As a young girl at 12 years old a period seemed exciting as it meant becoming a woman, how wrong that 12 year old girl was. Pain began instantly, I was told it would get better as I got “used” to having a period, how wrong that information was.
Starting with moderate pain between periods and feeling like something was always sore in my stomach. Multiple doctors trips, scans, and all the wrong testing because a young girl could never have issues with her woman department.
Schooling was hard, maintaining severely heavy bleeding and excruciating pain. “It’s just a period suck it up”. By the time I was 16 I was bleeding for 3 weeks of every month, some months it was a couple of days followed by a few off however the pain didn’t take a day off. I remember telling my mum at just 17 that I imagined this pain was what it would feel like to have a miscarriage as if every time I was having a period I’d imagine that’s what this felt like. Back to the doctors to be told “you are young, it will come right when you get a bit older”.
Several hospital admissions with no findings and no hard work to do any testing. Mood swings were horrendous and it was all put down to feeling grief in my stomach. To be told my body reacts to grief through my stomach and perhaps some counselling would “fix me”. I admit the grief of suicidal death at a young age is extremely hard to comprehend and I agreed counselling was appropriate. The more I dealt with my emotional pain the worse the pain in my stomach was becoming. I tried going gluten free, was told I had a stomach ulcer, was told to continuously change my diet to which nothing was relieving pain.
At 18 years old I had a long hospital admission and my first surgery on my stomach. My appendix was removed and they did not even bother to check my ovaries. Waking up from surgery I was still in pain as if nothing had changed. They put it down to me being “sensitive” and after surgery pain. The pain did not get any better. Only two short weeks after this operation I was in a extremely serious motor vehicle accident where I broke my neck and back and developed a brain injury. After the motor vehicle accident my stomach pain started to also become more severe. Again it was put down to being in an accident and that it would get better. It did not get better. Among dealing with seriously painful injuries I still had ongoing excruciating pain in my stomach and it was always on the left side. I experienced my first miscarriage at 18 and a half years old, I could not understand why I would have a miscarriage when “nothing was wrong with me”. Funny enough the pain I felt during periods was definitely not far off the pain of my first miscarriage. This is when I knew I needed to start fighting for answers.
Period pains got worse and so did the in between bleeding pains, no pill managed to keep this under control nor would it control the bleeding. I found out about Oxford womans health and they have been my saving grace. Diagnosed with stage 3 endomentriosis close to my 19th birthday and after this laparoscopic surgery for the first time I felt relief from my symptoms, I no longer had sharp stabbing pains, aches in my back, pain down my legs and severe cramping. I thought I was finally on the road to recovery. Following this I was told if I want children I needed to act fast due to the damage found internally during surgery. So that’s what I did. Miscarriage after miscarriage the pain started to grow stronger again and I’d mentally lost all hope. I stopped trying and decided to focus on what was going on in my life instead.
A f**king miracle happened when I found I hadn’t bled for 3 weeks and decided maybe I’ll take a test. There they were again two pink lines. This time they appeared straight away , they were bold and I felt different. Pregnancy wasn’t easy, I had multiple big bleeds which caused so much fear and anxiety. I worried the entire time I was getting my hopes up because as far as I had seen my body was not capable. Through a hard pregnancy I managed to give birth to my rainbow baby, he was perfect and to this day is still my biggest blessing and in fact my life saviour. I thought after having my son things might get better. Oh how wrong I was.
I cannot count the amount of surgeries I have undergone since giving birth on both hands. Having 4-5 surgeries yearly to remove endomentriosis,cysts, internal bleeds etc. This time round I was more motivated to get answers and not have to keep undergoing operations. I had a son to fight for and be well for. The endo spread to my bowels over time and caused more problems. Several more miscarriages and surgery seemed to just become a routine. The pain was always on the left hand side and I knew from the moment I was diagnosed the left ovary needed to go. It was a fight for years and years to try and have it removed. “You are to young” “this is just what it’s like to have endo suck it up” “have you tried this” it was degrading, I felt stuck and like no one was listening. My body was suffering I could not continue to have the amount of surgeries I was having.
At 23 and a half my worst nightmare happened and it was something I had feared would happen. Two pink lines, with the internal feeling something is wrong. In the weeks leading upto taking this test I’d had belts of pain where I could not even sit down, where I’d contemplated ringing an ambulance but I knew it was a waste of time as the public hospital have never taken me seriously. I left it and confined about my week. Two days after finding out I was pregnant severe pain in my left ovary started, pain I’d never felt before, I started bleeding and decided although the hospital don’t take me seriously they would have to this time. Again I was wrong.
I was not in my hometown I was elsewhere so thought maybe it would be better. I was admitted over night and when I woke in the morning the pain was so bad I could hardly move. The nurse come in and told me “it’s just endo I have more important patients to deal with” as she was saying this I felt this horrendous popping stabbing feeling and I could feel blood gushing down my legs as I was begging her for pain relief and a doctor. She did not come back for over half an hour and no one come in to see me, I went to my scan with no pain relief as no one had returned. During the scan she stopped and asked me where my pain was and if I had any in my shoulders which I did. I was internally bleeding behind my ovary as she found the pregnancy situated on my left ovary. A very rare form of ectopic pregnancy. Going back to the ward I thought well they have no leg to stand on now I should be going into surgery. No. I was told it will just bleed out like a period and that the sonographer could not medically diagnose me with an ectopic pregnancy. It was “just a miscarriage”. I discharged myself and got myself home to my hometown where I went straight back to the hospital. I was told at my hometown hospital that I’m under Oxford womans and they can sort it out as Dunedin had told me it was “just a miscarriage”. Oxford womans do not perform acute surgery but they managed to get me in 5 days after this, with insurance this was stressful but we knew there were no other options. Those 5 days were horrendous I was bleeding, in so much pain, I could not hold down food, I could not parent. I could barely stand up. Going into surgery with Oxford womans I knew I was in safe hands. I had a ruptured ectopic pregnancy on my left ovary just like I’d been told during my scan. I had endomentriosis all through my left ovary and bowels. I was extremely lucky to be alive. Following this two months later I undertook another surgery to clear out more endo and adhesions. This time when I woke up the pain didn’t go away. I was still bleeding from when I started in the January with the ectopic pregnancy and I bled almost every day right through to June.
My pain did not go away and I arranged with Oxford womans to finally have my left ovary removed as I was not healing and I knew it needed to go, I felt myself it should have gone when I had the ectopic. Sadly I endured an illness which involved more surgeries and treatment this overtook getting my ovary sorted. This postponed my ovary being removed by 4 months. And then we have the Aotearoa famous level 4 lockdown.
Level 4 lockdown of 2021 yet again delayed treatment for my ovary being removed, like everyone else awaiting private surgery this was extremely frustrating. However 4 days into the level 4 lockdown I began to bleed severely and I could not stand up due to pain. I was admitted into the hospital without support due to being in lockdown. The doctors just wanted to drug me up, and not do anything about the pain due to being an Oxford womans patient. When I say I fought for my rights, I was begging for them. I mentally was done after 3 days of fighting with doctors that I lost all will to live and become suicidal. Although I was suicidal I knew that I had my little life saviour at home and if I couldn’t mentally fight for myself, I had to fight for him. I had nothing left in my tank other than excruciating pain. I was mentally done, the surgeon come in and told me “after consideration due to your mental state we will operate so you don’t do anything silly but we will likely leave the ovary in and Oxford womans can remove it if they wish”. This shattered me, I did not want to go under and not have it removed to then have to go under when we come out of lockdown. The treatment at the public hospital was absolutely disguisting and I was so broken I had no hope. I saw a different surgeon when I was in preop about to be put under. I showed her the scan of the ectopic pregnancy on my ovary with the internal bleeding, I was crying as I told her how her staff had treated me and that no one has ever listened to me here. But she listened, however she wouldn’t of had a choice. I woke up from surgery to be told my left ovary was black and there was so much damage that even though she had made the decision to remove it for me after talking to me, they would not of had a choice. I was lucky I kept fighting and did not go home, I may not have made it past the weekend. After years of surgery and fighting for answers and to have my left ovary removed, the day had finally come.
I shared this story on social media so that other woman know to keep fighting no matter how much you are ready to give up. Trust your body, trust your pain. Nobody knows your body better than you do.