As I’ve mentioned before, the FibroTroll has a lot of friends (co-morbid conditions). One of the many that I also have the “joy” of knowing, is endometriosis. I wrote a little about it on my post about dysmenorrhoea, and I’m going to write about it again today. In a lot more detail because I’ve just had my second surgery specifically for this condition.
What is Endometriosis?
Endometriosis is a condition where the endometrial cells (the cells that line the uterus) grow somewhere outside of the uterus. Most commonly, this is in the pelvis, around the reproductive organs. However, it can grow almost anywhere. It can affect the bladder, bowel, muscles, lungs, brain and other organs.
The symptoms most commonly are associated with menstruation and the reproductive organs, including long, heavy, painful periods, infertility, pain during sex, fatigue and diarrhoea and/or constipation. It can cause pelvic pain and increase ovulation pain. Symptoms can be associated with where the endometriosis is located, but there is no correlation between the amount of endometriosis and the severity of symptoms. For a more detailed explanation, I have found https://www.endometriosisaustralia.org/ to be particularly helpful.
What can be done?
Diagnosis and treatment generally involve surgery. Some treatment options include the oral contraceptive pill or the Mirena IUD. They are not right for me, but do work for others. I had surgery 5 years ago as it had been suspected for quite some time that I had endometriosis. It was confirmed and then removed. Unfortunately, having surgery to remove endometriosis, does not guarantee that it won’t grow back.
Why did I have another surgery?
Since November last year, I have been having some fairly regular bouts of super intense pelvic pain. I had them investigated and didn’t get a satisfactory answer or treatment plan with conservative management, so I headed back to the Gynaecologist at the start of April and got myself booked in for another exploratory laparoscopy. I had also managed to grow another polyp in my uterus and an endometrial cyst on my ovary, so we decided that he would remove them at the same time.
The surgery is why I’ve been a little quiet on here. On the plus side, I have been recovering much better this time around and I think I have some insight as to why. However, this is turning into a much longer post than I intended, so I’ll save that for part 2!
I know from my various support groups, that there are many people who have both Fibromyalgia and Endometriosis and it’s likely that some people have not yet been diagnosed with one or the other. So I am going to share my experience.
Public vs private hospital system
In Australia we have a public health system. This is wonderful and literally saves lives. However, the waiting lists can be long for non-emergency surgery, so we choose to have private health insurance. I am one of the lucky ones, in that my Knight in Tarnished Armour earns enough that we were able to keep this when I stopped working.
One frustrating thing with private health insurance in Australia, is that the insurance companies only pay a certain amount for any given procedure. Medicare pays for 75% of it and the insurance company pays the remainder. If your specialist charges more than the scheduled fee, then you will have to pay the difference. The good news is, that many specialists choose to not charge above the scheduled fee and your insurance company should be able to give you a list of specialists who are “no gap providers”. Please note: I don’t know how insurance works in other countries – feel free to comment if you like!
This is actually how I found my current gynaecologist when I had my first surgery 5 years ago. He turned out to be a kind, caring doctor who listens and genuinely wants to help.
Booking surgery
I saw my gynaecologist at the start of April and we booked the surgery for the 17th of May at the Greenslopes Private Hospital. It probably could have been a bit sooner, but I didn’t want to ruin our little break by having surgery just before it! That is probably the biggest benefit to private health insurance. Through the public system, the wait for this type of surgery is around 6-9 months. Then if your time comes up, if it doesn’t suit you might be waiting a few months more.
Anaesthetic Specialist
I was booked in and told who my anaesthetist would be and was very happy to discover it was the same awesome doctor I had last year for my polyp removal. I woke up very nicely from that anaesthetic, so I was happy it would be her again.
For those who aren’t aware, the anaesthetist is a specialist in their own right. They charge separately, and while no-gap anaesthetists probably exist, this one is not one. She does have an arrangement with my health insurer, where I pay a lot less, so if you are looking into health insurance it is worth keeping this in mind.
She rang me the night before surgery. I don’t know if this is standard practice, but it’s what she does. We discussed my Fibromyalgia and my need for pain relief, and that I woke up terribly from the anaesthetic 5 years ago, but beautifully from hers last year. We discussed my reactions to certain antibiotics and other intolerances. Again, another kind, caring doctor who genuinely wants to help her patients.
Checking in to hospital
I was sent an online check-in link from the hospital a week before the surgery, which is great, because then you can go to your cupboard and look at all your supplements without having to try and remember them at the hospital! My only tip in this regard is to not trust your FibroTroll brain to get the date right – if you get it wrong the poor admin staff have to fix your stuff up!
My admission time was 1:30 pm, so I could have breakfast which I was very happy about. I made sure to have a high fibre breakfast with a good amount of protein and healthy fats so I would feel full for as long as possible. Please be aware that if you are booked for surgery and your fasting guidelines are different, then follow what your hospital/doctor says!
We arrived a little early (a bit of a miracle for us!) so there was a short wait after the last of the paperwork was filled in. A nurse came and admitted me. she did a bunch of pre-op tests. This included height, weight, blood pressure, temperature and a urine test. Naturally, given that they will be poking around your reproductive organs, they do want to be sure you aren’t pregnant or have any other issues beforehand.
I was then given my identification bracelets, a hospital gown, disposable underwear, compression stockings, and a hair cap. Quite the fashion statement! They also brought me a couple of lovely warm blankets – they literally keep them in a warmer, so they are absolutely delightful when they go on!
The Knight hung out with me for a while and we played some games. We were interrupted every now and again by a nurse coming to ask me questions. It seems to be protocol that a number of different people ask the same questions. Presumably to avoid any mistakes, and I find it reassuring that they are not complacent. Once it was time for me to go to surgery, the Knight took the things I wouldn’t need post surgery home and headed back to work.
Pre-op stage
In the pre-op room I was asked the same questions again, then the anaesthetist placed a canula in my hand and the surgeon came and spoke to me. Then I was wheeled into surgery, the anaesthetist gave me something (I forgot to ask what- I know they joked it was champagne!) – and I remember very little beyond that point. I shifted myself onto the surgery table, I’m not even sure I got myself into the right place! Then everything is blank.
The operation
Obviously I was not awake during this part of the proceedings.
The polyp was removed first via a fancy instrument called a Myosure threaded up through my cervix. I had this procedure last year and when it is the only procedure, it is minimally invasive and not overly painful on recovery.
Then on to the endometriosis removal. Basically what they do, is cut a hole in your belly button and in other places around your abdomen – in my case it was 3 other incisions. They pump your abdomen full of gas so they can see, then insert cameras and lights and instruments. Then the surgeon does the tricky things that he (or she) has trained for many years to do. They have a look around (hence why they call it exploratory), and in my case remove a cyst off my ovary and a bunch of endometriosis.
They squeeze most of the air back out again, in a manner that I can only imagine as an amusing oversized whoopee cushion, but is probably not quite the case.
Then they close you up, and in my case apply a waterproof dressing/glue over the incisions and wake you up.
Post op stage
The next thing I remember is waking up in the post-op room with some nurses being lovely again and trying to get my pain levels down. I’m not going to lie, the pain was pretty high, but they were determined to help. Thankfully, they succeeded and it wasn’t long before I was moved again.
I brought my own food due to my food intolerances, but they brought me a plate of fruit and a green tea to go with it.
Once I had eaten, and dressed and urinated (they like to make sure everything is working properly), it was time to go home.
One of the helpful staff at Greenslopes took my pain medicine prescription down to the pharmacy so that the Knight could pick it up without having to wait. Then they wheeled me down to the car and I headed home.
The next few days weren’t much fun, but I will go into that in more detail in my next post. I’ll also share my tips for pre- and post- op things to do (or not to do!)
Go to Part 2 or Part 3 or Part 4 or the addendum.
