Looking back now I always knew something was not right. I got my period when I was 12 years old. Every month I suffered with pain, heavy bleeding and clots. Sometimes it hurt with a bowel movement like a knife. I spent the first few days of my period in bed curled up with a heat pack and pain killers. Doctors told me this was “normal” and at age 16 was advised that going on the Contraceptive pill would help. So I did and yes it did help. No pain, light bleeding. I thought great I can get on with my life now.
All was good until at age 23 I came off the pill as my new husband and I wanted to start a family. The first period was horrendous. The pain was so bad I called my doctor in the middle of the night. He came to his surgery at about 4pm to see me. When he had examined me he said “It is just period pain”. I explained to him that the pain was different and so severe, something must be wrong. I had knife pains in my rectum and such bad abdominal pain. But no he said “All normal” and part of being a woman.
I tried to fall pregnant for over 12 months without success, experiencing severe pain every month. Even the middle of my month I had pain, when I didn’t have a period. My bowels fluctuated from constipation to diahorrea. So I was referred to a Gynae. He took my history, performed a pelvic and rectal examine and told me he believed I had Endometriosis. He said that more than likely I would need a Hysterectomy! I couldn’t even say this word that was going to consume my life from this point on. I was only 24, newly married and this Doctor had just shattered my hopes of being a Mum. My shock was soon replaced with Anger so I decided to get a second opinion. To my horror the next Doctor told me the same thing after a Laparoscopy. Mild Endometriosis with deposits on my left utero-sacral ligament and in the Pouch of Douglas. He sugar coated the diagnosis more than my previous Doctor and told me it was possible to have a baby through IVF.
In 1986 in Queensland it was only offered in Brisbane (We were living in Townsville, my home town).
I was started on a drug called Danazol but I had a severe reaction so I was subsequently put on Primolut therapy for 6 months. After ceasing medication my pain returned and still no pregnancy.
So with much trepidation, tears and fears we packed up and moved to Brisbane. Away from our family, friends and support network. I didn’t know it at the time but this was the easy part of my journey. I told my family that we would be gone for 12 months, 2 years at the most. We never went home.
We both had exhaustive tests, investigations, were poked and prodded. I was given so many different medications I can’t even remember their names now. All were equally hideous, all with side effects that ranged from acne, severe mood swings, tiredness, depression – none of which worked at keeping this disease at bay.
We started on the IVF rollercoaster in 1987, which in itself, is another story. During the 15 years we underwent IVF cycles (13 to be exact) I had more than 20 surgeries. All done to preserve my fertility so I could achieve my dream of being a Mum. On my 3rd IVF attempt I fell pregnant. I was now 29 years old. OMG we were over the moon, so very happy. However our happiness was short lived as I miscarried at 8 weeks. After the miscarriage I had severe pain that would not go away. My doctor was concerned so decided to operate. The Laparotomy, which required a blood transfusion, revealed Severe Endometriosis everywhere. It was around my bowel, my ovaries and tubes were stuck down with adhesions. My Surgeon told me it was a mess.
Nonetheless we continued with our IVF journey. This was intersperced with Laparoscopies and drug therapy to treat Endometriosis and preserve my fertility. In 1995 (aged 35) my Surgeon said that he needed to perform another Laparotomy to try remove the adhesions from around my ovaries and tubes and also to free up my bowel, which was stuck to everything. He said this would give me the best chance of success with my IVF treatment.
This surgery was 5 hours long, required another blood transfusion and removed 8 inches of my bowel. My scar started from just under my bra line and ended at the start of my pubic hair. This surgery took me a long time to recover from. 10 days in hospital and 6 weeks off work. No family around to help, just us.
We continued on the IVF journey with determination. In 2002 our little miracle arrived Stella Grace Elise Tyson. Number 13 IVF attempt. I cannot explain the emotions I felt as she was placed in my arms. But you could imagine. 19 years was our journey. The 9 months I was pregnant were the BEST. I felt healthy, happy, pain free. No Endo.... This continued until after I stopped breast feeding then it returned with vengeance. I put up with it until Stella was 3. I went back to see my Surgeon and he said to me “Jo it is time. You need a Hysterectomy, it is an absolute mess inside your abdomen”.
So off to theatre I went, more than 5 hours of surgery. A total Hysterectomy was performed removing both ovaries, tubes and cervix. My bowel was once again freed up of adhesions. My tummy looks like a battle field with scars. I had post surgery complications. I had a haematoma in the wound, bowel obstruction and partial collapsed lung.
After I recovered I thought ok now I can put all this behind me and live a life without pain and just enjoy my little girl. Ladies this was not the end, but another beginning. Due to the multitude of surgeries that had been performed on me I now had severe adhesions.
This is my next journey. About once per year, sometimes twice, I am admitted to hospital with a small bowel obstruction. I am now on a permanent Low Fibre Diet. My bowel does not function at all unless I take medication daily to assist. I can only eat small meals and suffer with pain on a regular basis. My heat pack is once again my best friend. My bowel surgeon has advised me that worst case scenario will be to remove my entire bowel. I am determined for this not to happen so am very vigilant with what I eat and with bowel function.
My gorgeous daughter is now 13 yrs old and I am watching her so very closely for any signs of this disease affectionately called ENDO.
If I can help anyone with advice or support or just an should to cry on I can be contact through Endometriosis Auatralia. Stay strong. Just don't give up EVER, no matter what!