Dionne's endometriosis journey

It took Dionne several years for her pain to be taken seriously. As soon as her periods began age 12, they were painful and heavy; alongside having issues with her bladder, bowels and digestion, constant fatigue and headaches.

Dionne would often be left bed-bound and with constant pain, but was consistently told her periods would get better when she got older. Sadly, 1.5 million women in the UK suffer with endometriosis, but on average it takes 7.5 years for women to receive a diagnosis, with Dionne receiving hers after six years. 

After trying multiple types of hormones over several years, Dionne hit breaking point at a new job when she found herself in a toilet cubicle doubled over, vomiting and with heavy bleeding. She asked her GP for an urgent referral.

Finally, she received a laparoscopy and was diagnosed with severe endometriosis in 2016. A laparoscopy is a type of surgical procedure that allows a surgeon to access the inside of the abdomen and pelvis without having to make large incisions in the skin. This procedure is also known as keyhole surgery or minimally invasive surgery. It is a common way to diagnose endometriosis.

Dionne felt some relief when she finally did get her diagnosis, alongside some anger on being dismissed for 6 years. There was also some sadness that there is no cure and that after surgery the endometriosis can grow back.

Sadly, after multiple surgeries, Dionne would have a few months relief and then the pain would return. Her life continued to be difficult, where she relied on painkillers in between surgeries, experienced constant vomiting so she could not enjoy food or socialising. She felt she was simply existing, a prisoner in her own body. 
'I've already lost years of my life due to this condition but I knew I couldn't give up hope.'

A search on Google led her to The Harley Street Clinic Endometriosis Centre and Mr Denis Tsepov, where Dionne read about patients who had similarly debilitating experiences with endometriosis and were successfully treated. She reached out and got a call a few hours later to arrange an appointment. 

On having this appointment in the diary, Dionne felt such a huge sense of relief: 'I attended my first appointment with my best friend Dylan so I felt well supported. Straight away I was put at ease and I felt listened to. Mr Tsepov got me to start from the very beginning and then up until now and he covered absolutely everything. It was the first time a consultant has actually sat down and listened from the beginning. He then sent me for some tests which I had done that day and the clinic was so nice and the staff were so kind and helpful.'

Dionne then had a further decision to make. Mr Tsepov advised that the best treatment for Dionne would be a hysterectomy, but due to this being a major, life-changing surgery, especially due to Dionne's age, he arranged for her to speak to several healthcare professionals and provided her with all the necessary information, which felt thorough and like she was able to consider all her choices. With the help of supportive family and friends, Dionne was able to make an informed decision.

'It was one of the most difficult decisions I've had to make but on the 1st of September 2022 I was admitted to The Princess Grace Hospital and underwent a hysterectomy due to endometriosis.'

Dionne felt the hospital stay was made easier by the brilliant nurses and kind staff. Having the same nurse there pre and post operation, helped Dionne feel supported and safe on a very difficult day. Dionne’s Mum was there with her and she was also touched by the kindness and thoughtfulness of the nurses.

Dionne noted that ‘there was an immediate change; a heaviness I couldn’t remember living without had gone. It felt incredible.’

Dionne was in hospital overnight, with the nurses checking on her every hour. She felt comfortable, with some nausea, but the nurses were there throughout to support her and she was able to sleep on and off through that first night. 

Mr Tsepov came in the next morning to speak to her about the outcome of the surgery and an anaesthetist discussed a short-term pain management strategy. Dionne was also visited by physiotherapist Cara for a short walk around the ward: 

‘It was good having the range of support after surgery. The consultant has been very supportive throughout my care. The Gynae Clinical Nurse Specialist has been great also and I know I can contact her if I have any questions or need advice. I found the physiotherapy post-op was helpful and the advice given did answer a lot of my questions about post-op recovery after a major surgery.’

Dionne explains that: 

‘Recovery is tough and there have been a few issues. But what is important to me is that I had the constant support of Gynae CNS Vicky to answer any questions or give advice. This has been a source of reassurance for me throughout the process.’ 

There has been some post-operation pain, but Dionne stresses that she is nothing like the pain she experienced before surgery. She now doesn’t have to be fearful of her periods and is able to enjoy food again, without the fear of vomiting.

Dionne shared some exciting news about her future:

‘I had applied for university back in 2016 but sadly wasn’t well enough and had to postpone. I have been determined to reapply and had made it one of my goals. I didn’t think I’d get to this point but I’m in the process of completing my application for university starting in September 2023.’

Dionne would recommend the team to anyone suffering like she was:

‘The post-operation support is such a reassurance and incredibly important. The care I received from didn’t stop once the surgery was over, making me feel safe and not scared of any pain during rehabilitation, because I could reach out and ask questions whenever I needed to. I feel like I have got my life back, which is all thanks to the staff at The Princess Grace Hospital.’