Hormones and me

It’s time to share, to help others. It has taken time to get to a place to be able to. This was my reality for over three years. The days during this period were challenging. My functioning and everything that I could or could not do was affected. Mirrors were avoided, video cameras were turned off, jobs were left, and things were cancelled. This is the short version of a long journey. Please get in touch if this story resonates with you or someone you know if I can help I will.

I have an autoimmune of my pituitary gland, it’s a bit sluggish, and as a result many of my hormones have been low since my mid-twenties. That’s been my baseline, my ‘normal. On reflection, the symptoms I had in my 30’s were many of those associated with peri menopause, and not ‘normal.

In December 2019, I noticed swelling in my pelvic area. As the months passed, this spread to my abdomen. The pandemic was upon us and getting to physically see a GP was a hard task. Eventually when I did, after examination, the diagnosis given was ‘middle age spread! I kid you not. I asked to be referred to an allergist. Allergies were ruled out; next stop an immunologist. His first course of treatment was high levels of antihistamines for six months. I agreed, anything to stop the swelling and the not knowing how my body would be on any given morning. Living with a chronic condition that has no exact cause and management plan is exhausting and deliberating.

Histamine is one of the necessary chemicals released from mast cells, immune cells, in response to a treat. Mine were under threat all the time. When oestrogen fluctuates, mast cells are triggered to release histamine, and can bring on symptoms like, flushing, inflammation, anxiety, digestive problems, sleep disturbances, and changes in mood. This can happen with a decrease or increase in oestrogen, and managing this with HRT needs to be very specific for every individual woman.

Six months passed, the swelling persisted, treatment was adjusted for the next 3 months, if that didn’t work immunotherapy was the next option presented. In the first two pictures I was on these treatments, evidentially not working. The first picture was taken in August ’21 and the second in October ’21.

With self education, research, self-management, and avoiding triggers, I knew hormonal fluctuations were driving this. Was my body experiencing the symptoms of peri menopause without having menstruated for almost 20 years? Next up, an appointment with a menopause consultant. A drug called Xolair was mentioned, it stops histamine from being released from the mast cells for a period, allowing them to re-educate themselves on what is and is not a threat. In my case oestrogen.

These injections are expensive and not readily available. Thankfully after a yearlong wait in December 2002 I got the first one administered on the immunology day ward at St. James Hospital. This continued once a month for three months on the day ward, then I self-administer at home for another three months. I also started on a low dose of HRT at the same time, while histamine release was being controlled.

The last picture is a month after my last injection in June 2023, on route to deliver a talk. Eight months on, flares ups are a thing of the past and living in a body with HRT feels right for me. Now on walking, I am extremely grateful for no longer having to check for swelling before determining how the day can progress. I am learning to adjust the expectation of it happening, all in good time.