Charlotte's Story

As well as having a diagnosis, support from the internet was absolutely key for me because during this time there wasn’t any GP support. Right from when I’d had the first infection two years earlier, I’d kept going back to the surgery and asking, “I’m getting sicker and sicker, and weaker and weaker, what can we do?” Each time the doctors would reply with stronger antibiotics for a longer period as if it was not a big deal. I now sincerely believe that had things been managed differently in terms of the NHS UTI testing and treatment protocol, particularly for those with EDS, that the infection would not have persisted for 5 months, and it would not have changed my health so dramatically to Interstitial Cystitis, MCAS and subsequently latterly a diagnosis of severe osteoporosis.  I’d love to wave a magic wand for those who come after me. 

With this cascade of events from the infection, where I wasn’t able to eat or exercise as I had done, take supplements or hormone replacement therapy for my menopause, alongside some significant life events, my symptoms progressed - I feel it is key to mention all these conditions as part of a potential MCAS picture. 

The biggest support has been diet and a mind body approach to MCAS. As my digestion was already compromised by the antibiotics, I decided not to take further drugs. Whilst I certainly wouldn’t rule out drugs at all, I also knew that antihistamines would only block the feeling of the symptoms but not solve the problem itself for me, so I decided to take a natural approach. I wanted to try and help my digestion come back, which I felt was key to all the other symptoms I was experiencing, from screens to sunlight and sound as well as food. I had cautious confidence as I’d had great experience with a natural approach to many things before, including advanced arthritis in my hips from aged 30 onwards due to childhood surgeries from the age of 2 to 7 to get me walking. Whilst the x-rays had showed I needed hip replacements aged 30, I didn’t have them until I was 52, when two separate surgeons volunteered that I had given myself at least an extra 15 years before surgery with this natural approach. This is what gave me the belief that whilst it might be slow, a natural approach using food, herbs, meditation and exercises would be the focus of my efforts. 

In the beginning it was very tough and MCAS affected all daily activities and social life, but there has been steady progress. I can now work, go to the gym, sleep, walk 10k steps outside in the lovely hills around me and eat three times a day. I can be out in the sun, watch films at the cinema, work on a computer, listen to music, socialise and eat a range of foods I couldn’t three years ago. Food and fresh herbs are my medicine. I can now even take a few supplements too: magnesium, vitamin D3, vitamin K2, B complex, vegan EPA and occasionally DAO if I feel myself going too ‘up’. I am building my muscle again and energy has and is still improving. A meditation practice of almost a decade has also underpinned all of this, in relating to my symptoms in a different way, and so reducing them too, and I would not be where I am now without it.  

There’s still a way to go to my old life of travelling all over the place and eating easily in restaurants, as great attention goes into all this – and I reflect that actually now I’m embracing a new life and different interests. The improvements to date have been completely life changing, and I am back in the world again with energy and excitement. 

In the beginning it was very tough and MCAS affected all daily activities, but there has been steady progress...the improvements to date have been completely life changing and I am back in the world again with energy and excitement.