So frustrated... what have you learned?

I have not been diagnosed with vulvodynia, however no other disease fits my symptoms and the three doctors I have seen have no explanation for what is wrong with me. STD tests show nothing, and my last DR told me this problem is all in my head. I know it's not in my head, the pain is real.

The issues started May 2011, shortly after a regular papsmear was done (I think this was just coincidence, but I'm giving all the information I can think of). The dr. was extremely rough down there (a male gyno who apparently was not taught bed-side manners... had me undress before I even met him, no lube used just shoved his gloved finger up there and was surprised when I yelped). About a week after the pap, I started having burning and inflammation to the point where it hurt to walk. I had just started having sex with a new partner, so assumed STD and headed back to the dr. The Dr. (without doing any tests) told me it was a yeast infection, although there was no discharge, and prescribed lamisal cream which made the symptoms SOO much worse. So after a week of that, headed back to the DR. He wanted to do a biopsy, but did not have the supplies at the office and wanted me to return in THREE weeks but continue using the lamisal cream (which I did not). More information: I had had a colpo and cervical biopsy done in 2010 (can't remember when) because I do have HPV (the cancer causing strain). No cancer.

So, I decided to see another dr before agreeing to another biopsy (he had wanted to biopsy near the clit and I was just not willing to risk losing sensation when he had no idea what he was looking for!). The second dr. told me that she had no idea what was wrong but prescribed steroid cream and conducted STD tests and yeast infection tests (both negative). the steroid cream worked for about a week, but then stopped working. So I went to another dr.

The third dr. was by far the most sympathetic. She told me to stop taking the steroid cream as it could cause further problems and prescribed diaper rash remedies (which really helped for a while) and oatmeal baths. She was hoping it was an allergic reaction, and I changed all soap, detergent and tp. This worked for about a month, but I still could not have sex. When the symptoms began returning, I headed back to see her. She was very concerned, and did some research for me. She prescribed primarin (an estrogen cream), hoping it was due to trauma from the first exam and just needed a boost in healing. She also said it might be psychological and that i should use a ton of lube and force myself to have sex (that i did not do, just used the cream). IT WORKED! I was so happy! I was symptom free for SIX MONTHS. regular sex life, thought everything was done. Anytime I started to feel any burning sensation down there, i would use the cream and it would disappear in a day.

Symptoms are now back full force. Burning sensation, inflammation, raw feeling. My partner keeps blaming himself since the issue began when we started having intercourse, and it's put a strain on our relationship. I am so frustrated. I can't see the same dr. as before because my insurance changed. The cream is not working this time and all I want to do is cry and rip my vagina off! It hurts to walk, it hurts to sit... there's no relief! I've been doing so much research and it's depressing that no one has seemed to find relief for an extended period of time.

I have been on the pill since i was 18 (I'm now 24, symptoms started at 23). I have never been off of them since i started, and I've been on Lessina the entire time. I've read how the pill can cause this disorder, but it seems to be within the first year. Has anyone learned anything about long term bc use?? I can't tolerate condoms (I've always been hypersensitive down there and even non-latex condoms hurt) and so I'm concerned about what bc I could even change to.

I've also read about low-oxalate diets and calcium citrate supplements. I did eat a whole box of frozen spinach two days ago, so I'm wondering if that has something to do with onset of symptoms returning?? Also, I never ate many vegetables before my new partner (who makes veggies a very high priority in meals) so I'm wondering if that could be the starting cause. I also noticed no one seems to have had any luck with a low oxalate diet, so who knows.

One more thing, the second doctor had mentioned diabetes being linked to recurrent vaginal problems. At the time, I had no reason to believe I was at risk for diabetes... I had been borderline hypoglycemic years ago, but hadn't had any problems other than times when I wouldnt eat regularly. Since she mentioned that, I found out that diabetes does run in my paternal family. The night before my symptoms returned, I drank two glasses of orange juice with vodka (I never drink juice), after eating ice cream and pudding (lots of sugary foods which I normally don't eat). A few months ago I had a scary episode where I went into what felt like a coma, couldn't think straight, body didn't want to move, drank a soda and snapped out of it. A similar thing happened the night I drank the orange juice, but of course I assumed it was the alcohol even though I made the drinks very weak (I don't drink often at all). When I woke up, burning was back. Has anyone noticed sugar making symptoms worse?? Anyone else diagnosed with diabetes??

Any suggestions?? Anything strike a bell with anyone??

Orange juice is one of my triggers. Do you notice the burning after you urinate? Mine starts with my first morning pee and disappears for night time until the next mornings pee. I stopped taking my birth control and my pain plunged drastically, many women find that bc makes the pain worse. I think mine is hormone related as now I'm pregnant (was trying) and my pain is at an all time low. The first 2weeks I felt normal, I also would find relief during my menstrual cycle.


Forgot to add this sounds like vulvodynia, have you checked with a derm., to rule out skin conditions since your red and swollen?

The burning is constant, no difference with urination. I was up half the night last night because of the burning. Makes me hopeful it was the orange juice since it's a trigger for you. I never drink juice, just water and one diet coke a day.

I have noticed that the pain increases for me right before menstration. One thing that concerned me was that the first day or two of my period when symptoms were really bad was that the "blood" was gooey (which dr. told me was because of all the cream I'd been using) and stung like hell when it touched the outside of my vag... like acid. Anyone else experience this?

I have not seen a dermatologist. Problem was I had no insurance until a few weeks ago, so at the time I was having the worst of the symptoms I was kinda stuck just being seen at the health department. I plan on making an appointment with my assigned GP this week, hopefully they can refer me to a specialist of some sorts.

I just got done soaking in a vitamin E bath (forgot to mention sometimes it would help for a bit, I use the Vasaline brand bath crystals) and used some A & D lotion. Feels a little better for the moment but I can still feel it. That's what frustrates me the most, always feeling my vagina and thinking about it. NOT NORMAL!! I used the premarin last night and will again tonight. One of the side effects it has on me though is making me feel constantly horny.. not wanting sex, just feeling physically aroused. I'm assuming because it's meant for menopausal women to help increase lubrication.

OMG. I can't believe that doctor didn't use any lube! What an A-hole. So sorry you were treated that way.

The sugar theory you have is interesting. I wonder that myself too, but I haven't had the will to try to cut back yet. I have symptoms with no infection present, but there has been a few times a yeast infection was making things worse for me. I wonder if cutting back on sugar would help reduce some of my bad flair ups. Anyone else out there have any advice about sugar?

You know, I had cut back on my sugar months ago, not really consciously for the V but because I was trying to get healthier and started eating more healthy. When I go to my GP, I plan on asking for bloodwork to rule out blood sugar problems (mainly because I've noticed certain foods have been effecting me lately, not just vaginally).

I have hypoglycaemia too, have had it since I was a teenager and it's low blood sugar whereas diabetics have the opposite problem. Your scary incident is typical of a low blood sugar attack and a bit of suagr or carbohydrates rapidly fix the feeling, I have several of these every week and you learn to know when they are about to happen so you can have something to eat to prevent a full blown attack. The reason diabetics have V quite often is the excess sugar in their urine encourages yeast to grow so a quick urine test at the doctors will quickly establish if you have diabetes but you sound more like me with the opposite problem if I'm being honest.

If you've always been super sensitive in the vulvar it wouldn't take much to set it off and the doctor not using lube could have irritated tissue which the oestrogen cream masked for a while. Have you had your pelvic floor checked? A tight PF can keep trauma going by not allowing enough fresh blood and nutrients to the area to heal it.

Hey Shortstuff...

I've not had chance to read your whole post yet as I'm at work, but I will be sure to later.

I just wanted to pick up on the bit about the pill though. I was taking it for 18months before my symptoms started, and after about 9 months of pain I saw one gyno who told me to stop taking it as my hormone levels were all over the place. I stopped taking it and within a 3 weeks I was completely pain free.

I know birth control is a huge thing (and it was for me too) but even if you can hold off sex for a couple of weeks and just see if not taking the pill makes any difference? Then it will give you some indication as to the cause of the pain, and it's more info you can take to your doctor.

There's also a whoooole load of birth control you can use that aren't as heavy as the pill. There's several different pills that have got varying levels of hormones in which can help, and also there's a completely hormone free coil which I had for a short time, and it's not as horrific as it sounds either!

I hope this helps anyway. I'd definitely try and look at the hormone route though. Either go to your doctor and ask for a blood test to check your hormone levels, or lay off the pill for a few weeks and see how you get on.

I hope you feel better soon!

First I just want to say thank you everyone for replying. Just having people to bounce ideas back and forth with is helpful in itself. I'm not alone! Hooray!

Sarah - Have they suggested any link between your hypoglycemia and vulvodynia? Or is it coincidental?No i have not had any pelvic floor exams... Like I said, I had no health insurance so my options were pretty slim.

JemimaSurrendor- Seeing as I can't have sex right now anyways, I'm going to get my hormone levels checked and see what happens. It's definately worth a shot. What's the point of birth control if I can't have sex anyways?

shortstuff wrote:JemimaSurrendor- Seeing as I can't have sex right now anyways, I'm going to get my hormone levels checked and see what happens. It's definately worth a shot. What's the point of birth control if I can't have sex anyways?

That's how I see it too. I stopped all birth control a long time ago to get my body back to normal and start again from scratch. I think it's the only way to go about it!

Since stopping birth control, how have your symptoms been?

shortstuff wrote:Since stopping birth control, how have your symptoms been?

All of my symptoms completely stopped for 9 months, and I was perfectly normal!

Sadly, they did return, and I've had them constantly for the last two years. They don't seem to be hormone related anymore, but hey, 9 months of normality isn't something you're going to pass up is it? And who knows, it might clear your symptoms or for good.

Fingers crossed!

Unfortunately I am dependant on birth control. I can't come off it because my periods make me violently sick to the point where I feel like I'm dying. I had vulvodynia before taking it anyway, and it never made things any worse. I don't think that's the cause of mine. It's so weird that people can all have the same disorder but each with a different cause.

I would go for coincidental, I've been hypoglycaemic since I was 17 and only got V at 36 so I think it's too much of a stretch to connect the two. Having lots of sugar can often set off an attack if the sugar isn't balanced with either protein or complex carbs for slow release energy so I avoid lots of sugar anyway but it still hasn't helped. As I said before diabetics have the opposite problem and it's too much sugar in the urine that triggers yeast infections for them. I can think of no way hypoglycaemia could be related at all to be honest and even if I could it wouldn't help because diet is the only way to control it which I already do but still I have V.

You could have a quick feel of your pelvic floor yourself, it isn't foolproof but most of the time they find pressing into the 4-5 and 7-8 o'clock areas of the pelvic floor is painful if it's tight so you could try that, you do have to press firmly though to be able to tell. It wouldn't rule it out completely but it could rule it in for you.

Sarah001 - I don't think that's the problem for me.. I don't feel tight. I just have a constant burning feeling around the vaginal opening and at times the whole vulva area becomes inflamed and swollen.

Today, however, things just got crazy itchy!! So, I start panicking (like I always do, especially now that my mind is constantly DOWN THERE and any changes just send me spiraling.. my poor boyfriend when he got home today...lol) and think OH MY GOD IT IS HERPES (although every doctor has told me it's impossible since the symptoms lasted as long as they did yadda yadda, plus my ex and I were together for 6 years, and the new bf got tested before we had sex, they never tested me though so of course it's still in my mind... I am however, going Tuesday to a new doctor specifically for every STD testing possible. I need to know for my own comfort). So, I look with the mirror (I never thought I would check my vagina out so much, this is crazy) and oh, a yeast infection. Again. I have been getting them quite often (about once a month since my symptoms had gone into "remission").. when I had been going to the doctors constantly, they tested me repeatedly and found no yeast (I had no symptoms of yeast infection other than burning). This is definitely a yeast infection at the moment though. I'm very relieved because at least now herpes is out of my mind. Although sometimes I think any diagnoses would make me feel better. At least herpes is manageable nowadays.

Anyway, I wondered if anyone else here had increased yeast infection occurrences?? Im definately going to ask them to check my sugar levels now though, considering the scary episode and increased yeast... but I wondered if anyone else experienced this problem as well.

Maybe we should all compare symptoms?? Find a link of some sort that all the researchers possibly missed? (I'm desperate!)

I in fact do have herpes and when this all happened I thought I was just fixing to have another occurrence but nope wasn't so lucky because I'd rather deal with an outbreak than having this firecrotch at least an outbreak lasts a couple of days not months or years. No help on yeast infections but are you doing any preventive methods? Ie, probiotic supplements or upping your yogurt intake. Have you tried natural methods to get rid of a yeast infection? I never take prescribed rxs for vaginal infections now I swear by home remedies.

Before my real Vestibulodynia symptoms started I had a lot of thrush outbreaks.

They started being every few months and then ended up at one every month, without fail, and sometimes more often than that. Infact, several times I'd have sex and know straight away that I'd have thrush afterwards, even though it had nothing to do with my partner. Weird.

Anyway, after about 6 months of monthly thrush visits, I had another one that just would not go away, despite my pharmacy self medication. I went back to the GP and they gave me the same stuff I'd had before. Nothing. This was followed by two months of every single cure for thrush known to man being thrown at me. I tried them all, and some were pure agony!

Then they finally gave up and said it was no longer thrush. Two and a half years down the line, I'm still here. With, albeit, less thrush like symptoms now, but still a mild itch and absolute agony!

So yes, I had major thrush outbreaks before all of this started, and still have the odd one now.

Perhaps that's how it all started for you? I know that must have been my way into all of this!

mmorgan - I had been eating yogurt every morning Apparently didn't help. I'm going to talk to the Dr. Tuesday about probiotics, I really know nothing about them or natural remedies. I'm afraid to keep taking OTC treatments... but since I couldn't get into the dr. until Tuesday, I needed to do something for the time being. It was so bad yesterday i was crying on the way home from work.

Jemima - Your comment disappointed me a bit I keep telling myself the repeat yeast must be linked to my partner since we only have sex about once a month. I'm hoping that's the cause of all of this honestly. A yeast infection that they couldn't see under the microscope because there was very little discharge that I then passed to my partner and he just keeps giving it back to me. I'm praying I don't really have vulvodynia and this isn't a lifelong thing I'm going to have to deal with. I'm hoping that some magical pill treatment will cure me for good. The whole thing started for me suddenly.. I went to the dr. for a routine pap and after that just burned constantly for five or so months, at times I could barely walk it hurt so bad, then it kinda subsided a bit but I started getting these damn yeast infections every month. Even though my burning subsided, I still never felt 100%, I always felt drier than normal, kinda raw and sex felt like I was being torn in two because the skin felt so dry (even though I was lubricated, it didn't feel like I was).

This is so depressing. mmorgan, I too kinda wished it was herpes in a sick way because then at least I would a) have a manageable diagnosis and b) know it wasn't going to be CONSTANT. The thought that the pain is never going to fully disappear, and possibly get worse from reading all these stories... is just depressing

Okay Love, be prepared to read.

General Information on Yeast Infections:
http://www.vaginapagina.com/index.php?title=Yeast_Infection

Here is what part I'm wanting you to get to and it's home remedies:
http://www.vaginapagina.com/index.php?title=Yeast_Infection#What_are_some_easy.2C_at-home_methods_to_rebalance_the_vaginal_pH.3F

I'm apart of vaginapagina's livejournal group so I've learned tons of home remedies and preventative methods for vaginal infections from them. I personally won't ever go back to rx's for them as I think they attribute to a flare-up. So until your appointment on Tuesday could you possibly try one of these methods to see how they would work for you? I've never had a YI but I do get BV and I've heard the 'garlic clove' method is good to use for YI but of course you can chose any of the other ones to find relief in the meantime.

When you and your partner have intercourse do you use protection or does he cum in you? If he cums in you his sperm could be causing the pH imbalance or if your using condoms I've heard plenty of ladies that condoms cause YI for them.

Hope to hear back after you read the article I gave you to hear about what you think.
Sending healing dust your way.

Acidophilus capsules are very good for keeping yeast at bay, once you get rid of the infection take one a day and it should vastly reduce the frequency you get them, you can open a capsule and insert it vaginally too. Oral meds for yeast are better than topical onces as they won't upset things further, if you suspect your partner may have it too get him an oral treatment too and don't have sex for about a week to make sure the infection has totally gone. Usually yeast can be seen under the microscope but if you're concerned ask to have a sample cultured to see if it grows anything over a few days.

mmorgan - Thank you for the article.. I don't have time to read it at the moment but I will tonight. My partner and I do not use condoms because I do have issues with latex but he does not cum (that's a story in itself hahah). He is dead set that I am allergic to him but the issues started before that in reality.

Sarah001 - Definately going to start taking the capsules. Even if that's not the cause of the burning, YI are annoying... especially this frequently.

I'm counting the days to the appointment. I just want to talk to a dr. about all this stuff in my head. The yeast infections, the food issues lately, ugh. On the bright side, I only felt burning for an hour today It's been a good day so far.

mmorgan - I just finished reading the article (I know it took me forever, just been crazy busy lately). Which home remedies have you tried? I'm so nervous about putting anything down there at the moment, and I've been eating yogurt everyday but that didn't help prevent it. I'm wondering about the boric acid as I've heard this mentioned before on other sites...

I've never heard bad reviews on any of the home remedies. Personally I've inserted acidophilus vaginally and have done the hydrogen peroxide "washes" but for BV, never had a YI. Heard the garlic works best.

Okay, so here's an update on me:

Went to the dr. appointment Tuesday. They are checking my bloodwork for Thyroid Disease, Diabetes and Anemia. Will get my results 2/13. She also referred me to a gyno (my ins. had changed so can't go to my old one(s) anymore). Will schedule an appointment with them on Monday.

I started taking probiotic acidophilus tablets and a daily multivitamin (in case it is anemia, trying to get an early start and boost my energy level because it's starting to effect my work performance and I just generally feel icky). I also stopped taking the birth control pill.

Yesterday, I had this thick clear jelly substance discharge from down there, it was completely odorless but freaked me out. I was reading online and apparently I could be ovulating?? I'm hoping it's just really backed up from the years of pill suppression lol But the burning is really really bad right now and I feel so up and down emotionally (mood swings I'm contributing to the pill stopping). One thing I noticed, which I noticed a few months ago but forgot about honestly until it happened again, is that sometimes when I do certain things it feels like I "pop" something down there and then it aches for days.. kinda like I pulled it or something. It happened a few days ago when I was moving a box with my leg and stretched my leg out and "pop", like the opening of my vagina pops. I don't really know how to explain it. But it makes the pain 10x worse. Could this be a trapped nerve or something??? Has anyone here experienced something similar?

I've bee reading about the side effects about stopping bc and I'm pissed off that no doctor ever mentioned how terrible it can be!! Why isn't this something we are explained??? Weight gain, dizziness, exhaustion, depression, bloating, months before an actual period...All the symptoms I've already been having (minus the weight gain, which I'm actually excited about because i'm way to thin anyways, and period issues) are just going to get worse for a while The vitamins do seem to be helping though, I had a lot more energy yesterday and even went out last night after work.

What's making it even worse emotionally for me is my boyfriend and I are most likely separating. Things have just been so crazy between us, and I know lack of physical activity is a contributing factor but I also know i can't help it. Even on days I'm semi-normal down there, I'm afraid to have any sexual activity in case it triggers it. My physical "illness" and the depression, exhaustion, fear of doing anything in case I get dizzy, it just sucks. I love him, I know he loves me and he's still been checking on my health stuff daily to see how I'm doing (but I think it's out of guilt, honestly). I haven't really been there for him, and he has a ton going on in his own life. I try to be, but emotionally, I'm a wreck and the little conflicts that normally would be nothing to me are 10x more terrible. I couldn't imagine being with someone like me! One minute I'm laughing, the next I'm crying and the next I'm so hateful about stupid little things he does. Ugh. Just venting.