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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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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.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

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you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

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Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

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my story and I still need help!!

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my story and I still need help!!

Post  morgaan_xo on Thu Jul 03, 2014 5:14 pm

I'm only 17 and I have been with my boyfriend for 3 years. I have been living with several different problems and unable to have sex for nearly 2 and a half years (the majority of my relationship). I met my boyfriend when I was 14 (I know really young) My mum wanted me on contraception and I had to go on the implant as I suffer with migraines with aura. I was fine for 3 months until I started bleeding all the time and getting cystitis all the time. The doctors were just giving me more and more hormones to stop the bleeding but nothing would work. I started to have a real problem with having sex and with my bladder. I had a constant burning pain and found it hard to urinate with out pain and my bladder would only hold 10-30ml (suppose to hold 300ml comfortably). The doctors finally took my implant out after a year of having it (September 2012, age 15) and was put on the progesterone only injection in the October to stop my bleeding (I never bled while on the injection) I still had all my problems while on the injection. I was finally referred to the hospital to see a bladder specialist (June/July 2013 age 16). I was diagnosed with bladder pain syndrome and bladder pain which I now take solifenacin and amitriptyline for. I thought my constant burning pain and pain during sex would subside along with the bladder problems but it hasn't. I also stopped taking the contraceptive injection because I thought it was down to hormones. I was referred to a gynaecologist who told me I had vaginismus without even examining me and prescribed my dilators... at this point I was willing to try anything... I became so down and it had start to take its tol on my relationship me and my boyfriend had split up last year in the October... I wasn't coping with anything at this point and went back to my bladder doctor(she was lovely) and she examined me and said my skin looked raw and prescribed me a steroid cream which I had a really bad reaction to over Christmas (was back with my boyfriend at this point) I had severe thrush and swelling so I went to the nhs who were really concerned that I was using a steroid cream for a skin condition that hasn't been diagnosed. They then examined me and said I need to come back and see there Doctor. I went and saw the doctor who diagnosed me with vulvodynia but said there isn't anything she can do for me and that I need to get my thoughts in my head to match the thoughts in my vagina, basically telling me its all in my head. I burst into tears when I left the room. I went back to see the gynaecologist at the hospital who felt sorry for me and said it does sound like vulvodynia but she also thought it could have been down to hormones too as it takes a year for the injection to wear off. She prescribed me lidocaine gel, which to begin with really helped, I had good times and bad, sometimes it hurt more than others and there has been some weekends that it hasn't hurt at all. I noticed sometimes I felt like I had a deep bruising pain. (I thought this could be my injection wearing off) I'm starting to have periods again but they are all over the place. I saw the gynaecologist again a couple of weeks ago and she did a scan and blood tests and everything is normal... I was hoping for them to find something!!! So now I feel like I am stuck and I just don't know what I can do. MY cycle is all over the place and even using the lidocaine my burning pain is still there pretty much all of the time, my body just randomly decides when it doesn't want to hurt (very rare) please someone help or give some advice?????

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Hang in there!

Post  sailor_moon on Sun Jul 06, 2014 11:50 pm

Hey babe,

I so feel for you, being so young. I'm only 26 and I know how you feel, it frigging sucks!! My problem started when I came off the Pill a year ago. I have seen various doctors and specialists with no success. I have been doing my own research because my periods are all over the place and apparantly a basic blood test will not really show a hormone imbalance. Apparantly you need to do a 24 hour hormone urine test and a saliva test. And get a blood test every week to show what is going on with your cycle.

I am due to see another specialist in a few weeks and will be questioning this....if i have no success I think I will try a naturopath.
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Re: my story and I still need help!!

Post  morgaan_xo on Mon Jul 07, 2014 6:05 am

It's so hard! I joined this thing because I didn't know what else to do! I think I've been trying to put it down to something else! I had blood tests and a scan done a couple weeks ago and nothing was found! I was hoping to find an imbalance in my hormones and everything was fine! But because of what you just said about the bloods I wonder if my hormones would have shown up.... Hmmm!!! I have my good days and my bad days!! I keep a little diary of what my body is doing and I'm going to show it to my doctor when I next see her!! Let me know how you get on? Xx

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Re: my story and I still need help!!

Post  sailor_moon on Mon Jul 07, 2014 6:19 am

Has anyone mentioned Endometriosis to you? Has anyone ever tested you for it? Endometriosis can cause bladder problems as well as bad periods ect. It's just a thought.

Have you had an ultrasound of your pelvis and kidneys?

My problem is chronic itching and inflammation and occasional burning, accompanied with extreme nausea and fatigue and vomiting on an everyday basis.

I will be drilling the gyno I see in a few weeks about hormones ect. As I said before, if this gyno has no answers I will see a naturopath.

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Re: my story and I still need help!!

Post  morgaan_xo on Mon Jul 07, 2014 6:50 am

Yea one of my fiends has it and she had all the same problems and was on the same contraception as me so it did cross my mind, but I had a scan of my pelvis and kidneys a couple of weeks ago and everything was normal!!!

And oh my I feel for you! That sounds horrible! Have the doctors said it's vulvodynia?

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Re: my story and I still need help!!

Post  sailor_moon on Mon Jul 07, 2014 11:28 am

They say the only real way to identify and diagnose endometriosis is via laparoscopy. (Unsure of how you spell that!)
Have you asked your specialist about it? Next time you see a gyno ask them about it.

It is great that you are keeping a diary, I have started doing the same for the last month. I am writing my symptoms throughout the day, when I get my period and the food I eat in a day. I have already been food allergy tested with no result but it cant hurt to record it....I don't see how pricking my skin and applying a food substance has anything to do with how my digestive system works!

The doctors dont think I have vulvodynia as I am mainly itchy. And do not have any pain during sex or by touch.

Have you seen a Uregynocoligist?
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Re: my story and I still need help!!

Post  morgaan_xo on Mon Jul 07, 2014 3:07 pm

See I have never had a proper internal examination! Only had a doctor look if that makes sense? I've never thought of endometriosis because I've never had pelvic pain all the time and my periods are irregular because of contraception!! I might suggest it though when I next see her!!

It's defo a good idea to keep a diary because you can see what your body is doing as you'll be surprised what you forget!

What's a uregynocologist?

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Re: my story and I still need help!!

Post  Alana3 on Mon Jul 07, 2014 3:28 pm

The only way to know if you have endometriosis is thru surgery.  Scans will not show endo.  So if they said no endo for that, find a different doctor.

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Post  morgaan_xo on Mon Jul 07, 2014 3:30 pm

Endometriosis has never been mentioned for me, only vulvodynia and vaginismus has been mentioned and obvious my over active bladder and bladder pain syndrome, I might see if she will look into it more because if you ready diary it's all a bit weird

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Post  Alana3 on Mon Jul 07, 2014 3:39 pm

The periods being all over the place sound like endo.  And you can def get vaginal pain from endo.  I have both endo and vulvodynia (although the vulvodynia is "cured"). I sometimes STILL get pain/pressure in my hooha but it is COMPLETELY different than vulvodynia pain.

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Post  morgaan_xo on Mon Jul 07, 2014 5:44 pm

I think the periods are my injection wearing off as they are starting to regulate (touch wood) how did you get rid of your vulvodynia?

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Post  Alana3 on Mon Jul 07, 2014 6:02 pm

Surgery... A vestibulectomy, but you have to jump thru a ton of hoops in order to get it done.  And it's only really successful if you have localized provoked vulvodynia. I would honestly go to a specialist and have someone examine you properly.  Meaning a proper pelvic exam.  My doctor took 3 hours with me the first time I went to him.

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Post  morgaan_xo on Mon Jul 07, 2014 6:10 pm

What's that? I've been refered to the hospital for a year and been diagnosed with my bladder conditions and the vulvodynia and they've prescribed me lidocaine but it's not really working... And what's that? Is that when it's always there? I've only decided to start looking into it because I didn't want to accept it is what she was saying it is I wanted it to be hormones or something!!! I've only had an altra sound and them just look, is it worth getting a proper examination? The gynaecologist I see never want to listen to what I have to say to be honest!! She only decided to do a scan and blood tests because I wouldn't shut up

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Post  Alana3 on Mon Jul 07, 2014 6:59 pm

I would never go to a doc that didn't do a proper exam.  They're only guessing at what could be and not what is.

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Post  morgaan_xo on Mon Jul 07, 2014 7:12 pm

I feel that's what my gynae has done she told me I had vaginismus with out even looking at me, even though my my burning pain is constantly there and it's around the outside and entrance of my moo moo and nothing to do with my muscles inside! She only said it was vulvodynia when the NHS told me it vulvodynia! Where was your pain if you don't mind me asking?

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Post  Alana3 on Mon Jul 07, 2014 7:37 pm

where are you from? Yeah I would hope someone would look before spouting off with a diagnosis! It's possible to have both tho- I did.

My pain was at the entrance so I couldn't have sex because I couldn't get past that point Sad

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Post  morgaan_xo on Mon Jul 07, 2014 7:46 pm

Devon, you? Exacly!! My bladder doctor was annoyed that she didn't look but she thought I had a skin condition so I've been prescribed so many things that have made it worse

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Post  Alana3 on Mon Jul 07, 2014 7:50 pm

I live in Florida.  Yeah that'll happen its kind of experimenting with different things until something works... unfortunately

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Post  morgaan_xo on Mon Jul 07, 2014 7:59 pm

See the thing is, I know this sounds stupid but all the stuff I have read, like peoples conditions being looked into more/ being cured it's always been in America... So I'm not to sure if it's that known in the uk, and my gynae doesn't seem to think that she thinks I just have to stick at what she is telling me too... So I'm hoping she will consider other options when I see her!!

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Re: my story and I still need help!!

Post  Alana3 on Mon Jul 07, 2014 8:31 pm

Bring it up with her! cant help it not come to Florida and see my doc jk! Seriously though, every doc has their own bag of tricks so if she isn't working for you can you see someone else?  I have no idea how the health care works there...

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Re: my story and I still need help!!

Post  morgaan_xo on Mon Jul 07, 2014 8:37 pm

I'm going to, I have taken so many notes from this site.. So glad I joined it's making me feel so hopeful!!! And ahahaha I wish!! Everything seems to be better over there... And it's all free on the NHS over here so they basically don't give a crap unless I go private... But at the age of 17 I don't know how I'll afford it... I'm not to sure if there is other gynaes I can see on the NHS though... I'm getting so confused with this vulvodynia/vestiblodyania I don't know what the different is?

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Re: my story and I still need help!!

Post  sailor_moon on Mon Jul 07, 2014 9:57 pm

A GP once told me that if a Gyno does not do a proper internsl examination, they arn't a very good doctor!

A Uregynocoligist is a Gyno that also specialises in disorders of the bladder as well as the vagina.

If I were you I'd be doing my research on Gyno's in your area and seeking a second opinion!
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Re: my story and I still need help!!

Post  morgaan_xo on Tue Jul 08, 2014 6:40 am

What is a proper internal examination though? And I think thinks that's what I'm going to do if I don't get anywhere when I next see her! She doesn't seem interested at all!!!

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Re: my story and I still need help!!

Post  sailor_moon on Tue Jul 08, 2014 6:50 am

A proper internal examination is where the doctor puts on gloves and inserts a few fingers into your vagina with one hand, and feels around your internal organs, while with the other hand they will feel the outside area like your pelvis and stomach.

A good doctor will explain the process at they do it.

Do your research of specialists in your area. Look for a Gyno/Urogyno that has lots of experience.

It doesn't sound like she has any interest in helping you at all. It is ridiculous. I thought it was bad for me being in my 20's, but you are only 17 and the doctors arn't even taking you seriously either.

Do you have a family member or a good friend who is supporting you through all this? I'm so lucky to have my mum and my best friend who have both gone through their own vaginal problems.
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Re: my story and I still need help!!

Post  morgaan_xo on Tue Jul 08, 2014 7:18 am

My gp did that but it took all but 5 minutes but my gynae never did, she told me I had vaginismus with out examining me and the dialators she gave me was making it worse as I was stretching sore skin on the outside!!! And when I went back to see her she did th cotton bud test but never examined me properly... I think I'm going to, where are you from? And have you found any results??

I know considering I have had this problem since I was 14 they didn't seem at all concerned...which is a bit odd I thought I was to young to have any of these issues but obviously not!!!

And yea my mum and my boyfriend are really supportive of me and my boyfriends mum is amazing with me as she has had so many problems but even with support it's so hard to stay positive!!

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