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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, …

Comments: 7

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 …

Comments: 5

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 …

Comments: 4

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


vulvodynia and pcos

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vulvodynia and pcos

Post  angelfangs on Fri Oct 26, 2012 11:49 pm

hi

i'm having a lot of issues related to vulvodynia and pcos, i'm going to bullet point so its easier to read.

*diagnosed with pcos at 12 after ultrasound and blood test.

*on different pills for 7 years until i was 19 years old, both combined and mini pill.

*always had heavy/painful/irregular periods.

*saw 3 different gyns at the local hospital from 2005-2009 when i was taken off all medication and told i was discharged.

*had some very traumatic examinations by evil unsympathetic gyns and gps. i found this was due to them not being able to get inside my vagina only last year when my history of not being able to use tampons at all and the exams just clicked with something i read on the internet.

*was referred to new gyn at the local hospital, saw gyn in december 2011 and was examined to confirm i had a microperforate septate hymen that wouldn't let anything into my vagina. this was painful and i had sore burning a pain afterwards that wouldn't go away. a few days later took and canestan tablet and used the cream for "thrush".

*symptoms stayed so i visited a gp who examined me and took a swab and a urine test. negative for bv, thrush and urine infection but the dr told me to take another canestan tablet and eat probiotic yogurt.

*early january had a hymenectomy under general aneasthetic. only needed one stitch.

*early february i started having random bleeding, tummy pain and clots of endometrial lining (so far 1 in february, 1 in march and 1 in october). went to gp again and tested ok for thrush, bv and urine infection. burning vulva pain still there and by now i'd had 4 canestan tablets, 2 tubes of canestan cream and a ton of yogurt. gp said the tummy pain was my cervix and i was healed ok from the hymenectomy.

*refered to gyn and had appointment in june, she examined me confirmed again it was cervix pain and sent me for an ultrasound scan.

*had ultrasound in july, an abdominal one because i was bleeding and it would have been way too painful for a transvaginal one.

*ultrasound was clear and so was the swab and urine test the gyn did.

*august went to another gp as i still had all these symptoms and and the burning pain in my vulva had go to the point were i couldn't wear trousers anymore. she diagnosed vulvodynia and gave me amitrptyline, i went up to 50mg but it did nothing.

*saw same gp as last point again in september and october, have been refered to newcastles rvi vulval clinic. dr couldn't give me the pill to control the bleeding because of my weight, even though i'm the same weight i was when i was on the pill for 7 years and my weight was never an issue then, i was never weighed and my blood pressure was only measured 2 or 3 times in 7 years. gave me a tiny tube of lidocaine cream, utter heaven but i can't have anymore! Crying or Very sad

*went to family planning clinic because of gp recommendation to try to get the pill. was refused there too because of my weight even though i created imaginary boyfriend and imaginary sex life. the nurse there said some mean things about over weight people/steralisation/sex.

*saw another gp, this time trying the pcos that hasn't been treated for 3 years angle to try to get the pill because i really can't cope with all the bleeding, the tummy pain and vulvodynia at the same time. was refused again because of my weight, this gp sent me to another gp that has an interest in gyn matters.

*saw the next gp on tuesday (its friday night/saturday morning now) and she is the worst dr i have seen in my entire life and i've seen some terrible ones (including a gyn who thought all of his patients diagnosis were wrong so everyone had to be retested and he shouted at me because i hadn't had a period and made me cry, one of the nurses told me i was the 6th person that week who had cried because he was so mean to them). according to her all my problems are due to my "emotional state" and i need counselling or psychotherapy as this is the only thing that will rid me of my problems! she confirms my vulva hurts, my cervix is the tummy pain and i actually have a urine infection that is totally symptomless. after a long lecture about how medicine like the pill can't help me and how shedding clots of endometrial lining (thats what she called it, it looks like fleshy chicken breast stuff and hurts like utter hell when i'm passing them) is totally normal and it happens to everyone. she asks me to phone the gyn i saw in junes secretary as i have not been discharged.

*phoned hospital, gyn secretary says i have been discharged. chaos and a dozen phone calls ensue. drs practice is now having to appeal to the gyn to see me again but gyn is currently refusing as my ultrasound was normal. yeah, my hooha burns, i keep bleeding, the pain in my tummy is terrible and i just feel like crap, but totally normal because an ultrasound says so. Mad

anyone have any ideas/suggestions or know of any good gps in the north east of england? its so bad, i think i'm secretly dying and no one will tell me. i'm taking so many painkillers its not funny and they are only taking the edge of the pain off. and i'm sick of running out of sanitary things, i can't use internal methods because they are so painful but pads make my poor hooha scream. i haven't been able to do pelvic floor excercises since december because it hurts so badly, so now i leak wee every time i sneeze or cough. i can't keep living like this.

sorry for the long rant. i'm 22 years old, a virgin and i want my life back.

angelfangs

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Join date : 2012-09-25
Age : 27
Location : uk

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Re: vulvodynia and pcos

Post  Ceriane on Sun Oct 28, 2012 12:44 pm

You poor girl!!! What you've been through is awful, and really quite traumatic.....There's not a lot of advice I can offer as my problems sound different from yours....I just have vulvodynia which for me I think is secondary to a condition I have called pernicious anaemia which was untreated for a long time, and I think because of the damage to my nervous system, minor infections like thrush triggered a pain condition....I'm hoping I won't always have it, or that I can learn to manage it and it won't always be as bad as it is now....

Not sure if you've had an ultrasound or a laparoscopy, but in your case, it seems that they need to be looking into things like endometriosis, and then helping you to be able to manage your condition, at the moment your up in the air as you don't have a diagnosis.

I'm incredibly shocked by the way you've been treated by gynaecologists and medical professionals, these things need to be handled with care and sensitively.....everyone deserves to be treated well in hospital or in clinics etc....it's absolutely shocking, and I don't understand why they would be like that as they are paid to help!!! It's not the first time I've heard of it either....

To be honest, I've been to loads of people about my condition and they've all been really lovely towards me, touch wood I've never had a bad experience with a medical professional regarding this yet, I think I'd be traumatised if I had. However I'm just self treating for now, and managing myself, I'm pretty sure what's wrong with me now, and what I'm dealing with, so the rest is going to be self care, management. The only thing is with vulvodynia there are no easy solutions, so I have a list of what I'm going to try and I'm working my way through it. I'm not going to let it put me off having a relationship if I meet someone I really like (cos I did for such a long time) because I know I can work around it and manage it, and if a guy isn't understanding...I don't think I'd want to be with someone like that anyway, whether I had this condition or not!!!

Ceriane

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Re: vulvodynia and pcos

Post  Loulou on Tue Oct 30, 2012 11:22 pm

Hi angelfangs

I feel for you. You do seem to have been very unlucky to have come across so many unsympathetic GPs and consultants. Would the hospitals in Sunderland be another option or the Wansbeck? - might mean further travel but would be worth it if the staff there are more sensitive and helpful. (unfortunatley i've only used the Physio dept at Wansbeck so can't comment on their or Sunderland's gyno dept/staff. The physio i had at Wansbeck - Jane Thompson - could certainly help you with your pelvic floor) Alternatively have you tried your local GUM clinic - that's another option for getting some advice and suitable referrals (you can make an appointment without having to go through your GP)

One important thing, it seems like you have some very specific definable issues (pcos, problem periods, hymen and, i agree with ceriane, endometriosis might also be a factor?) so its not surprising that you are having vulval problems and pain. My understanding of vvd is that it is 'unexplained' vulval pain and it seems to me that a lot of your pain CAN be explained and therefore treated (so this should be a good thing if you see what i mean). If you can get your specific issues treated your vvd pain may go away if they are the root cause. Don't let them fob you off because your ultrasound was normal - so was mine but i still had problems.

Couple of practical things - from personal experience i would recommend you steer well clear of canesten cream if you do not have a thrush infection. I think it was canesten cream and suppositories that made my vvd worse - stop using these and you may find your vulval pain decreases to some degree.

Also, i would recommend using organic cotton sanitary pads if you aren't already - they're called Natracare. You can get them in Oxfam shops, Waitrose or on-line. These will help to minimise irritation as they don't have chemicals in. I read somewhere that Boots also do a similar own-brand version but i haven't tried those.

Hope you find that sympathetic doctor that can start you on your path of getting better.
x

Loulou

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