Tuesday, 26 February 2013
My story: Robyn Atcheson.
My periods started when I was thirteen, heavier and more painful than any of my friends. I first went to the doctor about my period pain when I was fourteen and was referred to paediatrics who told me I was experiencing ‘growing pains’ which were perfectly normal.
In an effort to lessen my bleeding, I was put on the pill. After several months, I was clinically depressed and frantically terrified of leaving my house, a hormonal reaction to the pill. I changed pills and soon felt like myself again. The pill helped regulate my periods but they were still very heavy and very painful. For years I kept returning to my doctor and kept being told it was normal to bleed for ten days and cry in pain for at least a week every month.
When I turned eighteen I asked if I could be referred to gynaecology since I was now technically an adult. The consultant booked me in for a laparoscopy just before my nineteenth birthday. The lap diagnosed endometriosis and the surgeon lasered off the tiny bit on my left ovary as well as inserting a Mirena. Afterwards, I felt great. I lost so much weight simply by being pain-free and able to do more than ever before. The Mirena completely stopped my periods and life was great.
A week after my twentieth birthday I collapsed in university with pelvic pain. The ambulance took me to the nearest hospital where they referred me to a gynaecologist for an out-patient appointment. My life turned upside down overnight. I couldn’t do half the things I could before. I couldn’t wear jeans or stay out late. Friends quickly became bored with my claims of being in pain and accused me of attention seeking. My uni boyfriend broke up with me because I was no longer the girl he had met. The pain I was now in was different than in my teenage years; it didn’t follow any pattern and didn’t conform to a monthly cycle. It came randomly and viciously, every few days.
Months passed before I got to see a gynaecologist who performed an internal exam (even though I was still a virgin) and suggested another laparoscopy. My second lap, eighteen months after the first, showed nothing but scar tissue and I was discharged.
I went back to the beginning and started asking my GP for help to work out why I was in so much pain. I was told it was IBS and given a range of different treatments to try. When none of them worked I had a colonoscopy which still shed no light on the pain. Then I was sent to a general surgeon who suggested I lose weight. I questioned why no one had ever done any scans or even blood tests and, reluctantly, he booked me in for an MRI.
Meanwhile, I tailored my lifestyle to accommodate the pain and fatigue. I started seeing someone and fell in love. The MRI showed thirteen cysts on my ovaries, the biggest more than 10mm in diameter. I was sent back to gynae with a new diagnosis of polycystic ovarian syndrome.
The new gynae didn’t seem too bothered about the polycystic ovaries and started me on hormone injections to put me into an artificial menopause. The Zoladex injections not only put me into the menopause, complete with hot flushes and night sweats, it also intensified the pain. I couldn’t go to work, I couldn’t do anything but stay curled up with a hot water bottle and tramadol. My boyfriend was only twenty and found it hard to deal with everything that was going on. I realised that it was all a bit too grown-up for him and had to break it off.
A few weeks later I was admitted to hospital. I spent over a week in the gynae ward and during that time I had an ultrasound and a hip x-ray. Finally, a doctor came to see me to suggest that I see a psychiatrist since the pain was all in my head. I refused. I knew the pain was real. I came off the Zoladex and asked to be referred to the pain clinic. There I met with a doctor who actually listened and tailored a pain management treatment to enable me to get on with my life.
When I returned to work, a woman just back from maternity leave had heard about my stint in hospital and told me it sounded like endometriosis. She recommended a specialist and I immediately asked to be referred to him. I also started attending an endo support group, even though I was by far the youngest member. It helped me build confidence and I discovered that most of the girls in the group also went to the same specialist.
The first time I saw him, he agreed that my symptoms sounded exactly like endometriosis and he told me he would operate to remove it. He gathered all my notes and scans from the various hospitals I’d been in. Then, at my next appointment, he said that there was no evidence and therefore, he didn’t believe that I did have endo after all.
After months of self-pity and wondering if maybe it was all in my head, I decided that I needed to know one way or another. In January 2012 I knew my Mirena was due to be changed and asked my consultant if I would need to be knocked out for him to change it. When he said yes, I asked if he would just have a look around since I was going to be knocked out anyway. He laughed at my insistence and said that even though he thought that there was nothing to find and I understood the risks, he would schedule a laparoscopy.
The lap was scheduled in July as a day procedure. Another girl from the support group had a lap around the same time, though he was so confident she had endo, she was booked into hospital for a week. He was so convinced I didn’t have it, I was booked in for a few hours. When I woke up he told me there was endo on the outside of my uterus, vagina and pelvic wall. There was so much, he couldn’t remove it at the time so I would need to have another operation.
I had the operation two weeks ago. More had grown since July; it now covered the uterus, vagina, rectum and pelvic wall with a little bit on the bowel. He was able to excise most of it, leaving the bowel as it was too fragile. He shook my hand and said ‘well done’. Technically, it should have been the other way around… I just slept there while he did the complex surgery but I knew what he meant. Along with practically every other doctor I’ve seen, he had argued with me that I couldn’t possibly have endometriosis and only agreed to do a laparoscopy because I insisted and fought him to get it. I was right all along. No one knows my body as well as I do and while I might not be a doctor or a specialist, I knew that what I was going through wasn’t normal. I knew it wasn’t in my head though countless people insisted it must be.
This condition has cost me a lot. I’ve lost years of my life. I’m still only twenty-three but I feel much older. I’ve lost friends and relationships and given up things that used to mean a lot to me. However, I’ve also gained important things like perspective, patience, and empathy. The friends I have now are real friends and my time is precious so I use it carefully.
I know that the war might not be over but it’s a relief to have won this battle.
Thank you for sharing your story Robyn. It makes me so shocked and sad when I hear that still, nowadays, doctors think this pain must all be in someones head! It's quite unbelievable that they wouldn't continue to investigate it and rather leave you suffering. I'm so glad to hear you finally got your diagnosis and you were right in pushing and using your own intuition. Ladies, it's such an important message - don't settle without an answer to your pain. Pain like this isn't normal and there is a reason for it. If you think something is wrong, then go with that.
If you would like to contact Robyn, you can follow her on Twitter @randomrobyn.
Can anyone relate to Robyn's story? Have you had a Mirena coil? Have you found it has helped with the symptoms of your endometriosis? Has a doctor ever suggested the pain is in your head? Have your relationships suffered as a result of having this disease?
Remember, everyone of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please email it to me at firstname.lastname@example.org along with a photo and I'll pop it on to here for others to read.