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» Looking for a friend..... and new problems
Thu Jan 18, 2018 5:08 pm by PainBlogger

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» Vestibulectomy today and no pain
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» Why don't more women know about pelvic pt?
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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 6

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

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 …

Comments: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

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 …

Comments: 1


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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