Adenomyosis: my experience

Women’s bodies aren’t always designed to fit into the rigidity of the 9-5 schedule. We are more seasonal types. Bless us though, we really do our best to give the impression that we all play on an even playing field. As a Gen X woman, I have never felt the workplace is a safe environment to address some of the issues women’s bodies face in their lifetime. I know some people will find my opening statement provocative and will be tempted to believe that what I mean is that women aren’t equal to men.

I don’t mean that at all. We absolutely are equal to men. We absolutely do have as much to offer our professional environment. Our value is not diminished because we need more flexibility in the way we get our work done.

Different does not translate to less than.

In recent years I developed a condition called Adenomyosis. Adenomyosis occurs when the cells that line the uterus (endometrial tissue) grow into the muscular wall of the uterus. As a result, the uterus becomes swollen and enlarged, typically causing painful, heavy periods. Personally, there were times when I needed to change every 20-30 minutes which is often impossible in the workplace (insert flashbacks of horror here). Women may experience a sensation of bloating, and a heavy and heated sensation dragging down your lower abdomen from the inside. Adenomyosis is often accompanied by sharp, knifelike pelvic pain and pain radiating through buttocks and down leg/s.

For me, the pain will come in unpredictable waves and often feels like the end stages of labor, causing me to rock back and forth in a desperate effort to relieve some of the pain. It never works, but at least I feel like I am doing something to help myself. Over the course of an hour, I can go from being brought to my knees with blinding pain to being bright and pain free and then back again. Not only is it humiliating, but it also makes me feel manipulative because there is no discernable trigger to each episode, and I worry that I am perceived as flaky as a result.

I do find that being under any kind of emotional or physical stress exacerbates my symptoms and managing my stress does not make my condition go away. I find it stressful to manage my professional and social life around my symptoms, especially as my periods are no longer regular as is often the case during perimenopause. I can go three months without a period and then get two in six weeks. I can experience just one hour of symptoms or be sidelined for several days. There is no way to predict which one I am getting served up each time. At best I can breathe through the pain and give a pretty good impression of someone who is just fine thank you. At worse my vision goes black, and I am unable to stand. It is a harrowing experience and I am often exhausted for some days after my body has settled back down.

I find my confidence to book important business events or take on external employment has long since evaporated. I was working in a job that I loved and valued when I developed Adenomyosis. For many reasons I was unable to remain in that role and because of Covid the surgery I needed to help manage my condition wasn’t considered essential, so I found myself in a position where I needed to use my superannuation to pay privately for that surgery. It didn’t work, in fact the pain increased significantly. There have been many times when I have felt frightened and alone, overwhelmed by the depth of pain and unsure of when it will all end.

Over time I have managed to use Mindfulness Based Stress Reduction (MBSR) techniques and hypnosis to reduce the impact of my symptoms, both of which have improved my experience radically, as I found the recommended medications did not even touch the sides (Many of them are prescribed to be taken 24-48 hours prior to your period starting, but with no regularity that was a useless prescription for me). I now feel like I have some influence on my experience which is helping to rebuild my confidence. I am grateful for the opportunity to rest that Covid created in my life and that I didn’t need to keep dragging my sore and tired body through the 40-hour week grind. I am grateful that Covid has forced previous inflexible employers to become comfortable with offering employee’s flexibility in how they deliver their work hours. I am grateful for the opportunities this will present to portions of our community that were previously overlooked because they require flexibility in the workplace.

For many women, the only solution to dealing with Adenomyosis will be to have a hysterectomy. They may try medication and allied health techniques, or natural therapies and hypnosis and they will not work for them. For some women though, these techniques will make their condition manageable until they reach menopause and the condition disappears or they will give them a sense of control while they are waiting for their surgery.

*speak with your Doctor before undertaking any therapies or change to your management of your condition