Since I was a Teenager , I was always nauseous, I had no appetite and had a lot of stomach pains. I was very Lethargic a lot , like too tired to go to family birthdays etc but most of my pain was my lower back and my ovaries.
My mum would take me to the doctors many times and I would be dismissed every single time or encouraged to go on the pill. ( we tried it and i gained so much weight, it was affecting my mental health , so we stopped it )
My mum explained I had become like a zombie and I wasn't myself anymore. We agreed at 14 I needed something else ( I was not even sexually active)
I made the very silly mistake of agreeing to the implant. I bled for 12 months straight and I was advised by my doctor it was perfectly normal , so I kept it in for 3 years where I bled the entire time.
When that implanon expired , I was then given another , which after a few months of non stop bleeding we requested it would be cut out!, The doctor actually refused, he explained unless your having an allergic reaction ,we aren't allowed to remove it, I went to extreme levels and I grabbed the scissors on his desk and told him ," I will do it myself " the doctor looked at mum and agreed to remove it . ( I wasn't really going to cut it out , but I knew he would if i could prove how badly i needed it out)
After years and years of searching for answers, I decided to look into Endometriosis and started booking to see other doctors , I never gave up looking for answers.
Fast Forward 15 years later and I wanted to have a baby, we tried for a year and we did a test and it was positive however it turned out to be a phantom pregnancy! Mentally this broke both of us , and we had never even heard about such a thing , until my doctor explained it all to us , my body had tricked itself into believing we were pregnant , even my sticks I peed on said yes, but my bloods said no and my HCG said yes !
It was a very emotional and confusing time , I felt like I still grieved as I watched my tummy go down over the 6 weeks .
We were booked in for some blood tests and were told the devastating news, I would never have a baby due to my recurring cysts on my Ovaries, but again I never gave up.
After two years of trying , I finally got pregnant. It was not an easy journey , I was in and out of hospital with acute morning sickness, constant Uti's and and a ruptured cysts again.
On the 23rd of February 2012 I gave birth to a beautiful baby girl , but not without a long labour ( Tues -Thursday ) i was induced 11 days over my due date , I felt my body getting weak - the best way to explain it was , it was like I was watching myself in labour from above , yes, my heart rate had dropped and I was slowly going in and out of consciousness , I was rushed up for a Emergency C-section , Baby had gotten stressed from what was happening to me and pooped inside , we had to get her out fast , so she wouldn't swallow it , choke and die.
From the minute we left the delivery room , I don't remember anything. I have had to go by what I was told by my mum and partner at the time.
I was not allowed to meet / hold the baby for hours as when they did give her to me I was so weak I nearly dropped her.
This was one of the scariest moments of my life.
Unfortunately I don't have my daughter in my life anymore. I was going through Domestic violence for 17 years, and sadly our justice system is a joke , they factored my health in the custody battle.
So not only have I had to struggle with my health , I was also fighting for my rights as a mother of the only child I can have while he has 4 others. I was given part custody but since court ended after 9 gruelling and painful years , her father ran away with her. It's been 16 months since I had contact or saw my daughter , and I was told when she is 18 she will then come find me.
Back to my story ...
I managed to get pregnant again in 2015 and I was blessed with twins , at 11 weeks I was told the devastating news, Baby A had passed away , but Baby B was still only just with us , I was advised to terminate my pregnancy as I would lose baby in a few days , due to the heart beat hardly flickering on the screen and you couldn't hear a heartbeat at all.
I agreed. It was out of my control and I was wheeled straight in for surgery , I lost two babies that day.
Over the years my pain became aggressively worse , I was vomiting, fainting, losing weight , bloating as if I was 6 months pregnant,the pain was debilitating. I would end up in the emergency room, given some strong pain relief which actually made me sicker and sent home.
In 2018 we decided I needed to do something about this once and for all,
I booked in with a gyno and we got to chatting, after a few appointments She ordered me to do 4 pap smears, all of them kept returning as abnormal instead of investigating further , she put me in the too hard basket and self diagnosed me , I kid you not , by the end of my appointment based on all of my symptoms she had diagnosed me with cervical cancer !
After weeks and weeks of trying to process the information I had been handed, I had a mental breakdown and was admitted to hospital and diagnosed with Severe anxiety, I now have puffers to assist my anxiety for the rest of my life. My partner and I were handed brochures about it and I was referred to the hospital for a Laparoscopy, Cystoscopy,Hystoscopy and Biopsy !
14 Months I had to wait!
September 11th 2019 I Finally went under the knife.
What was found, even my surgeon was shocked!! I broke down when they told me. For me it was just pure relief , the answers I had been looking for over the last 15 years - I finally had them !!
My surgery was 3 hours and 38 mins , they found Stage 4 Endometriosis, on both my Ovaries, my pouch of Doughlas, my C-section scar tissue, and my bowel, they found Lesions all over my Right ovary from three 4cm ruptured cysts I had over the years ! They found Adenomyosis ,also found chocolate cysts on my ovaries , and diagnosed me with Pcos and infertility.
3 months later I got my biopsy results and it was Endometriosis , NOT cervical cancer!!!! Cheers Doc!!
I did try to take legal action against this doctor but was told I wouldn't stand a chance as doctors are allowed to diagnose as they see fit , determined by the symptoms disclosed to them.
Sadly 6 months on from my surgery , I started experiencing the same pain , but this time worse, I had knife-like pains going up my bottom and I was nearly losing control of my bowels! Also I noticed my period had gone from 14 days to 5 days and as the months went by , it was getting shorter and shorter.
I have been working in retail for over 20+ years , the Employer I was working for at the time watched me collapse from a rupturing cysts! I will never forget hearing him say to his boss on the phone " well it looks like real pain " I was laying on the staff room floor , trying to stay conscious, and also trying not to sh*t myself at the same time! In front of my co-workers , I had also been in pain the entire time I worked for this company , so this shouldn't have been anything new to them , I would be on the floor in tears then casually go back to my desk. I was taken to hospital in an ambulance, I had the week in hospital to recover, I had also caught an infection.
The following week I returned to work , I got straight into it , caught up on everything ( as I was working in personal finance and Retail all in the same store) , to be called into the office within 3 hour and fired ! I worked for this company for 5 years , I knew the reason I was fired was not covid as they claimed, as no one could do my job and I was actually working 3 departments !!
Did I take them to court ? Absolutely I did ! Did I win against this million dollar Business ? you bet your ass i did !! Let me be clear about something, I didn't do it for the money, I did it to show this company and others,who think it's acceptable to fire anyone who suffers from chronic illness , it's not ok !!
Still with me ?... Amazing
In 2021 , I tried again for a baby , it was not a matter of wham bam thankyou mam , it was so many blood tests, iron infusions ( which i now have to have for the rest of my life) , extra vitamins , strict diet ( no caffeine , low sugars ) ,we had our first scan at 4 weeks , I refused an internal, we were told they thought I may have Ovarian cancer and was not pregnant , despite my pee test reading the 3+ weeks on it and the bulging belly! We were booked that afternoon across the city for another scan , we waited hours for the doctor to call us , yep! We were actually 5 weeks pregnant !!! ( we knew this !!! ) Who do these doctors think they are just casually scaring us with Cancer, it's disgusting they are allowed to do this !
Unfortunately 2 weeks later my almost 1 year old baby bunny died suddenly. The same afternoon from the stress and the loss I started bleeding , I was checked out by the hospital and told the baby was fine .... I carried for another 2 weeks , and went in for another scan , it was then I was told I had infact miss carried 2 weeks prior, my HCG levels were tested and within 3 days I was going in for a D&C. I had had a Missed miss carriage , lost the baby at 7 weeks but carried to 9 weeks 2 days.
We stopped trying for a baby and decided it was best to concentrate on my health once again because healthy Mumma = Healthy bub ( most times )
In 2021 I saw a new private gyno and I explained to him all my symptoms , told him about my formal diagnosis and begged him to operate , at first he refused and we did a bunch of tests , we did the breath test which was for bacteria or IBS , all came back clear, he did bloods, iron levels etc and he also tested me to make sure i was even ovulating anymore. unfortunately I'm not. I had another iron infusion administered as my levels were extremely low.
While this was going on , the hospital where I had my last missed miss carriage had selected me for a fertility investigation, I had lost 3 babies at this stage.
Amongst those test , they too realised i am no longer ovulating , my body doesn't produces folate anymore and both myself and my now Fianc'e have the MTHFR mutation gene , only he has a different variant to mine , which the two combined is effecting me carrying a baby past 7 weeks. We both had to get a bunch of bloods done , they wanted to help us conceive.
However, a week later my Gyno and I decided we needed to go in and find out what else was going on , so 3 weeks later I went in for another Laparoscopy etc !
This time He took a biopsy of under my Ovaries, he found two masses , they came back as new Endometriosis, I had adhesions in places from my previous surgery ( pouch of douglas etc ) my Bowel was attached to my intestines , ovary and stomach lining, i had another ruptured cyst ( he gave me photos , it looks like a big red firework all over my ovary ).
I wish I could say I'm better and in no more pain but I'm not , 9 months post surgery - , 2 months ago I suffered my 4th miss carriage, my heart is so broken from yet another loss, but we refuse to give up !
My pain is next level , I can barely pass wind at all , some days it can take a few days as for the same with bowel movements, some days i can't even make it out of bed , I have no appetite , I'm lucky to eat a whole meal a day. We have introduced more fibre into my diet and it's helped a little, and more water as well, I am now going to be tested for Diabetes and Khrons as well , along the way I was diagnosed Enemic , just to add to the list.
Currently- We are in the process booking another surgery, to really see what has changed over the past 9 months, we are also looking into past Trauma as i have been through alot , we are going to start me on pelvic floor therapy and lastly we are going to wake up my ovaries , which we are hoping my period will last a lot longer than just 7 hours , which makes it impossible to track my cycles !!
One last word .
My story may seem daunting to you and impossible- especially as I am now 33 years old and literally running out of time, but I will never give up! Sure, I lose hope for a little while, but then I get back up and I keep searching for answers , remedies etc.
Our bodies are all different,so we are all on our own Endo/Fertility journeys.If you're not happy with the answers you receive , always get a 2nd and 3rd opinion ,and stay strong, because we are built tough!
Lastly, Thankyou for reading my story, and allowing me to share my story!
Please never stop dreaming , I truly believe I will get my rainbow baby , I just need it to be the right time.
Much love Shamika xxx