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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



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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


New member looking for self-care and treatment ideas

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New member looking for self-care and treatment ideas

Post  Millie on Thu Jan 15, 2015 4:12 pm

Hello
I am 25 years old and have been suffering from provoked Vulvodynia (Vestibulodynia) for the past year.

About 2 years ago I changed my contraceptive pill from Microgynon to Mercilon because I was experiencing side effects such as nausea and vomiting, however the side effects of Mercilon were much worse and I believe the main cause of all the problems I have experienced over the past two years; including vulvodynia. My skin and hair has become very dry and I have suffered from eczema on my arms and legs and also seborrheic dermatitis on my scalp, resulting in hair loss. I have become more anxious and stressed and have problems with digestion and bloating. About a year ago I started to experience pain during sex but tried to ignore it putting it down to vaginal dryness, the pain only got worse and worse until sex was unbearable. Believing I had thrush I used a clotrimazol pessary but this had no effect on the pain whatsoever. Weeks later I noticed a patchy, red rash on my back that was itchy and dry. A doctor explained that it was a yeast rash and prescribed me with a miconazole cream, after using this for over a week, the rash had engulfed my entire back, stomach, thighs and face. I was traumatised and had no idea what to do. I saw three nurses and three doctors and all of them were baffled, I was sent away with antihistamines and a hydrocortisone cream (something I was told would initially make the rash worse) and the rash calmed down and disappeared literally over night. On top of all of this I was getting urinary tract infections on a weekly basis. Believing all of these issues were down to the pill I stopped taking it, and noticed an amazing difference in the quality of my hair and skin, however sex was still painful so I was referred to see a Psychosexual Therapist after being told the pain was psychological.

I have now been visiting the same psychosexual therapist for the past 9 months who after taking some swabs diagnosed me with Bacterial Vaginosis, I was given a course of antibiotics I hoped that this was the end of the pain. Unfortunately it wasn't and after trying Trimovate cream with no success she referred me to the hospital last month where I was properly diagnosed with Vulvodynia. The doctor told me that it is possibly nerve related and advised me to take antihistamines and use a 5% lidocaine gel before having sex. The antistamines have not helped but I have recently been told to take a higher dose. The lidocaine gel helps but only very slightly and ideally I am looking for something to cure my Vulvodynia completely.

I am very much against the idea of taking Amitriptyline and will avoid it at all costs. After spending endless nights researching I think that I may have a hormonal imbalance, and that all of these symptoms are linked. I am waiting for the results of a blood test to confirm this even though my doctor has told me this is highly unlikely.

does anyone else with vulvodynia have these symptoms? or believe their vulvodynia is caused by a hormonal imbalance?

I have also tried; unfragranced soaps, moisturisers and washing detergents. (helped with skin irritation and urinary tract infections)
calcium vitamins (reduced pain when urinating)
drinking more water (reduced urinary tract infects)
different positions whilst having sex (helps slightly)
Latex free condoms (no help)
Lubricants (no help)
100% Natural tampons and sanitary towels (pain and irritation was reduced greatly in comparison to synthetic tampons)

Millie

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Re: New member looking for self-care and treatment ideas

Post  sailor_moon on Thu Jan 15, 2015 11:02 pm

OMG i dont believe it, your symptoms are just like mine, minus the skin rash. I had chronic nausea and vomiting 24/7. Every single day. And my vulvodynia started at the exact same time. My hair is falling out. I am constantly fatigued. My skin is dry.I get hot flushes. My vulvodynia symptoms are not just during sex, they are every day with no known aggrivators. It all started when I went off the pill. My vulvodynia is mainly itching and burning with nerve like pain in 1 side.

No treatment worked, antifungal, steroids, prebiotic, creams and lotions, antibiotics. Antidepressants because I got told it was all in my head (antidepressants made me so much sicker in terms of nausea and vomiting!) I got my hormones checked at least 10-20 times and the doctors said I was all good. What a load of shit that turned out to be! I got told it was all in my head and that I needed councilling.!

It took me 14 doctors and $12000 down the drain on non successful doctors and treatment til I found my current doctor. He did a hormone profile test which is when you get a blood test on day 7,14,21 and 28 of your cycle to measure what your hormones are doing from week to week. He also did an AMH hormone test. Well... results came back and we were blown away. I have very low estrogen, my FSH and LH are way too high and the AMH test as well as an ultrasound confirmed I have PCOS. Now this is where things get tricky. Most women with PCOS have high estrogen, not low!!. My Androgen is slightly high which is normal in PCOS.

I need estrogen, but the doctor also suspects I have endometriosis, which feeds and grows on estrogen. With endo, it can settle on nerves causing vulvodynia. So I am on a waiting list for a laproscopy and hystoscopy to see if I have it and remove it, and also see what else internally could be causing my vulvodynia.

So it's just a waiting game now for my upcoming op to come around and go from there. It could either be endo or the hormone imbalance causing my problems. I dare say a mixture of both.

Oh, and if you have any form of hormone imbalance, antidepressants will make it worse, hence me getting sicker. My doctor told me this info and was disgusted at how I have been treated. I came off them and feel so much better.

So yes, Get your hormones checked properly! Definitely! And get off any birth control because if you are on it the blood tests won't give an accurate reading.
I hope my story has helped you! Feel free to ask any questions!
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Re: New member looking for self-care and treatment ideas

Post  Millie on Sun Jan 18, 2015 8:11 pm

omg that's crazy, I have stopped taking the pill as well, it seems to me that the contraceptive pill just messes everything up and then even when you stop taking it you're stuck with the side effects. oh no it must be horrible to suffer with vulvodynia every day and not just during sex Sad I can only imagine how awful it must be.

I also got told the pain was all in my head to begin with and am constantly being told to use dilators. I cant believe you had to go through all that before getting some answers, my doctor was reluctant to give me the test as she believes there is nothing wrong with my hormones. so I am expecting to be told the same as you, that everything is fine when I really believe that it isn't.

I will definitely avoid the antidepressants after hearing your story! I'm still waiting for the blood test results but am thinking about trying a low oxalate diet but don't know much about it. I am also wondering if my vulvodynia is nerve related then how can my hormones be a part of the cause. its all so confusing!

Good luck with your op and all your tests and treatments, I hope everything goes well for you and you can figure out the cause of the vulvodynia. Thank you for your reply!

Millie

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Re: New member looking for self-care and treatment ideas

Post  sailor_moon on Fri Jan 23, 2015 11:04 am

Get your hormones checked. Obviously something hormone related has been going on for you to have been nauseated and vomiting on the pill. It has probably thrown everything out of whack. When my symptoms first started all I focused on was the vulvodynia, rather than focusing on what was going on with my entire body as a whole. Apart from vulvodynia I have nausea to the point of double vision, vomiting, irregular periods, Super heavy painful periods when I actually do get them, super sore boobs, hair falling out on head underarm and public area, migraines, hot gushes, period pain when I don't have a period, dry skin, extreme bloating, IBS, reflux, chills and fever on occasion.

If you can't get your doctor to help you, move on. Do your research on who the best specialist is in your area. Or try a really good naturopath.

Do you regularly suffer any other symptoms?
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