I’m Amy and I have endometriosis (imagining myself in front of a room full of people like an AA meeting) About 7 years ago I was complaining of bad pain and not just during my period (phew got that word out of the way early!) so I did what everyone does and made an appointment to see my GP. The response, ‘I’ll give you a prescription for some pain killers but nothing to worry about’, awesome, nothing wrong with me then. I convinced myself many times that if the doctors were telling me I’m fine then I must be fine. But then I would have a painful period, so bad I’d have to take one or two days off work, and I would come back to thinking something isn’t quite right. This went on for several years, me constantly saying there’s something wrong, doctors saying I’m fine.
Someone told me they had a friend who had success with acupuncture so off I went every week for about 6 months, it actually did help to reduce the pain but at $60 a session I didn’t want to be doing it once a week for the rest of my life. Then I started seeing a naturopath and was taking A LOT of tablets every day, they seemed to help too, but again, I wanted a cure not constant treatment. By this time the pain was getting really bad, a bowel movement during my period hurt so much I thought I might pass out from the pain. I knew something was wrong, so back to the doctors I went, and they would say the SAME THING ‘you’re fine, take some of these’. I can’t even tell you how many appointments I had and how many different doctors I’ve seen, I must have spent thousands on doctor appointments, tests and treatments.
I was finally referred to a gynecologist who advised me to have a laparoscopy, during my appointment he asked me if I wanted to go through the private or public system and I told him I didn’t have private health insurance, he replied with ‘oh it will only cost about 5 thousand dollars’ (HA ONLY) needless to say I went on the public waiting list and waited over 6 months to get an appointment. I really didn’t want to have surgery but at this point I didn’t know what else to do, I was kind of excited to finally get some answers. I was told that if they found any endometriosis they would remove it then and there, I was so happy thinking that by the end of the day all my pain might be gone and not coming back, HA turned out I was a bit too optimistic.
I woke up after surgery and I was so drowsy I couldn’t even dress myself, I think the anesthetist gave me enough drugs to knock out a 150kg man. The doctors came to see me and delivered the bad news, the endometriosis was severe and had spread to my bowel, they couldn’t treat it and I’d need to see a specialist colorectal surgeon. Thankfully my husband was there, I was so out of it I barely remember seeing the doctors. I was moved to a chair and given a drink to try and wash some of the aesthetic out of my system, that came straight back up but they still kicked me out the door, they kindly put me in a wheelchair and said ‘see ya’.
By this point I was so disheartened, I’d totally lost faith in the medical system and was so disappointed that no one listened to me repeatedly saying something isn’t right. I was thinking if only they’d sent me for this test sooner maybe it wouldn’t have been so severe and spread so far…
I went back to the gynecologist who had the results from my laparoscopy, he advised me that because my surgery was so specialised it would be a 2 year wait in the public system so I reluctantly agreed to go through the private system and fork out the money. He sent me off to see the colorectal surgeon who apparently was one of the best.
Before I saw the colorectal surgeon I had an appointment to get an ultrasound to see exactly where the endometriosis was and to try and determine how far into my bowel it had grown, I thought ‘what the hell!? Why didn’t I get sent for an ultrasound to check for endometriosis BEFORE they sent me to have surgery!? Why didn’t the doctors who I had spoken to for YEARS tell me it was as simple as getting an ultrasound to check for endometriosis!!??’ To this day I still have no idea. That appointment was about as fun as stepping in dog shit. Laying there with 3 doctors in the room poking around and talking amongst themselves, I was literally lying there with tears silently streaming down my face.
During my appointment with the colorectal surgeon he told me what he’d do during the surgery, he drew me a diagram of the bowel to show me where the endometriosis was and which part of the bowel he would remove. It was possible that I would have a temporary stoma (colostomy or ileostomy) but it would all depend on how the surgery went. He went on to say that if I didn’t get a stoma and the join in the bowel broke down it would mean emergency surgery and a trip to the ICU, it was then I started crying. A colostomy! Possible trip to the ICU and emergency surgery!?
Phew I think that’s enough heaviness for today, I’ll continue my ridiculous ‘can’t make this shit up’ story in my next post, but before I go, a little bit about me that might lighten the mood. I’m 28, married to a pretty awesome guy, we have a fluff ball cat who is just ridiculous, as any cat lover will know. We’re about to renovate our kitchen which I’m super excited about. I’m on my way to turning into a hippy, composting, making my own perfume and getting rid of as many chemicals in the house as possible. This is my low tox journey.