Living with endometriosis: Hannah's story

How long have you been living with the symptoms of endometriosis?

Looking back, I'd say I've never really had normal periods. They've been painful and heavy ever since they started.

Before my diagnosis, I had about three or four years of quite intense symptoms. I had painful periods, heavy bleeding and clots every month. The pain would last longer and longer until eventually it filled the whole month.

I've heard people describe it as like having thunder and lightning in your tummy and that's fairly accurate. I also get recurring urinary infections, constipation, painful sex…

What was your journey to diagnosis like?

I had countless visits to my GP that just felt hopeless. One of my main symptoms was a recurring urinary tract infection, and she just kept prescribing antibiotics.

It got to the point where I was in such pain that I would be physically sick. But when I explained this to her, she concluded that it was in my head.

After my diagnosis I felt so much happier.

Eventually I was seen by another GP - a locum - who referred me to a gynaecology clinic. Though actually it took another trip about five months later, where I explained I hadn't yet been given an appointment, before I was finally rushed through to the gynaecology clinic at The Alex (The Alexandra Hospital). 

My surgery was performed by Mr Suku George, who confirmed the presence of stage 4, deep infiltrating endometriosis.

How has living with endometriosis affected you psychologically?

In the early days, before I knew what was wrong with me, my mental health was in a sorry state. If you are knocked back time and again by a professional, told it's all in your head… You genuinely start to wonder.

After my diagnosis I felt so much better, so much happier.

Unfortunately, hormone therapies have not worked for me. Some even made things worse. The contraceptive pill impacted my mental health, I became so anxious and felt like I was going crazy. I tried the coil, too, but it was so painful!

I tried other ways to look after myself, especially as I was sick of prescription painkillers. I think you have to find what works for you personally. For me, heat is a good help and I get great relief from a hot bath. I also visited a naturopath who gave me a herbal tincture to reduce inflammation.

How was your experience of treatment at The Alexandra Hospital?

When Professor Nardo first referred me to surgery with Mr George, I was nervous. I had never had an operation and I had never met the surgeon who would be performing it. But on the morning of the operation, Mr George came to see me and I was immediately put at ease. He has such a lovely, gentle bedside manner.

Since my first surgery, I have had another operation with Mr George and I have also referred friends to see him.

My appointment was organised very quickly, and I felt well looked after from the minute I entered the building to the moment I left. At every appointment, Mr George's lovely nurse Annette has been there and she's so reassuring and kind while I'm being examined. And Mr George explains things so well.

The anaesthetist was very kind and gave me a sedative to calm my nerves in the morning. For both of my operations I have had my own room, which is so much better and more dignified than sharing! I've always had a follow-up appointment soon after my operation to reassure me too.

I cannot fault the Circle Health Group service.

I have since been back to the Alex as a private patient to see a neurologist and an ophthalmologist and the service again has been amazing. If there is such a thing as having favourite doctors, Mr George and Dr Schumacher are mine!

How has your life changed since having surgery?

At the moment I am symptom free. (Touch wood!) I've recently had a baby (and I'm breast feeding) and my periods haven't returned yet. My mental health is the best it's been!

But before I fell pregnant, my symptoms were slowly creeping back, two years after my second surgery.

I feel very lucky that I have been able to have a baby. Who knows what my fertility would have been like if my endometriosis had been left untreated.

I have had surgery twice now but, unfortunately, I am one of many women whose endometriosis returns and I may have to have more surgery in the future.

I feel very lucky that I have been able to have a baby. Who knows what my fertility would have been like if my endometriosis had been left untreated.

Since surgery, my life has completely changed and I'm much happier. And at least if my symptoms do come back, I know what is causing them and I know where to go to get the right help and get it fast enough.