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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

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Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 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

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 …

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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


Diagnosed recently, looking for advice

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Diagnosed recently, looking for advice

Post  Cloudberry on Sun Sep 02, 2018 12:51 am

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 with vulvodynia I had recurring yeast infections and itching for over a year. I was prescribed different creams and medicine for yeast infection all over again, and the lumpy white discharge would go away but the itching would remain. I started making changes to my diet hoping it would help. At first I mostly cut sugar and high-carb foods from my diet, but then I started an even stricter diet (candida diet). I gave up fruit, pork, most dairy products, caffeine, alcohol etc, etc. I’m not really sure whether it helped me or not, some days the itching seemed to be better, some days worse. I was avoiding anything sugary like crazy, and if I would have e.g. berries I would worry that I had too much. Basically I would stress about food all the time. When I told a doctor about my diet she advised me to go back to my normal diet, just without sugar and very high carb foods. Slowly, I went back to having dairy products, fruit, and other “forbidden” stuff and it didn’t seem to have an effect on my symptoms. It did have a positive effect on my mood, however. I’m so happy that I can have something as simple as an apple without suffering from it.

At some point I realized I was also having pain during intercourse and I couldn’t really have a proper intercourse; the penis wouldn’t go all the way in anymore, no matter what. I haven’t had that many intercourses anyway, so I thought it was normal to have some pain during it (most of my intercourses have been at least somewhat painful). But, when I mentioned the pain to the doctor, she finally seemed to take my problems seriously and sent me to a gynecologist. The gynecologist made an examination and diagnosed me with vulvodynia. She prescribed me Gabapentin for pain and Ovestin for itching.

Based on what I had read about vulvodynia before, I thought the symptoms would be much worse – but I guess it’s different for everyone. I only have pain when I’m trying to have intercourse and I’m still able to have other kinds of sex with my boyfriend. He even says he thinks our sex life is awesome even without intercourse. The itching isn’t unbearable either – it comes and goes. Most of the day I’m fine, but sometimes I’ll notice the itching on my vulva or anus, and it’s usually worse in the morning. Some days are worse than others.

Anyway, I used Gabapentin and Ovestin for 3 months as advised. The itching got a little better but the pain during intercourse wouldn’t go away. At my latest gynecologist’s appointment she told me I should continue using the creams and that I’d need to start going to physiotherapist. She also said I should start doing yoga/pilates/something else that is helpful for my pelvic floor.

I’m not sure what to expect from the physiotherapy. I’ve done yoga occasionally at home but I lack motivation. More than anything I want the itching to be gone and I’m not sure if yoga is going to help me with that. Well, even more than that, I wish I could have white sugar and wheat again. I don’t know whether or not I should still avoid sugar and high-carb foods but I’m too afraid to try them at this point. I know this probably sounds like such a silly problem compared to pain and itching but food has been one of the worst problems for me. I’ve been avoiding family gatherings and other such events because I want to know exactly what I’m eating (and I don’t want to go asking about every food for their exact ingredients). I don’t want to tell everybody what’s wrong with me and I feel so embarrassed bringing my own food with me or saying I won’t have this and that. Even when people know I’m following a diet they sometimes still seem offended when I don’t want to eat something they made.

Most of the time I don’t think about being or not being able to have intercourse but sometimes it just hits me that I may not be able to have that kind of sex ever again. Or have an itch-free day again. Or go back to my normal diet again. In those moments I feel like, what’s the point in anything? At the same time, I feel guilty because I have it so much better than so many others. But then I remember that some people are able to eat whatever they like without having to worry about a flare-up of symptoms and have penis-to-vagina sex without pain. It almost seems bizarre, and unfair.

My boyfriend has been very supportive, he has read about vulvodynia, comes to the doctor’s waiting room with me, comforts me and has encouraged me to do yoga, but he’s also sad that there’s nothing more he can do. His support means a lot to me but he’s already doing so much that I don’t know what else I could ask of him. We live in different cities for now so he can’t always be here physically when I would need a shoulder to lean on.

So these are the questions I’d like to ask you all:

What have your partner(s) been able to do to help you cope with vulvodynia? Does it help to think of vulvodynia as your shared problem that you’re trying to beat together?

Are you following a special diet to treat your vulvodynia? Has it worked? Does avoiding sugar really matter? Have you been able to have sugar again after beating vulvodynia?

Thank you so much for reading this! Any words of advice or encouragement are welcome.

Cloudberry

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Re: Diagnosed recently, looking for advice

Post  emalita on Wed Sep 05, 2018 8:22 pm

Hi,

I'm so sorry to hear that you're in pain.

The first thing I want to tell you is that vulvodynia literally means "chronic vulvar pain without an identifiable cause". It is a diagnosis of a symptom, not a disease. So don't let this diagnosis scare you. It just means you hurt and your doctors don't know why.

For some women it is caused by:

- Environmental irritants (soaps, lubricants, tampons/pads, etc.)
- Chemical injury/burn/irritation from antifungal creams, antibiotics, etc.
- Hormonal birth control
- Pelvic floor dysfunction
- Food intolerances or allergies
- Spine, hip, or tailbone injuries
- Overactive/pinched nerves
- Overwashing the vulva
- Douching
etc. etc. etc.

I'm a vegan. So I completely understand the awkwardness that can come with bringing your own food. Honestly though, I've found people react mostly to how YOU react. If you are confident and just matter of fact about things they tend to back off. I don't tell people that I'm vegan always, nor do I tell them that I avoid certain foods because they hurt my bladder...it's none of their business. I either just politely decline or say something like "I have food allergies", which isn't a lie. If all else fails, LIE. Yep, lie..."I just ate" or "That food doesn't seem to agree with my stomach anymore." It's your life, and fudging the truth a bit isn't going to hurt anyone. Also, check out the articles below on low carb eating and "candida overgrowth".

Next thing, not everything that itches is yeast and just because it doesn't itch doesn't mean it's not yeast.

Have you been evaluated by a dermatologist or vulvar specialist to see if you have lichen sclerosis or any other lichen condition?

Have you elimainated EVERYTHING chemical that can come into contact with your vulva? (no soaps for the body or vulva in the shower, wash your hair in the sink, no lubricants/moisturizers/oils, no wet wipes, etc.)

As far as my love life goes, I don't have the happiest of stories. My 13 year relationship ended almost 2 years ago because vulvodynia was the final breaking point (it wasn't the entire problem but it was one). My new boyfriend is much more caring and understanding, but he can only understand so much since he's never experienced chronic pain. No, this isn't a shared problem between us, but I know he's there if I want him to come to an appointment or something. I wish he would read about my health issues more (do his own research), and I've asked but he doesn't. He is very supportive, but I know it gets draining for him to hear my issues because he feels helpless. So, most days I keep it myself or a support group.

Hope some of this helps!

https://health.usnews.com/health-news/blogs/eat-run/2013/12/10/we-all-have-candida-and-its-ok

https://nutritionfacts.org/2016/11/22/how-a-low-carb-diet-is-metabolically-like-being-obese/

emalita

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Re: Diagnosed recently, looking for advice

Post  Cloudberry on Wed Sep 05, 2018 9:43 pm

Hi emalita,

Thank you so much for taking the time to answer my post. What you said about vulvodynia being a diagnosis of a sympton and not a disease is kind of relieving to know - maybe I can get rid of it after all!

I haven't been to a dermatologist. I figured the gynecologist would notice if there was something like lichen sclerosis going on, and at the latest appointment she did say my vulva looked better than before starting to use the creams she prescribed me.

I don't use soap to wash my vulva but I do use shampoo to wash my hair and soap to wash my body when I'm showering. So I guess small amounts of soap can get in touch with my vulva. Perhaps I should try to avoid it, then.

I get what you say about your diet being no one else's business. I wish I could have a similar attitude. When someone asked me why I avoid carbs I said it's because of health-related reasons and while it clearly didn't satisfy their curiosity they didn't make further questions about it. So I guess it's the best answer I can give to anyone.

Thanks for the links also. I haven't really been sure what to believe about candida overgrowth because on the other hand I'm aware that many people just want to make money by talking about candida overgrowth and selling products that are supposed to help get rid of it, but I also think doctors often don't take their patients seriously when they talk about vaginal problems, so it seems natural to me that patients look for remedies elsewhere. I, at least, was very desperate to get rid of my problems and started the candida diet because doctors just didn't seem to care.

I'm glad to hear your current partner is more supportive than your former partner! Though I don't get why he wouldn't do his own research about vulvodynia, it doesn't really seem like a difficult thing to do, and if it's something that would help YOU I think it's worth considering at least. I do get that listening to someone's problems a lot can be draining though. If my boyfriend said he felt drained listening to me complaining I guess I'd say "okay, let's have a couple of days when we don't talk about these problems at all, okay?" and after that he'd probably be happy to listen to me again. But yeah it's definitely good to have support groups such as this forum, as here we can find people that truly understand us. Thanks again for your reply!

Cloudberry

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Re: Diagnosed recently, looking for advice

Post  emalita on Thu Sep 06, 2018 1:56 pm

I completely understand how frustrating it is when modern medicine will not look for alternative causes. Trust me, I have my share of "I told you so" remarks for doctors who didn't believe me of intolerances or allergies towards foods.

However, I was also a person who was "diagnosed" with candida overgrowth by a Functional Medicine Practitioner after spending thousands of dollars on tests (blood, spit, urine, stool, etc.). Then after spending thousands more on supplements to rid me of something naturally found in the body, I was in the same amount of pain and my bank account was suffering. Plus, if you speak to most people who see a naturopath-type practitioner, you are likely to find that they've all been generically diagnosed with "leaky gut" and/or "candida overgrowth". So I've found naturopaths are just as guilty as modern medicine physicians when it comes to a single minded approach.

I will, however, be the first to say that I believe the type of food we eat is largely responsible for many symptoms. When something is going wrong with my body (acne, rash, bladder pain, sinus inflammation, fissures, etc.), I immediately look at what food I am or am not eating. Most of my chronic issues could've been resolved before becoming truly chronic if a doctor would've recommended an elimination diet or even a water fast.

Prior to switching to a plant based vegan diet, my anxiety was uncontrollable, I had random spontaneous thoughts of suicide, etc. I truly believe my body was screaming for nutrients, but it has only done so much for my pain...actually learned that my bladder did not appreciate large volumes of orange juice, lol.

https://nutritionfacts.org/video/is-candida-syndrome-real/

Honestly, anything my partner would read about vulvodynia wouldn't be super relevant for me since most vulvodynia organizations also have one track minds where they push it being a nerve issue. I wish these organizations would be more like the IC Network and develop subtypes, which I think would help more women identify the cause of their issues.

emalita

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Some things I've found helpful

Post  wuhujen on Wed Oct 10, 2018 2:30 pm

Hi,
I'm so sorry you're experiencing pain and irritation, but I'm sure it's a relief to have a real diagnosis! I also tried all kinds of crazy diets and on the whole have found they have little effect. I did eliminate all dyes from detergents and soaps and now use gentle or free and clear products. I can get a away with scented shower gel as a special treat, but not regularly, and no bubble baths!!

I would second the recommendation to try and find a doctor that specializes in treating this condition. I drove 4 hours to get to a doctor who understood the condition before someone local was available (and I live in a major metropolitan city!). In addition to gabapentin, I take amitriptyline which has been really helpful.

My symptoms sound similar to yours which was mostly itching with pain less frequent. It took longer to diagnose because itching being the primary symptom is less common. Of course, talk to your doctor, but I stopped all creams and ointments. If the pain got too bad, I would try and numb with an ice pack, but I actually developed a reaction to the creams and steroids which just made the itching worse.

My doctor said that it would take about 1 week of recovery for every 1 month of symptoms I experienced while undiagnosed before I felt a major change. I was undiagnosed for almost 24 months, and it was crazy, but at about 6 months (26 weeks), I turned a huge corner.

One thing that was HUGE for me was going to physical therapy. My itching wasn't caused by anything topical or diet-related, but my muscles were out of whack and that placed strain on the nerves which led to itching and tingling. As I worked with a physical therapist to straighten out the muscular issues, I saw a huge improvement in my level of irritation. I continue to do gentle/restorative yoga. I've found that doing really strenuous exercise leads to more pain (because the muscles get out of whack), so I try to do a variety of different things, but nothing super intense (ie no crossfit or Orange Theory type programs).

There are other little things, like if I spend too much time sitting (I have a desk job) and don't move enough or if I wear unsupportive shoes too many days in a row (flimsy flats or too tall heels) sometimes I'll notice increased irritation. Also, it definitely gets worse right before my period. But I'm at a point in my treatment now that it usually corrects itself in a couple of days.

Initially I was doing physio twice a week, then weekly, then every other week, and then monthly, etc. I actually got to a point where I went 18 months without needing to go. I had a flare up of symptoms last Spring and starting going again and increased some of my medication, but now I'm back to a level place where I can manage the symptoms well enough to live life pretty normally.

Wishing you all the best on your path to recovery!

wuhujen

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