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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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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: 4

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: 9

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


Is there anyone out there with these conditions!! Need Suggestions!!

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Is there anyone out there with these conditions!! Need Suggestions!!

Post  painful on Sun Jul 17, 2011 4:57 pm

Hello everyone,

I've just joined this forum and would like to share my story and like to find out if anyone out there in same condition?

I am 23 old and my symptoms started about 4 yrs ago with yeast infection. I have very severe bacterial/ yeast infection where i don't have a relive from all the painful symptoms and discharges not even for one hour. I have been continousally examined by many different doctors have done so many procedures but other than yeast infection no dr had anything to say. Its very irritating, but more than that My Biggest Problem is SEX. I have been in a relationship with One guy all over my life and never had a good sex. Every time we try its seems to be impossible for me. He is very understanding unlike other guys, but now it seems like i am loosing him. He always asks me when its going to get fixed??
Recently, after taking all the Antibiotics and treatments when nothing was working, my Gynecologist referred me to a Vulvo specialist. After my visit, my dr says i have Vulvodynia due to bacterial infection. He gave me Antibiotics for yeast and Estrogen cream. and he says if nothing works i can go for surgery. Its been one month i have taking the medications and i have no relive from the pain and other symptoms. I really cant take this anymore. Even if we try to have sex, its feels soo swollen and like an acid being poured on the cut. Another option he mentioned was Botox injection. But i really dont want this.I am thinking to go for surgery.

Is Going for Surgery a good idea? Has anyone out there have done the surgery and have they found any relive or any complications came across with. Please share your ideas.

Thanks

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Re: Is there anyone out there with these conditions!! Need Suggestions!!

Post  Sebby (Admin) on Sun Jul 17, 2011 9:16 pm


Hi and welcome to the forum

From what I know of surgury can work but its a huge thing to go through and for me it would be the last option. It seems your gynea has not mentioned anything to do with Pelvic Floor therapy or biofeedback? Not suprising as most drs know little about it.

I would like to know if you have actually tested positive for yeast/bacteria recently? It seems drs are all to quick to give out creams and antibiotics/antifungals even when the women has not tested positive. Its like they do not know what else to do. Make sure firstly that you are tested again to make sure no yeast or bacteria infection is still present.

Then start researching other available treatments. Many women including myself are looking into Pelvic Floor therapy (mine is specifically from www.vulvodynia.com) Dr Glazers biofeedback protocol. I have had a break for a few weeks as had to have another vaginal sensor shipped over. You can also look for a Women's Physical Therapist. Check that they have treated the condition before.

Get yourself a copy of 'The Vulvodynia Survival Guide' Glazer & Rodke for a good all round intro to the condition and treatments.

Also a book many recommend is 'Ending Female Pain' Isa Herrera - she concentrates also on the Pelvic Floor theory. That an unstable and tight Pelvic Floor causes continued pain after the original trauma (either infection or injury) and prevents the vulval skin from healing and proper blood supply getting to the vulvar

Another option is medication used for nerve pain. Either an antidepressant like Amitriptyline or anticonvulsants like Pregabalin. I am on Pregabalin. I feel that it was working coupled with the biofeedback but had a bad flare up recently since being unable to do the exercises so do not feel they work just on there own without other physical treatments.

Im not saying you cannot try surgury but that it would be useful to look into less invasive treatments first.

We have all had to pretty much research this condition and treatments ourselves due to a lot of the medical community knowning little about it. So if a doctor says there is nothing much more they can do for you....check with us first! and as you learn more you will know what is worth trying and what options you have.

As for sex another good book to get is 'Let Me Count The Ways' discovering great sex without intercourse. Klein & Robbins - Im not saying that you will never be able to have good intercourse with little or no pain. But it is true that we have to be very creative with this condition. Try what least hurts to keep the intimacy whether that is oral or touching. Try to experience pleasure again so your brain is not always linking your Vulva to pain.

This is a lot of info to take in so do some research and dont give up trying to find an answer to your pain.

Take Care






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Re: Is there anyone out there with these conditions!! Need Suggestions!!

Post  Zazu on Mon Jul 18, 2011 2:07 pm

Hi there,
If you read the recent posts on this forum, you'll find that many women have a similar story - it starts with an infection and then the pain continues, even after the infection has cleared. The pain can be due to hormones, too many nerve endings that sense pain which grow after a sustained immune response to infection, or pelvic muscle problems. Sarah already gave you a great, detailed response on the treatments for this.

I'm surprised, too, to hear that your doctor has only given you one option before the surgery. Usually, they try a topical cream (like estrogen). If that doesn't work, then they can give you a compound cream using drugs that work on the nerve system to calm your nerves (gabapentin or amitriptyline). If that doesn't work then they give you those drugs in pill form, usually amitriptyline (a low dose antidepressant), then gabapentin or pregabalin (an anti-epileptic).

Personally I'd look into a book called "When Sex Hurts' by Dr. Goldstein for a detailed explanation of causes, symptoms and treatment options. Surgery can be quite successful, but it also carries risks. Usually it is more successful if you get physiotherapy alongside it, so that's really key to look into.

Best to you
Katie

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Re: Is there anyone out there with these conditions!! Need Suggestions!!

Post  Sarah001 on Tue Jul 19, 2011 7:31 pm

I'm with the other girls on this one, surgery isn't a small thing and should only be considered as a last option after PF therapy, medication etc. All the books above are worth a read but I would try Amy Stein's "Heal Pelvic Pain" first as it's very inexpensive and covers much the same as Isa Herrera's book which is alot more expensive. "When Sex Hurts" is also very good, especially for figuring out what your problem is caused by. Don't rush into surgery just because a Dr can't be arsed to look into current treatment options, there are women out there who have been made worse by surgery so it's a very serious decision. The pelvic floor is something all women with V should get checked properly by a physio who uses biofeedback, it's the only reliable way to see exactly what's happening with those muscles.
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