*Yesterday was my post-surgery check-up for the removal of endometriosis with my gynaecologist, an incredibly busy, gregarious woman. She’s the kind of woman I wish I was; successful, skilled, loves her work and working hard. She helps women, every single day, all day long. Her office is full of pregnant women, new mothers, and women like me with gynaecological issues other doctors can’t seem to solve. In the several hours I was in her office (hours I do not begrudge her; her patient wait list is batshit) I overheard her comfort a woman as she diagnosed her with vulvodynia, reassure a woman in her first trimester of pregnancy (hearing the fetal heartbeat through the walls made me tear up), carefully check the health of several new mothers and discuss my own case with her interns. She works at a teaching hospital so there is always a bevy of medical interns surrounding her, hanging off of her every word and I’m damn grateful they’re getting a good education because if there’s one thing this world needs it’s more sex-positive, warm, friendly, confident and competent obstetrician gynaecologists who love their jobs and their patients.
She checked my surgical incisions which have healed nicely, almost indistinguishable from my regular permanent stretch marks, then went through the surgical report with me. Endometrial lesions were found on both ovaries although clustered mostly on my right, in my abdominal cavity, bowels and rectum. She explained how the endometrial cells, which normally prepare the uterus for pregnancy each month and are usually shed during menstruation, will sometimes migrate through the tiny gap between the fallopian tubes and the ovaries. When these cells migrate they can spread throughout the body, usually centred in the abdominal cavity but endometriosis has been found in all parts of the body, sometimes even the brain. No one is sure why these cells sometimes break away and wreak havoc in the body but they do know that the cells are still governed by the hormones that cause normal menstruation, so that when the body is preparing to menstruate these cells, wherever they might be, adhered and attached to the wrong places, thicken and multiply as they would inside the uterus, causing incredible pain because the bloody buggery things are in the wrong fucking places.
In my case they clung to my GI tract making it impossible for me to sit up, finish a meal, or eat anything without feeling nauseous. It wasn’t unusual for me to throw up four or five times a week for a year and a half. I did lose a lot of weight that I have since packed back on, having gained at least a dress size and probably ten to fifteen pounds since my surgery in early September. That was one of the first things I noticed, I was suddenly hungry after 18 months of not having an appetite, and have been indiscriminately scarfing down anything I feel like. Not the healthiest way to eat but fuck it, after throwing up everything I ingested for a year and a half I will so eat poutine and cake together.
After that long in bed, in chronic pain, I do feel utterly drained. If you’ve seen the Matrix, I feel like Neo must have after they pulled him out of his pod. I want electrostim needles in my muscles which I haven’t used in a long time. I tire very easily and need to lean on someone to walk any distance further than my front door. I have been able to run some errands and can sit upright now for a few hours without a great deal of pain although my abdomen does feel tender and a bit sore. Emotionally I feel flat, like I’ve been robbed of so much time and now that I am recovering I don’t know what to do with myself. I learned that any kind of stress seemed to ratchet up the pain so I learned to avoid reading the news which is always stressful, and now I’m afraid. I skim headlines where once I used to dive into the news. I’m terrified, unreasonably so, that if I start researching and writing about the topics that interest me, that the pain will come back. Clearly I have some developed some psychological issues that I need to deal with.
My doctor told me that sometimes endometriosis reoccurs, usually within two to five years. Sometimes it never comes back. She has me taking Visanne, a non-contraceptive progestin hormonal treatment recently approved in Canada for controlling endometriosis. I have been taking it for about six months and although before the surgery it did nothing to reduce my pain, I haven’t noticed any ill side effects. My doctor’s reason for having me on Visanne is that it will control the hormones that govern menstruation (I haven’t had a period in 70 days), thereby preventing the regrowth of endometriosis. I have had some breakthrough spotting since surgery and with the spotting I have felt pain in my right ovary where the endometriosis was, but nothing unmanageable or as intense pre-surgery. I hope the treatment works as she thinks it will; it is a new drug, my pharmacist had a heck of a time ordering it in for me and had never heard of it until I gave her my scrip.
As for sex feeling like being rammed in the lady parts with a burning baseball bat…I haven’t even attempted it, I’m so afraid of the pain. My sex-friendly OB/GYN told me to start with masturbation, outercourse and see how I feel. I explained to her that whenever I had an orgasm before the surgery it felt like a charley horse in my ovaries. Your uterus does contract during orgasm so that would account for the pain. She told me to be patient with it, start slowly, and if I do experience any kind of pain to go back and see her immediately. Her concern is that I have developed a totally normal psychological aversion to sex because it’s been a not fun, agonizing exercise in excruciating physical pain. I feel like the worst thing that having endometriosis has done to me is to take away pleasure. I don’t drink, I don’t smoke, I don’t do drugs, I don’t (normally) eat poutine and cake, it seems outrageously unfair that my body would decide I also don’t have sex and make me celibate against my will. Feeling asexual, unlovable, and undesirable for so long has done a disastrous tap dance on my self-esteem. As a sexual abuse/assault survivor, I have worked fucking hard all of my adult life to have a healthy outlook on sex and to enjoy it for the sweaty fun it is and to have that taken away from me has left me very angry.
My OB/GYN told me that if I was experiencing issues she would refer me to a sex therapist, which I thought was amazingly enlightened of her, and I might take her up on it because I’ve never seen one and as an abuse survivor, I think it’s probably a good idea for me to explore that. I think the abuse and the chronic pain have been twisted around inside my brain and I need professional help unraveling the knots.
It’s difficult to convey to someone who hasn’t experienced it the damage chronic pain inflicts. It’s an exhausting way to exist. Every day, every movement, every small motion is an uphill battle. The fatigue of fighting the pain is overwhelming, it’s like your entire personality is subsumed by suffering, all that’s left of you is the barest semblance of who you were before, every ounce of your self given over to agony. The isolation, the loneliness, the solitude of sickness is like a secret you can’t share with anyone except another sufferer, with whom you can only spare the briefest contact because they too are lost in their own world of affliction.
I didn’t expect surgery to be the magic bullet that solved all of my problems but I don’t think I expected to be left with this lingering dullness, this formless space where my life used to be. I’m so sick of feeling sorry for myself and angry at all the time I’ve lost. I am grateful that it was only the year and a half and not the average decade most women face before they even get a diagnosis. I feel like a malevolent force robbed me of my life and I don’t have the energy to chase them down and wrest it back from them. While the debilitating pain I endured every day is gone the effects of it are not and I have a lot of work ahead of me to rebuild my life.
For anyone facing endometriosis, please know you are not alone. Try not to let the usual dismissive “it’s just endometriosis” or “endometriosis is normal” or “endometriosis is common” comments dissuade you from getting treatment or help or support. Yes it is common. Not, it’s not “just” endometriosis. 5.5 million women in North America have endometriosis and it’s one of the top three causes of infertility in women. The pain associated with this disorder is real, debilitating and disabling. It can be a struggle to get a diagnosis and to find medical support and a treatment plan that helps. It can be exhausting to self-advocate in the face of indifference. You deserve a better life. A pain-free life. A full life. Don’t let the bastards grind you down.
*this piece of art came from the blog Spork Fight: Fighting Like a Girl, one woman’s courageous account of her journey with endometriosis.