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» What's next?
Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

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 …

Comments: 4

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 …

Comments: 3

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 …

Comments: 35

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: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


New Member Need Advise!

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New Member Need Advise!

Post  Julie326 on Sun Nov 27, 2016 6:51 am

Hi!

I have been suffering with Vulvodynia since 2013 when I was 21. Had previously not had any problems down there other then the occasional yeast infection. It started in 2012 when I was put on Beyaz birth control. After a couple months on bc, I got a kidney/bladder infection that lasted for 5 months. First one in my life! Was placed on Bactrim (didn't work) and Cipro numerous times. My Gyn finally gave me a 20 day supply of Cipro that did finally get rid of the infection. During the last course of Cipro I started getting the signs of Vulvodynia starting around my anus. I also want to mention during these 5 months I was also getting recurrent yeast infections from the antibiotics. I was prescribed the standard Diflucan for that along with getting otc Monistat. After visiting my Gyn and telling her the syptoms, she referred me to a Urogynecologist. He asked me questions and did the Q-Tip test which did not cause pain. He also told me my pelvis was normal. I was prescribed cream compound of Amitriptyline with Baclofen to apply when needed. The cream gave instant relief. I was pretty much symptom free for 2 years! I was able to wear jeans, sit for as long as I wanted and have sex. It was great! I started to forget that I had Vulvodynia until September 2015 when I got Bacterial Vaginosis and haven't been right ever since. Went back to the Urogynecologist who told me to keep applying the cream (still am) and to take birth control (no way!). I found a doctor in the next state over who specializes in Vulvar pain and she prescribed me oral Amitriptyline low dose. I took that for 4 days and had a panic attack (didn't see any difference in pain, maybe too soon?). Then we tried the lowest dose possible of Gabapentin, took for 1 day and it was horrible, could not remember a thing. The doctor wanted to keep pushing medication which I'm now scared to death of so I stopped going there. I'm now trying physical therapy, on my 3rd week, not sure if it's helping or not but I'm doing the exercises everyday. I am wondering what to try next? My sypmtoms are confusing and contradictory. Usually I am in no pain during my period but sometimes it makes it worse. All other days I'm in pain except during the few days of ovulation. Standing up and laying down feels ok, sitting for the most part feels bad. My Vulvodynia is good in the morning and gets worse towards the end of the day. It's not affecting my sleep, but it's hard to wake up knowing I'm going to be in pain that day. Tampons don't hurt nor does sex. However, a day or so after sex I get flare ups that can last for months. Also I'm still getting sharp pains in my anus. Pretty much get pain all over down there.. One of my doctors thought it was from nerve damage hurting my tail bone 15 years ago, but I'm not too sure, why would it start now? I've been putting coconut oil on, it's not helping though. I think I'm going to try shaving a little down there even though it hurts so my compound cream can reach my skin better. I do oatmeal sitz baths once in a while and while in gives me relief, the pain always comes right back. I'm seeing my Urogynecologist next week and would like to be able to give him recommendations on things to try. Thing is I don't want to try something that isn't worth it because it costs a lot of money for testing with my insurance! I'm trying to narrow this down between nerve damage, hormones, yeast, etc..? I've been thinking of Acupuncture but am a little skeptical. Any advise? This all feels like a bad dream that I can't wake up from!

Julie326

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Re: New Member Need Advise!

Post  PainBlogger on Sun Nov 27, 2016 12:23 pm

I've found acupuncture helpful. It's been expensive though and I'm not sure how effective it would have been if I wasn't on duloxetine and had had physiotherapy too.

If you go here: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement you can read what I've tried.

PainBlogger

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Re: New Member Need Advise!

Post  fairlight10 on Sun Nov 27, 2016 1:57 pm

You could ask to try Nortriptyline. It is similar to amitriptyline but much better with less side effects. Been on it 4 years and gave me my life back. Had 20 sessions of acupuncture and this helped during the first 18months of having vulva r vestibulitis. It would de stress the body plus he was counselling me at the same time. This condition can do your head in, so anything that can calm your body and mind is a good thing. Good luck.

fairlight10

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Re: New Member Need Advise!

Post  PhoenixFire on Sun Nov 27, 2016 10:06 pm

Hey there. I'm a new member too and I feel you on not knowing how to narrow down what's causing this. I'm actually stuck between the same things that you are, since this flare up started when I stopped birth control which makes me think hormones, but the pain feels like it could be nerve related, and I also get burning pain in my lower back that could be nerve related as well. It's all so frustrating! But we aren't alone.

PhoenixFire

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Re: New Member Need Advise!

Post  Roselilyflower on Wed Nov 30, 2016 9:47 pm

Hi there, I am a new member and I do feel for you, this condition can really get to you, some days are easier but sometimes i just want to cry and climb into a little hole and hide. Its been 5 months since my diagnosis and its been a bumpy road :-(. It started from an allergic reaction I had from thrush cream. I have been with my partner for nearly 5 years and he has been so patient but when it all started before I was diagnosed, alarm bells were ringing and I thought I could of caught something but luckily all tests came back clear. Most creams have not done much for me but I am on 10mg amitriptyline and it seems to be helping me, it does take a week or so for it to kick in though and it can make you feel quite groggly and it gave me a funny tummy but those affects soon wore off. I have been on it for 2 months now. But recently i have diagnosed with PID and among that I have endometriosis so I am on antibiotics, antifungals, the pill and the nerve blocker/anti depressants. Which is stressed me out abit so I decided to try reflexology, it was a very relaxing but odd feeling as I could feel sensations in my body which corresponded with the areas on my feet. Annoyingly, the vulvodynia symptoms have returned which i think is quite strange. Im not sure wjether he treatment caused an inbalance or what. I know I dont want to be on pills for the rest of my life so I am trying my best to fond a long term solution to this problem as I am sure you all are. I am very warey about using creams as I have had a few allergies to various soaps, lotions, medicated creams and oinments ect I am terrified it will make it worse. I do believe in holistic treatment as well as conventional treatments, luckily we in the UK have the NHS but extra treatments such as reflexology/ acupuncture and other therapies are not and can be quite expensive. I am will to ty accupuncture. If anyone has any info on treatments for this condition which may not be seen as conventional please let me know. Thanks

Roselilyflower

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Re: New Member Need Advise!

Post  neesegjohnson on Thu Dec 08, 2016 3:54 pm

You should try acupuncture..it seems to be working for me and I have also tried everything. Also try a low oxalate diet/low acidic diet. I am also taking 2 calcium citrate pills a day.

neesegjohnson

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Re: New Member Need Advise!

Post  tinkerbelle2 on Fri Dec 09, 2016 3:11 pm

Hi Julie, a lot of your story sounds familiar! I am able to have sex and use tampons as well (although if I'm really sore I don't as it is just too uncomfortable) Feel free to PM me if you want to chat x
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tinkerbelle2

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Re: New Member Need Advise!

Post  chipper on Tue Dec 13, 2016 12:19 am

Julie-
I feel like I could have written your story!!
I have been dealing with the same issues for 2 years and it started after taking Cipro.
I had a bartholin cyst abscess and took several courses of it. I started having rectal pain, then pelvic pain.
Sitting is the absolute worst and my pain is most intense in the evening and at night.
I can go for periods of time where I have no pain at all then something (I am never sure what) will flare it up again.
I have tried Amatryptiline, Gabapentin and other medications and I cannot tolerate them at all.

I tried acupuncture and I think I will be going back to that because it did seem to help some.
This is a terrible pain that you cannot really describe and certainly not discuss openly.
It's not like you can say you have a headache or a backache.
It's exhausting and overwhelming.

chipper

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Re: New Member Need Advise!

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