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.