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…

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!