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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1


getting pregnant and vulvodynia

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getting pregnant and vulvodynia

Post  londonlady on Mon Jul 02, 2012 8:35 pm

Hi Ladies,

Before I started getting V about a year and a half ago, I sadly lost a baby at 16 weeks. She was a surprise baby when I was 23 and had just started seeing someone, but we both wanted to keep her and were excited about the pregnancy, so it was a massive loss which has left me wanting to be a mum much earlier than I had thought before.

I often think about trying for another baby. Although it is not the right time financially at the moment, I hope that in a couple of years it will be something we will do.

However, at the moment the only thing which seems to help me is a relatively high dose of amytriptaline, which is not safe in pregnancy. I tried reducing it recently but the pain was too much. although I am hopeful about physiotherapy, I really worry that I won't ever be able to come off it and try for a baby.

I wondered what other people have done when faced with this and if anyone can share any positive stories about trying for a baby with vulvodynia.

I know I should try and focus on the here and now but it feels like a weight hanging over me sometimes!

thanks
xxx


londonlady

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Re: getting pregnant and vulvodynia

Post  Azraella on Wed Jul 11, 2012 9:28 pm

Hello,

I am so sorry to hear about your loss.

I am 27 years old 26 weeks pregnant and have had V for four years now, tried many treatments including surgery..twice. I have not found ONE thing that helps with the pain.

My partner and I have been together for 6 years and sense I got V we have sex very little so I am oddly lucky to have gotten pregnant.

I worry all the time that I will not be able to give 100% into being a mom because I am in constant pain...I am very excited and happy, don't get me wrong but it is hard being in so much pain all the time.

But if I can do it anyone can do it! So please never give up on your dreams of being a mommy because of V. Good luck to you when you do decide the time is right.

Also I have never tried anitripdylin (mspelled) I wonder if when I have the baby if it is something I should try? My pain is constant and unprovoked, it gets worse after sex(like the next morning) and it is a STRONG burning feeling. Is yours anything like that? Just asking because I might ask my Doctor if I can try this medication after pregnancy.

Azraella

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Re: getting pregnant and vulvodynia

Post  londonlady on Sat Jul 14, 2012 9:25 am

Hi Azraella,

Thanks for your message and congratulations on your pregnancy!

I'm sure it must be worrying thinking about being a mum and still being in pain, but I'm sure that you will do it! Pain can make me feel really anxious about not being able to do things but I am always surprising myself by doing those things anyway.

It could be worth trying Amitryptaline once the baby arrives (although I would think you probably can't mix it with breastfeeding, but I'm not sure). It has definitely helped me to live a more normal life with much less pain on a daily basis/when having sex.

It is actually an anti-depressant, but prescribed in lower dosages for pain relating to nerves (vulvodynia but also other types of chronic pain) which don't respond to other pain killers. You have to start it at a low dosage and then increase it slowly (i.e. each week) until you get to the dosage that blocks your pain.

It does have some side effects which I don't like: it can make you pretty drowsy and a bit foggy, and you get a dry mouth. some people also find it makes them put on weight, but I haven't had that, and have been taking it for about a year. You can't drink as well if you are taking it.

I found these side effects (especially feeling drowsy) were much worse when I first started taking it - but after about 6 weeks (which I know is a struggle!) they stopped affecting me so much and I could get on with my life almost normally. I take them at night so that I mostly sleep through the time they make me drowsy and just feel a bit more tired than usual in the day.

A physio also said that gabapentin could help - this is another drug which relates to nerve pain.

None of these pills are cures but they make the symptoms more manageable while I look for a way to tackle the problem.

Also, have you tried physiotherapy at all for your pelvic floor muscles? Mine is very tight with lots of trigger points (muscle knots) and I am seeing a women's health physiotherapist to learn how to relax it and essentially do some deep tissue massage to help.

Good luck - and take care in your pregnancy

xxxxx



londonlady

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