My life with Endometriosis – by Kristel Rennai Dally
As I write this now, I have a wheatbag clamped between my legs. I’ve spent three days not being able to keep food down and I’ve spent endless hours in the bathtub because it’s the only place I can get any relief from the relentless ache of my vaginal muscles. Every now and then I would feel like I need to go to the toilet so I’d jump from the bathtub to the toilet where I’d sit shivering and sweating, vomiting into a bucket because the pain was so extreme. And as far as sleep goes, I haven’t had any. I’m exhausted.
Endometriosis isn’t a pretty disease.
It’s not life threatening, but it is debilitating, progressive and at this point in time, incurable.
It’s a disease that has dominated my life for the last 10 years.
I’d always had heavy periods but as I got older they got worse.
I started experiencing more and more pain and the bleeding would regularly be so extreme I would bleed through super tampons paired with pads.
I had tried multiple different types of pills and contraception’s to try and help with my symptoms. I got migraines and depression on the pill, I bled the entire time I had the implanon inserted and my body rejected the Mirena by rebelling emphatically with a painful infection.
I am the epitome of Murphy’s Law in medical form. If something can go wrong, it will.
After years of seeing multiple doctors who didn’t know what to do with me and one who I vividly remember telling me to just ‘toughen up’ as I burst into tears of frustration and despair, I was finally referred to a gynaecologist who I shall call Dr. Useless in the interest of protecting his true identity, not that he particularly deserves that courtesy.
Dr. Useless was a Catholic gynaecologist, who didn’t have any interest whatsoever in helping me. His initial response to my crippling periods was, ‘you should have a baby.’ I was about 28 at the time and there was no way I was going to have a baby with my then partner just to fix my period problems.
I pushed him for x-rays and when he discovered an Ovarian Cyst he recommended an operation to remove it.
Dr. Useless in all his useless glory botched up my operation. I’d had a kidney operation when I was a kid which apparently had left with me with some scar tissue that made it difficult to operate around. So, he drained the cyst slightly and got the heck out of my insides. In doing so, he managed to allow for an abscess to grow in my tummy. It grew and grew and my 3 day recovery turned into me being in a wheelchair, unable to move or even sneeze without extreme pain. I was shivering and shaking and finally, my mum made Dr. Useless see me even though he had no interest in doing so.
When he finally saw the state of me he realised he’d made a mistake and so on Christmas Eve, I went to hospital to have an emergency abscess draining procedure. Later that night the rest of the abscess burst, with puss oozing out of my belly in a disgusting Christmas miracle that resembled some kind of horror film, I started to feel instantly better.
Finally the infection that was poisoning my blood was expelled from my system.
Not really knowing that I had any other options, I kept seeing Dr. Useless after my operation.
To be honest, Dr. Useless didn’t even care enough to know my name. I’d been seeing him for three years, he’d cut me up and operated on me and still had no clue who I was. What a champ right?
I remember one appointment where he wouldn’t even talk to me until he had my file. We just sat there in awkward silence.
Every time, I’d go to see him, I would leave crying, feeling more and more helpless and defeated and $160 poorer for the privilege.
Not once when I explained my ailments did Dr. Useless suggest that perhaps I might have Endometriosis, despite the fact that I suffered from almost every symptom and I didn’t really know enough about the disease to push for a diagnosis.
I just knew that I was in extreme pain that was causing me so much distress I literally didn’t know how I could continue to live through it. I just wanted to die every month. On top of the actual ovulation period each month I was exhausted all the time, I had horrible adult acne even though I’d had perfect skin most of my life, and I was constantly sick thanks to a compromised immune system.
With every passing month my symptoms got worse and worse until finally, I ended up in emergency.
With this particular period I was vomiting for three days and I was in the bath tub for hours before getting out just to writhe around on the ground because there was no position I wasn’t in pain. I couldn’t even keep liquids down and I was so distressed my mum took me in to the emergency ward at Ashford. They immediately hooked me up to a drip and put me on pain relief and started running tests.
My assumption was that they would treat me with the same lack of concern as Dr. Useless always had and just shuffle me on home but instead, the wonderful doctor who was in emergency that day tested me for everything under the sun and arranged to keep me in overnight. He then put me on to a gynaecologist called Dr. Brilliant (ok, not his actual name, but totally should be).
I remember meeting Dr. Brilliant for the first time in the morning when he came into my ward. He had read all my notes, new exactly what I’d been through prior to being hospitalised and even knew how to spell my name. I know the name spelling thing doesn’t sound that impressive, but when it takes your own relatives 20 years to get it right, you know someone’s been paying attention to get it right off the bat.
Dr. Brilliant basically said, you need to have surgery and you need it asap.
He was sure I had endometriosis and a laparascopic procedure was the way to diagnose it and remove it.
He was astounded at Dr. Useless’ negligence and said that as soon as he had realised that he wasn’t competent to deal with my issues after that first surgery, he should have immediately referred me on.
This was all happening at an incredibly stressful time of my life as well. I had just quit my permanent job as a department store makeup artist and was due to move two states away to begin my first ever job as a radio announcer in Lismore, New South Wales.
The operation was going to put my move back and all I could do was hope that my new boss would hold my position for me.
So the surgery went ahead.
Dr. Brilliant organised special robot hands to operate on me to work around the scar tissue.
Pretty cool really.
He did say there was a chance they would have to open me up when I was under the knife which would delay my recovery and move interstate even further so when I woke up the first thing I asked the recovery nurse was, ‘did they manage to keep it keyhole?’ and when she said yes, it was a massive relief!
The other massive relief that came from the operation was when Dr. Brilliant came to visit me after the op and explain that I had been riddled with Stage 4 Endometriosis. Finally I had hard evidence that what my body had been battling with all these years was a real, medical condition and was 100% not a figment of my imagination. It was incredibly overwhelming to have someone say to me, you’re not crazy. The flip side to that was learning that Endometriosis has no cure.
Endo itself is a condition where tissue similar to the lining in a woman’s uterus begins to grow in other areas of the body and can cause extreme pain, nausea, chronic fatigue and sometimes infertility.
The Endometriosis Care Centre of Australia describes Stage 4 Endo as when there are extensive implants and severe adhesive disease. Adjacent organs are usually involved such as the bladder and bowel. In some cases the normal anatomy of the pelvis can be grossly distorted. Endo has even been found on the lungs and brain in some cases with one woman suffering 5 lung collapses throughout her endo journey.
In my case, I had lesions everywhere and Dr. Brilliant managed to remove them.
My periods were far more manageable for a while after that, but part of what makes Endo so mentally difficult to deal with is that it will just keep growing back. Which is exactly what it has done.
I’ve also since found out that at 35 years old I have the fertility of a 45 year old woman. While Endo doesn’t always affect fertility, but it does in some women. I can’t even explain how angry this makes me at Dr. Useless who wasted so many valuable years of my life failing to do his job for me and costing me precious time to consider my fertility options.
I’m about to undergo my third round of surgery which I’m not looking forward to but I’ve come to the point once again where I have no choice.
The surgery’s aren’t small. Every time I have it it’s like physically going back to square one which can be mentally tough. I hate that it keeps me from cheerleading and dancing for ages.
But I can’t keep taking time off work and more importantly, my body can’t take the pain anymore.
There are so many things that girls/women with Endo have to face.
There’s a massive lack of understanding.
There’s wondering how your romantic partners will deal with your condition. Will they be supportive or will they act like a 4 year old at the mention of periods? Now, I literally tell guys on the first date about my condition and their response tells me instantly if they are the kind of guy I want in my life. Will they be open to IVF or adopting kids if it doesn’t happen naturally?
There’s feeling guilty because you know that others are dealing with life threatening diseases and so you feel like you shouldn’t really be complaining.
And how will your employers handle you having time off when you’re incapacitated? Will they take Endo seriously or just think you’re bludging?
I’ve been incredibly lucky in my past couple of jobs to have worked for people that have been supportive of my situation. The problem is that because Endo is to do with ‘girly stuff’ it hasn’t really been taken seriously and a lot of people are embarrassed to talk about it. There’s an extra level of stigma attached.
This needs to change.
Endometriosis is a serious, debilitating disease and the women who suffer from it are soldiers. They aren’t just little weaklings who need to toughen up and get over it as has been the view of many for a long time.
Finally, there seems to be a shift in attitude happening.
Just recently, the government in Australia issued an apology to women suffering Endometriosis and said that they would be throwing funding towards research.
After my next lot of surgery I’ll be trialling having botox injections into my pelvis to try and relax the muscles and prevent the agonising ache that comes from constant muscle contractions. These injections aren’t funded in anyway because they are viewed as being cosmetic.
I mean really? I’m not overly concerned about having a wrinkly uterus/vagina, just kind of don’t want to be in debilitating pain anymore…
Hopefully, there will be a swift change and soon there will be more funding to help with Endo treatment and one day perhaps, even a cure will be found.
The biggest thing that I would say to young girls now would be ‘you know your body better than anyone, so if you know there’s something wrong, get a second opinion.’
Don’t lose years of your life being told it’s all in your head because that is total bollocks.
It’s hard for me to even talk about endo without tearing up because I feel like it has stolen so much of my life. And the feelings of absolute helplessness are never far from the surface when I think of all the times I was told there was nothing wrong with me.
It was the most vindicating moment for me when I was finally diagnosed. It was the biggest feeling of relief to know that I finally had evidence and there were people who took me seriously and genuinely wanted to help me treat my condition and get my life back.
Endometriosis can be very mentally draining. Knowing there’s no cure and that every month you are going to be in extreme pain and that there’s nothing you can do about it, wondering how you’ll get through it and how it will affect your job and everything else you have going on is a lot to deal with and I’ve made the decision to live twice as well when my body will allow it.
We just need to keep talking about endometriosis and raising awareness. And it shouldn’t just be talked about amongst women. Men need to be educated too because with one in ten women diagnosed with endometriosis, it could easily be your mum/sister/girlfriend/wife or daughter suffering.
And to all of you who are living with Endometriosis, you are so much tougher and braver than most people will ever know. And you are absolutely not alone.
For more info on Endo a great starting point is www.pelvicpain.org.au
Kristel Opens up about living with Endometriosis
Dr. Susan Evans - Gynaecologist, Specialist Pain Medicine Physician and Co-Founder of Pelvic Pain Australia Foundation