In 1990 at the age of 25 I read an article in a magazine about Endometriosis and self-diagnosed myself. My gynaecologist initially disregarded the idea until an ultrasound confirmed that I did indeed have Endometriosis. For the next five years I endured countless laparoscopies and a laparotomy to remove the offending cysts and adhesions, but sadly they kept coming back.
In 1995 I headed to the UK to live and my Endometriosis went with me. I continued to be plagued with back pain, very heavy periods, passing of large blood clots, and irregular breakthrough bleeding. I gave up going to Dr’s for treatment as nothing seemed to work and I’d had it instilled in me from the moment I started menstruating that heavy periods were just part of a ‘woman’s lot’.
Then one day I was admitted to the Royal London Hospital suffering from anaemia and requiring four units of blood. On further investigation they determined that I had a large fibroid hanging from the top of my uterus and protruding through my cervix. This unwelcome alien was the cause of my by then constant bleeding, which I had attributed to my Endometriosis. After treatment to reduce the size of the fibroid, it was removed some months later and sent to the lab for testing. I returned for my post op check-up and the gynaecologist informed me that due to an abnormal pathology report I would need a hysteroscopy.
At the next visit post hysteroscopy my gynaecologist told me I had Endometrial Stromal Sarcoma (ESS) and would need an immediate hysterectomy. I was 33 and my partner Andy (now husband) and I were trying for a family at the time. Sometimes our minds work in strange ways as all I could think about was that we wouldn’t be able to have our own children. I seemed to miss the other point entirely – I had cancer. I debated with the gynaecologist as to whether the hysterectomy could be delayed until I’d had a baby. Neither my gynaecologist nor the oncologist that I was later referred to would be deterred from their decision, so in September ’98 I had a TAH (Total Abdominal Hysterectomy). My ovaries were not removed as the cancer was confined to my uterus. I recovered quickly, continued to be monitored by the oncology team and life went back to normal. I had no radiation treatment, no hormone treatment and no chemotherapy, just regular ultrasound checks with the hospital. I was told nothing about the type of cancer that I had, and I guess due to the limited information that they had about ESS at the time, I wasn’t told that it could re-occur. So, I got on with life thinking that the cancer was a freak occurrence and that Andy and I were going to grow old and grey together, albeit without the children we had both dreamed of.
Well, it’s now 2012, 14 years on in my journey. I had seven years of being cancer free, and then in 2003 an ultrasound revealed two growths in my lower pelvis. As they were not changing shape or size and didn’t act like cancer it was determined by my gynaecologist and the radiologist that it was Endometriosis. I wasn’t being seen by an oncologist, although I now know I should have been. I refused to have the growths removed as they always came back and a biopsy was never suggested – oh how I wish I had pushed for one, but at that time I was still incredibly ‘cancer naïve’ even though I had had cancer. It wasn’t until mid-2005 that I started to feel tired, constantly bloated and generally unwell and it was then that a scan revealed that the growths might not be Endometriosis after all. After further tests I was finally diagnosed with a recurrence of ESS. This time though the tumours were unresectable, therefore my cancer was incurable.
It was a huge shock for Andy and I but we were optimistic that hormone treatment would keep the tumours under control, and it did for a while. After 18 months and a very stressful time at work my tumours became very aggressive and I was quickly signed up for my first chemo. That was when I realised I carried a ticking time bomb everywhere I went, and so the fight really started.
Over the last seven years I have completed five chemotherapy regimens to fight the tumours and three different hormone treatments to block my body’s production of estrogen. I’ve lost my hair four times and once lost my eyebrows and eyelashes as well. Then there are all the very private issues that I have had to deal with. Not only can I not have children, my first chemotherapy put me into chemically induced menopause at the age of 42. Since then a total lack of estrogen has meant that I suffer from very dry skin, a total lack of libido and atrophy of the genital area. The treatments for the last two issues involve estrogen which of course I have to avoid. It doesn’t stop there; because I have large tumours at the bottom of my pelvis I also suffer from very painful intercourse and painful orgasms. This affects me far greater than having incurable cancer, but having an incredibly loving and understanding husband gets me through.
The upside to all of this (there’s always an upside to everything in life) is that I am no longer ‘cancer naïve’. I learnt quickly all that I could about my cancer and the treatment options and have taken a very active part in my treatment and management of my symptoms, which I am sure has helped me deal with my overall prognosis. Although I am no longer on treatment, I am still doing well. My main problem is that I suffer from Ascites (fluid build-up in the abdomen – I constantly look pregnant) and occasionally Pleural Effusion (fluid build-up in the lining of the lung). I am having abdominal drains every 7 days and a lung drain when needed. Andy and I have had a number of instances where we thought ‘it was the beginning of the end’ for me, but now we have no idea how much time is left ticking away on the time bomb, so we just get on with enjoying life together and worrying about the things we can change, and ignoring those we can’t.
What my journey has taught me the most is that any changes to your menstrual cycle, unexplained bloating and unexplained abdominal or pelvic pain, should be investigated immediately by your Doctor, and the investigation should be continued until a plausible cause is found. Don’t just assume like I did that it’s just a ‘woman’s lot’.