Kristyn Harder, 25 years old
Kristyn Harder was 13 years old when she got her first period and immediately experienced severe and debilitating pain. She says she was dismissed by doctors as having normal “girl problems.” In college, other symptoms set in, including intense pain in her back, hips and pelvis, daily.
When Harder turned 19, she was rushed to the emergency room with a ruptured cyst. She was referred to a gynecologist and she insisted on surgery. Harder says the gynecologist didn’t believe the ruptured cyst was related in any way to endometriosis, but performed surgery anyway.
“I remember waking up in the hospital bed after my surgery with a note beside me saying, ‘We have excised advanced endometriosis.’ It was like a relief but it was also really sad to hear that. It’s like my worst fear… I didn’t want to have it, but I also wanted to have a reason, an explanation for why I’d been in pain for so long,” says Harder.
Her pain improved for a while, but the endometriosis tissue continued to grow and affect her everyday life. She missed more college and activities, so finally convinced her family doctor to refer her to a specialist.
Harder was referred to Dr. Liane Belland in Calgary and underwent another excision surgery. She says the surgeries helped, but were still a little too late since she’d already experienced so much pain that had spread throughout her body, causing chronic pain and nerve problems.
“My quality of life improved after my last surgery, but as I said before, I deal with the consequences of [endometriosis] and having it for so long and not having it properly excised and dealing with that everyday,” says Harder.
The chronic pain had spread from her pelvic wall into her back, hips and legs. She has stomach issues from all the painkillers she took in an attempt to manage her pain. She has bladder and bowel issues, nerve problems and anxiety, which she credits to the snowball effect of the endometriosis.
Shauna Cox, 34 years old
From the early age of nine when she got her first period, Shauna Cox started experiencing pain, which continued daily, and worsened at night. She underwent severe period cramping causing her to be sick, shooting pains down her right leg, pain after bowel movements and pelvic pain throughout the entire month.
As a teenager, several doctors mentioned the possibility of endometriosis. One did an ultrasound but found nothing, so dismissed the possibility. Others put Cox on birth control as a treatment.
“I saw several doctors, I think especially after the ultrasound didn’t show anything and the fact that they had basically just put me on the pill, they just kind of figured that’s good enough and didn’t really pursue anything after that,” says Cox.
It wasn’t until she and her husband experienced conception difficulties that a fertility expert and gynecologist did a laparoscopy, but the results were inconclusive.
The pain worsened, so Cox convinced the doctor to perform another laparoscopy and at that point, she was diagnosed with endometriosis.
She received ablation surgery, a technique using really high or low temperatures or micro or radio waves to burn the endometriosis lesions, but it was unsuccessful in completely removing the endometriosis. Cox then tracked down her own endometriosis specialist in Calgary, Dr. Chandrew Rajakumar, who performed excision surgery Oct. 26, 2017.
“So he went in and he cut out all the endo. And then my organs were all super glued together. So basically he mentioned the rectum, large and small intestine, uterus, bladder, like everything was glued together because of adhesions with the endo. So he spent four-and-a-half hours mainly separating all my organs and then putting them back where they should be,” says Cox.
Still in a lot of post-surgery pain, Cox has not noticed any relief from her excision surgery.
Tatiana Koszarycz, 29 years old
After getting her period at 12, Tatiana Koszarycz’s endometriosis started with painful cramps, unlike those of her friends. She visited her female doctor with her symptoms and was told it was just what becoming a woman was all about.
Most of her teenage years, Koszarycz would go to doctors with her symptoms, severe pain and heavy bleeding, causing her to miss school and later, university classes. She says every doctor she saw dismissed her.
This trend continued for about 15 years with several doctors, until Koszarycz was 28-years-old and went to a new doctor. Her family has a history of ovarian cancers and her aunt passed away from it when Koszarycz was 11, but she herself had never been checked for symptoms of ovarian cancer.
“So I saw this new doctor and was like, ‘I have a family history of cancer.’ And she was basically like, ‘Holy crap! Nobody’s checked you? Nobody sent you for an ultrasound?’ The last ultrasound I had was when I was 18 and it didn’t show anything. It was actually to look at my uterus… So, I hadn’t had an ultrasound in almost 10 years, so she sent me for one and…immediately I got called back,” says Koszarycz.
The doctor told her she had substantial cysts, eight to nine centimeters in diameter on her ovaries. She was immediately referred to a gynecologist in Edmonton. Without even doing a laparoscopic surgery, the gynecologist said without a doubt that she had advanced Stage 4 endometriosis.
Koszaryzcz was told at that point, the endometriosis had probably rendered her infertile.
She recalls her boyfriend, now fiance, being very supportive of her situation. Koszarycz also says she was fortunate enough to be in a financial situation that allowed her to go through the IVF process, something many women cannot afford.
She has been through one partial round of IVF and an egg retrieval to freeze two of her eggs. Koszarycz has been referred to a surgeon, but has to make the choice of possibly having kids first or never having kids, as she has been told that most of her reproductive organs will probably be removed due to the severity of her endometriosis.
“So, right now I basically have to live my life weighing do I want to have kids versus do I want to live pain free?” she says.
With IVF, there is the possibility Koszarycz will be able to conceive and carry a child, but it isn’t certain. She and her fiance are willing to try with IVF, but understand if it doesn’t work there is more than one way to have a family. She still has not had excision surgery and is currently on medication to control her cyst growth.
Megan Loydl, 31 years old
Megan Loydl had endometriosis symptoms from the time of her first period at 15. At 16, she was put on Depo-Provera, a birth control injection, to stop her periods until she was 18, when she stopped taking it. When Loydl’s periods came back they were extremely painful, causing her to miss a lot of school and work.
It wasn’t until she was 19 that Loydl went to a doctor and was dismissed with ‘normal women problems.’ After the initial appointment, she waited about nine years for an actual diagnosis.
At the age of 28, a cyst ruptured and she was hospitalized for a week. Loydl says it took a week for doctors to even realize she was there with a ruptured cyst. She started seeing a specialist and after six months was sent to Edmonton for more tests because the doctor was unsure where the continuing pain was coming from.
“I was like, ‘Can we maybe look at the female parts? We’ve tested the stomach, everything else, the intestines.’ He’s like, ‘Well yeah ok, I’ll send you to a gyno to see maybe if they have an idea,’” says Loydl.
Loydl says the gynecologist and the specialist wanted to do surgery and were both present for the procedure, as they weren’t sure what they were going to see. The specialist was convinced that her appendix was the cause. After the surgery, it was revealed Loydl had endometriosis, probably Stage 2, something she had never heard of before.
Instead of helping her understand endometriosis, specialists told to go home and do her own research, she says
During the exploratory surgery, some of Loydl’s endometriosis tissue was removed, but not completely, so she wasn’t properly treated. Loydl was also told that another surgery would not be performed until after she had kids. She will most likely have to use IVF treatments to have children.
Ashley Allen, 28 years old
At the age of 11, Ashley Allen’s endometriosis symptoms started with her first period. She recalls being in so much pain as she laid on the floor in the fetal position, while her parents viewed it as becoming a woman.
Allen visited her family doctor shortly after and was prescribed Tricyclen, a combination birth control pill. She was told it would regulate her period and control the pain.
“I remember missing a pill here and there and since I wasn’t sexually active, I didn’t think it was a big deal. However, I found myself in excruciating pain, violently throwing up for six to eight hours, cold and hot sweats and in and out of consciousness,” she says.
Allen’s teenage years were missed because of her endometriosis. When she moved across the country to Alberta she began to really question her treatment.
At the age of 26, Allen was very frustrated with the disease and went to find a female doctor at her college clinic. She begged the nurse practitioner to take her on for pap smears, and was told that the birth control pill she was on put her at six times the risk for a stroke because she had migraines with aura.
Allen insisted on being referred to a gynecologist, but had to wait nine months. She pushed further and was sent to a gynecologist in Edmonton who immediately ordered an MRI and referred her to a partnered gynecologist.
“I got to meet her four months later. She was amazing. I actually cried because she listened. She took it seriously,” says Allen.
She is currently on the waitlist for laparoscopic surgery and to possibly excise the endometriosis, but will wait up to two years.
“By the time I actually get the first surgery, probably not the last, I will be 29 years old. I have waited 18 years for a doctor to take me seriously and diagnose me.”
Elizabeth Driedger, 27 years old
Elizabeth Driedger always had intense pain with her menstrual cycle. As a teenager she would complain of the pain, but thought it was normal. Mid-cycle, she would go to her doctor with complaints of her ovaries and was written off as having low pain tolerance during ovulation.
Around the age of 20, Driedger recalls her pain intensifying and having hormone issues. Her doctors tested her and diagnosed what was likely Polycystic Ovarian Syndrome, even though her symptoms were not typical for the disease. Her ovaries were cystic, but she believed they weren’t the cause for her pain.
“I was checked yearly for these cysts as they would grow and then burst within my cycle or a few cycles. On a routine check when I was 23, an endometrial — blood filled — cyst was found,” says Driedger, adding this finally led to her referral to see an obstetrician for endometriosis exploration.
Her new doctor was aware of endometriosis and its symptoms and had an explorative laparoscopy performed within the first few months after the initial visit. The doctor found Stage 1 endometriosis and cauterized it.
Driedger was put on a continuous birth control pill after the surgery. The pill unfortunately didn’t help, as she bled for a few weeks post surgery which encourages endometriosis growth. The pain returned almost as intensely and she believes her endometriosis is returning, or already has.
Driedger and her husband were told that conceiving children could take up to a year, and decided not to wait much longer. Luckily they were successfully pregnant right away, a blessing to Driedger with her confusing cycle and confirmed endometriosis.
She has two children now, one born in 2015 and the other in 2017. With her first son, she was in labour for three days, but says the pain from her endometriosis was worse.
“I laboured naturally until the very end with him and the pain of the contractions and everything associated with birth was not as painful as my monthly period. I would rather be in labour than have my period. That is how intense the pain can get and I only had Stage 1,” says Driedger.
Editor: Emily Thwaites | firstname.lastname@example.org