Killing Time: How Endo Almost Destroyed My Life
Endometriosis is a real disease and we do not have to suffer
When I was 11 years old I found an Uncanny X-Men comic book and realized what I wanted to be when I grew up. I wanted to be a mutant. (More practical people have told me that this is the moment when they realized that they wanted to make comic books. This honestly never occurred to me.) Puberty wasn’t that far away and, like the X-Men, I hoped it would reveal some latent mutant power like flight or telepathy.
Three years later I got my first period. The pain was so intense that I thought there was something going horribly wrong. My lower back hurt for days beforehand followed by a stabbing, burning pain deep in my abdomen for the first day of bleeding. My mother was relieved when the bleeding started. We believed this explained the pain. There was nothing wrong. I was healthy. I was a woman now!
So no mutant powers, just an intense, inescapable pain that would make me faint and cry. I resigned myself to working around something that continued to grow over the years. Eventually it was knocking me off my feet for half of every month as I stumbled to work with a hot water bottle stuffed down the front and back of my pants, but I always accepted this as healthy and normal. Every time I saw a new doctor or gynecologist I would ask them about the pain, hoping they had a solution, but I was told it was normal. They put me on birth control pills, which I didn’t mind too much. It did seem to impact my emotions a little, making me slightly sadder and more fearful, but this was a small price to pay in order to get a few days back each month. The pain was still there, but at least now I could anticipate exactly when it would hit and plan my life accordingly.
Then one day in 2002 the pain never stopped. My period left and the pain didn’t. This had never happened so I went to my gynecologist who I’d been seeing for the last 6 years, a very nice nurse practitioner. She explained that I almost certainly had endometriosis.
“Endometriosis is a condition in which tissue similar to the lining of the uterus (the endometrium) is found outside the uterus, most commonly in the pelvic cavity.
It can grow on organs including the ovaries, uterus, bowel and pelvic sidewall, causing inflammation and pain.”
- excerpt from “What is Endometriosis?”, The Guardian, Sept. 27, 2015
At the time I didn’t know what endometriosis was and I didn’t even think to research it, I certainly didn’t know that up to 1 in 10 women have it and aren’t receiving adequate medical treatment. I simply went along with whatever my medical professionals told me. The nurse practitioner referred me to a surgical gynecologist who she said would be able to remove it laparoscopically. If I had been able to do that then, I might be telling a very different story. I met the surgeon and unfortunately he was of the opinion that endometriosis was inoperable. He began months of a damaging regimen of opiates to dull the pain, which did nothing of the sort, but left me incredibly weak and ill. Although still wrestling the pain. (Which was only lessened with the application of external heat — something I now know is another classic symptom of endometriosis). I was vomiting 3 times a day and I was too dazed to realize that this “treatment” was only making me sicker, until I found myself in an emergency room with doctors who thought I had cancer because I was such a wreck.
The doctor told me I wasn’t actually in pain at all. This was all psychological, caused by my own tension.
They immediately took me off of the ineffective pain medication. I changed doctors, hoping to find a solution this time, only to be sagely told once more that I did not require treatment. The new doctor also didn’t believe in endometriosis. She told me I wasn’t actually in pain at all. This was all psychological, caused by my own tension. It was my fault. This explanation would be repeated so often that I believed it, my friends and family believed it, and I felt ashamed of this stupid thing I had done to myself, and apparently could not stop doing. Because the pain wasn’t going away.
Back then I had no way to know that women’s pelvic pain is frequently, routinely ignored. A 2001 study recently cited in the Atlantic showed that women are “more likely to be treated less aggressively in their initial encounters with the health-care system until they ‘prove that they are as sick as male patients,’” the study concludes — a phenomenon referred to in the medical community as “Yentl Syndrome.” If I had known and understood this, perhaps I would have shouted more loudly and demanded that this be taken seriously. It never occurred to me that doctors would ignore someone in pain or assume I was lying. I still don’t understand why anyone would think this, since I was trying to get them to stop giving me pain medication and treat the actual disease.
Finally I found the closest thing I could to a specialist — a gynecological surgeon who specialized in urinary problems. She wasn’t an endometriosis specialist, but I’d already asked everyone I knew and the internet wasn’t what it is now. This was the best I could do at the time. She at least did a laparoscopy to diagnose endometriosis, but like the other doctors before her, she told me that there was “nothing to treat”. She prescribed continuous hormonal birth control which stopped my periods completely and this meant that I now only had to deal with it hurting all the time, not getting much worse once a month. Many doctors believe this is a cure for endometriosis, but at best it can only be sublimated and made dormant by hormonal treatments.
I did every therapy available, including very painful pelvic physiotherapy, a very restrictive diet, frequent acupuncture, Chinese herbs, chiropractic adjustments, yoga, and pilates. I even spoke to a therapist every week for a year in case the problem was imaginary. It wasn’t imaginary, but I was getting pretty upset about the constant, stabbing pain, so at least I could pay someone to listen to me cry about it. None of these treatments were covered by my health insurance. I had to pay for them all myself. Eventually they helped a little and most of them reinforced the idea that I was somehow responsible for my pain, with my tension and tea-drinking, so I went on with my life and tried to ignore it as best as possible, rearranging my life again to accommodate these changes.
Orgasms weren’t as much fun anymore because they caused more pain but I did what I could to mitigate the symptoms. My shame over (supposedly) causing this myself stopped me from talking to people about it anymore or asking for help. It was my own fault, or at least that’s what the world told me and so I kept it to myself. Over the years if I mentioned it, doctors only offered me pain medication, but since my experience in 2002 I now found that those type of drugs made me sick, and I would throw up if I took them, which obviously made the pelvic pain worse. I had no choice but to live with the pain.
For some reason they denied the symptoms of this disease that I saw and experienced in my own body every day.
I eventually learned not to think about it and my newly healthy lifestyle seemed to help. People would ask how I could “do without” caffeine or dairy products or alcohol, but after a while I didn’t have a choice. It was stop them or the pain would balloon to unmanageable proportions again. Each year more foods seemed to join this rank of triggers. I didn’t know this at the time, but food intolerances are another typical symptom of endometriosis and many women talk about this painful bloating that blows our stomachs up to four times the normal size within minutes. None of the doctors I spoke to seemed aware of this. When I told them about it they, explained that it could not be a symptom of endometriosis and that my abdomen wasn’t increasing in response to benign food and my pain wasn’t increasing. For some reason they denied the symptoms of this disease that I saw and experienced in my own body every day. I still cannot imagine what form of medical ethos they embrace, but in retrospect it seems like insanity to me. They would explain that I wasn’t in pain but only thought I was. They said I needed therapy. They explained that I was too tense and needed physiotherapy and then they would treat me as if I were insane. So I stopped telling doctors about this disease.
Twelve years after my initial diagnosis, in 2014, I noticed that the continuous birth control wasn’t really stopping the pain anymore. It still stopped my periods, but more intense pain waves were beginning to interject themselves into my life. My gynecologist was non-plussed and so was my doctor. They repeating the same old stuff about pain and food intolerance not being associated with endometriosis. Thankfully, in the intervening years, the internet had grown and was now filled with information, some of it relevant. I looked online at the options for treating endometriosis myself, and read that hormonal birth control was still considered the go-to option. I found a gynecologist who was interested in trying it. The next six months were a haze of various hormonal birth control which didn’t help. In fact things were getting worse. By early 2015 I was beginning to have trouble walking, driving, and sitting up. My legs were going numb with the pain. I felt like I was being kicked in the pelvis. My gynecologist recommended surgery and referred me to a surgeon. After waiting four months to see the surgeon, he examined me, agreed that I had endometriosis and referred me to another surgeon who also had a three month wait.
One of my friends back in Northern California recommended an endometriosis specialist surgeon, but he didn’t take health insurance and I’d have to travel from Los Angeles to Northern California and stay in a hotel to see him. This all seemed like an excessive fuss to me. At the time I didn’t understand why this inconvenience would be necessary because I didn’t know that the wrong surgeon can make things worse or simply be ineffectual. Now I know that most women endure multiple surgeries at the hands of non-specialists and each time they have to go through a painful surgical recovery only to find that they aren’t better, and finally to be told once again that that they should feel better now and nothing is wrong.
I was deemed no longer trustworthy or honest, but melodramatic and tense.
I set about trying to find a surgeon closer to home, after all I live in a major city filled with doctors, I thought that surely one of them would be able to operate. While I waited to see the next surgeon I’d been referred to I found three more surgeons, all of whom refused to operate on endometriosis. I was told that it was too complicated a surgery, or that they had no experience of endometriosis, and in once case a doctor finally revealed what is at the root of most of these dismissals — money.
She was very honest with me, explaining that she wouldn’t do any more hysterectomies because insurance no longer acknowledges any complications, they simply pay a flat rate for a hysterectomy. In the case of endometriosis the surgery frequently takes hours and it isn’t a cost-effective use of a surgeon’s time. I should add that despite these doctors inability to treat me, and despite filling in 15+ pages of questionnaires for each of them, none of them told me that they wouldn’t treat me beforehand, and all of them insisted on a painful internal examination before revealing that they would not. It seemed extremely unnecessary on top of the existing pain, as I made it very clear to them that even getting to the appointment was a huge physical hurdle.
At this point the pain had escalated and new symptoms were appearing. I was beginning to have trouble sleeping and eating because the pain was so intense. I couldn’t go anywhere because my legs were too numb to walk and now the endometriosis was impacting my digestion much more seriously than the growing lists of foods which made me bloating. Instead I was now having constant diarrhea and stomach aches.
Finally I was so completely broken and confused about what to do that I began to tell people, because I did not want them to think that this dazed, incoherent, weak person was me or anything I considered acceptable. And those people responded by telling me that they knew women with this disease, and that my symptoms were the same as their friends’! It was a real eye-opener and I began to stop feeling as if this was my own fault.
This wasn’t something I was doing wrong, this was something wrong being done to me and millions of other women every day.
One of those people introduced me to his friend with endometriosis. She had only just been diagnosed and was completely unwilling to put up with the pain, she had already scheduled surgery. I was jealous of her. I wanted to feel angry and galvanized, like she did, instead of guilty and weak. She encouraged me to join some online support groups where I finally found out that not only were my symptoms almost identical to many women’s, but so was my lack of treatment. In the decade since I first was diagnosed the world had changed and social networks gave women a voice online. Suddenly this wasn’t a deep dirty secret I had to hide. I wasn’t unique at all. I was, sadly, absolutely normal and this was just how we were all being treated. This wasn’t something I was doing wrong, this was something wrong being done to me and millions of other women every day. I was shocked into action and booked my surgery with the specialist for December 1st of 2015, determined not to enter another year with this disease destroying my life.
I had hoped to gloss over surgery because I don’t want to talk about such a painful experience, even if it did work. More than that, I don’t want strangers thinking about my pelvis too much, this entire piece was depressing to write, but at least it wasn’t much more invasive than the rest of my life has been because of this disease. But now I’m going to have to tell you what successful endometriosis surgery consists of, because a lot of the women who write about this have echoed this myth that there is no effective treatment.
My surgery was successful because I went to a surgeon who is an endometriosis specialist. He’s written books about it. It’s really all he does. This meant that he was familiar enough with endometriosis to detect the tiny imperfections which are sometimes all that endometrial lesion looks like, which most surgeons wouldn’t see or dismiss as “too small to hurt”. There are endometrial blisters and sores and scars, some of them so tiny and just a little pinker than the healthy uterine tissue that it might seem as if they don’t matter. They do. He also practices something called “wide excision”. He doesn’t just remove the endometrial lesion but the area around it which could also be infected. He also removed a number of skin adhesions which had grown between my uterus and my colon, stomach, etc. All of these adhesions were attaching organs which should not be attached and causing pain with every movement. I also had a hysterectomy which should help somewhat, though I kept my ovaries so I still get to experience sore breasts and being a bit cranky for a day or two every month.
The reason I didn’t write about this until now was because I wanted to heal from my experience and my surgery and see if I improved. I did. The pelvic pain went away at about 6 weeks, then my strength and appetite began returning. I began to learn to stand up straight again after a year spent curled up in agony. My digestion is already healthier than it has been in years and I can apparently eat most foods. My energy levels are getting back to normal now too. After over a year of debilitating chronic pain I am weak, but now I can begin to build myself back up. I am on the road to recovery. I know this disease could re-occur because there is no known complete cure, but I’ve been told it is unlikely as this surgeon has a very high success rate. I’m tentatively happy.
I’m re-learning to feel these lovely, subtle sensations again and in the process inhabiting my body more completely than I have in decades.
It is nearly the end of March, almost 4 months since successful surgery and I feel like a new person. No, I don’t. I feel like the old one, a combination of the woman I was in 2002 before this disease became chronic, and the girl I was at 13 before I got my first period and very gradually began to lose my freedoms. I used to overeat because any hunger pain became a gnawing pain which quickly exacerbating my pelvic pain. Similarly I used to pee all the time because if my bladder was full, the pain in my pelvis was irritated. Now I have no pelvic pain at all, and can even forget to eat or pee because it doesn’t hurt. I’m re-learning to feel these lovely, subtle sensations again and in the process inhabiting my body more completely than I have in decades.
I’m one of the lucky ones. Traditionally women earn less than men, and women who inexplicably take sick time off from work certainly don’t get promotions as often. Most women do not have enough money saved up to afford a specialist or they have commitments to family and work which preclude them taking an expensive and difficult trip for surgery. Some women simply don’t have the support of family and friends who helped me through this difficult process when I could no longer function well enough to get to a surgeon.
A few months ago stories about women’s pelvic pain endometriosis suddenly began appearing in major news sources, with stories eerily similar to my own. A friend read one and asked me about it; “These women say their lives have been ruined by this disease, but it didn’t ruin your life, did it?” I understand that question because none of us want to believe that we are letting millions of women suffer for years without reason, insulting them and hurting them by calling them liars about their own pain. But no human can live a free and happy life if their reality is constantly denied. It hurts to have to look back and realize that none of us fought this, that we believed the doctors and not each other.
For most of my adult life I have had to work around the fact that I would be in debilitating pain for one or even two weeks out of every four. Of course I work for myself and have done so for most of my professional life, because working and talking to other people when my body hurt this much was very difficult. And I made sure to save money whenever I could, because I never knew when I’d have pain and be unable to support myself by working. That’s just one way the disease changed my life — professionally I have not had any ambition beyond being able to work. I have been maintaining rather than striving.
On a personal level the effect was much worse because I no longer trusted myself. I might have had children, but once I found out what my periods were like I couldn’t imagine how I’d take care of a baby with that level of pain hitting every few weeks. I believed the doctors who told me that I wasn’t sick and so did everyone else.
What choice did we have? I was deemed no longer trustworthy or honest, but melodramatic and tense. I didn’t know how I felt about anything anymore, I didn’t know what I wanted or what I liked. How do you live when you don’t trust your own senses anymore? When you think your mind and body are lying to you, you learn to ignore pain and cut off from sensation. It is difficult to think of a way in which this disease didn’t negatively impact my life, so yes, I would say that endometriosis ruined my life, at least until now.
My name is Sonia Harris. I am a mutant. And my superpower is surviving.
Edit: a year after my excision surgery I was diagnosed with late stage 3 breast cancer. The oncologist said the hormones I had previously taken to “treat” the endometriosis were a strong contributory factor in my cancer developing. The type of cancer I have is highly estrogen receptive, so the estrogen my surgeon prescribed for a few months after excision surgery to “help the ovaries regain normal function” quickly grew the tumor which then spread into my lymph nodes. Therefore to all of this I have written above about endometriosis and trusting your own perception of your pain, I add the following:
— If you possibly can, please go for annual mammograms, especially if you’re taking any hormonal treatments. My breast tissue was also dense, which makes mammograms less effective and I didn’t know that an ultrasound can also be used to screen for breast cancer. So if you have this issue, please push for more testing if you have any concern at all. It sounds difficult and uncomfortable, I completely understand, but look at the tsunami of crap I’ve had to deal with, you don’t want that do you? (I wrote a little bit about it here.)
Good luck and thank you for taking care of yourself, in whatever ways you are able to.
If you’re interested in learning more about endometriosis, there is a fantastic series of articles up on UK newspaper, the Guardian about it. Start here and follow the suggested links. If you’re curious about treatment, Dr Andrew Cook’s has written a book about endometriosis called “Stop Endometriosis and Pelvic Pain: What Every Woman and Her Doctor Need to Know” and Dr David Redwine’s website is an excellent source of accurate and helpful information.