Two years ago I awoke in a sweat-sheen usually reserved for disturbed film protagonists, my eyes dilating against the night air, crying out in gurgling disbelief. Something abdominal, in the territory beside my groin, felt as though it had cracked open like an egg against the rim of a glass bowl. As my girlfriend burst painkillers from their blister pack and wrapped a hot water bottle in a towel, I began to agony-vomit. Surely if the splitting feeling worsened I would pass out. Was I experiencing hospital-worthy pain? How could people give birth if contractions were more excruciating than this?
At the time I was in deep suburbia with no car and no ambulance coverage, so I decided I would take the strongest painkillers we had and if, after fifteen minutes, I was still sweating from a splitting abdomen, we would phone a friend. I started falling asleep on the toilet, so the acuteness must have eased. My girlfriend cleaned up, changed my pajamas, and acted as a crutch to help me back to bed.
The following week, an ache radiated from one side of my groin at exactly the point my hips hinged to sit. I invented a pain management regimen wherein I rotated painkiller brands until my stomach or liver — who knows — began to burn when I popped a pill. The ache, which I accommodated at work by sitting in a hammock shape with my feet on my desk, began to interfere with my ability to think about anything else. My girlfriend appealed. She hypothesized something might be infected and I should see a doctor before my blood was poisoned. She didn’t want me to die of stubbornness, in bed beside her.
If my mother had been a lawyer or a salesperson, I might have visited the one doctor I booked an appointment with, taken antibiotics for chlamydia, and ended up with whichever specialist was in Emergency on the day I was finally wheeled in. But my mother is a midwife. She begged me to drive to her house across the state border, booked me an ultrasound involving a probe wrapped in a plastic bag, and organized an appointment with one of her co-workers, an obstetrician-gynecologist. They chatted about a baby they’d delivered the night before while I tugged my underpants off and hoisted myself onto a bed. The specialist placed a sheet over my groin with the businesslike flick of a waiter setting a tablecloth. She snapped on a latex glove, lubricated her hand, and announced I had cysts on my ovaries. One was so large she could feel it. It had bent my fallopian tube, like a branch holding an orange.
There was a possibility the cysts were symptomatic of a chronic disease called endometriosis, but she couldn’t be sure – the only way endometriosis is diagnosed is by sight. I would need a kind of keyhole surgery, a laparoscopy. She put me on a waiting list, clicking her tongue at whatever daunted her in my ultrasounds. Did I experience bad period pain? she asked. “Yes. Always,” my mother said.
Our reproductive organs have a neat one-way system: ovaries make eggs and send them down the fallopian tubes, where our uterus receives the eggs and more often than not bleeds the eggs out. I think of endometriosis as a uterus gone rogue; instead of simply receiving and disposing of eggs, the uterus decides it wants to send things via the fallopian tubes, too. But because ovaries don’t have the capacity to receive anything, the uterus posts the only junky gift it’s got — uterine wall cells — up the fallopian tube. When the ovaries can’t accept those cells, they flow out into the abdominal cavity, where everything is showered in Essence of Uterus, like confetti at a wedding. Cells might land on the outside of the ovaries; they might end up attaching to the bladder, or the pouch of space behind the uterus, or the bowel. Once they have landed, they begin to mimic the cells inside the uterus: each month, when it comes time to menstruate, the dispersed uterine wall cells bleed like cuts into the abdominal cavity, where the blood lingers and forms cysts.
In truth, this is only a theory; nobody knows with certainty how endometriosis works. Nobody knows what causes it, either. There are only ideas: stress, genetics, perhaps a hormonal imbalance. A woman of shamanic inclinations once told me it’s a product of an unidentified childhood trauma I need to reconcile. A friend who also has endometriosis told me it’s caused by eating sugar. If you are between the ages of 25 and 40 and you have a uterus, you are statistically more likely to have endometriosis than die in a car accident or find yourself audited by the tax department. In Australia, it is more likely you will have endometriosis in your lifetime than breast cancer; in America, the UK, and Canada, the likelihoods are almost on par with each other. It takes, on average, ten years to diagnose endometriosis from the point symptoms begin to emerge. I am the average. There is no known cure.
I remember my mother standing at the end of my recovery bed in hospital and tearing up over my diagnosis, while the woman beside me announced to nobody that she felt she had possibly overdosed on self-administered morphine. My mother wept with guilt and sadness and relief at the confirmation I had not been a hysterical teenager — that my pubescent periods were accurately depicted every time I had turned papery, vomited, and bartered with the god of the ceiling above our bath to accept acts of kindness in exchange for eliminating my pain.
It was only my gynecologist and me sitting in her office after the laparoscopy, when she explained what my diagnosis meant. She shook her head at postcards she had taken of my red and bloodied insides. She despaired aloud at the state of my disease — out of four stages of advancement, I was sitting at a late stage three. You are so young, she kept saying. My abdominal area was coated with lesions and part of an ovary had to be removed. Penetrative sex might be painful. If the condition appeared on my bowel I might have to consider a colostomy bag. My fertility was compromised. I was so young!
The only way I could slow the development of the disease was to halt my periods using hormonal contraception. Alternatively, she offered, I could periodically inject a drug that would put me into early menopause, or I could have a hysterectomy, or if I could still fall pregnant, I should consider doing so because sometimes pregnancy cured people — plus, free baby.
I was so young.
My treatment options were endless and amazing and I pretended to pick one, but actually I picked none of them. During our consultation I thought about my gynecologist. Before arriving in Australia she had birthed one of her children in a refugee camp. She endlessly delivered infants and performed surgeries and delivered devastating diagnoses, and I was one of hundreds of patients under her care. Could I reasonably be sad in this appointment? Had I suffered? I had universal health care.
The doctor snapped on another disposable glove and gave the stitches knotted into my healing abdominal scars a firm, removing tug. Something in that quick, final procedure stirred a tremor in my diaphragm. I smiled as she handed me two pamphlets explaining endometriosis. I thanked her profusely, and remained bright and sensible while I paid for the consultation. I was fine! I would walk to a nearby mall and buy something really luscious, like an end of financial year t-shirt.
The department store I found myself in was fluorescent. Midday shoppers murmured past: new mothers, high schoolers on their lunch break, older couples who had travelled from sparser towns in the country to buy a vacuum or outfits for their grandchild’s wedding. In the world outside my doctor’s office, endometriosis seemed both unreal and unknown. I had never sounded the word “endometriosis” until two months before I was diagnosed, and that alone made me doubt the disease was remotely terrible. Also, I decided as I strolled the pallid bowels of the department store, “endometriosis” was practically a fake word. It was Parseltongue. I could say it to snakes and they would slither about and do things for me.
I slipped past prowling perfume vendors and filed myself between two parallel racks littered with young adult-wear. An assistant at a distant counter folded the crumpled changing room rejects. She glanced at my arrival in her otherwise deserted section. The imperative language of Sara Bareilles’ “Brave” throbbed over us.
I browsed absently, rubbing material between my fingers, and picked out a pair of black, waist-high jeans. I turned them on their hanger, held them against myself, and returned them, placing my spare hand over my abdomen and gently pressing the area. After a month of recovery, I was still too sore to sausage-skin into anything fitting. I slid my hand beneath the hem of my singlet and ran my fingers over a small knot of skin near my left hip, across to an asterisk over my bladder, and then up to the center of my belly button — shallower than it had been a few weeks earlier, with a hard lump pronounced at its surprised little mouth. It was a triangular constellation, marking out the memory of keyhole incisions where long instruments had purveyed and then erased endometrial damage with incisions and burns. Each lump smarted beneath the salt of my hand and I recalled the spasm that had surged beneath my lungs as the gynecologist tugged out my stitches.
Patiently, politely, I had participated in months of reckless, hopeful subservience: of lying down while doctors tested and palpated and examined and queried, but never wholly explained their method — or my disease. It had been like watching slabs of ice slip past on a waking river. And now the tremor resurged and the river swelled to meet me. I began to shiver with anger at the prospect of decades of reckless and hopeful subservience: altering the course of my life by having a child, or going mad with medication, or spending my time sitting through support group meetings and specialist appointments for a barely believable disease.
A week earlier my mother had called to ask about the ongoing pain of my recently discovered disease. At first my response had been tinged with surprise: “I have none!” I said, which was a lie. I rationalized that any tenderness was probably surgical bruising.
Eventually my mother’s conviction that I was experiencing eternal, withering pain tugged anger from me. “I have none,” I bit, sitting on her couch with a cup of tea the night before I reentered the gynecologist’s office. It was as though being gentle toward her worry might séance the chronic discomfort she believed I had into existence.
If the department store sales assistant had peered across the floor at her only midday customer the next day, she would have caught exactly the moment I thrust my entire body into the sales rack, grasping garments at either end of the display, my mouth wide and silent. I hugged clothes that would eventually sail off into the lives of strangers, and sobbed while Sara Bareilles wanted me to be brave. There were no words, no pamphlets to explain this strange emotional country of which I was so terrified.
This is really great, I’m always impressed when people manage to write beautifully about experiences of (physical, emotional) pain.
I’m so glad more women are writing about endometriosis. My aunt has it (had it? Maybe having babies cured her, I don’t know), and my mum told me about it when I was a child – though she didn’t tell me the name. We talk about pregnancies and childbirth a lot in my family, so I always knew that my aunt had problems with fertility because she had a condition that meant tissue from her uterus grew elsewhere. It was always kind of shrugged off, along with the funny story that by the time she got an appointment with a specialist about her fertility, she had a baby in her arms.
Now people are actually talking about it, I’m starting to realise what she went through.
ohhh my goodness
I faint from periods regularly (Plus, anemia, so it’s not a good situation for anyone), painkillers don’t work, but my mother doesn’t want me to get checked out by an OBGYN because I’m not sexually active. Anyways, she says that pregnancy is the only cure, and that hers were worse but she dealt with it.
I’m an 18 year old Catholic celibate lesbian, babies aren’t exactly in my immediate future, so I finally put my foot down and made the appointment, to her horror.
This piece is exactly what I need right now. Thank you.
I’m so sorry your mother didn’t want you to get checked out. You don’t wait until you’re sexually active to go to the gyno! I’d always learned you started going when a) you became sexually active, b) you turned 18, or c) you have some other apparent medical reason to go.
Good luck with your appointment.
Your vagina is not less important because it hasn’t had a penis in it, and your uterus doesn’t lose relevance by not having grown a baby. I hate this idea that women’s healthcare revolves around fertility and PIV sex.
^^^ This times 1,000
So much.
Oh gosh I’m so glad you made an appointment. Fainting from periods is not normal and I’m sure there are treatment options that don’t involve responsibility for another human’s life. Plus, there are a lot of things that can go right or wrong or slightly askew in your reproductive bits whether or not you have had sex! It’s just a good idea to start doing yearly. Toasthugs to you, I hope it goes well.
I am so,so,so hugely GLAD to hear you are being phenomenally brave and organising a way to seek a diagnosis and solutions. You are not alone,and the most important thing to remember is to persevere unapologetically until you have an answer: seek out however many professional opinions,groups,and discussion panels online until you feel satisfied. You do not have to be sorry or ashamed about wanting more information – and that is something that has taken me two years to learn! Thanks for reading!
re: the 10 year average to diagnose
I got “lucky” with my endometriosis diagnosis. “Lucky” because it was discovered during an emergency surgery to correct a twisted ovary. It was caught early and now I’m on bc to keep it from spreading (and to prevent any new cysts – which is what caused my ovary to twist). My periods have always been v painful – to the point that I’d need to miss work but not the point the author describes. Thank god for birth control and my access to it!
This is phenomenal. I was diagnosed just about two years ago, and while mine wasn’t as severe and it’s somewhat controlled now (hooray for Mirena!), “somewhat controlled” still means I’m in pain most days, and living with the knowledge that I may already be infertile before my husband and I even start trying to conceive. I’m convinced that if I hadn’t known about my mom’s history of endo, I still wouldn’t be diagnosed – my OB/GYN’s first suggestion was that I just needed to lose weight.
Anyway, thank you so much for writing this! More talking about endo is a great thing.
The way fatphobia detrimentally affects the provision of health care makes me so angry. So angry.
Wow, so you found that Mirena worked? The pill drove me into obsessive anxiety and depression, so I’m both intrigued by and terrified of the IUD party as an alternative…
The hormone dose is much much smaller and localized in the mirena v the pill
Just saw this (somehow didn’t get an email notification). I went off the ring bc of mental health issues and went to the copper IUD to get away from them. Turns out the copper IUD is great for a lot of things, but not for people with endo, since it makes periods heavier and longer on its own. But at that point, I was still undiagnosed, so I thought all that was just IUD side effects and not my endo. The Mirena has made my periods basically nonexistent, though I still have pain basically throughout my cycle. I don’t think it’s made my mental health stuff worse. Like the other commenter said, the dose is very small and localized.
Thank you for this. I have a whole host of problems caused by endometriosis and am trying to come to terms with the fact that I will soon lose my entire reproductive system, ovaries included, as the endometriosis has invaded them too. No one understands what that means until I snap that the equivalent procedure on a man would be removing his testicles. I get so angry that I have to explain what is happening to me in terms of how it would affect a man. It frustrates me that this is a condition that affects such a high percentage of the world’s population and one knows anything about it BUT we have figured out the science of giving a 90 year old man a boner (yes, I know, viagra’s effect on impotency was discovered as a side effect of something else, I DON’T CARE).
I have an amazing gynecologist, and she actually was my gynecologist from when I was quite young when my problems weren’t so bad. But years of moves and no insurance and bad insurance left me with really inadequate health care for a very long term, with the pain I experienced getting worse every month it seemed. When I had health care, I would tell whatever gynecologist I was seeing at the time about the terrible, excruciating pain my periods caused me – I was starting to miss work because of it, and s/he would invariably tell me “yup, pain is to be expected; take some Motrin.” When I finally was in the right geographic location and had the right insurance to go back to my earlier gynecologist, I made an appointment ASAP not to talk about the pain (because by then I had accepted it as a part of life) but to get an IUD. It was when she was doing the ultrasounds for the IUD that she caught a condition that could only be caused by severe endometriosis (she couldn’t diagnose the endometriosis itself – that requires a laparoscopy) and was like, “hey, do your periods hurt?” Um, yeah. I still can’t believe (I mean, yes I can) that it took me more than a decade for someone to take my pain seriously. (Also, for this reason I am #teamIUD – I feel like I know so many people who had serious medical conditions discovered when getting their IUD.)
Two of my close friends had hysterectomies before age 30 due to endometriosis. What they had to go through makes me furious. It is bullshit that surgery is necessary to definitively diagnose endometriosis. It is bullshit that women are misdiagnosed and suffer for years, leading to further damage. It is bullshit that the treatment options are surgery, narcotics, and major surgery with the loss of fertility. IT IS BULLSHIT.
I was 28 when I had to have a hysterctomy due to endometriosis and it was only diagnosed as even being that once the surgery had happened
I didn’t get an ultrasound when I got an IUD! Dang. (I do not have endometriosis.)
I don’t have endometriosis, but I do have a condition that condemns me to ‘reckless and hopeful subservience’. Thank you Rosanna for naming what that feels like, and thank you Toast for covering women’s health issues in a way that makes our experiences crystal clear.
I have terrible period pain that caused me to miss school alot when I was young, and it’s remained pretty bad as I’ve gotten into my 30s. I asked my gyno about endometriosis a few years ago, and she said, and I quote ‘You may have it, but there’s no way to tell unless we do surgery. And most insurance won’t pay for the surgery unless we’re REALLY sure you have it.” And when I asked what REALLY SURE meant, she hemmed and hawed, then told me to stop wiggling so much in the stirrups.
I haven’t asked again.
Ugh, that’s unacceptable. I hope you can find the care that you need and get some real answers.
Get a new gyno!
Surely there are better gynos out there than one who can’t answer that question and who disregards the fact that you are in excruciating pain each month.
Where do you live? If Canada, this is also untrue. My surgery cost me $2.
Oh my god! Whenever you feel ready, I would encourage you to ask again! Ask again and again and again until you think your health is understood and you have options to consider! She didn’t explain what constitutes REALLY SURE because the concept of ‘really sure’ hinges (in my case) on how much pain I was showing I felt, and how pressing I was to want to know what was happening. It was only when I was in unavoidable cystic pain that doctors did anything. That’s not okay! So if you feel up to it, go in and explain that you want her to do something about what’s happening for you. Or find another OBGYN that can offer you options. I hope your pain is becoming a little more manageable. It’s so lovely to read your comment, thank you for sharing, and good luck!
I have endometriosis too (well, just one of my many other health problems, it has a high comorbidity of 2 or more conditions) and appreciate the rareness of someone talking about this awful and awkwardly life changing condition. Beautifully written, thank you.
Rosanna this is gut-wrenching, as it should be.
My endometriosis was subdued via birth control in my mid-teens, and the two babies in my 20s helped, but everything got worse and worse as I aged, so by 40 I had a hysterectomy. And it’s always such vague care – “oh, yes, some women get lots of cysts” “oh, yes, some women bleed every day for months at a time” “oh, yes”
After a painful (GAH) transvaginal ultrasound yesterday I’m awaiting the word from my doctor that my left ovary, at least, has to go, because the partial hysterectomy was not the cure-all it was predicted to be. “oh, yes, some women have to go back and have a complete hysterectomy”
Exactly this. It’s so tough! I’ve even heard that for ‘some women’ full hysterectomies don’t solve the chronic pain. Isn’t it ridiculous? That they can only lead us down treatment paths that have an unknown percentage of success? And it’s not the specialist’s fault! What else can they offer us? I hope they develop a better picture of endometriosis soon. Thank you for reading!
I feel less alone. Thank you, Toast and Toastariat.
I went off birth control in September (after ten + years – my entire sexually active life) because I thought the hormones were contributing to my anxiety and my partner and I thought, oh, we’ll go back to condoms and when we’re ready to have a baby we’ll be ready to go! I have had a period every 40-70 days since then and all but two have been excruciating to the point of crippling me. Last month I threw up over and over again from the pain while my partner tried to talk me into going to the hospital.
It took months to get me into an ob-gyn (I was insistent enough about my pain that I did see a nurse practitioner in the same practice but all she could do was give me a pelvic exam, inform me everything seemed normal, and prescribe prescription strength ibuprofen). I just had my ultrasound and follow-up appointment with my new ob-gyn. Nothing visible but almost certainly early endometriosis. Since my only pain is during menstruation I have decided to go back on HBC. When I’m actually ready to try conceiving I’ll have the diagnostic surgery which will also clean out the endometrial damage.
Reading this, and everyone’s comments, makes me feel less alone, and so grateful. I am grateful that my doctor didn’t suggest pregnancy as a cure even though she knows a planned pregnancy is in my plan within the next few years; grateful that my doctor took my pain seriously after it was dismissed when I was a teenager and again when I had seen a nurse practitioner in the same clinic; grateful that I have the health insurance to cover a transvaginal ultrasound; grateful for a job where I could take a sick day once a month and not have it questioned; grateful for a supportive partner; grateful that HBC is a good option for me; grateful that a medical professional took me seriously before this got worse; grateful I was presented with options and empowered to choose from them.
We serve to make each other less alone. Thank you for reading, and it sounds like you have pretty excellent doctor. <3<3<3
This is so beautifully written, and so important. Thank you for sharing it with us.
My mother has two sisters. One aunt never had issues with her reproductive system. One aunt had incredibly painful recurring ovarian cysts and had a hysterectomy when I was in middle school. My mom had endometriosis and had a hysterectomy when I was in high school. I’ve never had painful periods or problems with cysts…but I’m still young. And I’m not sure that the odds are in my favor. So I wait. And I am grateful for stories like this and the people who share them, because it means if (when?) I start to see the signs, I’ll know what’s happening, and I’ll have words for my pain, and I’ll have their footsteps to follow in.
“My mother wept with guilt and sadness and relief at the confirmation I had not been a hysterical teenager …”
I have PCOS, not endometriosis, but my mom also had that moment of “WAIT so you weren’t just being an awful teenager? Something was really wrong?” moment of relief/guilt. I think she still has it, when she looks at pictures of me when I was 16 and looked like the ghost of a vampire.* I was so anemic. The picture I’m thinking of was taken around day 80 of bleeding without a break.
It was 12 years between the time I started having PCOS symptoms and the time I got a doctor to take me seriously. And I still think she only took me seriously because I was married by then and considering having a kid, which is tough to do if you never know when your cycles are going to happen. She was the 11th doctor I’d seen.
It makes me want to destroy something, how easy people find it to ignore women’s and girls’ pain. Thank you for writing this.
*I know that’s not even a thing, except for a bit in the last season of Angel.
OH P.S. Polycystic ovarian syndrome is super common — like, 10%-ish of women common, and if you’re prone to highly irregular periods and a few other things you should ask your doctor about it. Sometimes it’s co-morbid with endometriosis, too.
If I sound like a WebMD article it’s because 12 YEARS AND 11 DOCTORS is too long to wait for a diagnosis of such a common thing, and I’m considering graffiti-ing bathroom stalls with “WOMEN’S HEALTH ISN’T NICHE AND YOU SHOULD FIRE YOUR DOCTOR IF THEY TREAT YOU LIKE YOU ARE CRAZY.”
http://www.glamour.com/story/endometriosis-and-po…
“It makes me want to destroy something, how easy people find it to ignore women’s and girls’ pain.”
^^^THIS
I spent the other day at the ER. I left feeling somehow guilty that they were able to rule out anything serious going on because oh man, I just wasted their time on something that wasn’t real. Because when you can name a thing and doctors start barking orders, it’s real. When you’re just randomly dizzy and tingly, that’s just hysterical female territory.
I am sorry that you went through your infuriating gyno experience. Best wishes for your health going forward.
I was lucky. I was officially diagnosed with endometriosis at nineteen, after four years of symptoms. I had periods lasting two weeks at a time, bleeding so heavily I had to set multiple alarms overnight so I could change my pad and tampon combination, cramping so debilitating that all I could do was lie in bed in the foetal position for five days straight, dizziness and nausea. I had to drop out of high school in part because I missed a week of school out of every four, and you can’t make that amount of work up. My doctors tried me on two formulations of contraceptive pill, and when that didn’t help I had a laparoscopy.
But I was lucky.
Lucky because it took four years, not ten, or longer. Lucky because they caught it early, when the lesions were still superficial and hadn’t invaded into the deeper tissues. Lucky that I had doctors who listened, who told me “that isn’t normal.”
I shouldn’t have had to be “lucky” to be treated like a person who had a legitimate problem. Because that’s what I was, after all.
“Also, I decided as I strolled the pallid bowels of the department store, “endometriosis” was practically a fake word. It was Parseltongue. I could say it to snakes and they would slither about and do things for me.”
Your words are crafted so beautifully to capture more than just your experience with pain and diagnosis. Thank you so much for sharing.
Harry Potter: the ultimate reference to explain most things. Right? Thank you for reading!
We all know the ‘classic’ symptoms of a heart attack. We all know what breast cancer is. We all know what erectile dysfunction is. But almost know one, apart from the women effected,, know about endometriosis. WHYYYYYYY. Even doctors who specialize in ‘womens health’ don’t know about it half the time.
I’ve been really lucky with my uterus related health, yeah periods were kinda shitty but HBC sorted that shit out and I won’t be giving it up any time soon. I only learned about these kinds of conditions in the last few years, and I really grateful to The Toast for bringing these stories, about the conditions and also womens experiences around them, into the light. I hope that I can bring this knowledge with me and stand up for any women in my life who need support with, or don’t know about, these kinds of problems. If anyone needs someone to kick in their doctors door and insist they get help I am here!
ARGH. When I was 26 or so I started to go from having heavy periods, to having insane nightmare periods where everything happened all at once. I would soak through heavy duty tampons, pads, etc. It was a nightmare. I’d be sitting in a meeting and just…feel everything slip. I frequently overflowed the diva cup, etc.
Two separate doctors told me I couldn’t have an IUD, before my normal sane doctor was like, what? Are you kidding me. That was 2 more years of misery.
Having a period…you know they only put the placebo in the pill to deal with various perceptions of how it might “seem unnatural” instead. And I feel so angry that not having a period is not explained as a right. There’s all this implication it might be dangerous, but when I think about what I went through, and people with endometriosis and how it might have slowed progression of these issues, if I didn’t have periods from 14 to 29, and I just waited until after I had babies. It might ahve also changed how many fucking hormonal migranes I had. Just to know it’s a choice, that you do not HAVE to have a period…. man. That’s all I want. I want the choice to be offered instead of begged out of people after you suffer so much you have to do research.
Btw, not having a period feels like what it must feel like to be a man, to be completely able to go swimming whenever, wear whatever, not pack extra supplies…its changed my life.
I really, really don’t want to have endometriosis. But I might. 🙁 It’s horrible to hope that my cysts and crappy periods are ‘just’ PCOS. My cyst is acting up lately and it’s horrible (so much ow), I want this thing out but insurance won’t cover it until it hits a certain size. It’s keeping me from doing things now but whatevs it doesn’t hit their metrics for size so I get advil and hotpads. RAGE.
I really, really, really can’t believe that your insurance doesn’t cover a cyst until it’s big enough: like, I CAN believe it because you’re saying it, but it’s totally atrocious that severity is being marked by size, not pain. I am so sorry you’re going through this. I guess I hope it gets bigger? But I don’t! I hope your pain eases. Or, move to Canada somehow and become Canadian somehow? It’s pretty close by, right?
The recommendation to have a baby as a “cure” is reckless advice, as it does not take into consideration the likelihood of then falling victim to endometriosis’ sister condition: adenomyosis.
Previously known as endometriosis interna, adenomyosis grows the lining in the uterine wall and then sheds clumps of uterus muscle each menstral cycle as it dispels the unwanted lining. From personal experience, it is not fun and is every bit as awful painwise as what Rosie describes.
Trauma to the uterus -especially from having children- is one of the medically stated major risk factors in developing adenomyosis in adult women.
I see that nothing much has changed over the years with respect to diagnosis and treatment of endometriosis. Endometriosis ate my appendix. No lie. Since I am 54, I would have thought SOMETHING would have gotten better for women with endometriosis over these many years….Sadly, I see, not.
Endometriosis is such a hard thing to deal with. I am so glad to see others post about it. I was diagnosed last year and had the laparoscopic procedure done . It helped at first and here I am 10 months later feeling the same pain and discomfort over again. I visited my doctor today and yet the same options are available,laparoscopic surgery,menopausal medicine,or birth control. Part of me wants to have the procedure done again. But who’s to say it won’t come back again? I am too young for the miserable menopause stage. The birth control has always been my least fave idea of fixing the problem. It’s hard enough to think about not being fertile. I know that some say birth control can increase your chances of getting pregnant once you stop taking it but there’s still aomething inside me that can’t grasp the feeling of taking a contraceptive that temporarily stops you from having kids. This disorder takes a tole on you,from getting stressed out,not being able to participate in regular day to day activities.. It’s all so much. Funniest thing about it,most people don’t believe us .. They think we are just over exaggerating. I’ll be praying for everyone like us. Someday they will find a real cure for us
I suffered from this and had to have a hystrectamy at 28 – they only properly diagnosed it afterwards. It was bitter sweet having the op put an end to 2 years of utter pain and hell – but also meant I lost any chance of having children of my own – however I’m always the optimist rightly or wrongly and went onto adop a sibling group of 3 girls my beautiful daughters. Might be wrong in saying now looking back its probably the best thing that happened to me in a perverse way but I wouldn’t have had the privalege of the 3 beautiful daughters I have now – I just keep saying to myself it was meant to be – but at the time obviously it was a different story!!! – This condition really needs to be highlighted so much more and women made aware as even so many years on (Im 44 now) – so many women seem to be unaware of it. It really doesn’t get the publicity it should
I felt like i was reading a real novel, not because it was lengthy but because you articulated each scene so nicely.
my sister was diagnosed with endo a few years ago, she lives in america. her story was absolutely horrific, as the health care over there and hospitals are flooded with people coming in and out, she was just a number they wanted to quickly count and then be done with. her pain was like yours, she said she felt like she was going to die.
i never understood the disease until your blog post so thank you for making that clear to me! i seriously hope they find some cure. she said when she eats healthy the pain is reduced massively, she also had key hole surgery. but the pain does still exist.
Hi, I completely understand your plight. I had uterine cancer in 1995. Complete hysterectomy, then radiation that caused bladder cancer I had twenty years later. Feel free to read my experiences.
Thank you! I appreciate your comment. I know what you described is definitely the norm and I am heartened by the fact that I've never had painful periods. But then, my mom actually didn't either, as a young woman; her dysmenorrhoea developed entirely later in life (and I wonder now if that also was one of the reasons her endometriosis took so long to diagnose, because it didn't manifest early—she herself, an RN, didn't think that's what it could be for quite a while). My logical brain knows that I'm probably in the clear. But my animal brain sees patterns and omens and pain, so it's an uneasy feeling to sit with all the same.
Thank you so much for writing this. Because of this piece, I now have a tentative endometriosis diagnosis and a treatment plan (Mirena as a first step).
I read this the first day of my period, just as the pain was returning – the terrible new pain that has come with my period the past four months. It is worse than anything but labor, and I’ve terrified my children by screaming while trying to go to the bathroom. I read this and sighed “oh.” (Then I yelped “OW!” and alarmed my colleagues.) And then I called my doctor. We talked about the new pain, and my decades of heavy periods, but also the random, severe abdominal pain I’ve had since age 12. I’m 37. As a teenager I had a dozen tests of my digestive system, cameras up and down, prolonged x-rays, claustrophobia-inducing MRIs. Nothing was wrong. The pain didn’t go away, but since it was labeled “psychosomatic,” I learned to ignore it. When I finally went to a gynecologist, at 18, I didn’t mention it – I didn’t want yet another doctor to see me as a hypochondriac. Perhaps because I was so used to ignoring the pain, I didn’t think too much about the fact that it decreased once I went on the pill.
From reading this article and all the comments I know that things might get worse for me, but I’m so relieved to know what is happening. I’m sad that I spent so long thinking the pain was my fault, I’m sad my parents had to see me in pain and couldn’t help me, I’m so sad that so many of you have endured this and much worse. But I’m grateful to have found an awesome ob/gyn, grateful (massive understatement) that I was able to have children when I wanted to, grateful to Rosanna for writing this beautiful piece, grateful to the Toast for being the best, as always.
Thank you for writing this! I, too suffer from endometriosis. I had my Fallopian tubes removed after a seven centimeter cyst burst a few years back. Then came Sciatica and this treatment, that treatment etc. Your post was beautifully written, and I just wanted to let you know…I feel your pain! Thank you for sharing your experiences!
I have had three endometriosis surgeries, as the implants often grow back. Please consider a myomectomy (removal of the implant) either by laparoscopy of more invasive surgery. You will have a considerable scar, but many of the problems (especially anemia) will be reduced. You may also consider short-term steroid therapy. Not fun. The myomas shrink, which might allow surgery to go more easily.
I was able to get pregnant. Not the first time, but eventually, at age 40. You might be able to keep some of your reproductive organs, if you choose.