When The Sexpert Can’t Have Sex

Of all the devastating news Dr. E. gave me, by far the most difficult for me to handle is the fact that I can’t have sex…for an indefinite period of time. Until I get better. If I get better.
For anyone who knows me well, sex is something that has defined my life. It is a huge part of who I am, how I see and relate to the world. It is what I breathe, what I study, what I advocate for.

I used to believe that sex was best had at least twice a day; an easy thing to do in the beginning of my relationship with my partner when we only saw each other once every six months or so, for a week to ten days at a time. During that time, everything in our lives, outside of the bubble of each other, stopped. Once our clothes came off, they were rarely and very reluctantly put back on. Since we lived a time zone apart and saw each other so infrequently, we had little opportunity to transition from friends to lovers and dating each other was not something we really did.

Although I know we have an enduring friendship and a sturdy relationship, in addition to all of my “new” medical problems, I worry the most about how not being able to have sex will impact our relationship and, most of all, my self-esteem.

I’ve had pain for so long I really don’t remember not having it, but not having had sex as frequently with anyone other than my current lover, the pain occurred much less often. And when it did occur, I generally chalked it up to being my fault…to not being wet enough, or wanting it too many times in one day/night, or not being able to focus my mind on what was going on. I rarely blamed my inept (or sometimes very capable) partners and I only sometimes blamed the endometriosis. Perhaps once every millennium or two I might get an inkling that maybe I wasn’t enjoying this because of past abuse experiences, but generally I tried to shove those thoughts out of my mind.

All too often I kept pushing on despite the pain. Sometimes I pushed through it because it reminded me that I was alive, that I could feel something on the days that were so dark and endless. Other times I kept going because it was my body goddamn it and it was going to respond the way I tell it to…which is with pleasure and not pain. That approach rarely worked.

When I told my partner about my multitude of diagnoses and treatment options, I saved, what for me, was the most humiliating part, for last. I told him that we wouldn’t be able to have sex, or any kind of penetration for me, until I get better. If I get better.

I waited for him to process what I said. I waited for him to blow up. I waited for him to get angry. I waited for him to protest, to cry, to pressure me like so many of my other lovers. Most of all, I waited for him to leave.

Instead, he just sat on the sofa, took a few agonizingly long moments, which felt like an eternity, to think about what I just said. Finally he proclaimed, “Ok. We’ll wait as long as it takes then.” I sputtered and protested. I tried to spar with him about how he would eventually get fed up and leave or pressure me to give in “just this once.” He reminded me that it was far more important to him that we are able to have sex without me being in pain and he was willing to wait as long as it took for that to happen.

I should have been happy. I should have been relieved and grateful, maybe even crying on his shoulder in gratitude, but instead I was bitter. Bitter and disbelieving.

Always the optimist, he assured me I would get better (as if he has any authority or credibility to be assuring shit like that!). I didn’t feel his enthusiasm or optimism. He told me that our relationship is about so much more than sex-that we started out as friends for 7 years before we ever had sex-that we could get through this together. But I remained doubtful. I started to believe what a dear friend once told us-that two people who love each other but don’t have sex are friends, not lovers. At the time I thought it was a ludicrous thing to say, but now I was beginning to fear the weight of its truth and I wanted a goddamn lover not a fuckless friend!

My partner had to remind me, the sexpert, the one with the insatiable sex drive, the one who studies sex, talks about sex, advocates for healthy sex for all people, that there were more ways to be sexual and intimate than just sticking a penis in a vagina. He had to remind me of what I had been preaching for so long…preaching from the comfortable, arrogant distance of one who isn’t directly impacted by what they are talking about, to people who weren’t listening anyway (or so I thought)! He had to remind me of what I swore was true, that is, until it affected me directly, until it affected us and our relationship. Somehow, the strength of my previous convictions wobbled away with this new news.

Although once upon a time sex was a multi-times a day event, we, like so many other couples, eventually fell into a routine where sex was once or twice, three times at most, a week. It was often late at night between two people who generally would rather go to sleep, with too little foreplay, too many muttered words about how “next time will be different” and definitely, too much pain. As I tried to process my new doctor’s orders to abstain from sex for an indefinite period of time and this was already what our sex life looked like, how the fuck was abstinence going to make it any better?

My partner may have gone through a five year period where he didn’t have sex because the situation wasn’t right or he knew she wanted more than just sex or he was too tired or drunk or whatever his noble reasons were, but that sure as hell wasn’t me! As he pointed out somewhere in our conversation, I use sex to dominate my body, to have it as often as possible, when I want it and how I want, in whatever way I want it-on my terms! Rarely did I choose to abstain from sex, even if I knew the other person wanted more from the experience then I did.

Maybe he could go years without having sex and satisfy most of his needs with masturbation, but I am a recovering Catholic and as open as I am about sex and masturbation, I’m still only sometimes ok with touching myself at all…and besides…that wasn’t much of an option for me now except to apply greasy medical ointments in a most non-sexual manner!

Despite the fact that sex, in some positions, an increasing number of times, was painful for me…sometimes curl up in a ball in agony afterwards…sometimes only hurting for a brief moment or two, it was still away to be close to my partner and to be closer to myself. And I never knew if there was going to be pain or what kind of pain I might be in until we got to that point, if we got to the point.

The times when there was no pain, when I was on top or he was going down on me and orgasm after orgasm flowed through my body, I was enlivened. I was beautiful. I was two steps further away from every negative, violating and painful sexual experience that had previously consumed so much of my life. There was no way in hell I wanted to give that up now!

I never considered the toll that having painful sex was taking on my body-the body imprints (as Dr. E. would say) that it was leaving behind. I also rarely told my partner exactly how much it hurt, which, as I look back on it now, was an amazingly hypocritical thing for someone who values honesty so much, to do.

Eventually the pain of intercourse, the burning irritation of merely having his penis near my vagina or the all over my body feeling of acidic hives I would often get the rare times we didn’t use a condom, left me less and less likely to want to have sex. I grew increasingly more likely to start a fight or read a book or stay up until well after he went to bed so that sex became less of an issue, almost a non-option. And then I got pissed off about the fact that we weren’t having sex and I often took it out on him; though no one ever saw the ways in which I internally took my frustrations with sex and pain out on myself.

By taking sex and any form of vaginal penetration out of the relationship, for an indefinite period of time, what was that going to do to us? To our relationship?

Oh, I failed to mention another layer of complication. Due to the pain I feel, which also sometimes occurs when I orgasm, I am supposed to avoid anything that makes me cum. The problem that avoiding orgasms causes for me, and I know I won’t get much sympathy here, is that if I am aroused enough, I can cum without any genital stimulation at all. So, does that mean that my partner should stop stroking my hair and nibbling on my ear to the point where I cum because it makes my lower back spasm in pain?

If all of this is the case…if we are supposed to avoid sex, avoid any penetration for me and any orgasms for me, how the fuck are we going to survive this? Sure, I can get him off, but what about my needs? They didn’t dry up just because it hurts! How am I going to survive this? He can at least jerk off! What the hell will I do for a release? I become a lunatic when we go three days without sex! What the fuck are my options now?

It’s my body that’s in pain, that’s causing all these problems and one of my biggest and most comforting sources of release and relief has just been yanked away from me. What the fuck do I do now?

Wedding Day Blues

This post has been mulling in my brain for quite some time now and it had a very different slant to it before I went to the doctors…as I am finding so much of my life was different before that day!

A week prior to seeing Dr. E., my partner and I had spent considerable time discussing weddings and marriage since we were going to attend the wedding of two of his co-workers, both of whom I’ve met several times before. Truth be told, I was not looking forward to the wedding, even though I like both of the people getting married. I wasn’t looking forward to it because I did not want to face what, for me, have become the inevitable wedding questions…”Why aren’t you married?” “When are you getting married?” “Is there something wrong with you?” “Are you a lesbian?” “When are you going to grow-up?” and so on and so forth.

I hadn’t always been against marriage, in fact, in one of my earlier posts, I wrote about wanting to marry my first childhood love. In college I had a thankfully fleeting feeling that I wanted to marry the guy I was sorta dating, because, as I told my mom, “he is just as miserable as I am”. I’ve even batted the idea around with a few other people I’ve dated since Mr. Misery. The closest I’ve come to following through getting married was with someone I met while living in Ireland, someone I thought was the love of my life. For a long time I fantasized about how getting married would curb his desire to whore, er, travel his way around the world. Fortunately I gave up on that idea!

During my single years since him, I spent a great deal of time thinking about weddings and marriage and what that institution means to me. I attended a lot of weddings as the single woman. I heard the reasons the people around me were getting married and I saw lots of miserable relationships and divorces. I also thought about how I love and what I want from a relationship and from life. And I realized that marriage, as it currently exists in the United States, does not fit my needs or beliefs. I recognized the legalized discrimination inherent in marriage in this country and decided that I was not going to get married until it was something that every adult in this country could do. Naturally when I began to talk about my reasons for not getting married, people assumed I am a lesbian. I let them assume whatever they want.

The truth, in case you care, is that I don’t care one way or the other about the gender of the person I am with, I love or have a crush on. My feelings have been just as strong for men as they have been for women as they have been for people whose gender is not immediately obvious. Trying to discuss this with people in my life all too often has caused even more problems since I can’t easily be labeled.

Once I came to these realizations about myself and decided that I would wait to get married, I made it a point to tell any prospective partner about my views within the first few dates. I also made sure to tell them that I was never going to have children either. This led to a drastic reduction in my dating life!

After my nephews started coming into this world, my views about marriage discrimination only solidified. I wanted them to grow up in a world where they could love and marry, or love and not marry, whomever the hell they pleased. I wanted to show my five nephews that it is important to stand up for what you believe in, even when it isn’t an easy or popular thing to do. And as they grew older and began to ask us if my partner and I were married, I, with both of my sister’s permission, told them that we were waiting until boys could marry boys and girls could marry girls. While at the ripe ages of 7 and 8 I don’t think that they fully comprehend this, I hope it has a positive lifelong impact for them.

My current partner of four years (a new record for me!), happens to be a man…which to me is as insignificant as his eye color. We had zillions of conversations about my views on marriage and kids over endless phone calls, since he lived in Chicago and I lived in Pennsylvania at the time. He was stunned and confused and often disagreed with my viewpoints. While I tried to respect what he was saying, in order to be true to myself, I kept reminding him (and keep on reminding him) that this isn’t about my feelings towards him. This is about my unwillingness to participate in legalized discrimination, a form of discrimination which would directly impact me if he happened to be a woman and not a man.

My partner grew up assuming he would get married and have kids and I did too, until I took boatloads of time to think about these choices for myself. Despite our disagreement on these issues, we began to date and over time, I hope without pressure from me, my partner began to see that he too did not want children and was willing to wait to get married until everyone in this country can.

These decisions did not cause much of a change in his life initially. His friends thought we were weird but it would pass. His family didn’t pry any further when we, separately, told them of our choices. It wasn’t until he was employed at the hospital where he currently works that he began to get a lot of shit and a lot of “You’ll change your mind someday” or “Someday you’ll make an honest woman out of her” crap.

And on some level I was happy that he was finally hearing some of what I have been hearing for so long…that our relationship didn’t matter, wasn’t as important or as meaningful as a marriage. Despite the fact that we are committed to each other in every way, that we have told each other time and again that we want to grow old together through the good times and the bad, that we have joint checking and savings accounts (unlike many married people I know) and that we, at least monthly check in with each other to make sure our relationship is working, moving in a direction we both want it to and that we both want to be here, together; all of this is somehow less meaningful because we choose not to get married! People tend to see our choice based as bizarre or martyr-ish since they assume we are both heterosexual.

Going to weddings always stirs up these issues for me, even though this is the first wedding we will have attended together since we “officially started dating” whatever the hell that means. I also know that we have at least two weddings to attend next year and so I was frequently bringing up all sorts of marriage and wedding related questions for discussion. Almost every chance I had I asked him if he was ok with our decision, how he thought it impacted us, our friends, our family, even his employment. Very little went unanalyzed…it was even getting a little out of control.

Two days before his co-worker's wedding, I did some research on people who were boycotting marriage until it was legal for everyone and I found the National Marriage Boycott which sells equality rings meant to draw attention to the discrimination of marriage (http://marriageboycott.ning.com/). I suggested that we think about signing the pledge and wearing the rings to do even more to call attention to our viewpoints. We decided to think about it for awhile and discuss it again at later point in time (even though the in-your-face part of me wanted to wear those rings to the wedding and have all sorts of controversial conversations, I promised my partner I wouldn’t do that and it turns out no one asked us about getting married any way.).

Less than a week after the wedding and our continual re-evaluation that we are making the right choice for our relationship, our convictions were put to the test. Dr. E. made it explicitly clear that while he was willing to see me for $150 instead what he charges people with insurance, and while he could put some of my treatments on a sliding scale, I was going to need a lot of meds, a lot of physical therapy and possibly other medical interventions which would be beyond my means to pay for, even if I had a job without insurance. Twice during my visit he suggested that if it was ever going to happen, perhaps my partner and I should consider getting married sooner rather than later. I wanted to be appalled at what he was suggesting, but part of me understood where he was coming from and I always had a medical exemption clause in my refusal to get married, I just assumed that this injustice would be corrected before I was 90 and started having health problems.

As I discussed my problems with my partner, I became increasingly scared that marriage was our best option, even though I felt like I would be using him for his benefits. We discussed how our families would react if we went to city hall the following day. We discussed how we both felt about the looming prospect of getting married and he stammered out that if it weren’t for knowing my viewpoints about marriage, he would have proposed a long time ago. I was flattered and I was stunned. Since we never seriously discussed the prospect of marriage I never knew he felt that way.

The conversation was agonizing and raw because we both felt we needed to do the best we could in this situation, even if it meant that I might feel like a hypocrite for caving on my principles just so my medical needs could be met. We discussed the obvious reality that if I were a man or he were a woman, I would be covered under his hospital’s benefits, but no amount of my partner’s letter writing or talking to HR was going to change the hospital’s rules. They claim it’s Pennsylvania state law.

In the days that followed, we agreed not to make a rash decision and get married right away, but instead to explore all our options. I spent hours looking into charity care options. I called every pharmacy in the area to see how much my meds will cost (you’d be amazed at the differences) and compared those costs to what it would be if I had his insurance. I was trying to approach the marriage issue as some sort of cost-benefit analysis and I’ve never had a business class in my life!

I went to the library to find books on my conditions. There are none. I inadvertently passed by the wedding section and with the kind of car crash on the highway mentality, I looked through some of them. I wanted to vomit my brains out as I fled the library. I had nightmares about becoming a bride…about how I am standing in front of endless rows of white, puffy, stupid dresses and I am sobbing my eyes out in a panic because I don’t want any of them. I don’t want this.

Most of all though, I grappled with the strength of my conviction versus feeling like a hypocrite. And I repeatedly thought back to when my partner told me that he would go to city hall and marry me this weekend. My response was to sob in his arms because the doctor told me we can’t have sex until I’m better.

What the hell kind of honeymoon would it be if we couldn’t have sex?

The Long Drive Home, or, What to Tell My Partner

After my part with Dr. E. was over, and he handed me a packet full of information and several prescriptions, I went with Kris to another room where she went over everything in the packet one piece of paper at a time in an attempt to make sure I understood everything. While I appreciated their efforts, most of this time was lost on me because I was well beyond overload and drowning in a sea of shock. I know I asked her some questions but I can’t recall what I asked or what she said and so much of the day’s events flew out of my head the moment I walked out the door.

I left the office with the bittersweet thought that maybe, this time, someone believed me and was going to help me treat these problems. However, now that a medical expert appears to believe me, and be willing to treat me, I didn’t know what to do with myself. I wasn’t prepared to be believed, as I haven’t been believed so freaking many times before. I was prepared to argue with him and guilt him, if necessary, into removing my ovary by reminding him that he took a Hippocratic oath to do no harm and by leaving my ovary in place, he was, in fact, guilty of doing great and irreparable harm. I never got the chance to deliver that impressive speech though, because he claims to believe me.

I’m still doubtful though. Maybe he will give up on me once he realizes I am too poor to pay for his expertise. Maybe he will say adios when I can’t afford the treatments.

Maybe it really is all in my head. Maybe I gave the wrong answers to his questions, to his probing, to the exams. Maybe I failed the exam. Maybe we could do it over again and I would get the answers right this time and I would be cured. Maybe we could just go back to when it was all in my head.

Somehow even I doubted those delusions of grandeur.

The drive home was in a dangerous haze. All along Route 22 people kept cutting me off, and for one of the first times in my driving life, I didn’t care. I didn’t flip a single person off. That’s a surefire sign something is wrong with me!

I kept replaying bits of the conversations in my head, this diagnosis and that diagnosis but when that made the tears singe my eyes and obscured my vision, I switched my thoughts to marriage and what I would tell my partner. I fantasized about going to city hall sometime that week and never telling anyone that we got married, although I couldn’t figure out how to explain how all my medical costs were suddenly being covered. I tried to imagine my family’s reaction when we announced, before Thanksgiving dinner, that we were in fact going to get married. That we were doing this because I needed to use my partner to get health care coverage and all of you people who don’t support health care reform in this country can kiss my ass and aren’t invited to the wedding! I didn’t think that approach would have good results either. I imagined the nightmare of planning my family’s last wedding and his family’s first wedding and my head throbbed with a new pain.

As I drove past my partner’s office, I fought the urge to text him from the parking lot that he needed to leave work immediately and take me the remaining 4.5 miles home. Instead I kept driving. Kept trying to keep the tears at bay. This was definitely going to violate my strong policy of only crying once or twice a year goddamn it!

Somehow I managed to get myself home, take care of the cat’s needs, pee yet again and get myself situated on our back deck, thinking that the view of the river might soothe me. I managed to bring out a blanket, my new packet of medical information, a glass of water, box of tissues and a box of chocolates (screw the fact that they are on the new banned foods list!) before bursting into tears.

My body shook and shivered. My tears fell and my sobs caused the fisherman, whom I was clearly bothering, to move further downstream so I didn’t scare his fish away. To me it felt like an eternity that I wailed and shook, cried and felt sorry for myself. In reality, it probably only lasted less than a half hour. I’ve never been much on crying, probably because when I was a kid and I cried after a punishment, I was told that if I was going to cry, I’d be given a reason to cry, which of course meant that something much worse was in store for me if I kept it up.

I tried to process all that was said, all that had happened. I tried to figure out what to do, how to go back in time and tell the doctor I made it all up. And then the pain in my side flared up again and sent me doubled over in agony, even as I tried to deny its existence.

I tried to decide what to tell my partner. I imagined him coming home and my saying, “Hey honey, do you want to marry me?” before bursting into a fresh set of tears at how romantic that sounded. I tried to figure out how I was going to pay for all of this and if it was better to mooch off the system or my partner.

A few months ago I qualified for charity care through the hospital where my partner works, thanks to the suggestion of my gynecologist. This benefit covers “medically necessary costs”, for those doctors and services who participate in the system. I later learned that my physical therapy would be covered 100% but my medications, any necessary medical equipment and my visits to Dr. E. would not be covered. If we got married, maybe more of my expenses would be covered. Maybe not, I didn’t know much about his policy.

I thought about getting a job…as if it were that easy right now…and I wondered if I even got a job, if this would be covered or if it would be denied as a pre-existing condition. If I got a job, I would make too much money to qualify for charity care and then I would be stuck either with more bills I couldn’t afford to pay or I would have to forgo care that I needed but couldn’t afford. And, if I got a job it would have to be one where I didn’t have to sit for more than 15 minutes at a time, where I could pee at least once every hour and where I didn’t have to stand for more than, say a half hour at a time in the same place or my pain would be unbearable most days. Exactly what the hell did the qualify me to do in an economy where at least thousands of people, healthier people, could vie for the same job?

Somehow I ran out of tears and managed to text my partner, who happened to be on call all that week, to see if he could get someone to cover his shift for a few hours. He got back to me immediately, saying that his boss would do it and she was fine with him leaving right away.

When he got home I had managed to wipe as much of the snot off my face as I could but it was still obvious to a blind person that I had been crying. He asked me what was wrong and gave me a big hug which only caused me to cry more…something he’s rarely seen me do. I tried to tell him what was wrong, but I couldn’t remember most of it so instead I tried to assure him that although I had a lot of problems, none of them were life threatening, merely quality of life threatening. He was visibly relieved since on the frantic drive home he thought I might have cancer (even if I did, I doubt I would know that after a 3 hour initial office visit.).

I tried, through tears and frustration, snot and stumbled sentences, to relay what had happened. In the end, I thrusted the packet of information into his hands and then got annoyed when he tried reading it instead of comforting me! I didn’t know what to do and he didn’t know what to do and I sure as shit didn’t know what I wanted him to do, so slowly, painfully, we began to discuss our options.

We began to discuss the “m” word.

And the Doctor Says…(Part 2)

Lichen Sclerosis- Dr. E. tells me about this one while my bare thighs are raging in spasm on either side of his face. He even shows me with a mirror where the inflamed and damaged areas are. However, it isn’t until I put my clothes back on and see a picture of another woman’s vulvar region, that I can think of anything other than, “Why the hell do I have moss growing between my thighs? I seem to recall, in high school biology, that lichen are moss, how the hell did they get there?” The term, which I later learn, gets its name from how the abnormal cells look under a microscope. The Lichen Sclerosis is causing inflammation and tissue damage along the inside of my labia majora; those are the fleshy parts between your thighs…like drapes…part of what the pubic hair grows on…they are what you have to move aside to ever get into the vagina. It is also causing inflammation along my perineum and rectum. While holding the mirror, he shows me the bright red streaks all along the inside of my labia, which become an even angrier red as he gently passes a Q-tip over their surface.

I had been idly wondering about those red marks for at least a few years but I assumed it must be due to the natural color variations in women’s vulvas and I never connected it to the god-forsakenly-awful itching sensation I would sometimes (at least monthly) get from my vulva to my anus. I just assumed that was either “in my head”, another yeast infection, from being in a wet bathing suit for too long or from sitting too long, or too much lube or not enough lube, or luck of the draw, or… Turns out it is a treatable, yet incurable disease which is thought to be an autoimmune problem. For some reason, my body is attacking itself and it burns like hell when it flares up.

I am one of the lucky ones though. Even though this disease has been ragging for years (Dr. E. can tell by the scarring), I have lost very little elasticity in my vulva. My skin has not become so taunt that my clitoris is permanently concealed. Very little of my labia majora have disintegrated and the entrance to my vagina is not fused shut. Furthermore, we can begin immediate treatment with a generic ointment, called Clobetasol, one of the first of many prescriptions he hands me.

I should be elated that this will make the itching go away. Instead, I feel like moss grew fat on an erogenous zone and I begin to feel disgusted, yet again, by my own body.

Interstitial Cystitis- This, in addition to the pain in my right ovary otherwise now know as my Ilioinguial muscle, should have been what sent me to the doctor a long, long time ago. Interstitial Cystitis is another treatable, yet incurable disease and since it primarily affects woman, little is known about this disease, even though some people think its first recorded diagnosis was in the late 1800’s! It is currently believed that something causes the bladder lining to thin or wear out which leads to frequent urination, bladder pressure, nerve pain and often, pain upon penetration of the vagina.

Perhaps that is why I all too often feel the fireworks in my brain pain with penetrative sex, as well as a painful, intense pressure, as if something is trying to ram its way through me with a lance. These sensations are often exquisitely painful if my bladder has any urine in it during penetration. Since I can never fully empty my bladder due, in part to the pelvic floor dysfunction, the feeling of being impaled happens entirely too often. And is something I’ve always kept hidden from my partner when we have sex.

The interstitial cystitis diagnosis is where we begin to run into problems. If I had insurance, Dr. E. would immediately start me on Elmiron, the only FDA approved drug thought to help repair the bladder lining by acting as a buffer between the urine and the lining while the bladder heals itself. Even as, or maybe as a result of being, a public health educator, I have little faith in this organization, but I know enough to that any medicine of which there is only one kind, means it is too damn expensive for me! I also have problems taking regular old Benadryl. It either knocks me on my ass in a blissful sleep or does absolutely nothing for me and we need to get my histamine levels down so that my nerves aren’t so inflamed and so I will hopefully be in slightly less pain until we figure out what to do about the prohibitively expensive Elmiron.

Dr. E. thinks Benadryl a) isn’t strong enough for me and all my nasty histamines and b) won’t work until we calm my anxiety down. Fortunately there is a generic anxiety medicine, called Clonezapam, which is affordable without insurance, which should reduce my anxiety. Affordable is a relative term, by the way, especially to someone whose unemployment nets them $900 a month!

I agree that I have anxiety issues, even if I no longer jump up and down on Christmas trees, and do not argue with the medication. By the way, it cost me $16.62 for a month supply.

Vulvadynia- This diagnosis brings me to tears for a number of reasons, not the least of which is that it highlights the depths of my denial about my symptoms. For years I have volunteer at a program called Sex Week which teaches future doctors how to talk to their patients about sex. For two of those years a woman gave a presentation about Vulvadynia.

I distinctly remember watching her come into the room and set a cushion down on her already padded seat before she slowly sat down. I remember watching her gingerly, painstakingly get out of her seat and shuffle, in her shapeless dress, towards the microphone. I remember listening to her divulge intimate details of her life as many med students snored around me. She shared how suddenly intercourse had become painful for her, leaving her with stabbing, shooting pains in her vagina. This eventually turned into a feeling of swelling in her perineum, of razor blades in her vulva when she sat or wiped herself after urinating. On and on she went detailing her symptoms, her life and her endless crass shuffling off of one doctor to the next as no one believed her symptoms.

Her talks seamed to last FOREVER to me as I sat throbbing in my pants, shifting this way and that to take the pressure off my vulva. I desperately tried to keep my underwear from brushing up against anything and, though I would never admit it, I was grateful for a week without sex since I was in New Jersey for this event and my partner was still in Chicago. And yet, with all my shifting and chafing, burning and discomfort, I never, ever heard her symptoms as my very own symptoms. I didn’t need to bring no stinking pillow with me everywhere I went and I could still wear sexy dresses, even if I didn’t, thank you very much! So arrogantly convinced was I that at least I didn’t have vulvadynia, I even scoffed a bit at the women on Dr. E.’s website whose stories I perused the night before my visit.

See what scoffing at people will get you?

It will get you a vulva that becomes so inflamed and enraged that it can be anywhere from mildly irritating to excruciating to have anything rub up against it, including super soft toilet paper. I have had a terrible time buying pants before I ever thought to cut the ridiculously thick crotch seems down and lately underwear, even all soft and innocent looking, non-sexual cotton ones, are becoming my enemy!

Not only do I have vulvadynia, which refers to pain along the lips, both the labia majora and minor (what some people tend to, wrongly, think of as the vagina) I also have the subtype Vulvar Vestibulitis Syndrome. This means that when the nice doctor tried to gently swab the vestibule, or entrance to my vagina (The vagina is inside the body…it’s what gets penetrated sometimes…what a baby’s head rages its way through…its not what is immediately visible between a woman’s legs. What is immediately visible is called the vulva.) I wanted to jump off the table and rip his nuts off because it hurt so fucking much. Guess that’s not normal either! Guess that’s why penetration, before anything even plows into my bladder pressing on my vagina, hurts so fucking much. Guess that is what is so ragefully raw when I sit for more than 10 or 15 minutes at a time.

There are generic ointments for my Vulvadyina and Vulvar Vestibulitis. Although the next day when I go to pick up the Topicort and learn it is $43.68 for a tube about the size of my thumb and the generic Desoximetasone is $30.39 for a tube about twice the size of the Topicort. I want to give up all over again. I will use both medicines three times a day for maybe a month before being switched to something else.

And (I forgot this one until I saw my official report a few days ago)I have Mild to Moderate Irritable Bowel Syndrome- that means I have trouble shitting. This one didn’t make me want to cry since by this point I was feeling like a giant, diseased former woman, I didn’t care how well I could or could not take a crap!

In a huge nutshell, I’m a mess! And I was convinced it was just my lousy ovary!

The one thing I appear to already be doing right, which if I weren’t, Dr. E. would put on my treatment plan, is seeing a counselor. Over the summer I had decided that since I lost my job and, like millions of other people, was having an impossible time finding another one, I would spend this time working on healing from past issues. My gynecologist referred me to a woman who agreed to see me for $20 a week for a two hour session, which is a steal since she usually charges about five times that an hour (I didn’t know this when I called her or I never would have!). So, in theory, my continuing to see my counselor should help alleviate some of my problems.

The other problems we run into since I don’t have health insurance, is the ongoing cost of medicines, which will change often and need to be adjusted regularly according to how I am tolerating, or not tolerating them. The need to use only generic medications which are generally cheaper, even if a non-generic option might work better or result in my having to take fewer medication and the need for physical therapy for both my lower back pain and my pelvic floor dysfunction. There is no way on god’s green earth I can afford to pay for those visits out-of-pocket right now. I tried that approach after I lost my insurance in Chicago. That’s why I stopped going to physical therapy. Dr. E. seems very vexed by this and unconvinced that the Physical Therapists on his team will see me for a reduced fee. He suggests, yet again, that my partner and I get married so that I can be covered by his health insurance.

And The Doctor Says…(Part 1)

However, as the visit progressed beyond the internal exam, I struggled to understand what the doctor was telling me, what the problems are and what the treatment options are. It became increasingly difficult not to break down in heart wrenching sobs of relief and additional pain. On the one hand, I wanted to be believed. I wanted to know that I hadn’t been making all this stuff up for so long. I wanted to know that there are medical and scientific reasons for what is happening to me. Hell, part of me even wanted really fancy names to banter about the next time the pain in my side causes me to double over unexpectedly at the dinner table, just inches away from my food. I wanted to be able to wave banners in the wind proclaiming for all the world to see that I really am in pain, the doctor said so (as if that many people in the world would ever read my banner or care about my pain anyway!).

Yet, most of all, I did not want to feel the way I felt, the ways I still feel, once I got the diagnoses. I wasn’t prepared to feel so vulnerable, so raw and defenseless. I wasn’t prepared to be believed and so I went to my appointment alone. And as soon as the doctor walked in the room and told me I have a lot of issues going on, I wanted to hide in the corner, curled up in a ball, sucking my thumb with my back to the world. I wanted to give up. I wanted my partner to be there with me.

I wanted this to all go away. To go back “in my head” where it really belonged.

When the doctor told me he believed me before he even asked me what was wrong, I wanted to collapse into his arms and heave out the rancid tears of years of being disbelieved. I wanted the snot and the hurt and the relief and concern to flow from me on to him until I was cured. I also wanted to run in the other direction, screaming like a lunatic in denial.

I didn’t know what to do if I was believed, if the pain truly wasn’t all in my head. I wanted my partner to be there, to hold my hand, to make it all better, to take it all away. I wanted it to be a bad dream. I wanted it to be yesterday, when I was only afraid I wouldn’t be believed. I desperately didn’t want it to be today when I was believed.

All those emotions were before the exams and the conversations, before he told me what he thought was wrong. Before he told me how he thought we could fix it and it was most certainly before we discussed the harsh reality that I don’t have health insurance.

When I was finally able to extract my convulsing thighs from the stirrups, get dressed and pee for the third time since I got to the doctor’s office, the evaluation continued in Dr. E.’s office.

This is where he reviewed the bombshells he dropped when I was half naked (a state I prefer to be in when some stranger isn’t peering and poking his way between my thighs!).

While Kris appeared to be taking notes on diagnoses she must have heard dozens of times before, Dr. E. explained each of the following diagnoses (again) to me and three-ish weeks later, I remember about as much as I did when I sat, dumbfounded, in his office.

Apparently I have (which I’ll try to sum up as best I can):

Anxiety- Which while I won’t usually admit it upon pain of death, is true. It isn’t normal to be in such a constant, world hating state of tension and fear.

Chronic Pelvic Pain- The definition of this includes pain anywhere from around the belly button to the middle of the thighs and everything in between that region. Obviously this applies to me. It is also a condition which, due to its broad region, is different for everyone who has it. I have pain from just above my belly button, all throughout my uteral region (I think I just made that term up), my vulvar region, sometimes at the top of my left thigh, in my hamstrings and always in my lower back. Some of it comes and goes. Some of it persists, day after painful day, like a nagging sin I can’t do enough penitence for.

Lower Back Pain- Yup. My lower back as never been the same since I fell down a flight of stairs. But again, I was here about that damn ovary. I’d long ago accepted that my lower back pain was here to stay, at least until I got a job with insurance and could afford some more physical therapy.

Pelvic Floor Muscle Dysfunction- Apparently the muscles in my pelvis are (I think he described it this way) in constant “fight mode” from a whole slew of events and traumatic experiences throughout my life. According to Dr. E., these events are stored as “body memories” and are imprinted in various ways throughout one’s body. Sometimes you can live unaware of these imprints, but as they accumulate and the pain builds, eventually your body reaches a point where it can’t take it (or deny the pain) any more. Apparently I am at that point in my life. This explanation was also applied to my Chronic Pelvic Pain. So, since the muscles in my pelvic floor are in such a state of hyper stress and pain, they are contracted or in spasm, maybe constantly, and that is part of what makes it so fucking difficult to shit or piss or even have sex. Really super tight muscles don’t like to have things pass through them, no matter how vital it is that it happens!

Myofascial Pain- I think that this refers to the specific points on my body which cause various areas, such as my lower back, to go into spasms, but I’m not quite sure yet. I remember nodding my head along to Dr. E’s explanation, but my memory system was on overload a long time ago!

Iliopso and Psoas Spasms- This refers to specific groups of muscles which are in pain. And since the doctor’s office was thoughtful enough to send me home with a bulging packet of information, I can look back and see that these muscles run up and down my lower back (the Psoas muscles)…definitely pain there! And the Ilioinguial muscles run through your lower back, around your stomach (in fact, that is the source of the pain that I thought was my fucking right ovary), into the front of, and down part of each thigh. This would also explain why sometimes, out of nowhere, little demons on plows would tear their way through a small section of my upper left thigh, leaving behind an inexplicable row of centralized pain.

Sexual Pain- Here I’m not sure if Dr. E. is referring to my past horrible sexual experiences or to the pain I sometimes have during masturbation or penetrative sex, or to all of the above. While they ask about sexual abuse and rape on the intake form, he is clearly uncomfortable talking about these issues. In fact, he told me several times that while he needs to know if it happened (these experiences are part of the “body memory imprints”) he doesn’t need to know the details, nor does Kris, who asked me the same questions two hours ago. Both of their reactions to my revelations enrage me and in my head I shout at them, “It’s fucking child abuse! It’s not like asking about it is con-fucking-tagious! So don’t worry, I won’t hurt you with my memories!” But of course, after decades of training, I keep those thoughts inward and smile or something as he prattles on, and I try to give them some credit for at least asking the questions no one else wants to ask.

Eventually I am pretty sure he is talking about the pain I feel when being penetrated by whatever. He tells me that there are many layers to this pain, which, by this point in time, I can figure out for myself. These layers include all that I’ve mentioned above, plus whatever is going on in my head (which he tells me to discuss with my counselor, not with him) and the symptoms below.

I imagine I am nodding along like a puppet by this point. Sure, I understand. It all makes sense. I agree. I comply. I…I...I don’t hear most of what he is saying because I am so nauseous and so freaking overwhelmed, but please, I think to myself, do go on. I know you have other patients to see and I have overstayed my time.

The following additional diagnoses make me want to cry or bury my head in shame.

Finally Seeing the Pelvic Pain Specialist

As trite as it may sound, Wednesday, October 21st 2009 will remain a day that changed my life and I’m still not sure how I feel about that. I was pretty good and pissed off before I ever even saw the doctor. I mean, having to wait almost an hour on uncomfortable chairs when you are already in pain with not much else to distract you but articles about pelvic pain and a giant bloody picture of some gross baby being delivered is not my idea of fun even if I was feeling well! When Kris, the Medical Technician finally came to get me, I did not conceal my annoyance at having to wait so long (something I later regretted doing). She told me, as I was sitting on the equally uncomfortable gyno exam table, that Dr. E. tries to take as much time as each patient needs and sometimes that causes him to run late. Since I was still bitterly convinced he wasn’t going to believe me, this reasoning offered me little consolation.

I was still fuming as Kris and I went over the huge packet of information I filled out prior to my visit. This packet was at least 15 pages long and asked questions about damn near everything in my life, from how often I pee to what I eat, to how satisfied I am with my life, to what kind of pain I was feeling and where and what kinds of recreational drugs I’ve used. It was the most extensive pre-exam paper work I have ever filled out and still I was certain that I was not going to be believed in this place. For Christ’s sake, they deliver babies, what the hell do they know about the pain my childfree body is experiencing? Turns out they know a lot. Too much even.
After Kris finished asking me tons of follow-up questions, she went to get the doctor as I sat, in growing agony, on my horrendously sore bum. As I l waited for the doctor, it occurred to me, in a sad sort of way, how I was determined to see the doctor for the pain in my right ovary and nothing else…not the fierce pain between my legs or my constantly aching lower back or my overactive bladder, and I had no idea why the ridiculously long intake forms even asked about those things.

When the doctor walked in the room, he shook my hand, introduced himself and asked if I preferred to be called Elizabeth or Liz. So far things were going ok. Then, without taking his eyes off my face, he told me that I was safe here and that I was believed, that these things were not in my head. I was stunned. I was relieved. I was terrified and I wanted to get the hell out of the room as fast as I could, because even when a man who looks a hell-of-a lot like Santa Claus tells you that your medical problems are real, it can be a very jarring experience. And, as if being believed before he asked me any questions wasn’t jarring enough, he, with very sad looking eyes, apologized for all the other doctors I saw over the endless years before him and their inability or unwillingness to correctly diagnose me.

I was now more confused than ever! I mean, I guess I was being believed but he hadn’t even examined me yet, and why was he so sad that no one else believed me? I wouldn’t be here if they had!

For the next two and a half hours (yes, you read that correctly, my appointment with him lasted two and a half hours…and that was just the part with HIM!) Doctor E. asked me even more questions about my life and my pain and gave me so much information my head is still reeling, three weeks later. He started with a lengthy differentiation between acute pain (which is immediate and short term) and chronic pain (which is long-term, 3 months or more and generally your body’s way of trying to protect itself from injuries that have ended. In other words, chronic pain shouldn’t be happening but, for a myriad of reasons, it does.). He took pains to make sure I understood what he was saying, which I did until all the other information started flowing, and then began the internal exam.

The internal exam was like nothing I have ever experienced. While there was the uncomfortable gyno table, the crappy paper “blanket” and yourself spread eagle in the ridiculous stirrups, there was no speculum, no “hurry up and get through this” attitude from the doctor and Kris was in the room with me the entire time, taking more notes than I ever took in grad school!

Dr. E. told me he would be talking to me every step of the way and explaining what he would be doing before he did anything. He began the exam with what looked like a toothpick and told me it was a sensitivity test. He touched a variety of places on the inside of my thighs and buttocks, some of which I could feel in ways that made my skin crawl with an itchy, electrical sensation and other places I didn’t feel at all. He then used a Q-tip to examine the inner and outer labia and check my vulva for sensitivity. Again, there were places where he touched me that I could feel and places I could not. What I could feel was a horrendous itching, burning sensation when he touched the Q-tip near the vaginal opening. The entire time he was talking to me, asking me questions about how things felt and almost nothing felt anything less than uncomfortable. Most things felt somewhere between painful and excruciating.

Dr. E. did an abbreviated internal exam which revealed all sorts of pain I thought was normal. Although he was so gentle and slow moving during the entire exam, I couldn’t understand why barely inserting a finger into my vagina made my vulva burn and itch with rage, my vagina recoil and that odd spot he touched inside my vagina throb with pain and a terrific need to urinate. Everything he was doing was a whole lot more gentle than sex or masturbation, so why the fuck did it hurt so much? Why couldn’t I stop my inner thighs from uncontrollably convulsing?

I mean, when I wasn’t deeply entrenched in denial, I could sorta allow myself to think about why these areas would hurt during sex or masturbation but I couldn’t figure out why everything bothered me so much now; especially when he showed me by touching my hand, how gently he was performing my internal exam. I was definitely not having a good time!

Throughout the exam, he tried his best to convince me that all the things I had been feeling, or in some cases, not feeling, were not normal, were causing me harm and are very much worthy of medical attention. While I wanted to believe him, I also really just wanted him to cut out the offending ovary so I could get on with my life. He refused to do that because, despite what other doctors have told me, the pain I came in for was not in my ovary. Hell, your ovaries aren’t even located where I feel the stabbing pain! Who knew? I sure didn’t!

He did agree, based upon what I was telling him, that I probably have endometriosis (which is invisible without surgery) and that was causing some of my pain, but not most of it. At this point I became baffled and angry. I was diagnosed with endometriosis in 2001 and in a peculiar way, this diagnosis had become something to cling to as a source of my pain and problems, even if it never got better with various “treatments.” Now, with Dr. E. telling me that the endometriosis was only a small part, at best, in what was going on, I didn’t know what the hell to do or believe.

After delivering that stunning bit of news, he then proceeded to tell me all sorts of things which challenged my long held beliefs and all-too-often ignored pain. He told me: it isn’t normal to feel as though your rectum is being ripped to shreds when you have a bowel movement. I protested that I only felt that way sometimes…like once or twice a month…but he still said that wasn’t normal and any amount of blood in or near the rectum is BAD. It isn’t normal to be able to feel stabbing, twisting, fireworks in my brain, pain when my vagina is penetrated. Again, I protested that I only felt that way sometimes and in some sexual positions. He still insisted feeling that way sometimes was too often. Apparently it is not normal to have a perineum that is chronically so inflamed and painful that it hurts to sit, wear pants or even some days, underwear, because of the constant feeling of extra coarse sandpaper lacerating its way between my thighs. Nor is it normal to feel as though your perineum is so engorged that you have to heave it off the ground before you can even put your underwear on. I’m being metaphorical here. My perineum never actually dragged on the ground but inexplicably, for days at a time and without obvious warning, it would get so swollen that it felt as it was an extra, protruding appendage. And finally, it is not normal to have to pee an average of 20 times a day, or to have trouble starting your urine flow, or to produce anywhere from a trickle to 3 or 4 ounces of urine each time you pee!

Who knew these things were not normal? I thought most of them were. For even as open-minded as I think I am, I’ve never discussed bowel movements or the swelling of my perineum or my painful bladder with my friends. And after not being believed for so long about the chronic stabbing pain in my right side, I stopped talking about most pain with my family members and any medical personal. Besides, I wasn’t there to discuss those things. I was there to have my ovary removed, even if it wasn’t the cause of all my suffering.

When Dr. E. began pointing out or poking at problems and other sources of pain that had been my companions for so long, I didn’t know what to do. Fortunately shock set in and kept me from sobbing my formerly not believed mind out.

Inexplicable Pain, Part 2

At one point, I was prescribed Lupron which literally made me homicidally crazy. My first indication that something was wrong with me on this medicine should have come about two months after my first shot. It was early December and I was sound asleep, until my Christmas tree in the adjoining room fell over. Instead of reacting like a sane person and either going back to sleep or picking the tree up, I (and I am still embarrassed to admit this) began swearing at the tree, kicking at it with my bare feet, even jumping up and down on the tree!

I swear on my life this is true! At one point I paused for a moment and realized what I was doing hurt my feet, so I stopped just long enough to go back into my bedroom, put on shoes and commence jumping up and down on the tree again. Seriously, this might sound side-splittingly funny, but it is true. My sense of judgment while on Lupron was so skewed that I thought my reaction was perfectly normal and whats more, I couldn’t, I mean, could not stop myself despite the throbbing in my feet and the shards of broken ornaments everywhere. I couldn’t stop myself until I was so exhausted that I simply went back to bed, leaving the shattered tree on the floor until the following day.

Two weeks later, while stuck in traffic on Christmas Day, I literally pounded my head over and over on the steering wheel because I felt so hopeless and out of control, both because of being stuck in traffic and because I couldn’t control my body, my thoughts or my emotions any more. I don’t know if my sister, the only passenger in the car, was more scared for her life or mine.

The final straw for Lupron came about a month later, when, again stuck in traffic, I literally imagined what it would be like to kill the person in front of me. I mean I imagined getting out of my car, getting in to their car, putting my hands around their throat and squeezing the life-force out of them without any remorse…I could even feel in my hands what that would be like! It was one of the most horrible wake-up calls of my life and I had to stop taking the medicine because of the terror of my thoughts and what might happen if I stayed on it.

You may wonder why the hell I kept allowing myself to be a guinea pig to all these medical “treatments” and I often wonder that myself. But the heart of the truth is that even after my surgery and each new medical treatment, I kept feeling worse and worse each month and I just wanted the pain to go away. I just wanted to feel human. Instead I often felt like some grotesque blob that was being controlled by inexplicable bodily pains. I wanted so badly to believe that the next medical thing would cure me, and if it wouldn’t cure me, that at least it would give me some reprieve from the pain and the reassurance that this was not “all in my head."

A few years after the Lupron disaster, (as well as brief attempts to use the Nuva ring, which also didn’t work for me) I moved to Chicago. One of the few blessings to come out of living in Chicago was health insurance and a co-worker who referred me to a primary care doctor who had no idea what the hell was wrong with me. Instead of dismissing my pain, she was compassionate and humane enough to refer me to a new male gynecologist who did take me seriously.

St. Marc (as I will call him for this story) believed in me and in my pain. He also believed in my ability in my late 20’s to know for certain that I never wanted to have children. While he, like every doctor before him, refused to remove my ovaries or uterus, he did prescribe the Mirena IUD. He did this after carefully discussing with me what it was I wanted from my treatment and informing me that while I might like to have my ovaries and/or uterus removed, that likely wasn’t going to solve the problem. The IUD, however, should cause me to no longer have my period, which should quell the pain we believed was caused by the endometriosis (which flared up very month with my periods). Additionally, the Mirena doesn’t contain estrogen, which I cannot tolerate and should last for five years. I wanted that damn IUD more than a child wants to see Santa and a sack load of gifts on Christmas Eve!

In order to get the IUD, St. Marc had to battle his colleagues (I could hear them arguing outside the exam room door) who were adamant that I was too young for this procedure and too young to decide for myself if I did not want to have children. Since the IUD is rarely (at least in that office) given to women who have not had children (in the rare even that it could rupture my uterus and leave me unable to have the kids I don’t want), I had to sign a wavier that I knew what I was doing, knew what the risks were and wanted the IUD anyway.

Finally, on May 17, 2006, at the ripe old age of 29, I had the IUD inserted. That procedure and the following two weeks were far more painful than most of my periods, in part because I was never pregnant so my uterus was rebelling against being stretched out to have this thing inserted into it. There were even times of such agonizing pain that I rolled on the floor in the fetal position waiting for the massive doses of Tylenol to kick in while my partner looked on in helplessness (St. Marc did not prescribe any pain meds since he was falsely convinced that I would not be in that much pain).

However, despite the few weeks of intense pain, that Christmas I received the best gift I’ve had in decades…my last period. This December will mark three years without a period and the longest period of time I have ever been able to use any form of birth control without horrendous side effects. While the IUD and my former gynecologist have been blessings in my life, they were no cure. For a while though, I thought that the worst was behind me.

Then, five months after getting the IUD, (which, in all fairness, sometimes made my lower back feel achy) I fell down a flight of stairs outside our apartment while trying to take the laundry down the rain slicked stairs to the laundry room. I must have blacked out during the fall because when I “came to” I had no idea why I was lying on the cement ground in the rain. And yet, despite my aching everything, I forced myself to get up and start the laundry. Once that was going, I hauled myself up the three flights of stairs and called my mom for advice. Since nothing was broken she told me to ice what hurt and take some pain medicine. I didn’t go to the emergency room until two days later when I got a doctor’s appointment for the persistent pain. My doctor was the one who insisted that I go, despite the fact that the x-rays they took showed nothing abnormal was wrong. From that fall to this day, my lower back has never felt the same, despite plenty of pain killers and a few months of physical therapy.

Sometimes, over the past seemingly endless years, there were periods of respite from the pain, be it my lower back pain, the pain in my right ovary or the pain in my uterus, but always it came back. I don’t really know when the pain returned. In many ways it has always been there in one form or another and eventually the pain spread to other places in my body. However, once I left Chicago, I did not have health insurance, even when I was employed, so again I tried to force myself back into thinking the pain was all in my head.

Within the past year, the pain, in various forms, seems to have returned, usually out of know where…and generally when I am doing nothing more strenuous than standing still. And I cannot recall a time when it seemed to have such sudden onset and intensity. It was really starting to scare the hell out of me.

Even though I am currently unemployed and still do not have health insurance, the pain I am experiencing became so intense and so freaking scary, I finally sought medical help which I would have to pay for out of pocket. My gynecologist, a woman this time, was unable to figure out what was causing me such agony after all my routine medical tests came back “normal”. To her credit, she did not write me off or tell me, yet again, that it was in my head. Instead, she referred me to a Pelvic Pain Specialist, (one of the few in the country) who agreed to see me for hundreds of dollars less than he would normally charge. I took the first available slot and spent the next two months trying to convince myself to cancel this still very expensive appointment, because, you know, it was “all in my head.” But the pain throughout my body was telling that idea to fuck off.

Inexplicable Pain, Part 1

It has been almost a month since I’ve written and it hasn’t been because I don’t have anything to say, but because I am afraid to write what I have to say. Writing things makes things real. At least for me it does, and I have spent the better part of my life trying to believe that the now daily pain I feel is all in my head. And since it was all in my head, I saw no need to blog about it or even get help for it. That is, until the pain got so bad I just needed someone to cut something out of me. I needed someone to permanently remove whatever hideous and hellaciously angry part of me was causing so much pain that merely breathing sometimes exacerbated the problem.

Unfortunately, the doctor I finally went to see will not remove any of my angry organs. That bastard!

Over the course of the past fifteen years I have seen more doctors than I care count, to try and get answers about the stabbing pain on my right side. I remember exactly the day I first felt this pain. The summer before my junior year in high school I was 17 at cross country camp in New York with two of my friends. We were stretching before our run when out of nowhere came this searing pain in my right side. I doubled over in agony and was sent to the nurse who told me that I may have pulled something or maybe it was my appendix, we’d wait and see. While I was at camp the pain eventually subsided and was more or less forgotten about until the next month and the next month and the many, many months after that when it kept returning, always on my right side.

When the pain would return and when it would intensify, so too would the pain of my periods. Now, I don’t ever recall having “easy” periods since I started menstruating at 13, but they certainly became more painful with age, especially in college. It got to the point where I had such intense cramps I would curl up in a ball in bed all day, my tears as useless as the over-the-counter pain meds I tried furtively to numb myself with. Sometimes even without a period, I would get debilitating pain, again, always on my right side, which would come out of nowhere. I remember running through the woods one day in my early 20’s when a pain on my right side so fierce knocked me to the ground without any warning. All I could go was double over on the ground and wait for it to pass.

For over a decade since then, I’ve seen doctor after doctor, most of whom told me it was “in my head” or “the burden of being a woman” or “that’s just what happens when we menstruate” (which ALWAYS was said by a male doctor and left me wondering when the hell the last time he menstruated was!!). The few family members and friends I told about the pain over the years didn’t know what to do or they too told me it was all in my head, part of being a woman, nothing to worry my pretty little head about. Sometimes I believed them. Most times I didn’t but what the hell was I going to do? No one seemed to take me very seriously, especially since the pain would come and go, lessen and worsen, sometimes seem to disappear altogether for months or two at a time, only to return with a vengeance later on.

The doctor I was seeing at the time believed that my periods were the source of my “frustration” and prescribed birth control pills to get everything under control. My first negative experience with birth control pills occurred within the first few months of taking them. I was a freshman in college at the time and I was irregularly sexually active. A mere few months on the pill led to a weird tingling sensation on the left side of my face which appeared out of nowhere during a math exam. The tingling sensation spread down the left side of my face to my upper left arm until that went numb. From there the sensation slowly traveled down my lower left arm and eventually throughout the entire left side of my body to the point where I had trouble using my left hand, speaking, feeling my left foot or even thinking clearly. Finally, scared out of my mind, I had my sorta boyfriend take me to the emergency room. The ancient male doctor who finally saw me, without doing any medical exams, lectured me about how I was having symptoms of a stroke and how stupid could I be to keep taking these pills when they could, literally, kill me. I was too stunned and afraid to tell him why I was really taking these pills, although I did immediately stop taking them.

After that incident, other “more knowledgable” doctors and gynecologists prescribed different types of the pill which weren’t supposed to have the same side effects, and while it is true that I didn’t stay on them long enough to experience stroke-like side effects, I had a variety of other problems which caused me to go off them.

For awhile I relied on condoms, but I had problems with them too. It seemed like most (but not all) of the time when my partner used a condom I would get anything from a mild irritation in my vulva to a full out burning, acidic forest fire inside my vagina, the pain of which could last for a day or two. I discussed this once with my mom (yes, with my mom) and she suggested waiting until I was more aroused to have penetration and if that didn’t work, switching brands of condoms (I’d already tried quite a few and generally they all caused some negative reaction) and if that didn’t work, she suggested trying lube. No one ever suggested that I see a doctor about this (although given my past experiences, I doubt that it would have helped much anyway!). And anyway, condoms didn’t always cause such burning irritation, so when things were fine for awhile, I’d go back to telling myself what I was feeling was all in my head.

Once, while on charity care in New Jersey, (because even though I was working two jobs I didn’t make enough money to afford my own health care and neither job provided part time people with insurance) I sort of got a smattering of answers about my pain which refused to go away. The charity care doctor I saw initially told me that my pain “was part of being a woman” and saw no reason to pursue medical treatment. However when the nursing assistant tried to perform a routine gyn exam, I almost jumped off the table from the pain of her trying to insert the just the tip of her finger into my vagina. I fought back tears as she left the room, presumably to let the doctor know that something had to be done.

Reluctantly the doctor ordered an ultrasound to see what the hell might be wrong with me. He told me it might be an ovarian cyst or endometriosis, though he still seemed to think the tests were a waste of time and taxpayers’ money. Despite feeling that way, he did strongly suggest that if I have endometriosis, I really should consider getting pregnant because that would stop my periods (and presumably my problems) for at least 9 months…longer if I breast feed or had more kids. My highest paying job at the time was $6.50 an hour, never mind the fact that I never, ever want to have kids, and this was what the doctor thought was the best course of action for me?

The ultrasound revealed that I had a cyst on my right ovary (at least that wasn’t in my head!) and Doctor Charity Care begrudgingly consented to giving me a laparoscopy to remove the cyst.

Finally, on September 12, 2001, I had the first surgery of my life. The procedure revealed that the cyst on my right ovary had ruptured prior to surgery so that should not have been the cause of my current pain. It was also discovered that I had endometriosis; which I had suspected and attempted to discuss with the doctor when I first met him and he immediately dismissed. He told me they removed all the endometriosis they could see but since they weren’t expecting to find any in the first place, there was no way to tell, without further surgeries, if anything remained. At any rate, he “assured” me it would likely come back in a few years anyway, as long as I kept getting a period. Again he recommended the “cure” of pregnancy (which I later learned can often make endometriosis even worse!) as a means of “keeping the endometriosis at bay” since there is no cure for it.

Since I refused to get pregnant, this began years of failed treatments, increased pain, several new doctors and an increasing sense on my part that maybe this was really all in my head.

Over the years, when I was somewhat believed, doctors prescribed a plethora of birth control methods aimed at controlling my periods. I was on several types of birth control pills (both regular and progesterone only), even after the disaster I experienced in college because each new gyn “assured” me that this pill would not cause the same, or even similar side-effects. None of the pills worked for me since I appear to be unable to tolerate extra doses of estrogen.

From there I was prescribed “the patch”, which I thought was a miracle, since I had been able to use it longer than any form of birth control pills. That is, until the day I leaned over to pick something up off the floor of the nursing home where I was working and I felt an intense tightness in my chest followed by sharp shooting pains in my chest and down my left arm. Although I had tried to ignore the tightness in my chest that I was increasingly feeling on my drive into work that morning, even I wasn’t foolish enough to ignore these symptoms. My doctor diagnosed these symptoms as warning signs of a heart attack and ordered me to stop using the patch. I was twenty five at the time.