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» Anyone have pain with urination?
Yesterday at 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

Wed Oct 10, 2018 2:01 pm by pussycat

» From a concerned husband
Wed Oct 10, 2018 1:46 pm by shope610

» Had this for 5 years, looking for people who understand
Wed Oct 10, 2018 1:55 am by Npage14

» 6 year sufferer but I’ve found some hope
Wed Oct 10, 2018 1:33 am by Npage14

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

Change in birth control question

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Change in birth control question

Post  Jo44 on Wed Jul 18, 2018 3:47 pm

Hi Ladies

So I’ve been on Microgynon for approx 30yrs give or take when I had my children, so last stretch after my son was born  is 19.5yrs. 3.5yrs is when my Generalised Vulvodynia started, after I’d withdrawn from Mirtazapine!

I have been on Lyrica/Pregabalin for about 3yrs along with 50mgs of Amitriptyline. As the Lyrica has helped me pile on 3.5stones I want off so am weaning off it very gradually ie; 1-1.5ml every wk to 2wks to let withdrawal symptoms settle etc. I went for my annual birth control check and it was suggested that I switch to the mini pill (Norgeston) as my BMI is too high to stay on Microgynon.

I have been on the new one 10 days. The day I started it I had a headache in the evening, but the morning after the discomfort started below again. ( It hadbeen fairly good, upto starting the new pill the odd day here & there etc.) Is it too coincidental that the new pill has caused it?

GP is puzzled cause it’s the same Progesterone as the combined pill it’s just there’s no oestrogen in it! I’ve also been feeling slightly queasy about 2hrs after taking it & mood & period pains last week were awful. You’dve thought id’ve had an awful period, really heavy but it was quite light just like when I was on the combined pill. The symptoms didn’t match the flow! Lol

I don’t know whether to persevere with the mini pill or stop birth control all together ?

Advice or experiences please?




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Re: Change in birth control question

Post  emalita on Thu Jul 19, 2018 3:27 pm

Hi Jo,

I'm so sorry to hear you're in this situation. Switching medications can be so stressful and tricky.

I had to Google Mirtazapine to see what it is, and it appears to be an antidepressant, correct? And your pain started after stopping Mirtazapine?

Strangely antidepressants are sometimes used to treat vulvodynia, and if your pain started after stopping it, I wonder if there is a connection there. Are you willing to try going back on it?

Unfortunately from my experience, even if birth control is similar, the reactions we have to each one can vary wildly. Plus, hormonal birth control and vulvodynia have a horrible connection for many women where the pills actually cause a sometimes permanent change in the body, which results in chronic pain even after stopping the pills.

Are you able to try non-hormonal birth control options?


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Re: birth control

Post  Jo44 on Thu Jul 19, 2018 4:31 pm


Thanks so much for replying.

I was out in mirtazapine because of insomnia & anxiety. I came off it as it didn’t help & took me a year to withdraw from it!

I think coming off it wrecked my central nervous system, which made it go crazy down below! I’d never go back on it.

Today I didn’t take the birth pill this morning as I had been & no queesy feeling but very emotional, crying at the slightest thing etc! Although my 24yr old daughter has been admitted to hospital because of her Crohns but normally I’m strong & get on with it! Have been better this afternoon though!

I don’t think I’m going to take the birth pill anymore & see if things calm down below. I realise my moods will be up & down but hoping it will help the V!

Thanks again huni

Jo x


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Re: Change in birth control question

Post  emalita on Thu Jul 19, 2018 4:58 pm


I was on many different hormonal birth control options pretty much since the day I got my period as a kid due to severe cramping. I also had severe migraines, which resulted in being put on many different antidepressants to try to control the migraines (makes no sense looking back).

I finally stopped the birth control in my early 20s, and it took many months to let my hormones even out. But the amazing thing was that my migraines disappeared. I told my sister about it, who also was on birth control and suffered with migraines, and after stopping birth control, her migraines disappeared, too.

Long story short, give it some time before jumping back into hormonal birth control. Condoms aren't so bad, and they make IUDs that don't contain hormones. Try to let your body heal. I promise you that giving this a fair shot will help you in the long run if your pain doesn't go away. I think so many of us, especially me, wish we would've followed through longer on ruling things out versus jumping around and back again to get to the bottom of things finally.

Keep us posted on how you're doing  Very Happy


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Birth control

Post  Jo44 on Thu Jul 19, 2018 7:34 pm


I’ve been better emotionally this afternoon. Still sore below, but I’m not taking the birth pill again.......... well for now anyway! Will be interesting to see if anything changes below by stopping it! Sadly my V started 3.5yrs ago & ive been on the combined pill for 19.5yrs so it didn’t start this awful journey.

I don’t get migraines but I’ve certainly been the type of person who had frequent headaches over the years, was even tested for neurological disorders in case it was that!

Will keep you updated huni. ????


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Post  Jo44 on Mon Jul 30, 2018 8:57 pm

Hi all

So an update!

I stopped the birth pill 12 days ago, 8 days have been good as in no pain! 1 day sore following sex & the other days the discomfort has been about a 4/10. Today there is discomfort pelvic area, but I had spotting & a lot of mucus with dark blood so I’m guessing I might’ve been ovulating?! Hormones all over the place as had bad anxiety yesterday & some of today.

I do think I’m dryer down there now, as when on the pill I didn’t have the need for lube? I thought the birth pill could make you dryer not the other way round?

I would add that I’m not using any birth control except my husband is withdrawing & ejaculating by hand at the end. On the two occasions we’ve tried sex! Sorry if tmi.....

Will keep updating.

Love & hugs ???? x


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Re: Change in birth control question

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