The Full Vulvodynia Journey: My Emotional Tracks to a Cure
I’m not a religious person, but I literally wakeup every morning thanking God for being Vulvodynia-free. It was the biggest challenge I have ever faced in my life, and I'm not sure how I got through it alive. I know exactly what it’s like to feel like you’re the only one; in fact, it wasn’t until after my cure that I even met someone else with the disease. I also know exactly what it’s like to have so many doctors and people dismiss it, telling you it’s psychological or stress-related, to the point you wonder if you’ve gone crazy yourself.
I tried everything. I tried to stay positive. I built myself up, coaching myself and wanting to believe “this is the treatment, this is the one that’s going to cure me!” The curse of staying positive and hopeful through every new treatment is that you fall that much harder every time it fails. The first ten tries, you can pick yourself up. But after 20 different hopes, your heart begins to lose faith.
Reports always insinuated it would just magically go away some day. But the amount of pain, the amount of time, and the amount of failed trials begged to differ. I quit my job and devoted my life to solving Vulvodynia, convinced I could find something to make me normal again. If not, I would die trying. The pain was not just debilitating or a compromise of health, it was a non-option.
One can never be sure when all of this begins. Some experts say it can start with trauma (psychological or physical), others with first penetration, it could have genetic components, external influences (creams or allergens), and even be related to other infections and imbalances in the body like yeast, bacteria, or hormones. This is why I start my story at the very beginning.
Nobody’s family is perfect, and my upbringing had some particularly tough times (psychologically and physically). But I doubt it was substantial enough to be any different than the sufferings of mankind as a whole. I personally don’t pick my childhood out as a culprit.
The first time I had sex was against my will, and somewhat forced. I know I had said, “No” before and made it absolutely clear I didn’t want to have sex, but in shock at the time all I could muster up in a shaken, scared voice was “what are you doing?” I don’t know that it was rape in the conventional violent sense. I was 15 and he was my 25 year-old boyfriend. I didn’t have the mental capacity to physically remove myself from the situation. It was only statutory rape. Needless to say, my heart and my faith were pretty broken up about it. That’s just the psychological side, but physically it also hurt. Some experts claim this is a determining factor in Vulvodynia. But in reality, whenever you break skin (namely a hymen) and bleed it’s not going to feel good. Physically, I could walk just fine the next day. But I didn’t walk with my head held high for a while. This wasn't the only encounter I had with unwanted sexual attention. School-boys were always copping feels and trying to go out of my "comfort" zone. Further molestation cases ran rampant. Unfortunately, many young girls are taken advantage of this way and throughout life.
This kind of intimidated sex continued on until one day I decided I would just accept it and give in. Heck, I already lost my virginity—why not make the most of it!? So I did, and really got onto it. I was determined not to let anything get me down. My Vulvodynia had yet to begin and overall I was a pretty happy person. I don’t even tell doctors or psychologists this half the story anymore because they give it too much attention. In all seriousness, it didn’t plague me long. Yes I was emotional initially, but I was still quite happy and “relatively” healthy.
I had chronic bladder infections from the time I first started having sex at 15. The late-night emergency room visits drove me suicidal from the pain. Antibiotic after antibiotic, yeast infection after yeast infection, I was beginning to wonder if I had something wrong with my anatomy down there. Perhaps the pieces just weren’t in the right place. All the turmoil down there left me a bit scarred and with a diagnosis of interstitial cystitis (IC) by the time I was 21. I still don’t know what that is exactly (How can you when you don’t even know what causes it or every other doctor tells you something different). I suppose IC could be a lot of things, but I also think it could have very well been the beginning of my Vulvodynia. With another year of antibiotics and no sex, somehow most of the pain with sweat and urine seemed to go away! What a relief, …or so I thought.
Slowly but surely, I became less and less interested in sex. My new boyfriend was wondering what was up, I was wondering what was up. I even tried to blame it on him at one point! I thought maybe he just wasn’t performing or enticing me enough, I thought maybe I had just become bored. How awful, I had been a sex-fiend before! The pain was so subtle at first, it had crept in without me realizing how or why. Sex had become uncomfortable enough over time that it disguised itself as a general lack of interest. I ended up hating condoms, but not because it took away the good feelings. I started blaming them on the bad feelings. I thought “ah-ha!” I must be allergic to condoms (maybe latex) “this must be the reason why I don’t want to have sex anymore.” So we researched other birth-control methods because I desperately did not want to be on the “pill” again. The pill seemed far too chemical and artificial to put into my body. I had already been on and off it years before and hated it. Unfortunately, the evil pill ended up being our only choice.
The birth control pill helped the pain a little at first, but what I didn’t know was that artificial hormones are only partially bio-active in the body. It could mimic some of the natural hormone effects but not all (leaving my body deficient in some areas). Worst of all, supplementing fake hormones tricked my body into thinking it had enough which inhibits the natural production of its own real hormones. The pain started to get worse over time. I didn’t want to believe it, so I just kept having sex anyway. It sounds stupid, but I felt inadequate as a girlfriend not being able to “put out.” I started to consider it was all in my head too, and that if I just pushed through it, I would get over it. So I just kept gritting my teeth during sex until I one day I started to bleed from micro tears in the labia. Although it was excruciatingly painful and scary, blood was sadly what I needed to prove to myself and my boyfriend—look I’m not crazy!!! This pain I feel is real!!! Blood couldn’t be psychological! Now I could justify yet another trip to the gynecologist.
“Vestibulitus!” (The typical q-tip test) Wow, a real diagnosis! Not the greatest thing to be excited over, but I was just so relieved to know what it was… Knowing is half the battle, right? Knowing what it was gave me hope for a cure, which inevitably led to more disappointment. My prescription: No sex (again), she was very emphatic about this one (of course, this made me want it even more). Painfully cleaning through the nasty little spots in the shower was the 2nd part, while also applying Nystatin cream morning, evening, and after every shower. The cream stung for the first week and then mostly became routine. My Gynocologist’s theory was that those little crevices of pain might be harboring yeast that were ultimately causing irritation. The cream didn’t seem to help much, but the daily cleaning actually did. I’m not so sure the cleansing itself had anything to do with it, as it felt more like the skin was being de-sensitized to touch. It would hurt really bad at first, and then minutes later the pain would have lessoned (seemingly out of numbness).
Two weeks later, she put me additionally on SSRI’s for a month because some studies had shown serotonin interacting with the vulvar pain path. Although the medication didn’t do a thing for my vestibulitus AND made me more emotional, they did completely take away my IBS. After a few more months of rubbing out those spots in the shower, I was ready to test my luck again. My gynecologist prescribed lidocaine to help with any sensitive areas left. Well, that was a HUGE mistake! It stung like the worst bee in the last place you’d ever want hit. Definitely no sex that night.
On top of all this, I was gearing up for a year-long trip overseas and thankfully wouldn’t need “chemical” birth control anymore. I don’t even know if my body was really cured and ready but we were desperate to get some intimacy in. First time having sex again was a bit painful still, but the mere excitement to be doing it after so long carried me right through any discomfort. We had a blast! And then I paid for it dearly the very next day with another dreaded bladder infection! This was an absolute nightmare. After not having sex for almost a year (and bad sex before that) now I was temporarily out of service again. What I thought was temporary ended up being the worst year of my life.
The first round of antibiotics (my typical Macrobid buddy) didn’t seem to be working. Tests revealed no bacteria, but as usual I was still in pain. I talked them into bumping me up to a heavier dose of Cipro. No relief, so I just tried to wait it out. It didn’t really get worse, but it didn’t get better either. I went to more gynecologists and had more tests done. No results! What could be causing all this pain then (I really didn’t want to believe it was interstitial cystitus all over again!) The gyno tried to claim that it was an “undetectable” yeast infection—she was sure of it! She prescribed me all the usual heavy yeast creams and pills and sent me off. They burned beyond belief! They burned me to tears, it didn’t make sense that something this painful could really be helping me. But she convinced me to keep pushing through it every night for a month! It only got worse.
My entire vulvar tissue was so inflamed, I finally rebelled against everything and resigned not to allow ANYthing down there again. I knew in my heart it wasn’t yeast (I’ve had yeast before, I know what that’s like) and now I was in so much worse shape. The tissue was so red, raw, and swollen, I took pictures of it throughout the day for comparison. I was constantly applying ice and walking around with wet tissues stuffed in my underwear. The pain was so unbearable I couldn’t even really walk, let alone stand. With only days before my flight overseas, I laid out in my gyno’s office balling. She hugged me and patted my tears. I felt like she somehow knew the pain I was in and was really there for me, even though I wanted to hate her for not being able to help me. She could only leave me with a further-inflamed vulva and a diagnosis of Vulvodynia.
Since coming off the pill, my menstrual cycles were never really normal again and then they just completely went away. At 25 years old, I essentially went into a state of menopause for about a year. The headaches were chronic and cyclical every day, and so was the vulvar pain. I relentlessly scoured the internet almost every day looking for treatments, therapies, hope. It often left me sobbing in fear. I couldn’t bare the pain one more day, how was I supposed to bare the thought of it never going away!?
I tried the non-oxalate diet. It may have helped a little, but wasn’t conclusive enough. I must have checked more than 30 plus drugstores in broken-English and there wasn’t ANY Calcium Citrate to be found abroad. But none of these treatments made sense anyway. I didn’t have to be on a special diet before when I was healthy, so why now. I was looking for more than a temporary treatment, or a drug I would have to take the rest of my life. I wasn’t even really looking for a cure, I was just trying so hard to get my body back to the way it was naturally.
I contracted quite a few infections as many people do in 3rd-world countries. The antibiotics (amoxicillin) I took for the infections often also took my vulvar pain away. It was really very strange. As soon as I would come off the antibiotics (the very next day) the pain would be back with a vengeance! This made me wonder if there was really something bacterial down there even though ALL the tests ALWAYS came back negative.
I tried everything: Fasting and detoxification (colonics and all), elimination diets, and raw-food diets. I visited other types of doctors, allergists, naturopaths, nurse practitioners, muscle-testers, acupuncturists, herbalists, and nutritionists. I did yoga and special exercises for months. I tried counseling and emotional therapies because some experts will say we’re holding negative emotions inside that display as physical pain. I really didn’t think I had any problems here, but I was so desperate I learned to love my enemies even more and confront the people that caused emotional harm to forgive them. Every day I meditated, used the power of positive thinking, and envisioned my inflammation gone. I even envisioned having sex that felt good (which is really hard to do when you’re in a lot of pain). I worked on eliminating every last ounce of stress from my life. I fanned my “area” dry every day. I stopped wearing underwear. I tried so hard people thought my problem might be from trying too hard. I was asked to embrace the pain and thank it for sharing, to let go, and everything would get better. Well, that didn’t work either.
My lack of periods had to be hormonal, and I really started to suspect my Vulvodynia was an effect of this extreme hormonal imbalance. I desperately didn’t want to do hormone replacement therapy (HRT) because I felt the birth control pill (artificial hormones) is what had gotten me into this mess in the first place. I started working on natural approaches to get my hormones re-balanced. On advice from a naturopath, I took Angelica sinensis in the wholesome plant-form from the local Chinese herb shop. Later I found out it is the same thing as Dong Quai (usually found in the pill or tea form).
The following month I started noticing extra hair in my hand after touching my head. Then I noticed my hair everywhere, in my bed, in the bathroom. I thought “I must be crazy, I’m probably just focusing on it” so I tried to ignore it. I knew if I brought it up, no one would believe me anyway. Over the course of a few days it got so bad I couldn’t trick myself out of noticing it anymore. I knew I was losing my hair. I brought it up with my travel partner and sure enough she, along with everyone else, just dismissed me as making things up. It wasn’t until I actually could start to show bald spots that people finally started listening. It was a really upsetting time. My hair had been long and full since I was a kid; it had never been cut except for trims. My hair is literally like another limb. The whole thing was so devastating. Little did I know at the time, hair loss often occurs with an extreme hormone shift.
It wasn’t until my period came back with a bang (a horrible but wonderful moment) that my life started to change. I was in so much physical pain (after not having a period for almost a year), I couldn’t even walk from the dizziness. I got a little scared that I might just pass out in this 3rd world country where there were no real hospitals around. Despite the pain, I was ecstatic to be having a period! I felt like a little girl going through puberty all over again. I even abruptly gained weight—it all had to be hormonal. I can’t say for sure whether it was the herbs, or any one specific approach, but my travel partner was having her period at the same time. I thank her for giving me the final trigger! The most amazing thing is that my vulvar pain immediately and noticeably started to fade! I could not believe it! It was still bad, but I could walk fearlessly again. I could even start working again. Every day got better and better, but was still not pain-free. By the time I made it back to America to see my boyfriend I was still in no shape to have sex. But I was happy to finally be on the right track. I focused on my hormones. I dieted for them, I took supplements for them, I exercised for them. It all seemed to help a little more. Then, things really started to improve when I began taking a set of high quality vitamins. My menstrual cycle regulated the only perfect 28-day cycle I’ve seen in my life! It was completely natural!!! More importantly, my vulvodynia completely went away!
I’m a scientist by nature and by training. I like to have control over my life. Vulvodynia threatened who I was. It forced me to take a fine-tooth comb over every aspect of my body and my health. I ended up tracking my symptoms meticulously everyday for 9 months. I graphed chart by chart, month by month, and throughout the year to identify trends and patterns. I learned things my doctors couldn’t have told me, I learned things that none of my test results would show. I learned that my Vulvodynia and headaches were caused by a major hormonal imbalance and every detail about it. Piece by piece I was eventually able to cure myself. I’m sure there are a lot of causes that build up, but I primarily blame the “pill” for what happened to me. It was the most extreme hormone disruption I’ve introduced to my body and I’m not sure I will ever fully recover.
The first day I had sex again I cried. But this time it wasn’t because I was in pain. The uncontrollable tears came from what felt like years of my life lost to finally having a chance to live a pain-free life. I don’t know how I got through it, there were times I really felt like letting go. It was the most horrible period of my life and all I want to do now is help women from ever going through the torture I went through to be cured.
I thought about being a doctor as I know first-hand there’s a dire niche to be filled. I wanted to makeup for all the help I didn’t receive. I decided to help on even a grander scale. Fortunately I came across another scientific team of like-minds who have also suffered too much from these debilitating conditions. Research is chronically under-funded and we knew we could do more to help it go faster in and outside the lab. CureTogether.com brings patients, doctors, and researchers together to share what’s working and what’s not real-time. We felt like we could have suffered a lot less if we only knew what treatments others were trying and what experiments had already failed. A patient’s fate wouldn’t have to only rely on what one or two doctors knew. But more than reviews, we specifically wanted to open up research to everyone. Symptoms could be tracked over time and evaluated in graphs to find unique problem areas. Patients could have the option to anonymously compare their results and graphs with others to learn even more. The possibilities are endless. Because of our personal experience with Vulvodynia and lack of adequate resources, it was one of the first conditions studied: http://www.curetogether.com/Vulvodynia/
As for my life now, I am still working on alternative ways to naturally balance my hormones. I eat 100% organic, mostly raw food but still a portion amount of protein every meal. I avoid endocrine disruptors as much as possible, and I avoid ANYthing that could interfere with my natural hormone balance (including foods like soy or other oestrogenic components). I drink only fresh purified water with minerals, and bought an expensive air-filter. To some this may seem paranoid. But for anyone who has been through the kind of pain Vulvodynia creates, you know better. After going through hell and back with my body, I’m allowed to be hypersensitive. Regardless of what life throws at me from this point onward, I will never forget the day my Vulvodynia was cured.
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In reply to comment on Apr 29:
Hi,
Of course I'm not an MD and not allowed to offer 'medical advice'... but from my own humble opinion (truly humble and only experienced from myself, research, etc)-- I DEFINITELY believe there is a link from the pill to Vulvodynia. There are studies that have shown this... and I have heard studies that don't show this. I know I should look them up and copy them here... but I'm somewhat short on time.... so I will just promise to post them as I come across them again! I'm pretty sure the last one I saw came directly off the vulvodynia.com tutorial for docs. Having said that, vulvodynia is such a variable condition caused by SO many things... and experienced in variant ways.. so your case of V may be caused by something totally different. This is because in reality they are probably different diseases altogether, Science just hasn't classified them yet.. and lumps all "currently unexplained" V-pain into one category. I suppose it depends on how bad your case is, whether or not you want to try to come off the pill. I can tell you for sure that even after coming off the pill... it would take much more than 2 months.... It took me almost a year to get my period back, and then at least a year before I could get it regular and V-pain reduced. Other women take longer, and there's a part of me that wonders if I will ever fully recover from the hormone imbalance fragility, even as I've gotten the V-pain under control/cured. It's sure that the pill does not affect women as negatively as others, but as far as I can tell... it's also sure that other women (more sensitive, more susceptible, diff genes, whatever) ARE really affected negatively. If you do the vitamins for at least 3 months, take note of your v-pain levels every day as well as your cycle length... and any other hormonal symptoms.. like menstrual pain (cramps, headaches, breast pain, etc). This may all help you define hormone problems vs something else. I wish I could be of more help... please continue to research and ask questions here and everywhere.. we HAVE to help each other. This can be one of the most physiologically debilitating diseases... and can end up taking such a psychological toll too. faffafz@gmail.com
Thankyou for such a long response! Because my symptoms arent as bad as what ive been reading about, im reluctant to come off the pill (as ive come to rely on choosing when to have a period) especially as it could take so long to have effect. I have been compiling a list of actual causes of vulvodynia from the internet. Hopefully i will be seeing my first gynaecologist soon and i fully intend to demand that we get to the root of the problem rather than just trying to improve the symptoms.
My list of causes at the moment is as follows:
- hormone imbalance
- ecoli infection
- hyperactive bladder
- allergy (to glycerin or yeast)
- wrong PH
- Interstitial Cystitis
- neuralgia or inflamation of nerves due to pain
I hate the phychological effects of this. sleep is my only real escape so everyone thinks im really lazy, but its the only place i can completely forget. I havent told my new boyfriend yet and im terrified what he will think.
I am tempted I think to wait until i see a specialist to see if i should come off the pill. I have been on it since i was about 12 to help regulate my cycle. interestingly this was when i first started getting problems, namely cystitus. I think my specialist and i have a lot to discuss..
Faf, I have been dealing with this problem for so long and have just now figured out why... is there anyway you could tell me exactly which vitamins you take? I would be so so so grateful
Hello,
Great reading your story, and also sad that you had to take it upon yourself to find relief.
I have a hankering that my vestibulitis is caused by horomones too. yes, yes, i had the round of poorly treated yeast infections etc. . . .but like many of the women commenting here, I also have a history of PCOS (with very slight hormonal variations, when tested i might add) I have mild hair growth on my face, acne since i was 12, and painful periods (those started once the vestibulitis did.) very shortly before my pain started, the hair growth on my face did. My periods are also a bit weird, despite the cramps, i also spot for about 5 -6 days before actual menses.
Phew, so all of this could be coincidental, sure. Why couldn't someone just have vestibulitis caused by some outside factor and PCOS at the same time? I'd think this too except for one curious clue: when I ovulate, my vestibular pain virtually disappears. I am able to have pain free sex for 3-4 days in row (sometimes I even have ROUGH sex during ovulation without a care) In my luteal phase (when progesterone is highest) I feel THE WORST. Not to mention that ovulation is like, the only time during the month i even want to have sex or get aroused. . .and I don't think that this is just because it doesn't hurt.
Does anyone else have this experience with their vulvar pain disappearing like a phantom during ovulation? It's a little hard to ignore the elephant in the room, but it seems like a lot of specialists believe that it's a deficiency of estrogen and testoserone that could cause vestibular pain, and i apparently do not match that profile. . .