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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 …

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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 …

Comments: 3

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


What’s on your v bookshelf?

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What’s on your v bookshelf?

Post  ButterflyLiz on Sat Mar 10, 2012 2:56 pm

Several of us have mentioned books on vulvodynia that we’ve come across or that have helped us. I thought it might be good to put these all in one thread to create a reference point for anyone searching for info. Feel free to chip in with other books or your thoughts on the ones I’ve listed below.

Medical

“The V Book” by Dr Elizabeth Stewart and Paula Spencer – A comprehensive book on everything that can go wrong with the “V’s” – vulva, vagina & vestibule - as well as details on anatomy and hormones etc. Has a chapter on vulvodynia. There have probably been developments since as this was written in 2002, but still has a great deal of info. I rate this one highly, but unfortunately like most doctors she’s very good at telling you what doesn’t cause v as opposed to what does. I find I need to have a more open mind towards causes & cures than those detailed in the book.

“Heal Pelvic Pain” by Amy Stein – Written by a physical therapist, this book takes a muscle-based approach to explaining various types of pelvic pain, including vulvodynia, and details stretches and exercises that can help.

“Candida albicans” by Leon Chaitow – Not all of us struggle with yeast infections but I certainly do. It took me a while, however, to realise this as the symptoms for me are the same as those of a flare-up caused by other things. Following on from the ideas in “The Yeast Connection” by William G Crook, Leon Chaitow suggests that an overgrowth of yeast in the body can lead to all kinds of medical problems, including persistent thrush infections. The theory is very controversial in the medical world (my doc told me flat out this book wouldn’t help me) and I’m not sure how much research has actually been done on it, but I think there may be something in it. Leon suggests a programme to quash yeast overgrowth including supplements and dietary modifications. I have had good results by trying these, especially cutting down on sugar.

“A Headache in the pelvis” by David Wise – Recommended by my physio. Just bought this one and it’s huge, so haven’t read it all yet! Basically their theory is that chronic, unconscious tension in the pelvis leads to pelvic pain conditions in both men and women. They suggest a programme of “paradoxical relaxation” (a deep state of relaxtion where the pelvic muscles completely relax) and the massaging out of trigger points in stiff muscles around the pelvis. Referenced in “Teach us to sit still” below.

Memoirs

“Teach us to sit still” by Tim Parks – Memoirs of a writer who suffered from unexplained pelvic pain which details his search for answers and a cure. He does find relief by the end but is quite vague about why he thinks this is. The techniques in “A Headache in the pelvis” and becoming a devotee of meditation seem to be factors. It is interesting but the author comes across a bit obnoxious at times and gets sidetracked by irrelevant things. Interesting to see how a similar condition to ours affects men.

“The camera my mother gave me” by Susanna Kaysen – Susanna Kaysen, author of “Girl, interrupted”, suffered with vulvodynia. This is a short, lyrical memoir that is not particularly cheerful but illustrates the effects of the condition with the stunning clarity of a great writer. It’s quite vague about how much relief she found in the end, but I enjoyed reading something about this condition by someone semi-famous. (Interview with the author here - http://www.austinchronicle.com/books/2001-10-19/83325/)

Other

“Self help for your nerves” by Dr Claire Weekes – for those suffering from anxiety and / or panic attacks. Explains how these can develop and how you can combat them. Very reassuring and practical even if some of the terminology seems a bit dated (was released in 1995!). I also recommend the CD which basically has the same content.

“Secret suffering” by Susan Bilheimer and Robert J. Echenberg – this is a collection of real-life vulvodynia stories. I must admit, I never finished it because it’s just too depressing. There doesn’t seem to be much hope in it and I think we all know all too well the crap that can happen as a result of v already. I guess it could be good to raise awareness of the seriousness of it amongst doctors and other, apathetic people but I don’t think it’s very comforting for patients.

Over to you!
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Re: What’s on your v bookshelf?

Post  Kam10 on Sun Mar 25, 2012 1:43 am

Books I own

The V Book by Dr Elizabeth Stewart and Paula Spencer
This is a good book to read if you want general knowledge about all aspects of your vaginal health. My vulvodynia specialist recommended I read it before my first visit. It talks about what to expect at your first pap smears, goes over the female anatomy, good hygeine pratices to follow, and talks about various vagainal infections. There is also a chapter on vulvodynia and IC. I found the chapter on vulvodynia helpful, but it might be getting out of date. It was also the first book I read about it. I might not find it as helpful if I've already some of the other books I'm about to mention.

When Sex Hurts. A Womans' Guide to Banishing Sexual Pain by Andrew Goldstein, Caroline Pukall, and Irwin Goldstein
I really liked this book. In fact I rented it from the library at first and bought my own copy becase I wanted to discuss a couple of things with my doctor. It goes over various disorders that can cause female sexual pain. It includes a lot of good informatoin on vulvodynia. I talks about the science behind pain and how to cope with pain. Some of the conditions the books talks about it vulvodynia, vestibulodynia, infections, varous causes of pelvic pain, vulvar skin disorders, and pudenal neualgia. The books explores the root cuases of these problems and how to treat them. For vulvodynia and vestibulodynia it talks about how the nervoius system can be a cuase, how the pelvic floor can lead to problems, gives a detailed account to why the authors think the birth control pill could cause problems in some women, describes the difference between primary and secondary vestibulodynia.

Healing Painful Sex. A Woman's Guide to Confronting, Diasnosing, and Treating Sexual Pain by Deborah Coady and Nancy Fish.
I also really liked this book. It reminded me a lot of When Sex Hurts . This books always talks about a lot of issues that cuase female sexual pain. In addition to vulvodynia and vestibulodynia, it also talks about vulvar skin disorders, pelvic floor dysfunction, IC/painful bladder, IBS, endometriosis, pain from orothpedic causes, and clitrodynia. I'm sure I'm leaving some things out. This books also tries to get to the root cause of each problem and explains how to treat it. The book also talks about the science of nerver pain and how to cope with pain, including tips on how to deal with relatoinships. I think this books has more information overall than When Sex Hurts . A lot of the vulvodynia/vestibulodynia information is the same, but not all of it. And there is a different take on some of the causes. For example, this book also mentions the pill can cause problems, but doesn't got into as must details as the When Sex Hurts. However, other topics have more details. Another thing I like about this book is it takes a holostic approach. It talks about what to avoid in lubes, what ointments and oils are safe for the vulva, and briefly mentions some diet changes that might help calm nerves (avoid sugar and caffine, if possible, and take certain viamins, etc.).

Books I Read but Didn't Buy
The vulvodynia Survival Guide by Howard Glazer and Gae Rodke
This books was OK, but I wasn't very impressed. It mostly focused on the results of a survey Dr. Glazer made available on his website, so the data isn't scientfic. Though the inforamtion is sitll helpful. Don't get me wrong, the book did have some helpful information and it did cover the various treatments, but it wans't what I was expecting. I think this would have been more helpful to me if I didn't know much about it and was just starting my reserach on vulvodynia. It also didn't have any specifics about the Glazer protocal of pelvic floor physcial theraphy. I though the the two books I mention above did a better job exploring the root causes of vulvodynia/vestibulodynia. Don't get me wrong, some people may find this book helpful; it just wasn't the book for me.

The V Zone by Colette Bouchez
This book is similar to The V Book. It is all-around vaginal health book. It does have some information about vulvodynia, which is useful, but not the most up-do-date. For some reason I like The V Book better. I think it had to do with the writing style.
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