Comments and Personal Stories

Another Woman's Story

It was six years ago to be exact. I remember lying on my couch watching TV when I felt an odd fluttery feeling in my vagina. That day was the beginning of my slow descent into misery. Prior to that day, however, life was fairly good. Although my days were spent mostly in bathrooms, considering I had to (and still have to) pee every hour, sometimes 4-6 times in an hour, the pain was minimal. And if there was ever pain, it was when I had to hold off going to the bathroom. Like going out for drinks with friends, the boyfriend/husband, and then the drive home! Why do we women (and I'm sure some men too), always have to pee right after we have peed, as soon as we get in a car to drive home from wherever we had that forsaken alcohol "The pain would be a burning, stabbing feeling inside my pelvic floor. I always thought it was normal" until the fluttery feeling in my vagina.

As time went on I noticed the fluttery feeling in my vagina happening more and more. It was so uncomfortable. I was not sure what it was and where it was coming from. Considering it was something I never experienced before, I was not sure how to approach getting help for it, especially considering I recently had been laid off and so did not have health insurance. For over a year I endured this odd feeling getting worse and worse, until I finally got benefits and made a doctor appointment.

My first doctor appointment was five years ago. I walked into her office unsure on how to talk to her about this, what was I going to say, "Hi doctor, the area around my clitoris flutters all the time and I don't know why." To me, that was the embarrassing route and the route I wanted to avoid. I instead had a plan to talk to her first about what was going on in my life, then slowly ask her about the fluttery feeling in my "pelvic floor" (the technical definition). When the doctor finally came in she had an intern with her; a girl my age. I was horrified. I couldn't talk with her around. I had asked friends if they had similar feelings before and I always just got ghastly looks. I already thought of myself as a freak, and I didn't need any more people agreeing with me.

Immediately I asked the doctor if I could speak to her alone. Although I felt bad for the intern, the doctor adhered to my request and gave me the chance to talk to her alone. I was embarrassed, distraught, scared. I didn't know how to approach this. I started to tell her how I recently started a new job and school again, etc, and then how I got a fluttering feeling in my vagina on and off all day and that I wasn't sure what it was, oh, and that it was worse when I was nervous or had anxiety. I felt better saying that (and it wasn't entirely untrue), because I felt like my problem needed some sort of excuse. The doctor was so nice about everything, I was so relieved! And she had an answer for me! After a year of waiting, I found out that I had a lot of stress in my life which was causing a lot of blood flow in the area, and, thus, I was getting the ever so wonderful "flutters". So my doctor prescribed me Zoloft and sent me on my way.

First of all, I was a psychology student at the time and knew I didn't need Zoloft (I have since gotten my degree). Sure, I might have had some recent changes in my life that may have led to certain anxiety now and then, but I didn't have a disorder; or at least I thought I didn't have a disorder. Regardless, after only a week of taking the Zoloft, my body rejected it by my fluttering feeling in my vagina getting worse rather than better. A few weeks after I quit taking Zoloft, my fluttering feeling began metamorphosing itself to more of a throbbing feeling. It was horrifying! I made another doctor appointment.

I was so humiliated by this problem. I didn't know what it was. So along with peeing constantly (which wasn't popular for the desk jobs I had often), I now had a throbbing feeling constantly (just simply a replacement of the flutters) in my vagina. The throbbing was everywhere in my vagina, not just clitoral. It felt similar to the throbbing I felt after an orgasm, but I wasn't nearly going to tell my doctor that. However, I had to tell her something. When I went back, she had me do a questionnaire; mainly on incontinence. She (my doctor) came to the conclusion that this fluttery/throbbing feeling was probably coming from my bladder. I was referred to a urologist.

Having been referred to now a male doctor, I had even a harder time talking about the problem that I had; that kept changing and getting worse over time. However, he was very nice and suspected I suffered from Interstitial Cystitis (IC), which was a chronic bladder disease that has been known to cause odd symptoms with the pelvic floor. Did I have another answer!! I was very excited, but not about the number of tests I had to go through first to get the diagnosis. It would not have been so bad if I didn't lose yet another job two tests away from my diagnosis, thus my insurance once again.

Two years went by and still no diagnosis. I worked temp jobs in the administrative field while I went to school, and so did not have insurance. It was also hard keeping a job due to sitting all day. It seemed the longer I sat, the worse my problem got. After a year, it got to the point to where I could barely sit through class. Along with going to the bathroom often during class, I also was often fidgety in my chair in class causing others to look at me as if I was odd, annoying, or else the worst case of ADHD they had known. It's not like I could look at them and say; "sorry I'm annoying you, but I'm getting a constant throbbing sensation down there that makes me want to jam my pencil into my vagina or even my temple, at least that would make the problem go away". And, yes, I often had thoughts like this. I knew I had to wait to see a doctor until I had insurance, so in order to cope until then I tried talking to friends and family. I first confided in my best friend. Although she was one of the one's before that gave me those ghastly looks, but I thought it would be different this time. Yes, she listened. Yes, she seemed like she deeply cared. But, no, she had no idea what it was doing to me emotionally. I thought I explained it clear enough to her just how debilitating this was becoming, but often she would call and ask how my "orgasm" problem was doing. That made me so angry that I didn't bother talking to her anymore about it and refrained from telling others.

Three years went by and still no diagnosis. The problem was worse. I needed to find a job with insurance. Now I was beginning to feel that burning, stabbing feeling in my pelvic floor even when I didn't have to use the bathroom. It was most often either right after I went (if I didn't get it all), or after I ate. It was so odd. But it was getting worse, to where I would sit on the toilet for almost an hour every night to make sure I would pee it all out so I wouldn't get that feeling when I went to bed. I did what I could and found a full time job with benefits, and so I went back for my diagnosis.

It was the cystoscopy with hydrodistension that finally gave me my diagnosis. So up to that point I had been given anti-anxiety pills, poked, prodded, and surgically reviewed. It was final, I had Interstitial Cystitis, and I was chronic meaning there was no cure for what I had. I sank into a deep, deep depression.

With no one to talk to, and knowing I was going to live with this burning, stabbing, throbbing feeling in my vagina forever, I thought it was all over. I started to do poorly in school, at my new job, and started withering away from friends and family. I had no one to talk to! If my back hurt, or my head, or something normal, things would have been different. It was this point I felt I was being punished by God for not settling down for one man. You might say I dated a lot, but I always thought that was normal for a college girl. But I felt I was seen differently in God's eyes, I mean I must have been to have been struck with this humiliating, weird, horribly painful and embarrassing problem.

Four years went by and I had my diagnosis. I was chronic. I was never going to sit normal in a chair again. I was never going to be able to enjoy time alone with my mom having coffee and chatting about the weather without feeling burning, stabbing, and the throbbing feelings in my vagina. That was worse of all. Those were and are the times I have thoughts I would never repeat to another soul. I thought things were just getting worse. I was at my end, then I met my husband.

He became my everything. He was the nicest, most caring and wonderful man in the world, and did I mention absolutely stunning" I didn't get it. I was cursed with this horribly humiliating and painful disease, and yet I was given the most wonderful man in the world. After seven months we were married. All was wonderful, even after I told him everything" most of the time.

My husband became the only person (except for the few friends I told initially who thought of me as a hypochondriac) who really knew what I went through. Every day was a struggle. The poor guy became my sole confident. The only person I could talk to, and that was a huge responsibility and even more so, a burden (in my eyes). I knew and still know at times it is hard for him to handle my problem. Living with a chronic disease is not only physically exhausting, but emotionally draining. One can only take so much.

Approaching our one year wedding anniversary, I saw just how draining my problem became on our marriage and on my husband who was my everything. I had been taking Elmiron for my Interstitial Cystitis, but it wasn't helping. I was getting worse still. Now instead of just the throbbing in the vaginal area with the burning, stabbing feeling, I started to get a pulling, pushing feeling in my vagina right before I would get the throbbing. So now every time I sat down, layed down, took a bath, walked to class, everything but swimming or sitting on a toilet (it was weird), I would feel a horrible pulling/pushing feeling following a throb, then the burning/stabbing sensation. I was a mess. I went for more help, more answers. After all, both my husband and I agreed that a chronic problem shouldn't keep getting worse. I had already quit smoking, watched what I ate and drank, took this "Elmiron", and began taking Prelief to help with me eating acidic foods, and I was getting worse. At this point, if it wasn't for my husband, I really don't know if I would be here now.

Five years went by and I still had no real answer. What was this throbbing feeling" Where did the burning come from" Nothing made sense. I was beginning to scare myself because I was changing into a different person, a person I didn't like at all. I cried often, had violent outbursts, and, yes, all of this around and to my husband "poor guy". Also, sex began to become painful, putting even a worse burden on our new marriage. But I started feeling a new pain on top of everything else. That's when I went to see my gynecologist only to find out I had a 5.5 cm cyst on my left ovary.

The first thought that came into my head was this ovary was pushing against either a nerve or artery and was the cause of all my problems. Did I find another answer? I needed to know, and I needed to get it removed. To my dismay, however, my gynecologist wouldn't remove it. She said it wasn't the cause of my problems and would probably go away on its own. Unfortunately, she was right. By the next month, it had shrunk. What a disappointment. I was even more depressed than before. The depression was different this time, however. I was losing hope, and hope had always been my true sense of security aside my husband.

Being in her office and hearing this bad news caused me to burst into tears. I think I caught her off guard, but I was slightly relieved she could see just how detrimental my problem was. The doctor said the only thing she could do for me was refer to me to the Incontinence Center of America (ICA) in town. They are specialists with the pelvic floor and specialize in bio-feedback. Although I had no clue what that was, I took their number. But I didn't have any intention on calling. I felt doomed. Nothing was the answer, nothing worked, no one believed in me, no one wanted to help me. I felt helpless, abandoned, and lonely. I went home and cuddled with my husband.

The next week I had a seminar to go to for work. I had my immediate boss sitting next to me and the owner of the organization on the other side. What a nightmare! I had tears in my eyes after only a half hour of trying to sit still. All I felt was throbbing and pulling, then burning and stabbing, constantly. I got up to use the bathroom multiple occasions using different excuses; I have to wash my hands, oh, I spilled something on my skirt, I don't feel well", the excuses were endless, the embarrassment infinite. Then the next week I started classes again for my graduate program in counseling. I got up the first day in the middle of the class to use the bathroom, and the teacher had the nerve to announce to the class that we just had a break and he didn't understand why I had to go again. Luckily, he pushed my buttons the wrong way and I had the right words to say, because I gave him my two cents after class on just the surface of my problems (my excuse was always just my bladder disease). Although it felt good to tell someone off, I didn't feel better inside. I still hurt, more than ever.

After a few weeks since my gynecologist appointment, I decided to give this ICA a try. I called and made an appointment. Wow, what an amazing organization! In their office, they had information all over regarding IC and how these women with this bladder condition (as I had) lived with such pain all the time. Although I was grateful, it didn't explain the other pains I had; the pains directly on my vagina. A pain that no doctor had been able to identify for me. The ICA wanted to try biofeedback.

This biofeedback included sticking a stick like object in the you know where, and having the pelvic floor muscles read for spasms while registering those spasms on a machine. Supposedly, I was off the charts. The nurse at the ICA said I had the worst muscle spasms she had seen, but didn't know what to do for me except assign me pelvic floor exercises to do at home. Those didn't go well at all. If anything, the exercises made it worse.

Five and ½ years had gone by and I was as depressed as ever. This problem was getting in the way of work, school, friends, family, and most importantly my marriage. I was at a dead end. During these times I often would get online and do research about what I had, symptoms, etc (which would often come up with porn sites), but something different happened one day. I came across a support group online called PSAS (Persistent Sexual Arousal Syndrome). To my astonishment, the majority of the women (and there were men too) on this website had symptoms similar to what I had. It was at this support group where I learned of a little thing called Pudendal Nerve Entrapment (PNE) where people often get burning, stabbing, pulling, throbbing feelings in and around the pudendal nerve which was located throughout the pelvic region. I was overjoyed, but anxious and scared at the same time!

The next week I called the ICA (I was done with regular doctors), and told then about this nerve and of PNE. The nurse said that made sense and that this PNE could be a cause of a lot of their patients' problems. They never even heard of it, imagine that! And after years and years of searching, the nurse gave me a name and number to a doctor less than 25 miles away who specialized in pudendal nerve problems. I felt like I was finally there, that I finally had an answer. I was so scared however.

After a month of waiting (the doctor was quite popular), I made it in. She was so wonderful, caring, and listened attentively. After only a brief description from me of my symptoms, she knew immediately what I had. I had nerve damage to my pudendal nerve. It wasn't exactly pudendal nerve entrapment, but it was the nerve. After all these years of searching, it was as simple as a nerve problem. This particular part of the pudendal nerve was sent messages by the brain to pull, push, stab, and burn along with telling my vulva muscle to throb. However, she was not sure exactly what caused the nerve damage. She had three theories. First, either there was something wrong in my brain, possibly due to scar tissue from a serious car accident I had 10 years ago, the trauma from my IC caused the nerve damage, or else, strangely enough, I had the chicken pox (better known as shingles) still dormant in that nerve and thus irritating the nerve. Speaking of the chicken pox, I have had re-occurring shingles on my face since I was a child due to the same problem from a nerve in my face.

So after six years of waiting, I finally have an answer What a relief. I still have my negative thoughts when I feel the burning, stabbing, pulling, pushing and, oh, throbbing feeling in my vagina, but I force myself to think of the future, the future that now carries hope. I had my first nerve block not long ago, in the nerve branch that is damaged, and for the first time I could sit without pain. I never appreciated something so much in my life. Unfortunately, the first nerve block didn't work, the pain is back to normal. But I have recently had an MRI done, and have scheduled another nerve block in the near future. I am optimistic everything will work out finally. I'm just so thankful I never "threw in the towel" and gave up. Although at times I wish I would have just came right up front and told the doctors the details of what was wrong, but our society is based around sex, mostly dysfunctional. I was embarrassed because of the area that was being affected in my body, and my embarrassment led me to 6 years of total and complete agony. I am writing my story today to share with the many women who might have these symptoms or other symptoms, to tell all of you to go to your doctors and share your stories! Doctors need to be introduced and made aware of problems such as these that are affecting women across the globe. We shouldn't have to live in pain anymore. I never gave up, and I'm finally getting the answers that I hope will one day make me pain free.

Rebecca Tamboli,
(author's name printed with permission)