What are your endometriosis symptoms like?
List of symptoms: – ovary pain (sharp, throbbing, stabbing pain, sometimes feel a lot of pressure) – lower back pain (hot, burning, tingling, achy pain that sometimes makes me nauseous) – pelvic pain (achy, sometimes sharp pain all around the hips) – pain in lower back and pelvis can sometimes travel down my leg making my leg feel weak/tingly, in some cases I feel like my leg will collapse under me – lower abdomen pain (not like cramps, just pain all across, usually occurs when I also have pelvic pain) – trouble walking when pelvic pain is really bad – insomnia because pain makes it hard to get comfortable at night – GI symptoms (gas, bloating, diarrhea, occasional constipation) – trouble breathing through the pain – get fatigued easily, pain gets worse when doing physical labour (cleaning, laundry, intense exercise) – difficulty initiating urine stream, and incomplete emptying of bladder – stiffness and tightness in abdomen, hips and legs
What was your journey to diagnosis like?
I was diagnosed with PCOS in 2017 and immediately put on birth control. Prior to my PCOS diagnosis, the only symptom I had were cramps. My cramps were the worst in high school and early university. I remember feeling nauseous and not being able to sit/stand comfortably. Even lying down wasn’t comfortable all the time. I had trouble swallowing pills, so a lot of the times I just suffered without taking pain medication. I was on birth control until November of 2018 when I finally quit to see if the pill was affecting my mood (did not see a drastic change being off the pill). May of 2019 was when I first felt ovary pain. It was a sharp, stabbing pain that lasted less than 30 seconds and I didn’t think much of it at first. Over the next month the pain became more intense and frequent, alternating left and right ovary (sometimes both), and I eventually also started to experience lower back pain (sometimes on its own, usually also with ovary pain). I went to my family doctor first who suggested I go back on birth control (that it was probably my PCOS acting up again). I asked for an ultrasound, which ended up showing nothing besides the cysts from my PCOS. I started the same birth control I was on before in August of 2019. The pain seemed a bit less intense and less frequent the first month, but the third week of September I had a week of really bad lower back and ovary pain. I remember coming home from work on the Wednesday of that week and crying because I just wanted the pain to stop so I could rest. I ended up calling my family doctor again. This time she suggested a bladder and renal ultrasound and also sent a referral to my Gynecologist. When I went back to see my doctor after the ultrasound, I found out I had a kidney stone. Also at this time, I switched to a new birth control because my pain was obviously not going away (and I was also feeling depressed again). My doctor said that if the kidney stone started to bother me then we could do something about it, but it might pass on its own. It did pass on its own in December of 2019, and in January I decided to stop taking my new birth control because the spotting was annoying me. The night before my period started, I felt intense lower back pain (hot, tingly, pulsing pain) that ran down my leg and made me feel like my leg was going to collapse under me. The pain was still there in the morning, and later in the afternoon I got my period. The pain lasted a total of 2-3 days before stopping. When I finally went to see my obgyn in March, she said that my ovaries were just bulky and pushing against my back and causing lower back pain. She said I didn’t need to go back on birth control because I was still getting periods and that if the pain got worse I should come see her again. The week after, I had a similar experience the night before I got my period as I had in January. The next few months the pain would come and go. It was the early months of COVID and I honestly don’t remember anything too significant happening when it came to the pain. But in August of 2020, I had a really bad flare up before my period that made it difficult for me to breathe and walk. I went back to see my Gynecologists in September, who put me back on birth control and told me to see her in three months. The birth control did not help. My pain became more intense and frequent. Before, I had really bad pain maybe 3-5 days a month, with some lower level pain through the mouth. After birth control, I was in pain for probably 3 weeks each month. The last week of September was really bad again, and I tried to go in to see my Gynecologists but was told I had to wait the 3 months. I decided to see a physiotherapist instead in October. Meanwhile the pain got worse and worse, and while my PT did give me exercises to help with the stiffness and pain in my lower back and pelvis, it did not help much. November of 2020 I had almost 2 weeks of very little/no pain, but then it got worse again. December 2020 I had daily ovary pain and pelvic pain, and by the time I went to see my Gynecologists I was exhausted. She suggested I stop the birth control I was on and switch to Visanne, and also recommended another ultrasound. The ultrasound again showed nothing wrong, and while I tried to get a transvaginal ultrasound, it was too painful. She diagnosed me with myofascial tension and also gave me gabapentin for the pain. The first week taking both Visanne and gabapentin was incredible. I felt like what I imagined I must have felt like before the pain ever started bothering me. But then it quickly came back. I was in pain more than I was not, with occasional days of no pain/light pain. I also started crying multiple times a day, sometimes for no reason. Speaking to my pharmacist, she recommended I stop taking gabapentin, which did stop the daily crying. My physiotherapist was concerned and brought up endometriosis multiple times, suggesting I bring it up with my Gynecologists. My Gynecologists had mentioned a laparoscopy in September if the birth control didn’t help, but did not bring it up in December when I went to see her. But in March, during my follow-up, I finally asked for it. I have not been given a date for the surgery yet, but in the meantime I was given a referral to a pain clinic. My Gynecologists however mentioned twice during my follow-up that 50% of the time she doesn’t find anything when she does a laparoscopy, which makes me feel like she thinks I don’t have endometriosis. I honestly don’t know what else this could be, so I’m really hoping that I can have surgery soon and finally get an answer.
What has your experience with treatment for endometriosis been?
Birth control just doesn’t seem to work for me, or it makes the symptoms even worse. I am currently taking Visanne and it has done nothing for my pain. My Gynecologists did suggest that I go off the pill and see if the pain goes away, or if it gets worse then that means the Visanne is doing something. I have not done that yet because I’m worried about the pain getting worse and having to deal with that on top of school. Physio has not been too much help. I do still use the exercises I was recommended to help with stiffness, and use the belly breathing exercises especially when I am stressed and in pain. Just got a referral to a pain clinic, though it is an hour away from where I live. I do not know how this will work for me, especially if I need to go frequently and/or need to bring someone with me. The wait times for the pain clinics in my hometown are 1-2 years, which is shocking to me. People should not have to wait that long to get care, especially when living with chronic pain. A part of me also feels like my Gynecologists doesn’t believe it’s endometriosis and that’s why she’s been hesitant about the surgery. She told me that while she is worried about the pain, she’s more worried about the emotional toll this has taken on me, which is fair, but I would not be experiencing all of these emotions if I wasn’t in pain in the first place.
How does endometriosis affect your day-to-day life?
I wish I could lie in a ball on the floor. I have thought about dropping out of nursing school multiple times (especially this past semester). There are days that I just don’t feel happy or hopeful, and thinking about how exhausted I feel walking to class, or doing chores around the house makes me upset. I miss being able to do those things without feeling pain or being exhausted. I can no longer do Pilates like I used to. I now do yoga because it is less intense and I’m scared doing Pilates will make the pain worse. Sometimes even yoga makes the pain worse. I have trouble sleeping at night because of anxiety and pain. I’m constantly thinking about how I’m supposed to study while in pain, and what I’m going to do once placements for nursing school start. My family does not take my pain seriously. I’ve been yelled at for taking medication, and told that the medication I’m taking is making me crazy. I feel alone especially because of COVID and I do not have anyone who can be here for me in person.
How does endometriosis affect your emotional well-being?
Insomnia because of anxiety over what tomorrow will be like with my pain and just not being able to get comfortable because of the pain. Waking up constantly throughout the night because of pain. While I no longer cry everyday, I still cry most days of the week. It is especially hard when I’m just trying to walk to class and the pain is so bad that I feel nauseous and tired from walking. Pretty sure I have anxiety and depression, though I think I had it before the pain started, it has just gotten worse.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
I started wondering summer of 2020 whether it was even a good idea for me to go back to school. And since school has started, I’ve wanted to drop out so many times because my university does not care or accommodate anyone who has invisible disabilities. The amount of work we’ve been given despite having online classes and having to self-teach during a pandemic hasn’t helped. I think about the future and wonder if I’ll even be able to work? What if my pain gets so bad that I can’t work. My home environment isn’t safe and I want to be able to move out and live on my own, but I’m scared I won’t be able to provide or take care of myself. I also think about further education after nursing and wonder if that’ll even be possible with this pain. I don’t have plans to get married or start a family.
How have you found hope and support in your endometriosis journey?
Online friends. I have a couple close friends who I can confide in when I’m in pain and not doing well mentally. It has been hard though because I’ve come to realize there are some people who I can’t talk to about my pain, mostly because they don’t know how to respond and don’t seem to care about how I am doing. Family has not been there for me, which makes it super hard since I’m stuck at home all the time because of COVID. My nursing program advisor was nice and did talk to me about accommodations for placement and when I have surgery, however the workload still makes it super difficult for me to enjoy my classes.
What do you think healthcare for endometriosis in Canada should look like?
I wish there were more endometriosis specialists. While I think my Gynecologists is knowledgeable enough, I think having an endo clinic that can specifically treat this disease would be nice. Shorter wait times for surgeries and pain clinics, and just people who listen and take you seriously.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
Endometriosis is invisible. I’m pretty sure if someone looked at me, they would not be able to tell I am in pain. I hide it well because I don’t have a choice. I need to go to school and work, I need to do things around the house, and I can’t just lie in a ball on the floor and cry all day. It is daily/almost daily chronic pain and it is exhausting.