“It’s not me, it’s you.”

After reading many articles online, about the subject of endometriosis, I found one that said that wrote that there is a huge stigma around discussing infertility, even in a western country known for nurturing free speech and democracy, perhaps due to the fact that most people don’t know how to deal with it. Finding out your friend or family member can’t have children of her own is a saddening thought, but in my experience, most girls don’t know how to act after you’ve told them (or act like they care). An awkward silence ensues when you’ve just poured your heart out onto the table over an innocent coffee with a trusted friend, for that heartfelt exchange has been cathartic for only one of you. The other is left thinking, “Oh my god what am I supposed to do about YOUR problem? It’s your body, it’s YOUR responsibility!”

Oh, how about, just listening and being empathetic and sympathetic rather than a judgemental douchebaggie? I’m not asking for solutions, only that I know that I’m not alone in recognising that this is a problem that women might face over their lifetimes (10% according to current statistics, will experience endometriosis that may lead to infertility or problems with conception).

Teaching people to have kindness and empathy is probably the hardest thing possible, and even though it’s hard, it’s incredibly important. Often the lessons are learned through experience, but i think it is up to every girl and guy’s duty to pay it forward and be thoughtful and kind and have empathy the next time someone shares a deeply personal worry or medical condition with you. Don’t fill your time with platitudes but instead, nurture that friendship with empathy  and kindness, for you might be in the exact same shoes one day.

I’m not ashamed of my endometriosis – Part 1

I’m not ashamed about having endometriosis which is why I’m pretty relaxed writing about it. Even talking about it in person I’m not so bothered about, but I do notice that the shame or embarrassment belongs to other people, mainly because they don’t know anything about it and go into a default mode of fear/misunderstanding.

I understand. Don’t worry, endometriosis is not contagious. I can’t cough or kiss you and then you’ll suddenly have endometriosis. If you read my not very well articulated post about what I think endometriosis is (please ask your doctor or specialist for a better description than my layman’s attempt!) then you’ll know that it only affects women for one thing, and is a disease that a lot of women have, globally, but very little is known about it. When I speak to different doctors, they have different attitudes about it – some are blasé, like, ‘Oh, don’t worry, it’s really common’, as if you’re talking to them about a cold, and others are stern and concerned and do a million tests and frighten the life out of me as to whether or not I’m planning to have children and if so my biological clock is ticking and that endometriosis acts like a tumour, “Oh but don’t worry it’s not cancerous…” Not unless you have endometrial cancer which is a subject I am not going to let myself have a heart attack about right now because that’s a bridge I never want to cross.

I’ve had a few years to stew about endometriosis and only now am I realising the full and deep impact it has had on my life. For my entire life from puberty to today, I’ve always been taught that painful and stressful periods are totally normal. Pelvic crippling, spontaneous bouts of pain coupled with see-sawing hormonal-based mood swings were all part in parcel of being a woman. Yes, they are, and no they’re not. The reproductive system for both men and women will endure a time of awkward and uncomfortable change, but I don’t think women should accept that physical pain that makes you cry, every single month, is normal. Your mum, your sister, your daughter, your aunt, your girlfriend, your wife… all those women. The symptoms of endometriosis should not make all those women you love and respect so much, suffer so horrendously every single month.

I have one brother who I have never been encouraged to discuss such things, and a mum who believes wholeheartedly that it’s completely normal to feel horrible every month for the rest of your life, because her sisters went through it all, her mum went through it, and even my dad’s sisters and mum went through it all.

It was all completely normal for us. But there weren’t only physical consequences, but also emotional ones. The stress caused by the endometriosis did not just affect the women, but the men who were there to support them. The harmony within families suffered because of this disease. Relationships were strained and even ended as everyone struggled with their own internal confusion as to why things were the way they were and why I was the black sheep of the family and everyone else turned out fine. Why couldn’t Liz just behave and act normally like everyone else? Everyone else was going through it so, why was she any different? Was her depression simply a ‘boy who cried wolf’ type scenario? Did she put it all on herself because she didn’t work hard enough and perhaps, maybe, even deserved it?

I always felt different and I was always a sickly child who hated sports but didn’t mind physical activity that I could do in my own time. Having had a loving but financially poor family home as my upbringing, we were resourceful and I missed out on a few opportunities but was lucky enough to go to a good school, go to a good uni, go to private college, get disappointing jobs despite all my tertiary education and have relationship heartbreaks along the way. I was always reminded of the fact that people would silently remind me that I was the black sheep because I wasn’t sporty or outgoing enough and was prone to dark moods. I started to think that even though I loved children, I possibly shouldn’t bother having them because I wouldn’t want to pass on all those traits deemed socially unacceptable, to the poor unwitting child. I was sad, happy, up and down and just barely trying to keep myself together.

But when I got the diagnosis that I had an aggressive form of  Stage IV endometriosis I was gobsmacked. Gone were the carefree days of, “well, when I can sort myself out, I’ll think about having a baby.” The doctors told me if I didn’t act now, I may never be able to, even artificially. IVF is no walk in the park and is no guarantee of insemination as our bodies are all different and factors like timing, egg stores, sperm motility, and other health issues. Clinically, it sounded reasonable and well articulated. In my mind though, I was screaming, “DOES THIS MEAN I’M EVEN A WOMAN?”

I cried for weeks… months… I have cried on and off over years wondering whether to decide to be a frankenstein patient and let my body take another battering or just… give up. It made the already existing depression worse and I spiralled down into a deep state of denial and self destruction for a while. My life was unravelling fast and I didn’t know what was next. I felt like I had come to the very end.

To be continued…

Recovery and support at home – don’t go to the pity party

The first time I went to hospital for anything gynaecological, was in late 2011 (I think?) when I doubled over in pain after pottering around the house and it felt like something had exploded inside my abdomen. It was the worst pain I had ever felt in my life and I was struggling to crawl around the house. I had no idea I had anything wrong with me gynaecologically, so I thought maybe my appendix had burst, because I had heard the pain with that was normally quite bad. Mark had just come home so we rushed to the closest hospital ER near us.

A day later I’d been transferred to a larger hospital that had gynaecological specialty facilities and staff. The hospital was public, so they were typically overworked and understaffed and the ambulances were backed up in ridiculous queues. People were dying in those queues and no one could do anything about it. The system was itself in a critically ill state, and it would take a few deaths and a few years before it would be somewhat corrected (I doubt it’s even really much better now but I don’t know for sure).

After some initial investigations, ultrasounds and poking around, they concluded that it wasn’t my appendix, but they couldn’t tell what it could possibly be until they had a look through surgery. They made an assumption that I had just checked in to get pain meds because apparently that’s what a lot of people do at hospitals, sadly, so I got lumped into that category too. I very politely kept my ground and told them that I wasn’t imagining any pain and that the pain was real and in certain areas of my abdomen to which they said they’d get me into theatre but that I’d be extremely low priority. I was thinking that I should just get out of that hospital and try a private one, I didn’t care about the excess I’d have to pay, at least  I’d have someone possibly take me seriously, but even trying to check out of hospital was discouraged, despite them being extremely weary of me having anything wrong with me to begin with.

Once they had decided I wasn’t a drug addict, I was placed in pre-op mode for several days, meaning, I was on a drip, not given anything to eat or drink by mouth in case I was going to theatre at a drop of a hat. They always promised that, but it took several days before finally a surgeon came down and asked me if I’d even been in surgery yet (it was day 3 by then) and I said no one had taken me to surgery and I had basically been fasting for 3 days. (After which he consulted his boss and they took me to theatre straight away).

While I had been waiting for my operation, I was in a ward with 4 other women – the lady to my left had just had a baby, the lady to my right was suffering bladder problems, then across the path the woman to my front left was 8 months pregnant with a broken pelvis and the girl to my front right had been pushed through a glass door.

I definitely had nothing to complain about when I learned what all my neighbours were going through.

The girl who had been pushed through the glass door was a particularly sad case. She was very young, by the sound of her voice, and I had watched her walk past my bed and through the tiny gap of the curtains, had noticed a waif, 14 or 15 year old girl breeze casually by. I didn’t see the glass embedded in her arms, back or legs, but only knew of them when the doctors, nurses and police came to visit her and ask how she was. She was also waiting for her operation.

From the police visits and the nurses conversations, I had learned that it wasn’t a drunken circumstance that left the girl in hospital, or a fight with her boyfriend or a silly prank with friends gone wrong. She had been pleading with her mum to let her stay with her dad and in a fit of rage, her mum pushed her backwards through a glass door, leaving her with glass embedded everywhere in her body but her face and front section. The police asked her whether or not she wanted to press charges against her mum and she fought back tears as she said she hadn’t yet decided. When the police had left, she cried and cried and called her dad and other members of her family on the phone to ask their advice. No one was coming to see her because they lived too far or were too busy. She was alone to make the decision about whether or not to press charges against the person who put her in hospital; her own mother.

At that point I was sobbing in my bed, trying not to be heard, as everyone else had already had visitors of their own – partners, boyfriends, family, neighbours…. except this girl. I felt guilty that she should go through such a nightmare like that at the hands of her own family members and guiltier that she had no one to help or comfort her through it. The pregnant lady who had fractured her hip, had tried to sooth the young girl from crying, saying she’d be ok and that  people were around to talk to if she needed. The girl sniffled and said thanks, and soon after she was wheeled away to theatre, and never returned.

I always think about that ward and especially that girl, whenever I feel alone and unsupported. I know that I’m not alone and that people are doing the best they can to be there for me and the memory of that girl always reminds me to not take the support I have for granted. I had a particularly bad day yesterday where I found myself feeling incredibly lonely even though my partner was in the house, but he was too busy playing with his friends and I felt like it had been his duty to take care of me first, so it upset me greatly. This morning, I thought of that girl, and reminded myself to leave the pity party.

I know I have enormous support from my family and friends, and even though they can’t physically be with me during the times I feel the loneliest, I have to remind myself that they are there and I can reach out to them for anything. I am really lucky, to the point of being incredibly spoiled and bratty sometimes 😉

For anyone going through any sort of illness at all, if you’re ever in a spot where you feel like no one is there for you all I can say is that when you reach out, someone will always reach back. The internet has especially made that infinitely possible.

Oh I forgot….

So, what is endometriosis?

It is when the lining of the uterus grows outside of the uterus and can literally grow everywhere else – on other organs, etc. That is a very basic explanation, but when I first got diagnosed, I had a giant cyst on my ovary that burst and sent me to the emergency room and that was the start of this whole new learning process for me  and learning that endometriosis can grow anywhere in the body like a cancer (although it is benign) and forms scar tissue wherever it goes. Some people even get it in their lungs. There were some cases where even after full hysterectomy, the endometriosis grew back.

I also learned that it is a very common condition, that 10% of women in Australia have it (knowingly or unknowingly) and that we know nothing about why it even does the things it does.

There are some floating theories around but it’s a whole new world of study  and science while many women suffer in silence over some of the most painful and brutal symptoms anyone could endure.

If it was visible, like, a bruise or a break out in hives, it would be more respected, understood and therefore easier to pigeonhole. But it’s deep within our bodies, invisible, and pervasive. Please keep this in mind when you see a lady having a particularly bad day or see your sister crying over nothing. It could be something or it could be anything or it could be nothing. You just never know.

Be compassionate and talk to one another. This runs in my family on both sides, something I learned far too late in my reproductive life but can still do something about. You can too.

I hope this blog helps you to understand, whether or not you’re going through the same thing or whether or not you’re trying to understand the condition for someone you want to support. We can all support each other through listening, talking, having empathy and truly making an attempt to understand.

Take good care of yourselves and each other.

The Endometriosis surgery went well

I had surgery yesterday morning – I got to hospital at 6am and was in theatre on time at 7.30am after all the administrative process were done and I was finished being prepped. There was an additional doctor there observing the surgery who used to be my OB’s boss, but now is doing more research projects – I had signed up to be one of his research participants and he was there on an observational basis because I had been one of their more perplexing cases when we tried 2 cycles of IVF and failed in late 2012.

I remember feeling more anxiety as I was wheeled into the theatre room full of people in masks. I’d been through all of it before, with the IVF egg retrieval, the first round of endometriosis investigation and prior to that, in a different hospital where they cleared out a cyst that had burst (that was my first encounter with even knowing I had endometriosis).

The anaesthetist and his assistant screwed up putting the first canula into my arm, he apologised and tried again, and his assistant then put a mask over my face telling me that they were going to give me something to relax me. After that, I was suddenly in recovery, being coaxed awake by a gentle male nurse who was asking me how I was and my name and date of birth.

I don’t remember much in between that and being moved to my bed, only that I was in a lot of pain, more than the first laparoscopic procedure for endometriosis. They had done an additional procedure, a hysteroscopy, to examine the uterus as a fibroid appeared on one of my scans where it had not appeared during the last round of surgery. Last time my left ovary was stuck to my bowel, and that was the case again this time around. They were worried there were going to be more areas of disease stuck onto the bowel this time around because my symptoms were quite painful this year. Thankfully, that was not the case, and even better, they were able to flush fluid through both of the fallopian tubes (something they were unable to do last time – the fluids were stuck). The left fallopian tube was very damaged and was at risk of being removed, but with the fluid moving through it, the doctor decided to leave it be. The fact that fluid is going through the tubes is a good sign for fertility indeed.

I have one frozen egg left from my last egg retrieval. I have an appointment with the doctor at the end of next week so we’ll do an action plan from there on. Depending on when the egg will be able to be transferred depends on when the IVF clinic is open/closed over the December/January break and also will depend on when my next cycle is due.  We’re probably going to do an IVF cycle in January and in the mean time, I’ll be taking some medication to make sure the endometriosis shrinks in my body. The last time I took such medication, it had terrible side effects that made me drown in dangerous moods. Playing with hormones is really like playing god with your emotions and sometimes you have to question whether or not you really want something at the expense of your own sanity.

I’m at home now, sore but recovering and resting well, and I’ll have 2 weeks off work in which to sort out other things that I can around the home. I won’t be able to drive for a few days but that’s ok as I don’t want to go anywhere. I might have a belated birthday party on the 7th of December (my birthday fell on a wednesday and the following week was my surgery) but we’ll see how I’m feeling. Today is a really good day and I am keen to get back into my routine and probably into blogging and writing and seeing if that’s a good path for me to follow for the future.

Thanks for reading, and coming along on this journey with me. There will be much more to tell and more roads to follow. Until next post!

Low Residue Diet Starts Tomorrow – 4 Days Til Surgery

Well, hello first post. I’m going to transfer some anxiety from myself onto you, little blog. I’m 4 days out from surgery and there are things to be done beforehand.

Tomorrow I will have to start my low residue diet in order to prepare myself for a bowel prep, necessary in my case as the doctors suspect that, like the first time around, there is endometriosis growing on the bowel. So, I’ve got 2 surgeons having a look laparoscopically, and I’m hoping there isn’t anything too wrong… but they won’t know for sure until they have a look. I actually hated the prep the most, the first time around, and that will be another post in itself, maybe… probably.

I’m anxious this time around, more than the first, probably because I kind of know what to expect and I also don’t. I have both the fear of the unknown and known, working for and against me. I get this weird feeling of anticipation and dread at the same time, anticipation that I’ll finally get some more answers and dread that maybe they won’t be the answers I will like.

Surgery is on Thursday, I’m scheduled to be first up, but that doesn’t really mean anything, it just means I check in super early in the morning but might not get onto the operating table til a few hours later. I’m kinda hoping it means all the staff will be bright and chirpy and ready to go, but, given the crazy hours doctors and nurses work, that might not be the case for all of the staff. I’m confident I’ll get adequate care from the hospital, but I’m also nervous that I’ll not get to stay as long as I need to as all hospitals are so desperate for beds, even the private ones. I fantasised about checking myself into a hotel room for a few days after surgery because then I wouldn’t have to worry about much and would have a forced rest, but the budget says no… especially after the deposit for surgery and the estimated bill from the anaesthetist. Argh! I understand healthcare workers have to charge a lot and I’m very, very grateful for universal healthcare here in Australia, but the bill is still a big shock.

This post is very disjointed and I normally dislike posts that ends with a paragraph critiquing the actual post, but I’m trying to unload a bit of anxiety, I think, before bed. I already have lots of trouble sleeping and it is compounded at the moment.