What are your endometriosis symptoms like?
My symptoms are constant fatigue, painful cramping, leg and back pain, bad bloating/inflammation, constantly feeling cold all the time, pain when my bladder is full, painful bowel movements, as well as painful sex. I also suffer from extreme pain & bleeding during menstruation which lasts upwards of 1 1/2- 2 weeks at a time that includes nausea, dizziness & severe back, joint, leg, pelvic pain that feels like knives cutting into me.
What was your journey to diagnosis like?
I got my first period at 11 years old, and it felt like I was dying— I had severe stabbing pains, nausea and I was exhausted. Unfortunately, because my family has a history of painful periods it was shrugged off as normal and all I was given were extra strength ibuprofens & told to suck it up. Fast forward to when I was about 15, still suffering I moved to live with my dad and he took me in to see the public health nurse, whom only prescribed me birth control to mask the symptoms— but every time the sugar pills came around I still encountered severe pain. I had mentioned to several nurses numerous times I went in there that I needed help with this but every time I had went in I was met with them not having any recommendations for me or telling me that it was normal. I also mentioned it to the walk-ins and a new family Doctor and was met with the same thing, told I was being dramatic and that the only solution was birth control.
Fast forward to age 18, I quit my birth control as I was having problems with side effects from it by then, the pain comes back in full force— I continue to suffer with it for several years as I’m tired of doctors not listening and afraid they will only offer me birth control again. Fast forward to age 24, the pain becomes unbearable and I go in to a walk in I trust practically begging for help, crying, so he orders me an ultrasound and blood tests. They come back and the doctor says he doesn’t see anything wrong with me, but begrudgingly prescribes me mefenamic acid— it didn’t help. Then I got pregnant, some of the symptoms were masked by the pregnancy hormones— except for constipation, fatigue, painful sex. My doctor I was seeing for the pregnancy insisted that these symptoms were normal— which they may have been but not to these extremes. Multiple times when I went to the obgyn to get checked I had major pain while he’s doing his pelvic exams— I asked him if there could be something wrong and he insisted there was nothing wrong and joked about my pain every time instead of looking for answers.
I give birth to my daughter, and six weeks later I go to see my doctor complaining of pain in different areas and he shrugs me off yet again. Most of my symptoms stayed masked until after breastfeeding a year & 3 months later. Once I’m done breastfeeding all my symptoms come back about 50 times worse— and not just cyclical pain anymore, daily pain as well. I’m bedridden every time I get my period now— but I push on and suffer in silence as I don’t feel I can take anymore doctors acting like I’m crazy. Finally the December after I turned 26 I break down again and go into that same walk in again— he refuses anymore tests and tells me unless I take birth control there are no other solutions— he begrudgingly prescribes me naproxen. Another month of pain goes by and l go back in, this time seeing another doctor— I tell him everything, and tell him the naproxen is not helping. He was concerned and booked me an ultrasound, after which he notices that my uterus is misshapen and asks me a few Endo related questions(do I have painful sex/bowel movements/does it run in the family/etc) and prescribes me tramaset. The ultrasound techs wanted me to come back another 3 months to confirm somethings about my uterine lining but I go in a month & a half begging to get referred sooner, which thankfully he does.
After about a month I get in to see a gynecologist & he prescribes me birth control called lo lo before we think about scheduling a laparoscopy to diagnose which helps some people with endo— but unfortunately only gave me severe pain and bleeding for half a month. So I go back in, and I ask not to be prescribed anything more besides pain meds before we schedule a laparoscopy. He thankfully rushes the laparoscopy with cautery, and 8 weeks after the procedure(which unfortunately didn’t help my pain) I go in and he gives me my endometriosis diagnosis— I have moderate to severe flame shaped and cystic endometriosis all over my uterus, uteral sacral ligament, bladder, ureter, sigmoid, rectum and colon. He said he removes what he could and I require a referral— to which I asked for the only known endo specialist in the province. In the meantime he prescribed me dienogest and medroxyprogesterone acetate to mask symptoms. It’s been 6 months now and I haven’t heard back from the specialist— I hope to hear back soon as I have more symptoms and pain in other places. I was 27 when I finally got my diagnosis, 16 years later…
What has your experience with treatment for endometriosis been?
The only real effective treatment that I’ve heard of is excision surgery via endo specialists— which are unfortunately in very short supply. Birth controls and other hormonal pills unfortunately only mask some of the symptoms. I’ve been prescribed all kinds of pain meds from ibuprofen all the way to toradol and unfortunately I found none of them to be effective in getting rid of the pain, with the opiates unfortunately having nasty side effects that go with them. I received ablation in my laparoscopy which unfortunately is not effective at reducing recurrence rates and I feel made the pain worse for me— it can aid in creating more scar tissue and does not eliminate endometriosis at the “root” like excision.
How does endometriosis affect your day-to-day life?
I am constantly tired and in pain everyday, some days I find it hard to do anything, but because I have a child I force myself to get up— I fear my tiredness impacts my ability to do as much with her in a day. Because of where mine is located I have pain sitting in most positions for too long. I also have pain in my pelvis and back when my bladder is full. I constantly have cramping in my back, legs and pelvis. If I wasn’t on the medication I was on(which I could only be on for 2 years I’m told), I would be bedridden constantly. I had to quit my job of ten years as a hairdresser because the fatigue and pain was getting to be too much to handle while working— I also struggle to have the energy to work on my commissions for clients(I’m also an artist).
How does endometriosis affect your emotional well-being?
Because I am constantly in pain and fatigued (with insomnia unfortunately too) I find myself being more impatient with my friends and family, and also not wanting to go out or do anything with anyone. I am terrified that I have to live the rest of my life like this, I don’t feel like an adequate mother and wife. I am scared that I will lose vital organs like my bladder if I have to wait any longer for surgeries. It is also becoming more and more painful to be intimate, even just with myself.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
Because Of my pain and fatigue I had to quit my job as a hairdresser of ten years. I’m also an artist and I struggle with fulfilling my painting commissions in a timely manner as sometimes I’ll be completely exhausted for weeks at a time. I also feel betrayed by my family who has for years gaslit me and acted like I was being dramatic despite my obvious pain due to the stigma of women’s health in regards to periods
How have you found hope and support in your endometriosis journey?
When I got my diagnosis it was extremely bittersweet— I finally knew it wasn’t all in my head, that I wasn’t crazy. The support groups on Facebook, etc have been helpful in support and ideas for pain/other symptom relief as well.
What do you think healthcare for endometriosis in Canada should look like?
I think that all doctors(and nurses) should be trained more in endometriosis to be able to listen and recognize the signs so people can get diagnosed earlier. There should be more sex education for kids on diseases like endo so kids can recognize the signs earlier as well and there’s less stigma. Also, more doctors need to be trained in excision surgery— there is only one available in my province and she is extremely booked.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
We are not faking it, we are not being dramatic, we are in pain— sometimes extreme pain. It is very common, and it deserves for research and funding.