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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


Does anyone else have Endometriosis?

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Does anyone else have Endometriosis?

Post  CYF on Thu Oct 01, 2015 5:00 pm

Hi everyone,
I'm writing a new post because after 5 years of searching/struggling through my burning vaginal pain, I finally got a diagnosis. My Dr discovered that I have endometriosis and he surgically removed the misplaced tissue. But it doesn't end there. I have no idea how to proceed with treatment aka prevention of a future flare-up. My Dr. was wanting to put me on hormonal birth control (more specifically, the Depo-Provera shot) and I told him I wasn't comfortable with that. I have had horrible side effects to BC in the past.

If anyone has any advice/suggestions regarding what to try or what to avoid, I would really appreciate it. Thanks!

Also, FYI, these have been my main symptoms over the years:
-dull burning deep internal vaginal pain
-deep feeling of burning/inflammation/pain deep within my vagina during and after intercourse
-pain in vestibule during sex
-pinchy crawly contraction-type sensations in vagina
-digestive difficulties: alternating constipation and diarrhea
-for years i was having really heavy discharge but that has gotten better
****NOTE: Drs say that painful awful periods are the trademark symptom of Endometriosis, but that isn't always the case. My periods have been moderate. Years ago, I saw an Endometriosis specialist because I suspected that I had it, and he dismissed me after I told him that my periods were fine. 5 years later, and I realize I was right. Every woman is different and symptoms vary.

If you have any questions please feel free to let me know.

-C

CYF

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Re: Does anyone else have Endometriosis?

Post  sailor_moon on Fri Oct 02, 2015 8:31 pm

I had endometriosis removed 3 months ago. However it did not contribute to my vulva problem. I also have big digestive problems, I have chronic gastritis (chronic inflammation of the stomach, kinda like chrones disease but inflammation stomach instead of bowel). I suffer from severe reflux, I used to vomit every single day, nausea. Alternating constipation and diarrhea are classic endo sufferer symptoms, even after my surgery I still get this sometimes.

I recently read about digestive issues and vulvodynia and a link between the two being associated with candida overgrowth. I tested negative for candida every time until 4 weeks ago it came back positive. Problem is it seems to be resistant to fluconazole and clotrimazole.

Also has your PH been checked?

As for birth control I refuse to go back on it as I never had any problems until I came off it and all these problems showed up. If you have a hormone imbalance and want to have a blood test, birth control will hide any imbalance you may have and you will not get a true result. Have you had your hormones checked?
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Re: Does anyone else have Endometriosis?

Post  CYF on Fri Oct 02, 2015 11:24 pm

sailor_moon,

Thank you for your helpful reply. Like you, I never had any of these issues until after I went off birth control.

How did you find out that you have chronic gastritis? Does that show up on a CT scan? I had a CT scan a couple years ago and "nothing unusual" was detected - my Dr wanted to proceed with an endoscopy/colonoscopy but I didn't do so; it seemed too expensive/drastic at the time.

Do you have any issues with nutrient absorption? My Dr did a stool test and it indicated that I am not digesting/absorbing fats properly. I have no idea why this is the case. Dr thought it might be Celiac but then I tested negative.

Which type of Dr did you go to for your candida testing? In other words, was it a standard yeast test that a OB/GYN typically does, or was it a different type of candida test? I'm curious what my candida level is. It tested "normal" at the OB/GYN office but I'm wondering if there is a different/more comprehensive test.

My pH and my hormones have not been tested in years. Does a too high/too low pH contribute to these symptoms?

CYF

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Re: Does anyone else have Endometriosis?

Post  sailor_moon on Mon Dec 14, 2015 9:05 am

I literally only just saw your reply! So sorry I never got back to you! Hope things have improved, 2 months later.

Chronic gastritis showed up via endoscopy, it's the only way to diagnose it. Was meant to have colonoscopy too but it never happened due to the doctor on duty leaving and another doctor who did it didn't have authority to do the other end!

Hormones, candida and PH all tie in with one another. I've since been treated for candida and had 2 more swab tests done which have come back negative but I still have vulvodynia. I do not get extreme redness and as bad of a blistering feeling as I did previously but the itching and burning is still there
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Re: Does anyone else have Endometriosis?

Post  ringostarr26 on Wed Jan 20, 2016 6:48 pm

I also have/had endometriosis. Mine was scraped off back in 2006 when I had a dermoid cyst removed from my ovary. Honestly, I don't think my endometriosis contributed to my vulva pain but I could be wrong. Mine seems to be heavily related to Overly tight pelvic floor muscles that stemmed from a bad injury/fall to my tailbone in high school. My vulva specialist told me birth control can cause problems with vulvodynia. This probably isn't much help but I just wanted to say I'm in the same boat with endo. It definitely isn't a fun condition to have.

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Re: Does anyone else have Endometriosis?

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