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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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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: 8

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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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: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

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


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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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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