

Post  MLily92 on Thu Oct 02, 2014 1:12 am

Urgh! Thats what I'm trying to avoid. I really need to try and get my life under control because I have university placement on the 27th of this month. I know its a long shot but I'm really trying to start some treatment before then. 12 doctors but.. Jesus. Its good to hear that you might be on the right path to treating your condition.

My symptoms seem pretty different to a lot of people. I'm not finding many people with the same experience and if it is on a forum or like Yahoo they don't seem to write back so I'm assuming it just stopped for them. Thats what the doctors seem to think hahaha so fingers crossed because I'm pretty anti antidepressants. I've done a lot of pharmacy units and the side effects and how they work on your body kind of scare me. I think hormones might be causing for inflammation to the area.

I have an appointment on the 3rd of November with a private gyno (I found her on a list of people that are meant to specialise in this sort of stuff in Australia). I've got an appointment (which will probably take three months) at the John Hunter Vulvar Clinic. And I'm trying to get something set up with GCA (it's like the Gynocology agency for Australia or something) ASAP because you don't need a referral for those guys.

It seems to be subside and flare up over the course of the day but. Last night was the worst.

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Re: New Member - Looking for Advice an Support

Post  sailor_moon on Thu Oct 02, 2014 11:01 am

John Hunter have a vulva clinic? Well sh*t, I wish I got told that!! Instead I got sent to an Oncologist in Newcastle who did a biopsy (yes, a biopsy.. I've had 2..the 2nd one came back with non-specific inflammation)  which showed nothing!

I Travelled to Sydney (6 hours away! so Its quite a bit of travelling!And SO much $$$$ ) and got no result.

I have my good days and bad days. Some worse than others. I am not a classic textbook case either, along with extreme itching, burning and inflammation I suffer chronic fatigue, nausea and vomiting every day. Its like I have had morning sickness the past year and a half but I'm definitely not pregnant,  sex is the last thing I want when I feel like this! It all started when I came off the pill. Most women don't have these other symptoms.

No-one would take me seriously. I would tell them that I felt is was hormonal and they dismissed me saying it was all anxiety and stress and that it was all in my head! How can cysts on my ovary in ultrasounds be all in my head? How can blood clots in my period the size of 50c coins be all in my head?

I gave in and took antidepressants because I was silly enough to think they might fix me, it might be all in my head. My symptoms became 10X worse!! And when I saw this new doctor he said the drug I got put on was one of the worst for interfering with hormones and would be making me sicker!

I hope you get a good doctor!  Someone who takes you seriously.

One of the best things I can recommend you do leading up to your appointment is record all your symptoms in a diary. Every day. See if there's a pattern throughout your cycle. And then if there is tell your doctor.  I did this and found it was always worse leading up to my period.

Are you generally in good health otherwise?


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RE

Post  MLily92 on Thu Oct 02, 2014 11:43 am

Oh you poor women!!!! Fark.

I did a lot of research, a lot. Once I had a good research and realised that it was vulvadynia related. It helps that I do nursing at uni because I know how to look for the specialist in vulva disorders and it came up with that and newcastle private. Plus I rang gynaecology council of australia and talked to them. I have an appointment with a chick that knows all this stuff on the 13th of this month Very Happy I have placement for uni at the end of the month so I'm really trying to get on top of this so I can finish my degree at the end of the year relatively pain free.

I can't believe you had to get a biopsy!! and I can't believe that they told you its was from anxiety and depression. I don't think anyone has experienced vaginal problems as a symptoms of anxiety and depression. Thats just dumb Mad . I never let anyone tell me that. That sounds awful, and very hormonal, you were right to trust your instincts. I find that people always know there bodies better than a doctor. Hopefully they can put you on some sort of hormone regulating drug or something like that.

Yeah I've been keeping a close eye on all the changes I have and when things flare up. Last night was the worst, even the lignocaine jelly didn't help.

My goal is to be as close to normal and be able to have sex with my boyfriend because at the moment thats impossible not because it hurts but my muscle are in a vice grip down there at the moment.

I'm usually in pretty good health. I had a bought of recurrent UTI's around July-August. Just because they didn't take a culture and I didn't get treated properly and it was bullshit. But then I've been fine for about a month and then this shit happened out of nowhere. I was a little sensitive in that area for a couple of days. Which happens form time to time and then but nothing abnormal then bam.

It seeming to get better but I'm not taking any chances of this happening again if it clears up on it's own.

Let me know how it goes with the hormones!!!



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Re: New Member - Looking for Advice an Support

Post  sailor_moon on Fri Oct 03, 2014 9:31 pm

13th October is when I actually get my results Smile lol must be the day for it hey.

Fingers crossed the "13th" isn't gonna bring us bad luck. Lol.

I hope you are able to get a positive answer and some relief.

Countdown for the 13th. We will have lots to chat about.
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UPDATE

Post  MLily92 on Mon Oct 13, 2014 8:48 am

Hey everyone or just Sailormoon (who-evers listening/reading).

I went to a regular gynaecologist today in the Central Coast. She didn't seem to know what was going on which was a shame, and I didn't get a diagnosis either which would have been lovely but hey. Chin up.

She's assuming that it's nerve pain, or nerve damage related besides the fact that I have had no recent trauma or back injuries. She suggested to ask for an MRI scan when I go see ANOTHER specialist and spend more of my savings which is currently on the lower side.

The doctor prescribed me Escitalopram (Lexopro). Can't be bother to look for the spelling. It's an SSRI. I know that they haven't been proven to be very effective and I'm scared of the side effects but I have to start somewhere and I'm desperate for relief.

My symptoms have been horrible this last week. I've been becoming more and more fatigued and nauseous. I've lost my appetite and I'm starting to loss weight. The tingling got really bad the other night, to the point where I took half a Valium of my friends because I was so distraught. I felt good. But the pain didn't go away.

I'm totally bummed at my progress. But fingers crossed I get more answers and hopefully relief in the next two weeks otherwise my uni and work might have to be put on hold for a while Crying or Very sad

Sailormoon --> Hows the hormones?

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Re: New Member - Looking for Advice an Support

Post  sailor_moon on Mon Oct 13, 2014 9:20 am

Oh thats no good Sad

I just posted in this "Advice and Support" section of the forum how I went. Very interesting. Information overload!!
But seeing as I am here, I will tell you lol.

I officially have PCOS. Blood test result proved that. The doctor went one step further and did a vaginal ultrasound in his office and showed all the cysts over my ovaries!

My Estrogen levels are super low. I'm not ovulating at all.

And I may have Endo. He suspects it. I have to have sn op where my doc is going to look at all my insides and fix any Endo or other issues he finds. He will be looking for all different things that may be causing my problem.

He can't give me anything for relief just yet, as he wants to find the real root cause of my problem and get to the bottom of it.

So more blood tests, a follow up in 7 weeks and an operation within 6 months.

I just want it all to be over Sad

He has been the best I have seen so far. He knows his stuff. If you want me to inbox you his info I'm more than happy to. If it wasn't for him I'd have no idea I have PCOS or low estrogen.

What is the next step for you? What will an MRI show?


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RE:

Post  MLily92 on Thu Oct 16, 2014 1:57 am

Oh wow! Sounds like you got a lot of answers but thats no good how you can't get any relief. I swear relief is the only thing anyone is looking for on this sight. Such a bummer that you have to wait for so long to get more answers. The system is bullshit. We are all in unbearable pain and discomfort and I honestly feel like no one really give a f@#k because our vitals signs are fine and we aren't dying although it certainly feels like we are inside.

I got some more answers when I went back to my GP. He seems to actually care about my situation and wants to get to the bottom of it. His worried because I seem to be getting progressively worse. I got a tonne of blood tests taken and I've done another vaginal swap. He also changed my medication to a tricyclic antidepressant which is meant to be effective for nerve pain but his not quite sure if it actually is nerve pain. His looking into doing some research because he has dealt with women who have vulvadynia and I don't have the characteristics of that or pudenal nerve damage. His also going to consult further with the head gyno at the john hunter to see if I can get in earlier or if there is a treatment plan I can start because the tingling is unbearable. I have to go back in tomorrow anyway because my bloods came back positive or suggestive of glandular fever. The antibodies are in the same group as herpes (which makes me really scared) but I have no sores.

I'm starting to think that I might have a yeast infection or chronic systemic yeast infection thats causing this. I know I don't have the irritated looking vaginal area but I do have some discharge now (discharge isn't always present apparently).

I think the thing that hurts me the most now is the fact that I will have to push my degree back another 6 months and that I'm probably going to lose my nursing job over it because I haven't been able to work.

I just really want the life I had three weeks ago back. I feel so out of control. I'm depressed now but I'm hopefully that there is a cure out there for all of us. It's just the journey of finding it.


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Re: New Member - Looking for Advice an Support

Post  sailor_moon on Thu Oct 16, 2014 2:20 am

Oh at least your GP is trying to help you! Hopefully he can get you onto someone decent. Surely at John Hunter there would be someone good there! I think coz of our age doctors don't take us seriously. If we were older women going through menopause or a young child we may get treated better. Pffft! So much for being in our "sexual prime"!

If you don't get anywhere I can give you my specialists info if you are willing to travel up the coast for treatment.

That is really weird about your blood tests. You can contract the herpes virus and not actually have a break-out. But your symptoms definitely arn't herpes related..  at least it doesn't sound that way to me.

I too am at risk of losing my job, being so fatigued, vomiting and taking time off for travelling to  doctors,  my bosses gave me a warning. Its very scary when my hubby isn't on "big money" and we have a mortgage and doctors bills to pay.

I hate my job. Ever since I have been ill my bosses have tripled my workload n told me if I can't handle the stress of the increased workload and being sick then I should leave. Easy for them to say...theyre loaded with money. I can't look for eork elsewhere coz noone will keep me on being sick all the time. I haven't taken a holiday in 2 and a half years coz all my holidays go to doctors visits and I can't enjoy a holiday with constant itching and burning and fatigue anyway. And im saving every spare dollar I get in case I lose my job.  I earn 25K a year and last year $8000 went to doctors visits with no success! And I cant even claim it back on tax.This f*cking shit ruins every aspect of your life. I rarely see friends, I dont go out, my marriage is struggling as I avoid intimacy now due to this problem...the list goes on.

It pisses me off...noone should ever have to go through this.


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RE:

Post  MLily92 on Thu Oct 16, 2014 2:47 am

Yeah I'm really hoping he gets some answers. I'm really hoping this friggin' meds work too. I'd love the details of your person, just in case I get stuck with the two specialist I've booked into. Thank god my parents can still have me on there private health insurance plus I've got a low income health care card for being a student otherwise I'd be in so much debt right now. My John Hunter appointment isn't until the 2nd of Feb but fingers crossed my GP can put the pressure on.

I just hate how I went to the emergency department there, doubled over in agony, crying and the stupid stupid emergency doctor (which are usually junior medical officers) were like 'there's nothing I can do' even though the vulva clinic with one of the best vulva doctors in the state is across the hall. I felt like saying 'do you no realise that i'm either going to kill myself, or give myself a female circumcision at the moment'.

Dickheads.

I do have the tingling of herpes but none of the other symptoms. I really have a strong feeling that something immune wise or bacterial/fungal wise is off but. The more I get the pain the more I think that it's not nerve damage.

I feel all that pain but. All my friends are so understanding. They all know what I'm dealing with. Even the guys. It's a shit fight to feel like going anywhere but like this.

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Re: New Member - Looking for Advice an Support

Post  sailor_moon on Fri Oct 17, 2014 12:54 am

I'll private message you all my doctors details Smile

Oh I had the same thing happen when I went to emergency. The stupid med student doctors said they couldn't do anything for me, yet the hospital has a Gyne that specialises in vulva disorders. It's a fucking joke. Always the same "Oh you need to go to a GP and get a referral" bullshit. Yet they then say "Oh can we have a look!!!". Like fuck I was gonna "let them look!". They already said they can't help me, my mum joked and said I may as well become a Porn Star and start charging people to look at it! They have no respect!



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Post  MLily92 on Mon Oct 20, 2014 3:59 am

Sweet, I got your private message.

I ended up having to go back to the doctor for blood test results which showed nothing for my mystery vulva pain but that I've had glandular fever and subsequent raised liver enzyme levels which is just brilliant because that can indicate liver damage (yay more problems).

I've got a referral to a physic that specialises in this shit so fingers crossed she has some answers and provides me with some relief.

My symptoms have changed now too which was great until the new ones started to piss me off. The tingling sensation has dulled substantially but now I feel like it's in my urethra and internally in my vaginal (its like this itchy feeling) it's insanely annoying, makes me feel like I want to pee all the time. Almost like a UTI or Yeast infection but hey, my swaps and cultures came back clear so I dunno.

So annoying. I hope it just fucks off.

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Re: New Member - Looking for Advice an Support

Post  yoginimom on Wed Oct 22, 2014 4:11 am

Do you know much about the pudendal nerve? Sounds like this could be something to look into for you, especially with the history of back pain.

http://www.pelvicpainrehab.com/pelvic-pain/726/how-do-i-know-if-i-have-pn-or-pne/

and

http://www.momentoftruthpt.com/pelvic-physical-therapy-the-who-what-and-why/

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RE:

Post  MLily92 on Thu Oct 23, 2014 12:17 am

Thanks for the information!!

I go to a vulva specialist on the 3rd of this month.

I also started Pelvic Floor Physiotherapy this week. My PT can't tell if I have nerve damage yet. Just because all my pelvic floor muscles have tightened and won't relax at the moment. So the first thing is to combat that. She said that because my pelvic floor muscles are so contracted this pushes up onto my urethera and makes me feel like I need to pee or its irritated all the time. She also commented that I'm lucky that I came in early and that I'm young, and that it shouldn't take too longer and it shouldn't be too difficult to get back to normal with a little hard work.

So fingers crossed Smile

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Re: New Member - Looking for Advice an Support

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