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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

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: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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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 …

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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

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


Just diagnosed / Aimtriptyline weight gain!

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Just diagnosed / Aimtriptyline weight gain!

Post  Castle16 on Sun Apr 17, 2016 2:44 pm

Hello:) So glad to find this online support group site! My symptoms started almost 6 months ago (Nov 2015). Woke up one morning with frequent urination (I've always had frequency since menopause) and never had a UTI before. Fast forward...after seeing urologists, a gynecologist, urogynecologist, NP who specialized in Interstitial Cystitis, 2 cystoscopies, many ecoli UTI's....I feel the final diagnose is correct - vaginal atrophy (started premarin cream 4 months ago) and vulvodynia (just diagnosed with this couple days ago by gynecologist). Symptoms went from frequent urination, to severe burning, to a CONSTANT horrible urge to urinate, to a steady burn (still some frequency, especially when another UTI) on a pain scale from 4-6. I couldn't tell if it was my urethra or my vagina where the burn was coming from! Gyno the other day said there was redness around the outside of my vagina most likely causing the burning (said urethra and vagina inside looked good). Vaginal was not sensitive to touch at all, but I was burning badly after the vaginal exam was over.

She prescribed a vaginal ring, liquid lidocaine that I am to soak in a cotton ball and sleep with it pressed against my vaginal opening at night, and she wanted me to continue on the aimtriptyline I was put on 2 months ago by the NP I saw. I told her NO WAY! Reason being, in 2 months I have already gained 14 lbs! It causes carb and sweet cravings and I am trying not to indulge, but I read that the weight gain from it could also be hormonal related. I know over 50% of women gain weight on aimtriptyline. After 2 months on it and still have irritation/burning (I have frozen ice down there 24/7) I don't think the aimtriptyline is even helping (other then I sleep great). She said it could take longer, but I would like to try the ring and lidocaine without the aimtriptyline because I refuse to gain any more weight! Has aimtriptyline really helped anyone with my kind of burning? Thank you!!

Castle16

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Re: Just diagnosed / Aimtriptyline weight gain!

Post  emalita on Sun Apr 17, 2016 4:44 pm

Hi and welcome!

Don't you hate that everything is so darn close down there that it is hard to tell exactly what hurts! I've had the same issue with not knowing if it was my urethra or vagina that was causing the symptoms. I refused antidepressants and anticonvulsants from my OBGYN. I was on them as a kid for migraines (including amitriptyline), and I hated the way they made me feel. So, unfortunately I can't speak to them for vulvodynia, but I know a lot of women have given them a try on here.

Have you ever tried a powder supplement called D-Mannose for prevention and treatment of your UTIs? Two of my Naturopaths recommended it to me when I was having UTI issues. It only works on UTIs caused by E coli, but there are studies on its effectiveness on PubMed. So it's not just fluff that only Naturopaths use. It is a little sweet and a little bitter but super easy to take (just mix it with a little water). I bought mine on Amazon for pretty cheap.

My current specialist has me on a bioidentical estrogen tablet vaginally every other night (among other things), but I'm only starting my 5th week of treatment. He said it will take about 2.5 to 3.5 months for me to feel a difference; so I can't comment on how well it's working yet.

I assume all of your tests come back negative for everything? The only thing that stopped my urethra/vaginal burn (also had a weird prickly feeling at my urethra as well) was boric acid suppositories. However, that did nothing for my current pain, but at least I can check one thing off my list.

I hope the ring and lidocaine relieve your pain!!

emalita

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Re: Just diagnosed / Aimtriptyline weight gain!

Post  fairlight10 on Sun Apr 17, 2016 5:08 pm

Castle 16 Go back to your doctor and ask to be put on nortriptyline 20mg at night.I have been on this since June 2012 with a diagnosis of vulvar vestibulitis. Your story is very similar to mine. It takes a longtime for these meds to work but eventually I hope you will notice a difference. Persevere with the side effects.

fairlight10

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Re: Just diagnosed / Aimtriptyline weight gain!

Post  Castle16 on Sun Apr 17, 2016 6:29 pm

Thanks for your reply about nortriptyline - did you have weight gain from this med? I know it's just like aimtriptyline. I was hoping the vaginal ring and the liquid lidocaine/soaked cotton ball would be enough treatment because the weight gain has been emotionally upsetting Sad. Really appreciate your responding. I'm new to this site, so not sure how to navigate it all. Not sure if I'm supposed to re-type my subject line in the 'post title' section under Post a reply -so sorry if I didn't do this right! I hope you are feeling better Smile

Castle16

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Re: Just diagnosed / Aimtriptyline weight gain!

Post  fairlight10 on Sun Apr 17, 2016 6:55 pm

Nortriptyline is a more advanced drug and more expensive than amitriptyline. It has far less side effects and suited me more than amitriptyline. I have been on 20mg until last September when my dr up it to 30mg to help with my migraines that I also have. That extra 10 has helped both conditions. I have put on a few pounds. Yes it does give you the munchies as someone else said on this forum.

fairlight10

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Re: Just diagnosed / Aimtriptyline weight gain!

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