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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 2

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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: 6


Prednisone Injections?

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Prednisone Injections?

Post  WVR00 on Tue Oct 10, 2017 7:33 pm

Hello,
I am new to this forum and have been recently diagnosed with VVS. I had an issue after the use of a condom and I've never been the same since. I don't have pain, per se, but I have this uncomfortable feeling like I have a tampon hanging out all them time. My doctor gave me prednisone injections in vestibule and it helped the one side, but not the other. I also got a raging yeast infection. Has anyone had success with the injections? Her next step is to do laser on the vestibule. I'm very scared this won't go away. I can't take oral medication bc I'm planning for a baby and this has completely derailed that. Sex isn't painful while I'm having it, but really sore the next day or so. I've tried amtrip. Cream, hormone cream, steroid cream and now injections. Do I do any other round and risk the yeast infection? Or do I do the laser? It's so frustrating that the treatment of this is trial and error.
Has anyone has anything similar?

WVR00

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Re: Prednisone Injections?

Post  Warrior2010 on Wed Oct 11, 2017 2:40 am

Please consider pelvic physiotherapy. That lump you are feeling could be a very spasmed pelvic floor muscle(s). The first 3 years of having vulvodynia I had a small child so I just did acupuncture for the 24/7 pain I felt all over my vulva. It helped me cope. Then after a car accident that made things worse to the point where I could't empty my bladder- I saw a pelvic therapist. After releasing all the conceive tissue and exercises etc, I got 75% better - to this day I still can't wear pants because of the lump I feel and I still feel some pain during certain times in my cycle, but for me that was amazing results. I just started pelvic physio again and we are working only on that lump and my spasmed out abdominal's on that side. All this happened after having my child so try and get help before the pregnancy. My best advice. Hope this information helps you and maybe others too.

Warrior2010

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Re: Prednisone Injections?

Post  WVR00 on Wed Oct 11, 2017 11:55 am

Thank you for your reply. My specialist did an internal exam and dtold me my pelvic floor was totally fine. Not tight at all. She thinks it could be some type of immflamitory version of VVS, which is why she did the steroid shots. I'm getting a second option next week, but I'm due to get the next round of steroid shots. I'm worried that bc I got the yeast infection from them, that I will get another one. My yeast infections are immune to Diflucan and I need to use 2 weeks worth of cream to even begin to get better. I haven't had that many infections in my life, but for some reason, when I get them they are nasty. This condition is really stressful. Emotionally and physically. I hope everyone feels better.

WVR00

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Re: Prednisone Injections?

Post  WVR00 on Wed Oct 11, 2017 12:00 pm

I should also add that the tampon feeling is right at the bottom of my Vestibule.. like right by the glands... almost feels swollen. But doesn't look swollen... all other spots on my vulva are okay. She did the injections at the 5,6,7 o'clock spot she on vulva. The 6 and 7 feel much better, but the 5 still has that feeling of tampon hanging out.

WVR00

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Re: Prednisone Injections?

Post  sarisbaris on Wed Oct 18, 2017 5:07 am

I battled V for 15 years. I now consider myself cured. It wasn’t by accident. After 20+ western docs, I realized they couldn’t help. I saw countless alternative. Some helped but none cured. I followed the information from Anthony William. This is no joke. His advice cured it.

According to Anthony William, most cases of V are caused by strep. But since yours is a bit different I have a feeling that they it is caused by an unknown strain of the Epstein Barr virus. I recommend reading the book Medical Medium. Basically, EBV is virus that is currently unknown and undetectable with current tests. Usually EBV causes strep and strep can cause vaginal burning which is usually diagnosed vulvodynia. But during one of it's stages EBV searches out injured nerve endings and inflames them. So a simple injury could hurt for years if you don't tackle EBV. Also, yeast infections are cause by strep (another unknown/undetectable strain). Since EBV and strep go together, I'm guessing that's what you're dealing with.

First educate yourself on EBV and strep. Next listen the UTI show because he has an ice therapy that might help. Next, do the metal detox. Metals feed EBV and strep.

Shows/pages that will help:
https://soundcloud.com/asha-bhuyan/medical-medium-uti?
http://www.medicalmedium.com/blog/epstein-barr-virus-revealed
http://www.medicalmedium.com/blog/heavy-metal-detox
http://www.medicalmedium.com/blog/streptococcus-revealed

My blog: http://myvulvodyniacure.blogspot.com/2016/12/if-you-are-in-pain.html

While you are educating yourself do these things now:
AVOID: eggs, dairy, wheat, corn, aluminium foil, water that is not filtered, canola oil (which is in almost everything
SUPPLEMENTS: licorice root, lemon balm and nettleleaf (3 cups a day), esther C, I usually recommend cat's claw but if your planning to get pregnant soon stay away from it, golden seal (2 times a day, 2 weeks on 2 weeks off),
A green juice would also help. Celery juice is great. Celery/cucumber/parsley or cilantro. See metal detox.
FOODS: Note all the foods he recommends. They make a difference. Lemon water/honey upon waking, green juice, then smoothie, salad for lunch… veggies heal.

Also, he has great shows on pregnancy.
http://www.medicalmedium.com/blog/healthy-pregnancy
https://soundcloud.com/medicalmedium/foods-supplements-for-pregnancy
There's also a great chapter in his second book Healing Foods.

sarisbaris

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Re: Prednisone Injections?

Post  Warrior2010 on Sun Oct 29, 2017 7:38 pm

Honeatly pelvic phyaiitherapist are trained to evaluate the state of your muscles and know exactly what ti do. My gynecologist even admitted to that and said that he refers people there regularly. Doctors only train to asses medical problems not muscle problems. That "tampon hanging out feeling" you described at 5 o'clock is exactly where I feel my lump. That is where the obturator internus muscle. Look it up- you will understand. Injections are not a long term solution. Please rule it out that the priblem is not muscle related. My best advice.

Warrior2010

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Re: Prednisone Injections?

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