My important story: The enormity of endo
I have rarely talked about my health and experiences with endo. It is difficult for me to discuss it. I recently reconnected with my “endo sisters” and have found the courage to speak up. I hope it might help others in some way. This is the shortened version of my story!
I had my first period at the age of about 12 ½ and it was horrendous. Every period was the same. Heavy, with clots and very painful. The teenage years were filled with horrific pain. There were so many times where the period pain was so bad, I thought I was going to vomit or pass out. The pain started just before my period arrived, during it, of course, and then recovery for a couple of days after. In my family, it was just “women’s problems” and you put up with it. There seemed to be an unspoken history of endo in my family.
At about the age of 19, I took myself to a GP. The first GP wanted to put me on the pill, which for me intuitively, was a bad idea. So, I then took myself to a female GP, who sent me for an ultrasound. Next thing, I’m diagnosed with a cyst on my right ovary about the size of an orange. It was 10cm in diameter. I saw a gynaecologist by myself and was booked in for surgery the next day. The procedure was not clearly discussed with me and I didn’t really understand what happened.
The doctors’ appointments and surgeries then began. I had five operations in about eight years, with the first three occurring in the first three years. Each one was with a different doctor and each one each promising I could get better. I was in my early twenties when I ended up being diagnosed with severe endo and adenomyosis. The endo was around my whole pelvic area, bladder and ovaries.
There were a couple of trips to the emergency department, as the pain had been so bad after a couple of the operations, that it was frightening. I’ve had so many doctors look at me, poking around at my belly, that there are too many to count. I’ve even been told that maybe it was appendicitis when I knew it wasn’t. Some doctors seemed to think that I didn’t know my own body because I was young at the time. There were many and varied types of scans, and many, many blood tests.
When I was about 26, I was back at uni completing my Master’s degree. One doctor said I needed to have children by the time I was 28. I didn’t know if I wanted to have children at all. What a suggestion to make. Apparently having children, would “fix me”.
Throughout the years of surgery, my health worsened. Each time, I felt like my life force was weakened more and more. It was harder and harder to recover. The pain in between my periods worsened and my girlie bits hurt even more when I had my period. I had to deal with unpredictable bloating, which meant I had to be careful what clothes I wore. I was very slim and couldn’t wear the usual figure-hugging clothes that young women my age would wear. The constipation at period time was an added bonus, contributing to my swollen belly. I was offered horrendous drug treatments, which I refused. I tried lots of alternative treatments by different practitioners, which only sometimes provided temporary relief. I seriously considered having a hysterectomy after my fifth operation.
I do believe endo is an auto-immune disease. As a child into my teenage years, I contracted many illnesses. I had mumps, chickenpox, measles, German measles, glandular fever and many flu viruses. When I began my undergraduate degree, I developed chronic fatigue and a stomach ulcer. I had another bout of chronic fatigue when I was at uni for my Master’s degree in clinical psychology. I have also been partial to easily catching colds and flu. My immune system has improved the past few years, with seeing naturopaths, a change in diet and exercise.
At about the age of 31, I decided that I would like to have a baby. I was a candidate for IVF but there was no way I was going to have more intervention. I decided on a natural fertility programme with a naturopath specially trained in this and was able to conceive two babies. Don’t believe it when a doctor says you probably won’t be able to conceive on your own and use contraception if you really don’t want a baby. I had two sons, one born in 2003 and the second one in 2006, both now taller than me. Unfortunately, I was terribly ill both times, with all-day sickness and gestational diabetes. There is a point of view that gestational diabetes is also an auto-immune condition.
It took about 60 hours to deliver those sons of mine. I went into labour on my own but my poor uterus couldn’t establish deep labour. This was probably due to all the operations. I had to have my waters broken and put on a syntocin drip both times. Very painful but I managed with self-hypnosis and no epidural. I tried strong pain medication but that was rotten stuff and I lost my concentration. My first baby was nearly an emergency c-section, as he had the cord around his neck. He was born with fluid on his lungs and that required a longer than expected stay in hospital.
Well, the endo didn’t leave me alone for long after my pregnancies. Pelvic pain recommenced, even though I wasn’t having any periods. My doctor couldn’t believe it, as he had hoped I would have been given a break. When my periods eventually returned, it was back to the same terrible pain. I talked to my doctor about a hysterectomy after the first baby and I remember him saying, “let's see if you can have another baby first”.
In 2007 and at the age of nearly 37, with my second baby only about 14 months old, I had my hysterectomy. It was a very traumatic experience. My lovely obstetrician became my gynaecologist and he performed the surgery. Thankfully I was in good hands, as the surgery was complicated. It took about 4 ½ hours. My belly had to be cut right open, I was facing kidney damage due to the amount of scar tissue inside from previous surgeries, and I lost my right ovary. I woke up with tubes coming out of me and my pain management didn’t work. The morphine pump would get jammed and the pain would escalate. I had so many drugs pumped into me during that week in the hospital, I looked horrendous when I left.
I was really unwell for a very long time. It took at least six months for my left ovary to regroup and settle my hormones. Even though I was mentally prepared for the surgery, it took me about two years to physically and emotionally recover. I would get emotional seeing advertisements for sanitary pads on the TV or walking into a public toilet and seeing a sanitary bin. The thing I detested the most about my body, that affected my sense of womanhood, of sexuality and comfortable about being a woman was gone, and yet, I had to come to terms with this loss. I didn’t work for about 2 ½ years after my second baby was born, due to recovering from it all. I also received quite insensitive comments from other women and was sometimes made to feel inadequate, as I wasn’t recovering as quickly as they thought I ought to. Their bodies had not been through anything that my body had experienced.
Well, being poked and prodded by medical practitioners did not end there. My usually quiet left ovary decided to start growing cysts. It never had before. I was told by one practitioner, that “maybe I just didn’t notice it before”. No, my left ovary used to be fine. I have to get it checked at least twice a year, with a blood test and a rotten internal ultrasound, as some of the growths looked suspicious. I have a family history of ovarian cancer and had to be careful. It was suggested to me that I could have it removed but I knew I would experience more hormonal problems. I decided monitoring my ovary was the best solution for me and to keep up with my appointments. My poor remaining ovary struggled to work and was going into menopause for about two years before I was finally diagnosed with this change of life in 2018. A gorgeous close friend of mine, Rachele, kindly went out with me for an evening, to “celebrate” this new stage of my life. I realised becoming a woman was never celebrated at the beginning of my fertile life, so it was fitting to toast the ending of my fertility!
Due to my family history, I think having my hysterectomy probably saved my life. It took me years to realise and accept that. Particularly as I was so ill for such a long time after my surgery and had a young family to care for. I continue to take good care of my health, as best I can. I still live with chronic pain. I have mild scoliosis and in 2011, I strangely grew a benign tumour in the tibial nerve of my right leg. The surgery was conducted by another doctor who made false promises and it has left me with ongoing nerve pain. If the nerve pain had been my first ever type of chronic pain, I don’t know how I would have coped. I went through hell with the pain, rehab, medication and other types of treatment to get better. My leg has never fully recovered but I think the pain I endured with endo, helps me manage the nerve pain.
Looking after our health is multi-layered and is an ongoing process. I still have to manage my belly as it easily gets swollen, there are scars on my belly, internally a wad of scar tissue where the hysterectomy scar is, a sensitive bowel, scar tissue pulling and phantom right ovary pain. I try to maintain my health with regular checkups, a good diet, good sleep, exercise and organic dark chocolate treats that I make. I rarely have alcohol or sugar, as it causes inflammation. I practice yoga, go to the gym, have become Buddhist and have caring practitioners in my life, such as my naturopath and physiotherapist. I’ve found I need gentle people in my life, who at least try to understand and hopefully we can have a laugh together.
It’s important for women to listen to their intuition, to listen to their gut. If a health practitioner is suggesting something you are unsure about, listen to yourself. You don’t have to decide on the spot. Take your time and investigate all your options first. Be kind to yourself, stay strong and I wish you well. - Lisa D’Souza October 31, 2018