A journey through loss, pain and healing

December 2023, a week before Christmas and we faced the heartbreaking decision that every dog owner dreads, we unexpectantly had to say goodbye to our beloved dog, Maisie. Earlier in the year, we had said goodbye to her sister, Mimi, after a long illness. Losing Maisie just nine months later to an aggressive cancer, especially when she had been so happy and lively, felt incredibly cruel.

The year 2023 had its moments of joy, but it was also marred by numerous challenges. Losing both of our girls, costly breakdowns in our van, Heidi, and a bout of COVID that lasted 6 long weeks during what was supposed to be a carefree 90-day summer trip to Germany to name but a few. By the time the new year rolled around, we were more than ready to say goodbye to all that had passed and to begin a fresh new year.

On January 1st, 2024, we finally felt like we could breathe again. We began planning our exciting trip to the USA, looking forward to the adventures ahead. My birthday in mid-February was a joyful occasion spent with family, celebrating with a night of eating, drinking, and karaoke. However, in the days following, I felt unusually exhausted, and a nagging pain in my hip, which I had initially dismissed, began to worsen.

As weeks passed, my exhaustion grew, not just as a passing tiredness but as a deep, unrelenting fatigue. Daily tasks became a struggle, my brain fog got worse, I couldn’t sleep and the pain in my hip persisted despite various treatments. As with most women of my age (54) I just put these symptoms to perimenopause and increased my HRT dosage, sought acupuncture, got fitted for proper shoes, and consulted an osteopath. Yet, I still felt off-kilter, emotionally drained, and less and less like my happy self.  I felt that I just couldn’t be there for those who needed me the most, especially my daughter who had only just had major surgery herself and my guilt was and remains huge.  The words I used to explain to David how I felt were “I feel like I’m dying, like I’m slowly fading away” and whilst that might sound dramatic to some, it is exactly what it felt like.

When the pain started radiating to my right flank and rib, I knew something was seriously wrong. Despite multiple visits to my GP, where my pain was dismissed as a mystery, I pushed for an urgent ultrasound scan. My husband, David, and I were convinced I had kidney stones.  We were so sure that I went for the scan appointment alone thinking nothing of it. The scan revealed a large mass in my pelvic area, and I was sent to A&E immediately to sit and wait to find out what on earth was going on.

Fast forward to today, June 20th, 2024 and as I sit here and write this, I am 11 days post-surgery. Both of my ovaries and my fallopian tubes had to be removed.  One of my tubes had a 16cm cyst inside that was filling my entire pelvic cavity. I had a significant number of adhesions that had to be removed and repaired. The cyst had twisted, cutting off its blood supply, and had caused severe complications by crushing my urethra and bladder and displacing my uterus up and into my abdomen.

This ordeal has been the most terrifying experience of our lives, filled with anxiety, sleepless nights, and constant fear of what the next scan or blood test might reveal.  You start to have conversations with doctors about cancer and blood markers and your whole world just stops.  I am recovering well now that I have given into the fact that I have been really poorly and rest is the only thing that’s going to help me now.  Each day I grown stronger and I can feel my old self beginning to come back.  Our 3000-mile cycle trip beginning in September now feels like a reality and is filling me with hope and excitement.  Even if we have to take our time, I am determined to complete it!

I share this story to emphasise a crucial point to all women: not every ailment should be attributed to perimenopause/menopause. While the symptoms of menopause are vast and varied, they can overlap with other serious conditions. It’s vital to listen to your body and to seek medical advice when something feels wrong to you.  We all know our bodies really well and nagging thoughts about symptoms should not be ignored.

Ovarian/fallopian cyst symptoms can include: Fatigue, bloating, poor sleep, hip pain, rib pain, shoulder pain, indigestion, lack of appetite, depression, urinary issues, painful sex, referred pain and may more.  My GP still claims that this is not possible, however 10,000 other women in a group I belong to dedicated to ovarian cysts will tell you otherwise!

Commit to having a ‘well woman’ check-up once a year and having your bloods checked. In fact, my Ferratin levels (iron stores) were incredibly low and I had no idea.

Remember, you know your body better than anyone else. Don’t accept vague reassurances from your GP if you’re in pain. Think of your GP as a central hub who directs you to specialists when needed. Push for the tests and referrals you believe are necessary and don’t be fobbed off if you know you are right. When I insisted on an urgent scan, I got one the next day, which led to my diagnosis and subsequent treatment really quickly.  Sometimes, we need to be pushy and not well behaved!

Join some relevant Facebook or support groups.  I found the women that I met in those groups intelligent, informed, knowledgeable and kind.  Without them, this whole process for me would have been slower and much more overwhelming. 

If you are facing a medical procedure, ask as many questions as you need to, to feel informed and comfortable. I found my final telephone consultation to discuss surgery lacking in empathy and information.  Having ovaries and fallopian tubes removed can have a significant impact of the lives of women and those around them and should not be undertaken lightly.  Consent for surgery should be ‘informed’, you should have a total understanding of the procedure, the risks and the possible outcomes.

I did my own research and found a wonderful Gynae Consultant called Mr Raafat, who works for the NHS and also privately.  I made the decision to see him privately to discuss my scans, results and surgery options.  This cost £200 for an hour but I felt that it was money well spent. It gave me an hour of his undivided attention and the chance to really ask as many questions as I needed to. 

Please be aware, that in choosing to get a second opinion in this way, you are not jeopardising your NHS status or place on a surgery waiting list.

Living the way that we do does have some drawbacks but one of the benefits is that we can work and save money much faster.  On this occasion, we made the decision to dig into savings and to have my surgery carried out privately.  In hindsight, we feel that this was worthwhile because the surgery ended up being much more complicated than initially expected.

Despite some frustrations with my GP, I remain a huge supporter of the NHS. The speed, kindness, and professionalism I encountered throughout my hospital treatment were exceptional. To all the medical professionals who cared for me, thank you for your unwavering dedication and compassion under immense pressure.

In conclusion ladies, it’s known that we can be as tough as old boots, that we can take on the world, raise families, work full time, run a home and push our own worries and ailments to the back of the priority list but please remember to not ignore that little voice that says “Im not ok”, take charge of your health, listen to your body, do not put everything down to Perimenopause/menopause and don’t be afraid to demand the care you need. Your life may depend on it.