Addressing The Endometriosis In The Room
Part One of My Experience with Endo
Like a lot of teenage girls, my period started when I was 14. Immediately it was brutal. Although I didn’t feel any pain I remember the fatigue and the black tar falling out of me endlessly. I vaguely remember mild panic in the house about how much blood I was losing, and how weak it made me. The pain started in subsequent periods and never went away.
I feared my period, it never seemed to leave me. During my first periods it was constant. It wasn’t fresh blood, it was dead blood, like I was mummified on the inside. To this day, no matter how painful the periods, I feel thankful every time I see bright red blood. I don’t know why.
I had to wait until I turned 15 to go on the pill. I was so happy I could finally stop bleeding. I continued to be on the pill, at times without taking a break to bleed, until I was 24. Bleeding during my use of the pill steadily increased, although it was never mild in the first place. It went from a day of heavy bleeding and a week of fading blood loss to 3 days of bleeding — bleeding isn’t even the word, shedding is more appropriate. Shedding handfuls of intact lining. It looked like liver. I stopped the pill, began having real periods and it was amazing. Amazing for about 2 years.
The bleeding has always been heavy, but the pain began to be intolerable. I started getting pain outside of my period, a week after, a week before.
I only began to think something was seriously wrong a night in June of 2017. I climbed into bed after my shower, messaged my boyfriend, turned over onto my left side, closed my eyes, and felt lightning hit my pelvis. I thought maybe it was just a bubble of air working its way through me, I laid there for a moment longer believing it would fade as fast as it started. It got worse, fast. Before long I was laying in bed, grunting, sweating, crying, and intermittently screaming into my pillow. I thought someone was going to bust my door down thinking I was being murdered at any moment, and I suppose if I wasn’t living in a low-rent apartment building in Burswood at the time maybe they would have.
After about 15 minutes of escalating agony and building terror I finally messaged my boyfriend, he immediately left for my house and after another 15 minutes he was at the door. I had to crawl to the door, I couldn’t stand, I couldn’t get any relief in any position. “Should we go to the hospital?”, he asked. “No, I don’t think so. Maybe.” I responded though tears, having no idea what trouble I was in. It took me the better part of 2 hours to fall asleep that night, in the morning it still hurt, but I could just about stand up straight, and I had an appetite and no fever. I had the day off work because I was exhausted and terrified it would happen again.
I booked an appointment with my GP, a GP who had previously reassured me I don’t have Endometriosis, along with 2–3 other doctors. He gave me a referral for an ultrasound and I booked it as fast as I could. Upon arriving at my appointment they gave me the option of an external ultrasound, or an internal (transvaginal) scan. I expected the transvaginal scan to be the one that would show the most so I chose that against my strong resistance to a stranger inserting a condom wearing lubed up ‘wand’ into my vagina. Thankfully the radiographer was highly professional and respectful, however when she told me I had a 7cm cyst on my ovary she did so with such a blasé attitude that I felt suddenly all of the pain and agony I had been in was in my head. Like I was a hypochondriac. She even went so far to tell me how most women have cysts and they’re fine, 7cm isn’t even big. Okay.
I now know the pain I felt that night was a burst cyst. I should have gone to the hospital.
A year later I had a follow up scan (it was meant to be 6 weeks later but procrastination and life happens), this time at a different location, however I chose transvaginal again because I wanted the comparison to be like for like. This was nothing like the scan I had before. I got undressed, and a woman came in to perform the scan, the room was darker than the last one, she asked better questions than the last radiographer, she seemed far more concerned about the cyst, but I felt so violated by that scan that when she left me in the room to clean myself up I wanted to cry. I felt heart broken. I don’t know why, maybe I was having a bad day already, maybe I felt alone, maybe I was just over having medical instruments inside me.
At least the advice now was clear, it was time for surgery. I had a cyst and it was a bad thing. It had to go. The referrals were written and the appointment with the surgeon was made. I was the last person in the waiting room to be seen that day, I remember the admin lady’s son came in to wait for her to leave and she was only still there because I hadn’t been seen yet. I feel lucky that I was able to meet my surgeon before my surgery, he was nice, and knowledgeable about endometriosis. Although, like everyone else I had encountered, only seemed interested in whether I wanted kids or not, and annoyingly firmly believed I would change my mind about not wanting kids. He said I have a uterine septum which could impact my chances of a successful pregnancy, he asked if I’d like that remedied while I’m under, I said no. In that moment I felt like a non-human because I didn’t care about having kids, I could feel the urgency of the situation dissolving because I didn’t want kids. Again I felt alone, and this time quite scared. At least it was happening, the surgery was going to actually happen. A laparoscopy cystectomy. They were going to go in with the purpose of assessing my cyst and my gynaecological status and amend what needed to be dealt with.
I spent a lot of time concerned that I had cancer, maybe hearing I just had endometriosis, something I assumed I had for a long time, distracted me from the severity of reality. At least it isn’t cancer. Yet.
My surgeon advised I probably wouldn’t get a date until well after Christmas. A letter arrived about 6 weeks later, it was now being handled as a Category 2 elective surgery, which meant it had to happen within 90 days. I still hadn’t been given a date, but it was being handled with more urgency which both my boyfriend and I were relieved about, and instead of having the surgery after Christmas I might very well be all healed up by then instead.
In between this point and my surgery, and even after, people I spoke to reassured me that their ‘sister’s friend’, their ‘brother’s girlfriend’s friend’, their ‘mum’s cousin’ had [insert unrelated surgery/gynaecological issue here] and it was totally fine. I can say for certain that even if you mean well, please shove your ‘my friend’s friend’ stories up your arse, they are counterproductive and when you are facing a situation like this hearing that someone has been through something and it turned out fine actually makes you feel like shit — plus just don’t re-tell other people’s stories? You didn’t experience it so you don’t know shit. There are plenty of people I’ve told “my surgery went great” and “I recovered quickly” because I don’t give a shit about those people and just want them to stop talking to me.
I booked 2 weeks off work and prepared for surgery. The 2 days prior I had a whole set of preparations to make, the worst being the fasting and the purging. I was advised to have a bland diet 2 days prior, and liquids only the day before. On the day I wasn’t even allowed to have water in the few hours before my surgery, which would have probably been fine but like with every single stage of this there was an obscene waiting time before I was wheeled in for my surgery. By the time I was prepped by the nurses I was so miserable that I couldn’t even deal with the trainee nurse trying — and failing 4 times — to put in a cannula. I burst into tears because I was all out of resolve by that point, I had been waiting since 6:30am and I was only just seeing nurses at 3pm. I was hungry, thirsty, alone, and very tired.
I woke up after my surgery briefly to see my boyfriend and a nurse talking to me, yelling at me? I felt so unwell. Even thinking about it now makes me feel horrible. I felt out of breath, high, nauseated. I don’t remember much else. I woke up again later and spoke to my surgeon, he showed me what I looked like inside, and told me they removed a total of 300ml of liquid from inside me, 100ml alone from my cyst. They took out endometrium from all over my uterus, from my diaphragm and lungs, he told me they ‘loosened my cervix’, they drained and removed my cyst. He said a bunch of stuff I don’t remember now. He was really great, he shook my hand and wished me luck, and handed me a medical certificate to excuse me from work for 8 weeks, ha, as if I’d need 8 weeks.
The experience I had while in hospital is not standard, I won’t detail every aspect of it, but I was very unwell. After 3 days of not eating a whole lot, being put under a general, and being taken off fluids right after my surgery I was in very bad shape. Regardless of having 2 bright red allergy tags, one on each wrist, they still gave me an opiate derived painkiller (that I am allergic to, that I agreed to having because I was still high and confused) even though I wasn’t in pain. That set me off on an almost day-long nausea/vomiting bender that I will never forget. Still not eating, and being unable to hold down water I just about begged for them to put me back on fluids, which they reluctantly did toward the end of the day but come night time I was still no better for wear. They moved me to an old single room with no TV — something they seemed concerned about, but I was thrilled because the sound of a TV when I was feeling that morbid was torture. In a single room I could have the lights off, and I didn’t have to hear the sound of other patients wailing in agony or puking — and they didn’t have to hear me either. I also had my own toilet which I was frequenting, much to my night-nurse’s ire. I was still pretty messed up and hysterical at about midnight, an older Indian nurse came in, I had her a few times that night already but it was at the end of her shift and my goodness she had had just about enough of my shit at that point, and so had I. She let me brush my teeth, then sat me up in bed and all but forced a water cracker into my mouth and probably came close to grabbing my face and jaw to make the chewing motion for me. I won’t soon forget her aggressive sympathy and her telling me “Lauren, you have to eat!”. I swallowed the cracker, barely, and nibbled a little bit more. It stayed down. I cried a handful more times, thanked her, apologised about 80 times, and went to sleep, waking up on the hour to pee and annoy the male night nurse — who had stopped measuring my pee because he had given up hope and was also done with my shit.
My room gradually filled with natural light as the morning came which felt symbolic. I felt incredible compared to how I felt 12 hours previous. I wanted to go home and I was going to. I messaged my boyfriend, my brother, my sister, and a couple of my friends. I read messages I’d sent that I had forgotten about. I just had to pass the pee test, which was proving more than a struggle for me. Every time I sat down to pee I felt like all my insides were about to become my outsides, and there was fresh blood every time. I feebly wheeled myself to the shower and pathetically looked at the nurse call button, trying to decide whether I risk showering alone without telling anyone let alone asking for permission, or being a good girl and calling the nurse so at least if I did pass out and smack my head on the toilet someone would find me reasonably fast. I called the nurse, I got told off by the nurse for trying to shower at 5:30am, the nurse helped me back in bed and said I could shower after my cannula was done and out. I climbed back into bed and had another little sleep. I can’t remember when I had my shower, but I did, and I also managed to pass the pee test, and I was doing laps of the ward, albeit at the pace of an emphysemic turtle. I may have looked like I’d spent 4 years in a POW camp, but I felt like a bad bitch. Off I went home. I was so thrilled to be out, on reflection it was one of the very worst experiences in my entire life, which is saying something.
It took me a very long time to recover. Much longer than I ever thought it would. I went back to work a week later, then had to go home early and didn’t go back in for another week. When I did return it was for a few hours at a time. It’s been close to 3 months and I still get tired, I still guard my stomach, stretching out feels tight, I’ve had another pain episode already, my scars are still bright and probably will be for another year, my naval scar is still firm and painful, I still can’t comfortably sit up for long periods or wear high-waisted pants for long, my hormones aren’t back to normal. I tried going on the pill, it fucked me up. At the moment I am just seeing how I go. I want to try another pill, I won’t be using the mirena or any insertable contraceptive/hormone device, it’s hard enough feeling in charge of my own body. My sister has had a similar surgery, and is set for another. This won’t be the end of my endo experience, but I hope by sharing it I can encourage other women to keep pushing.
If you have a uterus, you have a 1 in 10 chance of having endometriosis. Surgery can address the urgent issues caused by it, but it’s in no way a cure, it can even make it worse. Sounds pretty dramatic but I’m being generous, Endometriosis isn’t anything to fuck with.
Endometriosis is serious. The pain isn’t in your head. You’re not weak. It will probably make you spend all of your sick leave, your annual leave, it could make you lose your job. At best it’s a disability, at worst it’s a death sentence. Suicidal thoughts and your likelihood of committing suicide are increased, and I haven’t even touched on the general depression and hopelessness it causes or the effect it has on your family.
My plain advice for those finding themselves in a similar situation includes but isn’t limited to:
- If you can, take a friend or your parter with you to appointments. I mean it.
- Keep every piece of paperwork you get, take copies when you can, and take the folder with you where ever you go, even on the day of your surgery — they lost my surgeon-signed admission paperwork, which I had a copy of, and that saved hours.
- Ask nurses and doctors to write things down, ask them to repeat themselves if you need them to. You are not wasting anyone’s time.
- Don’t take no for an answer, if you have unexplained pain or heavy periods it’s not par for the course. Find another doctor, even if it turns out to be unrelated to endo, you deserve answers.
- If you experience a pain episode similar to what I’ve mentioned above, please just go to the hospital. There are people in the ER for much less than that. Just do it.
- You will speak to about 8 nurses for every doctor you see, and they’ll all have something different to say or a different interpretation of the issue. Get it right in your head what surgery you’re having, what your diagnosis is, because you will need to be aggressive at times in asserting your specific condition. Be an expert on yourself because no one else will be, not even the surgeon.
- You might feel alone, but you’re not. Ask other sufferers for advice if you need it. Even me, you can reach out via the comments or twitter.
You will feel hopeless, but you aren’t hopeless, or a lost cause. If you’re told you’re infertile, that’s tough, but I know a few endo sufferers who were told they couldn’t have kids and they had kids just fine so it’s not over until the endo-ridden lady sings.
If it turns out you for sure aren’t able to have kids and that is something you saw for yourself, I’m so sorry. Reach out for support, open up to your partner, see a therapist, find a support group online or in the community.
If you’re like me and don’t want kids or maybe you’ve already had some, I fear somehow having Endometriosis has an especially bitter taste. Your worth isn’t measured by your desire to procreate, you have a beating heart and a brain and feel pain just as anyone else and damn well deserve treatment as fast as anyone looking to carry a pregnancy to term.
Please just know you’re not alone, and you’re loved, and you’re worth whatever it takes.