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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 …

Comments: 0

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

Cleveland Clinic - Pain Management, Weston, FL

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Cleveland Clinic - Pain Management, Weston, FL

Post  SinclairSassy on Sat Apr 28, 2018 8:18 pm


Has anyone gone to a Pain Management doctor at Cleveland Clinic - Weston, FL? My primary care doctor (the only doctor that actually pays attention to my whole body, not just one disease/affliction) told me that the city I live in is too small to have a facility that could work through all of the nerve, back, V pain I have and suggested I go to Mayo Clinic or Cleveland Clinic. Mayo really didn't seem to have anyone that knew about V, so I crossed that one out. Cleveland Clinic in Cleveland had a couple of people that worked with V. But as I was looking at doctors, I saw that there are some in Florida that list V as a specialty. Florida is much closer for me (I live in Alabama).

Of course, I have seen other doctors that list V as a specialty, but the minute you sit down and tell them what is going on, they suddenly realize that maybe V should not be listed under the specialties they treat - so it's always a crap shoot.


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Re: Cleveland Clinic - Pain Management, Weston, FL

Post  SinclairSassy on Tue May 22, 2018 7:13 pm

I guess, as usual, the answer is no. There is no help out there, is there?


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Re: Cleveland Clinic - Pain Management, Weston, FL

Post  infinitelywondering on Sat Jun 02, 2018 9:09 am

Sinclair Sassy,

That is simply not true. There’s certainly HELP out there, it’s just whether it can cure you. Everybody is different and th cause of Vulvodynia can be different so of course not all treatments are going to work. It’s about trying to look positively on what is (as we all know) a very negative situation. When I started looking positively about things I started to feel a bit better- obviously not cured but just happier in myself.

I think it’s alwaus good to try and be as positive as possible especially on a forum where so many others are suffering and it’s perhaps not always the best to send out a negative message. Keep fighting and you’ll get there one day- we all will.

This forum in itself is help. There’s physio. Antidepressants for nerve pain. Lidocaine. Surgery. Diet. Biofeedback and dilators. Aloe Vera feel. Steroid creams. Pelvic floor exercises. Botox injections. Laser therapy

That’s to name just a few^

Keep going and don’t lose hope


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Re: Cleveland Clinic - Pain Management, Weston, FL

Post  Alana3 on Sat Aug 11, 2018 12:37 pm

I wish I had seen this sooner! Yes I've been to Cleveland clinic in Westin but chose to stay with my private doctor Dr. Trabin in west palm beach who is affiliated with Cleveland. If you can go to him hes an absolute God send, but the doctors at Cleveland were top notch also! I just prefer private practice. Dr. T did my vestibulectomy and I have no complaints. If you have questions, feel free to directly message me aa I'm not on here anymore much.


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Re: Cleveland Clinic - Pain Management, Weston, FL

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