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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Oh wow, I'm so glad to have found this blog! I can't believe how similar your story is to mine! First time sex, IC - terrible doctors hindering my healing process for 13 years (I'm UK and we're WAY behind the states).
I've only recently realised the Vulvodynia etc is not part of the IC, although I'm certain they're related. I also have PCOS, and HPV related cervix changes and I'm certain these are linked too. Thanks for pointing me in the direction of genuine help to start tackling this.
Also, for anyone struggling with IC pain, I bought Catherine M Simone's 'Along the healing path' and followed her plan, pretty closely. I went from sitting on the toilet with a bleeding bladder for 8 hs plus a day to being able to get a job and lead a normal life - and would recommend anyone to do the same.
i can't believe it! i am fascinated with natural healing ever since my horrible experience with oral contraceptives and i was worried that i was going to have to resort to western medicine for my problem, and not heal it myself. i was on birth control pills for 3 months but they were high estrogen pills. i know this sounds like it could not have made any difference but BELIEVE me it has. the result of only a 3 month therapy was a chronic 6 month condition of acne. i did not have acne before and all of a sudden it was so severe my esthetician was recommending accutane. i am also on thyroid hormones (i am awaiting my appt. to switch to a more natural choice) so the clash of OCs was out of control. ANYWAY i am so happy i now know a name for my condition. i have not been diagnosed but i am positive it is because when my estrogen levels are higher (or when they are suppossed to be) the pain is relieved a little or as much as it can be and when it is suppressed (right before menstruation), the pain is awful. my point is... it's obvious i also had an insane chemical imbalance. and because birth control can completely fender your natural production of estrogen i am starting to believe this is the issue because i am never even thinking about sex when i used to crave it all the time... even before i was sexually active. your story has given me so much hope and i am so thankful. because of you i am now on my way to -hopefully- healing myself. thank you. thank you so much you are an angel and have shown me the light
I am so glad I found this site. And like hjeffords@wi.rr.com who had posted here, I am also very very scared that I will not be able to ever have sex in my life. I am an Indian and 26 years old with a normal life so far.
My journey is like this: I got a infection in the vestibule region about 1 year back. the symptoms were only itching redness and some swelling. It was just an irritant and I went to a gyn immediately. I had tried applying cocunut oil for 2 days which dint help me at all. gyn gave me antibiotics and combiflam. in 5 days, the discomfort was gone.
After a month wearing a particularly tight jean triggered pain in my clitoris. this time it was not that bearable discomfort but pain, aching pain. and no visible redness or itching. only mild swelling of clitoris and labia minora and severe pain. sometimes sharp stinging. the doc gave me 2 more doses of antibiotics and yeast medication which dint help.
I have a history of PCOS and the doctor suspected surgery to reduce the size of the clitoris. I dint like this idea and went to another doc this time an endocrinologist. As i had normal periods and other symtoms of PCOS we controlled it was concluded that I it was not hormnal. then new gyn new round of antibiotics and no relief.. then the next doctor decied i should "ignore" the pain in clitoris and i had another problem. my urethral opening is too small. they tried to stuff my urethral opening with uring tubes and forcibly diltaed it from 6mm to 9mm (average femalle adult apparently should have 14mm). this triggered a new pain -in the bladder, urethral opening and entire pelvic floor.recently i had also been diagnosed with coccyxdyinia and i cannot sit due to that for more than 10 mins. life became hell.. i had pain in clitoris, tailbone, urethra and that weird arousal like feeling with pain in rest of my vulval regions. it had been already 10 months now with the clitoris pain and 4 monthss with tailbone pain and now this new pain.. and still not 1 doctor had diagnosed my pain in clitoris. no one mentioned "vulvodynia/clitorodynia".. it made me so angry..
i went into deprression and was sent to a psychatrist. my work suffered and i was crying all the time and took an extended leave. i was prescribed tricyclic anti depressant - i had read this helps for vulvodynia so started to take it -though it was prescribed for depression. over a week i gathered my self up (pain continues, this was just 2 weeks ago). started ultrsound therapy for the tailbone along with pelvic exercises.. i went back to the doc who stuffed me with the catherer and i was told i need to undergo cystoscopy for cystitis. i had read a lot of things on net including Intertitial cystitis and pudendal nerve entrapment besides clitorodynia and vulvodynia. now i was scared i have IC/PNE. right now my tailbone feels better with ultrasound therapy and exercises.. but the clitoris is still so painful mostly when touched. when i am at home i dont wear a panty and then its ok. i still have pain in urethra and vagina - more like a pulling or tension of muscles there. clitoris stings on touch -even panty. i am still not strong enuf to go for the cystoscopy shceduled 2 weeks later. I guess my life is not going to be normal ever again i am so scared..
meanwhile my perios have become irregular and so light that sometimes i just have spotting..
so like Faf i am now wondering if its all hormone related. please tell me what kinda of hormonal therapy u took. i wanto to know how i can retain a hormonal balance. from my hormone assay onlt androstenedione is marginally higher than normal. other all hormones seem ok.. please help me how u managed to get back ur regular periods.. maybe that will help me too -getting regular periods..
To prev 26yr old woman who wrote on Apr 19:
My heart goes out to you. We do all have very similar issues, and I may be able to help some... I really hope at least somewhat because my sympathy for your story is soo strong. I have a busy work project this week, but as soon as it's done, I would like to talk/write to you more personally. Doctors make me furious too! I'm actually considering going to med school still.. just to help women like us.
Very briefly- it does sound like you're definitely experiencing a hormone imbalance if your periods are wonky. Whether it's related to your other v-pains is debatable, but if I had to guess.. I would say yes. I have been studying hormones very precisely for a while now, but of course I'm no doctor so I can only provide you with all the details I've found. I've found some AMAZING vitamins that have helped heaps in rebalancing my cycle, my pain, and my life. "Women to women" or NewChapter... each help in diff ways.. I can give you more details later... esp about the hormone intricacies and attach charts I've dug up over time. Please email me at faffafz@gmail.com
The clitoral pain is interesting, and although I didn't address it in my story... I actually experienced this for only 2 months. As you may be, I was surprised to see other women with this problem because it seems so unique/different than normal symptoms.. but if you check out: http://curetogether.com/Vulvodynia/1430/_symptom/ they describe very similar experiences to yours (or maybe you have seen or commented there yourself already?). You can also see the statistics for how many women experience that by clicking on the stats page of: http://curetogether.com/Vulvodynia/_symptom/
Surprisingly a lot! But my doctor never told me about that either!!!
Hi, I was on the pill for over a year before getting vulvodynia, and have never seen a link between them. I came off the pill for 2 months to see if it made a difference but perhaps it wasnt long enough. without the pill my cycle is 40 days roughly, but regular. do you think its worth me coming off the pill entirely and starting taking vitamins?