Some of you have asked why there were not many posts in 2019 and where I disappeared to. The short answer is I’d been in and out of hospital wondering what the heck was going on with my health, scared, anxious and so many other emotions as well. I’d spent more time there than at home with my family where I’d rather be of course.
[Start of image description for the image above: a photo of a bouquet of yellow, burgundy, pink flowers. On top of the photo is a white rectangle with the words 'Arjayes journey'. Underneath is a sage green rectangle with two white stripes and the words "mysterious trek through the unknown: the road to diagnosis. End of image description.]
This has been hard to write due to anxiety, worries, medical trauma etc some of this is included here along with mentions of periods etc. I started an Instagram to share it you can find me at @cozywoodlandcottageknits, but I also wanted to share it here too. This post contains medical trauma, my experiences and talk of periods. Disclaimer this post has an affiliate link for endo thrive at the end, this means at no extra charge to you the rest of the links are not affiliate links.
Introduction
From the time I started my periods, they’d always been heavy, painful periods. I was told they were normal by a lot of people so like most people I just thought I had to deal with it and that it was just part of having them. I thought maybe I was soft and needed to harden up, while I do have a soft personality I didn't need to harden up I needed to be listened to and understood. I took panadol a lot of the time for the cramping, headaches till I realised it wasn’t helping my pain so I just over time learnt to deal with the pain. It’s a bad idea and I have problems due to this to this day but did what I had to do I could cope. Being hunched over the bench with sharp pains both in my stomach and up my bottom just waiting for them to ease and pass. I had a bloated stomach and at times my stomach would be distended but it was put down to body dysmorphia and no one else seemed to understand what was happening. My periods became irregular probably due to my eating disorders at that time, after recovery from eating disorders they went back to being around every 28 days or a week later. I’d carry around pads to use as a backup for tampons, spare nickers and often pants which I also thought was completely normal too after Drs said some people just get heavy periods, clotting etc. ps it’s not normal and please see a dr if you have any of these symptoms. Anyway, this continued from age of 12 till May 2019 when I was 31.
Journey to diagnosis
When my life drastically changed, the fatigue, body aches and pain, brain fog etc I’d put down to having fibromyalgia or working as I’d been doing extra shifts. I now know these are signs of endometriosis symptoms are getting worse and other warriors with this disease also had these signs but passed them off as other things in their lives to such as stress, study/school, needing more sleep etc. Welcome to my journey and this mysterious trek through the unknown. Who knows where this journey the mysterious trek through the unknown will end up next but thanks for reading my journey and please reach out if you are struggling with anything or just want someone to talk to you can find me on Instagram @cozywoodlandcottageknits.
End of May 2019
I went to the dr for something at end of May I can’t remember what for. I mentioned I had a pain on my right side that I don’t usually have. The GP brushed it off and said it was probably just caused by my heavy period. A week later it was worse and I was back at the Drs unable to stand, sent to emergency. I spent 5 days there why they tried to work out what was wrong. I listened to audiobooks and knitted as I find knitting therapeutic. The Drs said maybe a burst cyst though images were clear and it certainly didn’t feel like one. There was no build-up of pain or intense pressure like those cause. My pain came and went over the day sometimes staying for days, others it came in waves like intense labor pains. Time was spent at home unable to work and knowing something was wrong I’d gone from being able to work 20-30hours, walking 5km daily to this.
June 2019
I was being kept company by Lil miss my cat also known as little mischief while I was back home. A week later I was back in the hospital and discharged with a pulled muscle in my hip as it was sore when pressed on and I was limping (trying to ease the pain). The next day back to dr because I know this pain isn’t a pulled muscle though I wish it felt like that and less painful. I was taken off meds that can upset my stomach leaving me on only panadol for pain relief along with me trying meditation. Told not to go back to the Drs within the next 2days and come back the day after to see how I was doing. Why because yes I’m purposely going to Drs etc to be a nucience by complaining to get them to understand. Also making both my anxiety and depression worse in the process - Drs & hospitals always have made me anxious since I was little.
[Start of image description: A photo of Arjaye laying on the couch with Lil Miss snuggled up next to her holding her arm. End of image description.]
3rd hospital visit 11th June
Taking only panadol for pain relief didn’t work and I can’t walk at all. My partner ended up having to push me in a wheelchair so I could see the dr. After countless visits to Drs, emergency, not being believed asked stupid questions and I was labelled as an attention seeker. I’d spent more time at the hospital than at home which bought so much anxiety in itself without medical trauma. I’d ended up in there again treated for a pulled ligament cause I’d done too much dr I’ve been resting all week and before that too it sure doesn’t feel like it and my hip only hurts when you press on it. Got treated for my hip as that pain was worse when touched. Got sent to x-ray which found nothing so the nurse was going to send me home. I told her I didn’t spend 11hours waiting here to be treated like this, I told the nurse I wanted to see a dr please and I said I refused to go home without getting treatment only to be told she’d get security and I could come back tomorrow cause no I can’t just get a bed and I should stop being rude to her. What was rude about that I dunno? So at 11pm, my partner woke up our kids to come and get me cause everyone else is asleep of course and he didn’t want me trying to sleep on a bench. We got home early hours of the morning both exhausted with tired children.
12th June, I ended up back at the Drs the next day
I got told to go home and rest and give it another day. Whatever so annoyed over it and going to improve so I did what they said to no improvement and things got worse. Where did I end up n 13th but at the Drs with them ringing the hospital again to tell them I was coming (no different from any other time). Got there and they put me through to emergency instead of a short stay. It turned out to be a blessing! The emergency dr grabbed a surgical dr who said they were going to work out what was wrong this time because she could see how it was affecting all of us. They spent a few days monitoring me and I had 5 (dunno why anyone needs 5 gynos to come in) told me they didn’t think it was gynecological and my symptoms weren’t consistent with endometriosis (they were) so I was passed on to surgical. Told not to eat the next day so I wasn’t going to but the nurse hadn’t been told and thought my op had been pushed back so I ate. My op got cancelled cause I’d eaten and as my pain had eased they were going to send me home.
The pain ended up coming back so I stayed. A surgical dr ended up doing my op and found my appendix was ok and my heart sank (what the heck is wrong). Then he said I found funny stuff all over the appendix so I’ve removed the whole thing and got all the funny stuff I’ve never seen it before and I'm not supposed to say but I’m 99% sure that it’s rare cancer (it wasn’t as I’d find out weeks later) so was careful to get it for you. I couldn’t think, would I need chemo? What other treatment would I need? Does this mean I’m going to be spending more time here in hospital now? Etc. Diagnostic laparoscopy by surgical Drs as gynecological Drs didn’t think it’s gynecological.
Well, I ended up getting that nurse again that one that threatened me with security since I didn’t want to leave without seeing a dr. I was in my bed across from the nurse's ward. It was quiet cause most people are sleeping except I couldn’t due to pain and I hear them talking she goes oh my gosh what is she back here for now (meaning me)? She’s just an attention seeker. Charge nurse, she had an operation today. Nurse, she convinced a dr to operate! Let me guess nothing was wrong and they operated for nothing and wasted everyone’s time. Charge nurse, I’m no actually they found something I’ll look it up for you, yes they sent the appendix off to pathology and the cause is suspected cancer. Later on to another nurse can you take this patient she was rude to me last time another nurse sure, me thanks I didn’t want to see you either and it saves me having to ask thankfully. She went back and told her how polite I was and seemed confused laughs. She saw me again since then gave me the evils so I gave her the fingers (yea shy me who usually just ignores stuff unless really pissed off). I was so glad to leave and hopped it would be the last time I’d be admitted to hospital but I wasn’t so lucky and a few days later...
4th hospital admission bought to hospital by an ambo
I woke up shaking the whole bed we first thought it was my anxiety or me in pain - calming down didn’t help. I was in pain, felt cold I didn’t want to go to the hospital or understand what was going on. My partner rang the ambo as he was really worried about me. Ambo said I had a temp of 40 and a high heart rate, I also got a headache on the way there. The X-ray was clear, ct scan showed my surgeon had nicked my bowel. I was on a vitals machine checking everything constantly. I was so scared with everything that was going on etc. I ended up going back to pre-op with my nurse worried about my heart rate being so high - it was due to anxiety through the roof. She asked me what helped and we talked about knitting it started dropping on the monitor she was amazed. I went into surgery to have the fluid drained it ended up being syringed out so I had no drain in. I spent a week in the hospital mostly sleeping and doing a bit of reading than knitting socks when I felt better ( I couldn’t concentrate on them - the simple pattern I can do with my eyes closed), couldn't remember passwords for my email, to get into my phone etc. My sister and brother-in-law sent me some beautiful flowers. My knitting gives me something to focus on, something I could achieve and create that gave me a sense of accomplishment, peace and tranquillity.
[Start of image description: a photo of Arjaye's bouquet of yellow, pink, and burgundy flowers. End of image description.]
Poor Lil miss has been following me everywhere since I got home and meowing when she can’t find me. My husband said she’d been looking for me when I’ve been in hospital. The two weeks were soo long and before I could go and get the results I ended up back in hospital in a lot of pain this time it was due to a period and a whole lot worse than my 5/10 pain that was my normal for the last 19 years. Tests were done, I was monitored and given pain meds finally my pain, etc was believed and the nurses were really good for a change cause I was no longer labelled as an attention seeker, etc. A specialist came in and went to discharge me with new meds then said my results were back and I needed to see my dr to get a referral. He must have noticed the panic in my eyes because he goes it’s not that bad you don’t have cancer (not realizing the specialist last time had told me it was suspected as they aren’t meant to tell patients until pathology comes back) you have endometriosis. Your dr can give you more info on it because it’s not my area and I don’t know much else just the definition of what it is (the wrong definition I might add). So when I’d had my appendix removed as it had funny stuff on it - yea that's what the surgical dr called it as it was nothing like he'd seen before it was endometriosis on it. Why didn’t he know? That’s because only excision surgeons are trained to know what endometriosis looks like as it can appear in a few different ways and also how to treat it.
What is endometriosis?
While not much is known about endometriosis and more research is needed. Surgeons do know endometriosis is a whole-body inflammatory disease affecting the whole body. It's something people are born with and symptoms usually start around 8years old or puberty. Endometriosis is not something a lot of people know about it and is not something rare either it affects 1 in 10 people born with a uterus on average it takes 8 years to be diagnosed but for me, it took 19 years. It is where tissue similar to the tissue in the uterus grows in places it shouldn't. On organs, causing adhesions gluing insides together and making a mess. Endometriosis has its own hormones to grow and doesn't need a person's own hormones to grow, it has now been found in every part of the body. Due to how the tissue is it isn't always seen on an MRI, CT or ultrasounds even stage 4 endometriosis (the worst stage there is).
Endometriosis New Zealand defines endometriosis as: "Endometriosis occurs when tissue similar to the lining of the uterus (endometrium), is found in places outside of the uterus. The tissue can form nodules or plaques which may be visualized at the surgery. Endometriosis is commonly found in the pelvic region on the thin pelvic lining called the peritoneum. It may be also be found on the pelvic ligaments, ovaries, and bowel. Endometriosis is occasionally found in places outside the pelvis such as in scar tissue, the belly button or lungs."
[Start of image description: Mischief laying on the top of the couch on watch. End of image description.]
Symptoms of endometriosis
It causes hormone problems that are not always detected by blood tests. I'd always had irregular, pain the week before 5/10 pain, headaches with periods and I was just told by Drs, nurses, councilors, etc that it was normal but it's not normal so after years of asking I'd accepted it as my normal and stopped asking Drs about it. When I really should have kept on talking about it and asking for help but I didn't know to, so if this is you please keep talking to Drs until they listen, until you get answers, etc. Symptoms vary depending on the person and some people don't experience all of these for me I have A4 pages of symptoms but here are a few of the symptoms of endometriosis:
- Pelvic pain
- Bladder pain
- Bowel pain
- Back pain
- Pain down legs
- Fatigue
- Irregular periods
- Ovulation pain
- Cramps that are intense and last more than a few days sometimes starting before a period
- Endo belly (Bloated belly) due to inflammation
- Heavy periods
- Passing blood clots
- Headaches around periods
- Sharp pains inside
- Feeling like you being stabbed, on fire
- Feeling like your insides are being squeezed trying to come out or like your going to give birth to them
- Nausea and vomiting
- Pain with eating, drinking
- Can cause infertility
- Hair loss, thinning hair, clumps of hair missing due to hormones
- Along with these many endometriosis warriors also have:
- Anxiety
- Depression
- Suicidal thoughts
- PTSD
- Medical trauma
- Retrograde menstruation
- The linning of the uterus shredding and the tissue ending up on organs or from the lining of the uterus reabsorbing the tissue when it shreds.
- This is why a hysterectomy is not a cure for endometriosis
- It is also why birth control is not a cure for endometriosis though it can mask symptoms for some people
- It is also why drugs that induce medical menopause are not a cure though it can mask symptoms it does not treat or cure endometriosis despite the misinformation around staying that it does.
- Information on this is from Nancy's nook.
Endometriosis is not caused by any of the following:
[Start of image description: Arjaye laying in her hospital bed, with her hair topper and natural hair pulled back into a ponytail. End of image description.]
Why am I writing this book and sharing my journey?
[Start of image description: Mischief the cat in the garden walking around. End of image description.]
For more information about endometriosis
Websites
Facebook groups
- Endometriosis New Zealand
- A discussion and support group
- Based in New Zealand
- Run events during the year
- Endo Thrive (affiliate link - no charge to you I just get a percentage off my monthly membership)
- a paid members group wih a Facebook group as well that also has:
- resources
- monthly masterclasses
- monthly challenges
- monthly Q and A with Dr Cook Endometriosis excision surgeon
- a monthly circle where we all chat on zoom.
- Nancy's Nook Endometriosis Education
- Education group, not a discussion group
- Also has information on Excision surgeons worldwide and based in the USA
- Endo Warriors Aotearoa
- A discussion and support group.
- Based in Wellington New Zealand.
- She sends out endo packs to people who have had surgery going through tough times throughout New Zealand.
- She also sends out period packs to those in need.
- Holds meetups during the year.
- Fb support group.
- Inclusive of everyone.
- The Entwined Collective Community Group
- Discussion and support group.
- Based in Auckland New Zealand.
- Holds meetups during the year.
- Qendo Support New Zealand
- A support and discussion group
- Based in New Zealand
- Holds meetups around different parts of New Zealand
- Qendo & CO
- Support and discussion group
- Based in Australia
Thank you for visiting My Journey and Cozy Woodland Cottage Knits!
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