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what it feels like

endometriosis: what it feels like

'you should be believed when you say you’re in pain.'

by emma jones

mar 18 2021

14 minute read

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samantha lyster is much more open about her diagnosis than she once was. supplied

when samantha lyster was just a teenager a gynecologist dismissed her frequent abdominal pain as just constipation and told her to eat more vegetables. thankfully, her mom suspected something else was wrong and after years of research and specialist appointments they finally had an answer: endometriosis .

in endometriosis, deposits of tissue that lines the uterus, called the endometrium, is also found in other areas of the body (most commonly in the pelvic area). this tissue may behave similarly to the endometrium inside the uterus, in that it will become thicker throughout the monthly menstruation cycle before shedding the extra tissue and blood that has developed. unlike the endometrium in the uterus, however, this tissue doesn’t have an easy way to leave the body.

the presence of this tissue outside of the uterus can cause inflammation, cysts, and scarring — all of which can be very painful.

having juggled difficult treatments while also adapting to university life, lyster is passionate about raising awareness for endometriosis so no one feels alone in this process.

this interview has been edited for length and clarity

what led you to being diagnosed with this condition?

i started to get really, really painful periods when i was 11 and it was just getting progressively more painful. when you’re that age, you’re learning about your periods in school or from your mom, you know? all the girls are whispering about it in the hallways and it’s kind of one of those accepted facts that you’re going to have cramps and you’re going to be in a lot of pain and that’s normal. so, it took a long time for me to really feel that my pain wasn’t normal and that i could say something about it.

at that point i went to my mom and we went to my family doctor and he just suggested to go on the birth control pill. i was 15 years old, it kind of just made sense to do that and so i went on it and i had a lot of luck with it. my pain was a lot more manageable; i was able to go back to sports, i was able to go to school, i wasn’t having all the issues. that lasted for about two years and then the same type of pattern started again where it was, each month, just more and more pain. it was mostly during my period, but it was also happening in between periods and that was the most frustrating part. like, two weeks out of the month that i was in a lot of pain.

that’s when i went back to my family doctor, and i said, something’s not right. is there another pill you can give me? can we change something up? i would get an ultrasound done, they would find a cyst here and there, send me for a follow up. i was just kind of having a whole bunch of tests. i had an mri done. they at the time said they saw nothing out of the ordinary. at that point my family doctor referred me to a local gynecologist. i have to say that was probably the turning point for me, going to this gynecologist. i did not have a good experience with them at all.

i’m going in there as a 16 year old girl with my mom. she refused to examine me. she looked at me and in 30 seconds just said, you need to eat more fiber, this is not an issue that i can solve. you’re just constipated. and my mom was there and she was just floored. i was an athlete all throughout high school; my mom was cooking for us and i’m eating whole grains and fruits and vegetables and all these things.

at that point i was just defeated. my family doctor was great, but he knew that his knowledge was limited here. so we kind of took matters into our own hands. my mom did a whole lot of research and found my current specialist at mount sinai who was just starting up his clinic at the time. within five minutes of my consultation appointment with him he was like i can 99.9 per cent say that you have endometriosis.

my mri had shown adenomyosis, which often goes hand in hand with endometriosis. in adenomyosis, instead of the tissue being outside of the uterine wall, it’s actually within the muscle portion of the uterus. it causes pretty similar symptoms, it’s just more contained to the uterine muscle on the wall. adenomyosis and endometriosis very often go together; you frequently see them together. the difference is that you can see adenomyosis occasionally in imaging like mri, where you can’t usually see endometriosis at all. so, my specialist felt pretty strongly that endometriosis was the reason that i’m feeling the pain. the reason that i was struggling so much and that it was getting worse, he said, was [because of the] wearing off effect of the hormonal therapies.

being in his care changed the course of how i felt even about myself. there’s that stigma and that shame: i’m being dramatic. this pain isn’t real. no, they can’t find anything. there’s nothing on these tests. no one understands. i must be weak. i must not be able to handle this properly. it’s one of those things that just kind of gets to you and wears on you. i’m very fortunate to have the support from my family that i do, but even at that my mom was taking off work to take me to all these appointments. you just kind of feel the that you’re being a burden.

that must have been an incredibly difficult experience to have – especially when you’re so young.

exactly. it just horrified me; i was just in tears because, again, i’m being dismissed by someone. saying that i just am constipated, as if i didn’t know what that means or i don’t know what that feels like.

i was lucky that my mom was able to do the research, she was educated on the industry. she understood how to navigate that process. but not everybody has an advocate like that. it shouldn’t be a special circumstance that you have an advocate that can help you or somebody that can point you in the right direction. you should be believed when you say you’re in pain.

even just to talk about your body at that age is difficult.

oh, exactly. a lot of times symptoms start at a very critical point in a young girl’s life. you go into the doctor with your mom and they ask you “is your sex painful?” it’s totally one of those things that you don’t want to talk about. not at all. how do you navigate all of this while you’re going through puberty and you’re doing all of these things? it’s really hard, especially at that time, to be not believed.

that’s a really key point with endo that some women don’t get diagnosed for quite a long time and so they suffer for a really long time before even hearing the name of their condition.

the most relief i think i felt was just having a name to validate what i was experiencing. but going through it at that time in your life in your development is like an extra layer. you’re growing up and you’re having a caregiver advocate for you or you’re learning how to advocate for yourself. and not having the support of the system to do that is really hard.

is there a treatment for endometriosis?

when i started getting treated it was all hormonal therapies that were kind of being used for endometriosis, but that’s not what they’re for. like birth control, the idea is that the tissue then won’t really respond because you’re keeping that hormone system under control.

honestly, a lot of my story was really just bad adverse reactions to medications, which was very frustrating. it’s trial and error the whole time. you’re dealing with a hormone system that totally impacts everything. i was getting hot flashes, nausea like morning sickness, acne, depression, anxiety. it’s just everything that you could have impacted by that hormone system.

when i first had started with the specialist, he laid out buckets and options for me. he said the first option was the birth control pill. number two on that list was more progesterone based treatments. number three on that list was medically induced menopause to shut down the hormone system altogether. number four was surgery. i had already done the birth control pill, so we tried a progesterone based treatment to see if i responded a little bit better to that, but i had just not the best reaction to it so we eventually progressed to medically induced menopause.

the timeline here is, for the first semester of my first year at university i was trialing a birth control medication but i ended up having a period for three months out of a four month semester. i was totally anemic by the end of it, i was not doing well. i was struggling to adapt to life away from home at university, away from doctors who knew me, dealing with the healthcare system between doctors at my university and at home, specialists, the whole thing. when i came home for christmas, that’s when we decided that things weren’t working, we needed to do this menopause treatments. i was in induced menopause for my whole second semester of my first year of university.

what was it like going through such a serious procedure while you away at university?

it was really tough times. i would say that was that was bottom of my treatment. it’s a really harsh medication that totally just changes your body. the idea is that you don’t get a period, so how can you be in pain from a period if you don’t get one? and also, the idea is that if 100 per cent i did not have any more pain than they can guarantee that when they go in and do surgery, they’re going to find that it’s endometriosis. menopause can actually help to shrink the endometriosis because of hormone signals being shut down.

they had recommended that i take the semester off of school, and that was really tough for me at the time because i’m 18 trying to stay at school with my friends. i didn’t want to miss out because i was sick. but i was meeting new friends at university and when do you fit in a conversation that i’m in menopause? how do you explain this to someone without having to go into a whole spiel? do you do that with your professors?

[when i got the injection to start the menopause] i wasn’t able to eat solid food for two weeks. that was over christmas, i missed out on christmas that year just drinking juices because there’s a spike of the worst morning sickness you could ever have. then i went back to university like that in january. i had insomnia, i wasn’t sleeping, i had memory loss. it’s a hell of a time to take exams and try to learn all these courses for university when you’re having trouble remembering the simplest of things. i remember i was at the bank and i was trying to create a password for my online banking. between the new password and confirm password line, i forgot it five times over before i got a piece of paper to write it down.

it all really took a toll; i was really feeling beaten down and i was anxious and depressed. that that was really, really tough. i did two of those injections just to last me until i could get home, and then less than a week after i finished my last exam i had my surgery.

did the medication that induced menopause help with the pain?

yeah, totally. i didn’t have any pain. it was the side effects that were fairly unbearable. the hot flashes, the nausea, the night sweats, the insomnia, everything. but i was eighteen and i didn’t understand it. no one understood it; there was no one really in my circle i could turn to.

even in between my specialist appointments, i would see my family doctor and he didn’t even know how to give me that injection. he had to read the whole instruction manual in the box. i didn’t know what the next week of side effects was going to be. i had no idea how i was going to manage. it was really tough. everything was very unknown; i just felt so alone. i felt like i couldn’t share with anyone.

mentally, how did you cope with all of these symptoms?

a lot of it was just really hard for me to even work through. it’s hard to distinguish what i’m feeling versus what the medications were doing to me. like, was i feeling anxious because i am anxious and i do have anxiety? or was i feeling that because that’s listed as the second most common side effects of the medication? same thing with that memory loss part; am i losing my mind? am i forgetting things?

i didn’t have anybody who could understand it. i went to the student accessibility center at the university and i spoke with one of the counselors there just to make sure that i’m wasn’t going to fall behind in my program. they did their best to help me and they ultimately really did help me, but they didn’t understand. it’s hard to understand how an 18 year old can be in menopause by choice.

it felt a lot of the time like, is it worth doing the whole education part of this conversation? or should i just keep it to myself? i went with the latter most of the time and did keep it to myself, which probably wasn’t the best either because i wasn’t giving people the opportunity to be there for me. but something i really struggled with was i didn’t know how to explain it. i don’t even know how to sort through it myself. so how should i get somebody else involved?

are you still in menopause now?

the menopause was temporary. the injection lasted for three months. i needed it for just over four months. so unfortunately, i had to get it twice and then i got the surgery.

what happened during the surgery?

i had been on the medication for so long that there wasn’t as much endometriosis growth when they did the surgery for me, which was great, but there was a lot of scar tissue. the surgeon removed all of that scar tissue, removed the adhesions that i had there and the structural damage they could see.

surgery does fix endometriosis more than the hormonal treatments, but they’re not getting rid of the endometrium deposits. the idea with the surgery is that it’s a reset button, but it will grow back.

after the surgery i got an iud, which was supposed to be the plan for me moving forward, but i had the same problem with the iud that i experienced with the birth control pill. at the two and a half year mark my pain was coming back and was getting worse. it’s common with endometriosis. it’s like, you kind of get used to a treatment and it wears off.

now there’s a medication for endometriosis, which i used to bridge the gap between other treatments. for me, just knowing that there’s pharmaceutical company research going into it was huge for me, i was so thankful for it. but the treatments are band aids. while they buy you time, it’s like bits and pieces. so, this is going to work for me for six months to a year and then what? when you don’t have many options that’s kind of scary.

do you have an idea of what’s next? will you go back in for surgery or will you try another type of hormonal therapy?

i’m trying to be cautiously optimistic. it’s not severe enough right now that i’ve needed to try a new approach. it’s just nice to have a break from doctors and not constantly be either getting used to a medication or withdrawing from a medication. i’m just trying to enjoy that as much as i can.

i’m getting married fairly soon and the conversations that my fiancé and i are having is when do we want to have kids and what is that going to look like? it’s been a process with my specialists. what does pregnancy look like for me as someone with endometriosis versus someone without it? it may be harder for me to get pregnant, but we’re not going to know until i try. for other women, it’ll be like, if you try for a year and nothing happens, then you move forward with fertility specialists and that kind of thing. but my specialist now is saying that if we try for six months and nothing happens then we’re going to have to do another surgery.

you mentioned that you used to be very private about this diagnosis; what changed for you?

part of my shift is being able to see headlines and articles about it, or patients telling their story. it made me more comfortable to own it and say, when i meet people or in relationships, this is what i have and not feel like shame about it or feel the need to do all the education.

after i started to be more open with my friends about it, i’ve been able to be a resource to them. just being able to support each other like women is awesome.

there are people talking about it, there’s awareness. i want people to know there are people that will help you and you will be believed. you just have to keep going.

more information on endometriosis and period pain, as well as support networks for those affected, is available at the endometriosis network of canada, yourperiod.ca, and the endometriosis foundation of canada.

what it feels like is a regular series that explores the experience of being diagnosed, treated and living with a health challenge. have a story to tell? email info@healthing.ca.

emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on twitter @jonesyjourn

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endometriosis: what it feels like

'you should be believed when you say you’re in pain.'

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