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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 …

Comments: 1

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.

Comments: 1

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 …

Comments: 0

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 …

Comments: 0

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


Getting to the point of wanting to End Everything ADVICE NEEDED

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Getting to the point of wanting to End Everything ADVICE NEEDED

Post  SoHelpless on Mon May 14, 2018 10:39 am


Good morning everyone.

I am at my ends here, from suffering with a unknown pain for the last five years of my life it's really taken a toll on my mental health. So finally I've got enough courage to ask for advice here.

I am currently 19 years ago and five years ago I suffered from a chronic vulvar pain, usually sprouting from sitting down in school all day in those horrible hard chairs. I suffered in silence for the most part eventually bringing up the courage to go for a physical exam only to be told that IM FINE?! I for one do not like this as I want there to be something you know? I want to be diagnosed and given medication so I can live my life again. Then at last 3 years into this I felt free, I was pain free! But to no surprise I got a urine infection and after that well it came back. full force, went to the doctors again telling me nothing was wrong no infections yet she even stated I looked inflamed down there. my mother is no help bless her she simply cant understand and she thinks that I am doing it to myself by thinking there is pain there when there isn't but I just know there is. I can understand that my brain my make the symptoms a thousand times worse but it's still there. Please ladies, people on here who have suffered help me identify what it is I have and how I can manage it so I can live my life again.

My symptoms are this:

Burning towards end of urination
I have noticed that during the end of urination I feel almost crampy and get a horrible tightness
Inflammation from sitting all day (I have no choice this is my work)
Sex is painful (most of the time)

Please understand that this is no infection I have had several tests done, nothing has been found. Why am I feeling like this?? is this a type of vulvodynia?

The pain isn't agonising but it is enough to constantly be on my mind. I cant speak to anyone about it IRL


Thank you

SoHelpless

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Re: Getting to the point of wanting to End Everything ADVICE NEEDED

Post  fairlight10 on Mon May 14, 2018 6:49 pm

Hi Sohelpless. It sounds all too familiar. I also have vulvodynia, vulvar vestibulitis to be precise. I was also very red in that area. Numerous doctors told me I had thrush, UTI, atrophic vaginitis.The medications I was prescribed just made it worse. Saw a gynaecologist privately and within ten minutes he diagnosed vulvodynia. Saw him again on the NHS where I had a hysterscopy ,removal of lost Morena coil and vulvarscopy. He then diagnosed vulvar vestibulitis. I was prescribed 20 mgs Nortriptyline which I still take every bedtime for the last 6 years. This gave me the relief that I needed to get my life back. I can now sit on a chair. I have a cushion with a hole in the middle for when I drive my car. I had 20 sessions of acupuncture which helped with the emotional stress that this condition can cause. Stress makes this condition worse, getting upset and being unwell. Keep drinking water to take the sting out of your urine. Acidic foods and drinks will cause your urine to burn when you urinate. Check out UK vulvar pain society. They have useful information on their website. Show this reply to your mum, she may start to understand that this is not your fault and is actually not that uncommon. It's just people don't want to talk about it. Some doctors don't even know of the condition. Go back to your doctor and tell her this is what you believe you have. She may try you on tricyclic antidepressants used in their low dosage they are effective for pain relief. She can try you on some topical cream. Ask to see another doctor if she is unable to help. I wish you luck and keep in touch with your progress

fairlight10

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Re: Getting to the point of wanting to End Everything ADVICE NEEDED

Post  jungleclover on Mon Jun 04, 2018 10:38 pm

Hello,

I am 23 and had symptoms that started when I was your age. Today I am symptom-free and have sex normally. My issue was the result of a semen allergy and infection after infection due to the fact that no one knew I was allergic.

As a result of my experience, I will be applying to physical therapy school where I intend to specialize in women's health. Right now I work as an aide in a physical therapy clinic that does women's health and to me, it sounds like you could really benefit from a trip to a women's health physical therapist. My recommendation would be to try to get in with the vulvular specialist from the gynecology unit of your healthcare provider. They will have a ton of useful resources for you and hopefully have a better idea of what's going on. At this appointment, it may benefit you to discuss the possibility of women's health PT or possibly an antidepressant like gabapentin to quiet down those pesky nerves. I'm sure your MD will have some ideas as to what could help you. Because I'm only an aide I don't have a ton of insight into what's going on with you but I know that pt is helpful for reducing overactive nerves, helping muscles to relax, and returning to normal functionality.

Reading your message reminds me of when I was your age and had no idea what was wrong with me. It is such a terrible feeling and it is so difficult to navigate medical institutions and get the help you need. I am wishing you all the best. I believe you that it is painful and as someone who works with women with vulvodynia vaginismus and the like I can tell you that you shouldn't feel that way and you shouldn't have to live that way. You will get better!

-Aleah

jungleclover

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Re: Getting to the point of wanting to End Everything ADVICE NEEDED

Post  sarisbaris on Tue Jun 05, 2018 2:44 am

I'm so sorry for you suffering. I battled V for 15 years and it was a nightmare. I'm healed now. My heart always hurts reading these posts Sad I healed myself using fruits/vegetables as medicine and some herbs/supplements.

I followed the protocol by Anthony William. According to him, pelvic inflammation is caused by an unknown/currently undetectable strain of strep. This strain also causes UTIs. So I'm guessing your battling strep. Although, I would do one protocol for herbs for the strep and another for the pelvic inflammation. It's also going to require you remove the foods that feed these viruses.

Here's my blog:
http://myvulvodyniacure.blogspot.com/2018/05/basics.html

I have noticed most of the women I talk to with V also have UTI issues, so I added a UTI section:
http://myvulvodyniacure.blogspot.com/2016/12/if-you-are-in-pain.html

Please don't give up! Just keep trying stuff.

sarisbaris

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Re: Getting to the point of wanting to End Everything ADVICE NEEDED

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