Endometriosis is the worst club, but it does have the best members
Endometriosis is the worst club, but it does have the best members
By Katie
After over a decade of excruciating pain and an ineffective surgery in 2020… and only 6 months since my previous surgery, my endometriosis has been mostly excised.
In November 2020, I had my first laparoscopic procedure to explore the possibility of endometriosis. My gynaecologist at the time was not experienced in endometriosis, and/or the removal of it. She only found a small patch of endo on the back of my ovaries and pouch Douglas, and ablated it. After I came out of surgery, she told me that “there was no way that the endo would be causing my pain that badly”, and basically there were other issues causing the pain; She had said “it was all in my head”.
it took me and my GP over 4 months to get my surgery notes and photos sent to me. My pain had only worsened from then… She also was very dismissive of the idea of endo, and had said that it was “no big deal”.
My gynaecologist truly made me feel it was all in my head.
She even advised me that you can’t have endometriosis pain unless you are bleeding, and that my pains post-surgery were caused by something else that I should look into. This was false information, and it truly saddens me that there are doctors out there spreading misinformation. I know for a fact this same gynaecologist (female) has advised other people with endometriosis of the same thing. If you’re reading this and my story resonates with you, I encourage you to seek a second opinion if you can.
Firstly, after finding out there are different removal methods, the method she used were outdated and that there are indeed people who specialise in endometriosis, I learnt that it’s not just something a normal gynaecologist should be dealing with.
After doing my own research and talking to people in the endo community, I found a local rural doctor who received additional training specifically for endometriosis. He discussed my pain with me and made me actually feel believed, and said the endometriosis could very likely be causing my pain. The downside was that I was still having severe pain. Given he had not performed the first surgery, the photos provided were limited and the removal method meant no biopsy had been taken, so he suggested that redoing the surgery would be the best way he could help me. He would be thorough, and then we could work on a plan of action from there once he has seen everything himself. On the 8th of June 2021, I went into my second surgery to have it my endometriosis excised.
I was in my second surgery for around an hour and a half. A very extensive amount of very deep, infiltrating endometriosis was found on and around my uterus, vaginal entrance and muscles, pouch of Douglas and the area behind and the surrounding nerves and ligaments. I also had two large cysts growing around my left ovary.
Surprisingly, my ovaries and Fallopian tubes were clean. They also found endometriosis on my bowel, which he did not remove due to the nature and area, because one small slip could leave me with a colostomy bag – and we wanted to try avoiding that. I also received my surgery photos and post op reports at my post op appointment, without having to ask for them. It was a breath of fresh air!
Prior to being diagnosed, I had never really heard much about endometriosis - if anything at all. I didn’t know what it was, and my initial gynaecologist wasn’t very informative about it. Most of my knowledge stemmed from hours and hours of research and reading, which is actually how I came across QENDO.
A brief history of my period…
I have always had painful and heavy periods. They were also random; sometimes I would bleed for 2 weeks and sometimes it would be 4 days, but they were always heavy and day two was always the worst! I always thought this was normal and everyone had different periods, and I had simply drawn the short stick.
When I was 14, I was put on the pill and told to skip my periods. This was only partially helping, so my doctors put me on the bar (implanon) as well as the pill, because as a 14 year old I would forget to take the pill quite often and I was still bleeding heavy and irregular. By 20, I was on my third implanon and still on the pill, so my doctor suggested coming off the pill. They wanted to see what was happening, because each implanon has a different effect on the body.
About 6 months after being off the pill my pain started, and I had my first period since (I was still on the implanon). That period was a kick to the guts and the worst period I had ever had! The pain didn’t go away when my period finished; it kept going even after my period had finished and my doctor suggested I go back on the pill, but something about this pain didn’t sit right with me - I was sure there was more to it. So I refused to go back on the pill, and went and got a second opinion. My GP suggested that my symptoms weren’t normal, and gave me a referral to a gynecologist, cue first gynaecologist / the gynaecologist who preformed my first surgery…
I had always thought painful periods were normal, and due to the stigma behind periods and it was never really spoken about.
I still remember my first ever period… I think I was about 11, and I had started spotting the day before. I spoke to my mum about it the next morning when I woke up as I was in unbearable pain. (Mum has always been good to talk to and we tell each other everything… sometimes I tell her more than she would like..sorry Mum!).
I had no idea what was happening; I tried eating thinking I was hungry, and that didn’t work. I ended up screaming out to mum at about 5:30am (I knew better than to wake mum on a Saturday morning unless it was an emergency) but at this point I was upside down on the couch in so much pain! I was unsure as to why, and she got me a hot water bottle for my tummy and a blanket, cuddling me on the couch until I felt better.
My friends and I didn’t talk about our periods, and even in sex education, periods were barely mentioned - except to talk about starting a family. Let alone learning about other conditions that come with your periods, i.e. endometriosis, PCOS and Adenomyosis. Girls would hide their pads and tampons, and we would rip them open as quietly as possible in the bathrooms because you didn’t want anyone else to hear you.
I’m so glad to hear that endometriosis and other period related issues are starting to be made more aware to younger people in school, and the QENDO school education sessions are amazing! I went along with local Toowoomba volunteer, Ash Webb to one of the chats at a local school and it was not surprising how many girls didn’t know about endometriosis. I’m glad this is changing.
My partner and I had just started seeing each other when I first started getting my pains.
I wasn’t looking to meet anyone and was trying to focus on my health when he waltzed into my life. I tried to give him an out, and that he’s only young and doesn’t need to deal with this, but he wouldn’t take it. He was by my side for my first surgery (we had been seeing each other for about 2 weeks), and he came over and cooked me dinners and comforted me. He has been the best thing to ever come into my life, even at the worst possible time. Even when I was diagnosed I was still trying to understand this condition I had, and he went and did his own research. He bought books for partners of people with endometriosis so that he was able to understand it himself, and help me in any way possible.
He is so understanding of my illness and especially gentle on my pain days. He even got a second microwave for beside the bed, so I could easily heat my heat packs as required without having to get up. We had to progress our life together pretty quickly, and have had the talk about children very early due to my condition and fear of fertility issues - he has been great!
I’m so lucky to have this amazing man in my life.
After my second surgery he had to help me walk, go to the toilet, help shower me and even slept beside me on the couch. He would even help me track my bowel movements! He talks about endometriosis to anyone and everyone, he doesn’t care who, and understands that this is our life - and that is an amazing way to help break the stigma.
My previous job was very unsupportive regarding my condition, despite that I had been working there for over 2 years. I was about 15 months in working with them when my first lot of pain started. At first they were supportive, and through my first surgery they were really good. When my second bout of pain hit they thought I was making it up and just keep pushing me to work, making me feel terrible for not being there. Which wasn’t helpful…what’s a trigger for endo…? STRESS!
I applied for leave for my second surgery giving sufficient notice, and they said they would need to think about it as at the time they were short staffed. It wasn’t until the day before my surgery they finally approved it, but not before asking me if I could come back as soon as possible(I had asked for two weeks off and actually ended up needing three weeks off). While I was waiting for my second surgery I put in a request to work from home, including information and a letter from my doctor regarding my condition, and a FairWork document on flexibility in the work place for people with Endometriosis (you can find this link on the QENDO website). This request was due to my pain, being at home was more convenient to manage the pain as it had my bathroom, shower, heat packs and my bed.
They ignored my request; I had a meeting with my boss (male) and I brought up my request, to which I was advised, “We don’t allow anyone to work from home and that’s the end of it”. (We stayed open through all of Covid19 lockdowns as we were considered ‘essential’, we even continued seeing clients.) I work in Law as a conveyancer, and every other law firm in my area had closed down. They had all sent their staff to work from home, except for us and the other odd, small firm, but we were a firm of 40+ people all in the office together.
“You have had the surgery, you should be better now”, is what they told me after my surgery. That was the last straw; I went home that day and updated my resume and applied for a new job. That same week I got a job offer from another firm. This one allows me to work full-time from home and is super flexible if I need to go to an appointment, or if I’m unavailable for an hour or two because I’m resting. Handing in my resignation was one of my greatest days. I’m lucky to now be able to work from home, and I know there are people out there who don’t have this same luxury - which I think is really sad and so outdated!
Endo is hard enough without the added stress of an unsupportive work place.
My point of including this is that everyone deserves to feel supported at work and there are places out there that will… If you can, avoid adding unnecessary stress to your life just so you can help someone pay for their luxury lifestyle..
I’m so grateful to have discovered QENDO. I have met some amazing people and forever friends. I have learnt a lot about my condition, and it’s great to have a community of people who understand what you are going through. I have recently become a QENDO volunteer and I look forward to this new chapter, hoping to not only help raise awareness, but also to help other people who are suffering.
I’m now seven weeks post op, and I’m currently suffering with a bit of post op depression and still having pain. I’m starting to come to terms with this is how my life is now and to make do with what I have. Endometriosis is hard, and it’s good to have a great support system and endo kit. I know that this is just one chapter in my book, and with the right team, I can learn new ways to improve my quality of life. It just takes time!
My support system consists of my loving mother, my supportive and amazing partner, a specialist gynaecologist, a pelvic pain physio, a chronic pain and mental health counsellor and a chiropractor. Chronic pain and endometriosis are expensive, and there is currently not enough of a support system from the government for people with chronic illness/ pain. I am lucky to be able to afford these luxuries to help with my chronic pain, but I know and understand a lot of people don’t have this same luxury.
My endo kit includes lots and lots of heat packs and hot water bottles (in all different sizes and colours of course), tens machine, magnesium, ibuprofen, bath, bed and comfy pjs (check out Peachykeenau, they are my go to - so soft and comfy and designed by people in this community).
Because of my experience, I’m a big believer in self advocacy!
If something doesn’t seem right, keep pushing until you have answers that explain why you feel the way you do. I’m super lucky to have my Mum, who has been so supportive and my biggest advocate. Not all health professionals have the answers… seek a second or third opinion, or even a tenth until you get your answer. Do your own research. While it is sad you have to advocate for yourself, especially to the medical industry, you know your body better than anyone else - never give up on yourself!
Awareness around endometriosis is also another huge area that requires a lot of change. Each person who is aware of endometriosis and mentions it to another person is raising awareness. I’m not asking anyone storm Parliament for awareness, (although not a horrible idea… however, for legal purposes I am kidding! Please don’t do this) but start talking about it. End the stigma around periods and endometriosis. 1 in 9 people assigned female at birth have endometriosis (and I’m sure there are many more), so chances are someone in your life will have it… mother, sister, aunt, friends or partner.
I would also like to put out there that I’m always open to chat to anyone, whether it’s to ask question or just simply to have someone to vent to.
Endometriosis is the worst group to be a part of but it does have the best members.
Katie x
This post was written for the QENDO blog and shared with consent.
This blog does not constitute medical advice and is a personal story by someone living with pelvic pain conditions. The medications, supplements, health providers mentioned in this blog are not endorsed by QENDO nor does QENDO receive financial incentive for these products or by the medical professionals mentioned. Please consult with your health care team before considering taking any supplement, medication or treatment pathway.
The materials available on or through the website qendo.org.au [‘QENDO’] are an information source only. Information provided by QENDO does not constitute medical advice and should not be relied upon to diagnose or treat any medical condition. To the maximum extent permitted by law, all contributors of QENDO make no statement, representation, or warranty about the quality, accuracy, context, completeness, availability or suitability for any purpose of, and you should not rely on, any materials available on or through the website qendo.org.au. QENDO disclaims, to the maximum extent permitted by law, all responsibility and all liability (including without limitation, liability in negligence) for all expenses, losses, damages and costs you or any other person might incur for any reason including as a result of the materials available on or through this website being in any way inaccurate, out of context, incomplete, unavailable, not up to date or unsuitable for any purpose.
