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Before I start, I need to say that because of everything that happened to me, I'm studying Biology and finishing my BSc., applying to a masters of Women’s Health or Public Health and pursuing a career to advocate for women with Endometriosis, either as an Endometriosis specialist myself or an advocate women in the health care system to change the way women are treated in the ER and in the medical system with period pain! I will help women suffering with this in my life, this is not okay, and we deserve better. 💛 ❤️🩹
Here is my story.. ! ❤️🩹 Its a long one but spoiler alert! Because I live in Canada where there are virtually no endometriosis specialists and waitlists for years after years of referrals, if you can even get accepted into the clinic (which I couldn't), I had to travel for 18 hours there and back to Washington and pay over $1,000 to see an Endo specialist. There I got medical imaging where after 6.5 years I was finally diagnosed with Endometriosis, Adenomyosis, Fibroids, Interstitial Cystitis, Pelvic Congestion, Hip displasia and snapping hip, but I also have anemia and postural hypotension (potentially POTS but to be determined..)
Seriously though, how did I not get into the clinic?? 😭
Here is the full story! 🥰
Everything started for me with my first period at 13. It was significantly heavier than any of the other girls, except one girl, and for some reason, that made it 'normal'. It probably lasted around two weeks the first time and well over a week each time after. I was told by my mom, friends, anyone that this was okay. We thought nothing of it at the time, it was “just part of being a woman”, right?..
Time passes and suddenly I’m anemic at 15/16, barely functioning, having heat flashes, dizzy spells, collapsing on the floor. I’d collapse out of nowhere, bleed through, emotional mood swings, all leaving me in puddles of sweat on the floor. How did I think this was normal? The pain started for me at 16. That first painful period is burned into my memory. I remember screaming in bed into my pillow, I didn’t understand what was happening or if something was wrong. I screamed and screamed for hours, sobbing quietly and faintly with no sound coming out anymore. I didn’t want anyone to hear me. I’m not sure if I was afraid being called weak or dramatic, or if I was scared they wouldn’t believe me because it was “just period pain”… and "everyone has period pain”.
I went to the doctor shortly after with my mom at 16 and was immediately placed on high estrogen birth control pills. I was on these for a year and a half, but I don’t remember them working very well to control the bleeding. They worked well enough that I was able to continue with life and sports, I must have played every sport in high school. I was still very anemic but the pain was better enough that even still with bad pains every month, I didn’t know what else to do but to continue. Slowly it felt like the pain started to get worse, like the birth control was just not working as well as I got older. Although I didn’t know it at the time, symptoms were peaking through as I got older and things got worse. At age 17 I went to another doctor and heard the term endometriosis for the first time from a very kind male doctor at a walk in clinic. I didn’t know how lucky this interaction was at the time, but if it wasn’t for him I might have never heard the word endometriosis. He said they were “cramps from hell” which has stuck, he believed me and gave me a referral to a gynecologist he thought was the best in the area. He was convinced she would help. Once the referral was finally accepted I went to the gynecologist with months of tracked bleeding and pain, I tracked everything because I knew something was wrong. She immediately dismissed me. She sat behind her desk and judged me. No evolution, no exam, she told me to keep tracking my pain and symptoms and to go on the pill or iud, glossing over everything and anything I mentioned. She made me feel like everything i had was normal, like I was wasting her time. So, at age 17… I left. I didn’t know how badly the medical system was failing women, I didn’t understand that she was gaslighting my pain at the time, I trusted her when I shouldn’t have.
Shortly after I tried to switch birth controls, something needed to change so I got the mirena IUD at 17. My god was this awful. Insertion was incredibly painful. The IUD was awful and didn’t work at all for me. The first 6 months I must have bled straight through. Luckily the bleeding eased up a little, but I was still bleeding for 3 weeks every month at times. Luckily it wasn’t as heavy, and some days were normal bleeding or lighter. I tracked so much bleeding that year, it was hard to find days I wasn’t bleeding looking back. I honestly don’t think I cared though, the pain was so much better so I left it in for three whole years. Looking back... I don't know how the hell I did that with so much bleeding being anemic. 
Finally the symptoms started to get much worse and I couldn’t ignore it anymore. Bloating and pain, fatigue, painful sex, bleeding, it all started to get worse. I didn’t even know sex wasn’t supposed to be painful. Sex was painful since day 1. Luckily (spoiler) this can get better and the right partner will make things less painful (I even have no pain sometimes now with sex).
But, how was I supposed to know sex wasn’t supposed to be painful when no one talks about sex for women? Multiple hospital visits later and all i got was multiple misdiagnoses of pelvic inflammatory disease, months of antibiotics, and NO positive swabs for any of these things i was prescribed for... the first few times i listened and took them anyway, but that messed things up more for me. After that, i stopped listening to the ER doctors as they continued to say PID with no testing done. I NEVER had an STD or STI, everything came back negative and I never had any positive swabs but they would just give me the antibiotics and send me away. They wanted me out of their office. After the first two/three times this happened, I threw the antibiotics away the next time and gave up on the medical system. Next was a cervix infection to which i also believed from a womans health doctor at a womens clinic, she said this because my uterus was “tender” with no positive swab… My test came back negative but she gave me the antibiotics anyway. Looking back, of course my uterus was sore, I had endo/adeno 😭 that was another month of antibiotics messing up my body. Why did I listen??Doctors told me so many gaslighting things in these ER trips like “endo pain only happens on your period, you can’t have endo” i think i heard everything. I gave up on the medical system for awhile after this. I didn’t trust them anymore after so many misdiagnoses and no help. Would you?
At 21 my IUD fell out for a second time and I gave up on it. They said I shouldnt get another one in, failing to mention that women with heavy bleeding are prone to iuds falling out… i went back on the pill again and that started the horrible time of emotions, constant bleeding, trying multiple pills, and horrible bloating starting to break through, bladder pain and IC symptoms starting, just pain really starting to come through with weakness and muscle fatigue. I thought I had sibo, candida overgrowth, the whole works.. I didn’t know what was going on. I even tried an aggressive 4 month candida diet which didn't help... i had no idea what to do. I always thought about endometriosis since that first doctor when I was 16, bless his heart because without him I may have never heard the word. No one, not my GP, my gynecologist, no one told me about endometriosis. My GP even said the first few times I asked that it wasn't possible because my ultrasounds came back clear. I must have had a million ultrasounds.. test.. mris.. everything coming back “normal”. My family would constantly say things as the symptoms emerged and I'd constantly go to the doctor or ER for pain, they'd say, "theres always something wrong with you" or "you're fine" or "just go for a run/walk/exercise". When someone would say there was "always something wrong" with me before my diagnosis it was a really big trigger for me. Because of course something was wrong, I knew something was wrong and I was desperately trying to figure out what it was. I didn't understand the extent of damage endometriosis could do on my body. I had no education on the subject, I barely even knew what it meant.
Finally, at 22, after bleeding for 6 months straight on birth control, I gave up on all birth control. I said screw it and I’m getting this figured out. I tried multiple times to get my gynecologist to write a referral to the endometriosis clinic in Vancouver, I was convinced it was endometriosis but she refused and said they would never accept me. She gaslit me so much I had to have my mom come in with me to demand a referral and help advocate for me. Bless her, she has helped me so much. But for months I thought that was it, i'd have to wait another 12 months to get into another gyno and try to get them to write it. I tried again and again with my gyno and nothing. Until the last time when dealing with nerve pain and she said “i cant help you anymore” and basically told me to never come back. Back when I thought it was candida (which now I know it wasn’t) she said that I could just “live with it”. She truly didn’t care about my well being. One time when I tried again to show her where the pain was she demanded me to point to it and when I did she said “that’s your stomach, that’s IBS and not my problem”. After finally giving up on her and birth control, I needed to know and see what I was dealing with.
About 3 months after coming off birth control my body evened out its hormones and all hell broke loose. The endo / adeno pain, the REAL pain my body was going through finally showed after YEARS of suppression... it was the most traumatic experience. I remember waking up, running to the bathroom, screaming, sobbing, hysterically curled up on the bathroom floor. It was awful. I couldn’t walk, function, the blood vessels popped around the corners of my eyes from all the screaming for hours on end in fetal position with my head down. After this experience, I brought my mom with me and stood up to my gyno and said she needed to write the referral, fully prepared to report her for medical neglect. Because my mom was there, she really stood up to her and demanded a referral with me, and she finally said yes, and left immediately after. She said to my mom and I that if it was endo there was no hope and nothing anyone could do for me in life. Can you believe that? I needed answers.
My mom did amazing research for me and found an endometriosis specialist in Washington, just outside of Seattle in Grace Harbour. So, after travelling and driving for hours I finally made it to Washington, we paid $1,000 probably more for travel expenses to receive medical imaging done by the specialist. Immediately after she said “you have adenomyosis, fibroids, IC, pelvic congestion.. and endometriosis. You should have excision surgery, it'll be $40,000 CAD” Well shit 😭
So, I am back in Canada. Fighting as best I can to get another gynecologist on a 12 month waiting list to write a referral to the Endometriosis clinic in Vancouver which also has a 12 month waiting list. But, now that I have a definitive diagnosis and a recommendation from a specialist to receive excision surgery. I will not stop fighting.
Now as I wait for confirmation of getting into the clinic and waiting for surgery, the best thing I can do is try and help myself through pelvic physio and diet/exercise when I can. I will study hard and help women, we deserve better than this. ❤️🩹
How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis?
Longer answer is above! It took 6.5 years and travelling to another country! :( I was 13 when the heavy heavy bleeding started and 16 when symptoms and pain got really bad. I was 23 when I was officially diagnosed by an endo specialist on ultrasound, but I am still waiting for surgery to help the pain.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
More details above 💛 Initially it was mostly heavy bleeding and anemia as a teenager that turned into horrible pains. As the bc no longer worked and I had to stop all bc, they have become life altering. I am not the person I was before. I used to be an athlete, now walking down the street hurts too much most days. I can barely go for a walk some days, pain flares and chronic fatigue is life changing. I’m out for about a week every 3 weeks fully on my period but it’s more than that. I've had several stomach ulcers im convinced are connected, I live with hip pain, bloating, nausea, leg pain, sex pain, sciatic pain, bladder issues and IC, vuvlodynia, vaginismus, rib cage pain, heavy bleeding, headaches…the list could go on for so long 🥲
The pain you experience while trying to go to the bathroom on your period is something unimaginable. I didn't understand before coming off the pill just how bad my pain was. Screaming, crying and sobbing on the bathroom floor and screaming on the toilet just trying to go to the bathroom. It's awful and shouldn't have to be endured.
What was your experience with healthcare professionals during the diagnosis process? Were there misdiagnoses or misunderstandings? Did you experience any dismissive attitudes regarding your symptoms?
Answer is above! 🥰 so many misdiagnoses. I was told it was IBS, infections, etc. !
Every single doctor I have seen has been dismissive of my symptoms at least once. Especially my gynecologist. She made me feel like I was crazy. The number of times i have left my gynecologists office sobbing, crying, feeling hopeless like I had no help.. i have one doctor luckily now who is kind, a GP, he doesn't understand the depths of the endometriosis or the diagnoses, but he is such a kind doctor and always wants to help however he can. I am very thankful to have him on my medical team.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
Every single day is different. Sometimes it feels like my legs loose feeling and pain radiates to my toes from my hips, sometimes it feels like barbed wire in my abdomen, searing my intestines and scraping my sides, and sometimes, it feels like my bladder is being wronged out like a towel too far and just going to the bathroom causes an endo pain flare It honestly feels like no matter how I describe it, unless you're experiencing something similar, you may never understand the extent of the disease affecting our everyday lives. It’s been a sore spot for my family for a long time, but after my diagnosis things have gotten significantly better and they have really started to see how the disease is impacting my daily life.
But honestly, the demands of this world… this world is not built for women.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
For a long time my family would constantly say things like, “ there’s always something wrong with you” or “you’re always not okay” and it was tough. But things have gotten so much better and I feel like my family truly tries to understand and help in anyway that they can. They’re incredibly supportive and my mom has been my biggest advocate and support system. She’s been my biggest support system and always researches everything she can to help. My boyfriend is also so kind and helpful when I’m struggling, he’s always there for me and is the only person who really sees what its like on a daily basis. He has seen everything, the transition off birth control to the horrific pain of the first awful flare after bc. he was there through it all and sees me on a daily basis. when i say i cant walk, he truly understands me and will help me walk. he doesn't question it or say im fine. he helps. he does the best he can and that is everything I could possibly ask for.I’m truly grateful for his and for my families support.
My friend’s are also incredibly understanding and kind about everything. They listen to me, and try their best to help. I feel incredibly lucky for their support and friendship. While endometriosis has truly been the reason for loosing some friends, it also shows the people in your life who will help when things are hard and truly care for you.
Sometime’s I do feel like there is only so much support a friend, family member or boyfriend can give before it’s too much for them and they need space. I understand, but it doesn’t make it any easier when you’re the one feeling the pain too. Feeling like a burden is one of the hardest things about this disease, I always want to lie or say I’m fine, but most of the time the pain is too intense or the discomfort and I can’t just pretend that I’m fine. It’s too hard to fake it when something is stabbing you inside or feels like your bladder is trying to crush itself.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
After I received my diagnosis for everything, I wanted to barge into my gynecologist's office and yell and scream. I wanted to yell because she never believed me. Not only did she not believe me, she didn't care at all about me or the pain I was going through, she didn’t care that I was struggling to keep going from how difficult the pain was at times. So instead of offering surgery or help or a referral, she just sent me away with more birth control. It got to the point where she would actually hang up on me or leave the room when I started talking after she was finished. I felt hopeless seeing her and would cry constantly after seeing her.
I’m still fighting for help and surgery to remove the endometriosis from a specialist in Canada. I’m desperately trying, with everything I can. Wait times are difficult, I don’t know when or if I’ll be accepted, but if I’m not, I’m fully prepared to fight.
After everything I’ve been through with the medical system though, now I can barely walk into a medical office without feeling anxious now. I am afraid to get routine testing done because they might think I’ve ‘healed’. I'm afraid to have another ultrasound where they tell me I'm fine again.
I truly want to help other women suffering from this and fighting the medical system like I am now, because I know there are so so many of us.
I do have a pelvic physio who was incredibly encouraging, she originally thought I had adenomyosis, which I know now by diagnosis I do. I also have a GP now who is kind and want’s to help however he can. I am grateful for his support and help. He is very knowledgable about family medicine and is willing to admit when he doesn’t know something about endometriosis or if I want to inform him about it. He’s kind and understanding so for that I am thankful.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Endometriosis puts your whole life on hold when it’s flaring. Truly you can’t walk or run, let alone go to school or participate in sports. I used to be an athlete, we won several tournaments and I played so many sports from rugby, soccer, volleyball, and field hockey. But now, I don’t even know if I can go for a run most days. I believe I can one day if I work to get there, especially after surgery, but right now, I’m trying the best I can to do gentle exercise and work my way up to weightlifting and running. I’ll get there but not being able to exercise some days because you’re physically incapable, that’s tough.
I also believe that the people around you, even after my diagnosis, still believe there is an end in sight, that it will be better one day and just...go away. No one really seems to grasp the concept that this is a chronic illness that yes, can be helped, but it is chronic and incurable, meaning I will be fighting this for the rest of my life. You don’t just, magically ‘get better’. You can have more good days than bad and work to take care of yourself and health and digestion, but you won’t be completely pain-free. Something ads and dieticians often try to sell. Honestly, some days you can’t even get out of bed.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
The most effective for pain management is definitely my heating pads, cramp cream, tens machine and magnesium cream. Also weed is a huge help. It truly makes the pain feel more bearable and is my best friend when it comes to pain. There are things I’m looking into to try and help, I want to start an elimination diet and eat the best I can, also look into bladder installations and things to help this way.
What strategies or treatments have NOT been effective in managing your pain? Are there specific activities or lifestyle changes that you've made that didn't help to alleviate symptoms?
Any type of birth control truly has not helped me very much or at all. Birth control would suppress symptoms for a short period of time, sometimes not very well or at all, but it also meant I had no idea just how bad the endometriosis was or the extent of damage going on in my body. It always stopped working and gave me horrible anxiety and depression. I mentioned above but the IUD never helped with the bleeding, it actually made it much worse, which always seemed to confuse medical professionals because mirena stops a lot of women’s periods. I became anemic on birth control pills after until the point where i could barely walk, stand or form coherent sentences. My gynecologist’s answer was always "double up", taking multiple bc pills per day, higher doses, both iud and the pill, everything... nothing worked in the end and i never stopped bleeding. I came off birth control and felt like I got my life and myself back. I can’t ever do that to myself again.
Currently I use natural cycle tracking and basal body temperature which I love. Im starting to understand my body in a way I never knew before. I would highly recommend this method!
What do you wish you knew earlier in your journey?
FIGHT ❤️🩹 if a doctor tells you no, don’t accept it. If I’d fought sooner I could have had relief years ago, instead of suffering silently and feeling crazy or weak. Don’t let anyone, especially someone responsible for your medical care, make you feel like it’s your fault or that there’s nothing they can do to help. Even with endometriosis, there is always something they could have done and should do to help. A good doctor will do anything and everything to try and help you, and if they can’t, they’ll refer you to someone who will.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes! Many lovely accounts like yours were inspirational, showing me what it actually looked like to have endometriosis, I knew immediately that was what I had. Your account was actually the first one I ever found a few years ago. It showed me what the symptoms are and what endometriosis actually is in a way I could understand. I never got any information about endometriosis from medical professionals, I learned about it from your page and other influencer’s advocating online for women with endometriosis.
I followed your journey and I kept fighting for my own. I am grateful you made this page, you have helped me and many other women understand what endometriosis is and to never stop fighting. <3
There is also a negative side though to social media and the endo community. I had one awful experience with an endometriosis dietician who made me feel awful, I was left sobbing after. She actually tried to get me to spend $4,000 on a treatment and told me that endometriosis was / would ruin my relationships, sex, that I should imagine what my life would have been like without endo, and that I could get that life back by just following her diet. i was sobbing after the phone call.. she made me feel like I had no hope and no life with endometriosis and that it could be 'cured' by her diet protocol. It was horrible.
Are there any misconceptions about endometriosis that you've encountered?
I have found that no one talks about or knows what adenomyosis is. Not even my GP. None of my friends knew, I only knew from instagram otherwise I'd never even heard the name until the endometriosis specialist told me I had it. I’ve had doctors tell me Endometriosis doesn’t cause pain off your period, my doctor thought adenomyosis was fibroids to which I had to correct him, which he (being the kind GP) was incredibly receptive and admitted it wasn’t in his expertise as a GP. I was told it would always show up on an ultrasound so because it didn’t show up on mine there was no chance I had endometriosis. My gynecologist said when asking where it hurts that my abdomen was not her problem, and that because it wasn’t the uterus location it was IBS.
What advice would you give to someone who suspects they may have endometriosis? Is there any guidance you would offer to those recently diagnosed or struggling with their journey?
As someone recently diagnosed, i would tell someone in the process to never settle for a doctor who doesn’t believe you and to bring someone with you if they refuse. Bring someone who can help fight with you and to be prepared to report her for medical neglect if she refused the referral. Always ask for a written documentation of your interaction with them on file.
Write everything down you want to say, get the appointment and never stop trying. You deserve better care. <3
I would also want to tell someone that there are so many women who are dealing with the same situation and sometimes the best of friends are people with similar experiences like these, I've met so many people online now and they can really help you come up with things to say and show you how to fight for your diagnosis. You deserve answers!!
Finally, I would want to say that being recently diagnosed is also incredibly difficult. People in my life were thrilled, like it was the answer but I was shell shocked. Yes, I was incredibly happy to know, but I was also terrified. And thats okay. Its okay to feel miserable some days because this is fucking unfair!! <3 We didn't do anything to deserve this and it doesn't make you hard to love. You deserve someone who will love you endlessly, and the right person will love you for you.
