Sarah's specialist surgery for rare endometriosis

Deteriorating without diagnosis

After the MRI on her back came back clear, Sarah began seeing countless specialists, including sports therapists, osteopaths, acupuncturists and physiotherapists, but nobody could diagnose or treat the 'sciatic' pain. Around the same time, Sarah also noticed that she was struggling to lift her leg up when lying down, which she found concerning.

Sarah says: "It really impacted my life. Due to the pain, I wasn't able to exercise, and this affected my mental health and confidence. I struggled to sleep because of the pain. I stopped socialising and it affected my relationship. It was really frustrating not knowing the cause and what to do."

After two years with no diagnosis, Sarah asked for an MRI on her hip, as she felt this was where the pain stemmed from – but instead was given another MRI on her back which came back clear. Sarah was then sent to a physiotherapist, who requested an MRI of her hip. The MRI showed muscle wastage around her glutes, and so Sarah was put on a programme to strengthen them. However, this had no impact on the pain.

Sarah says: "It was difficult to get the physiotherapist to listen to me, I knew my body and I knew all of the issues I was experiencing were connected."

Noticing patterns with her pain

It was around this time that Sarah noticed a pattern with the pain and realised that it was seemingly triggered by her menstrual cycle - as she experienced painful periods. Sarah was then referred to a rheumatologist who carried out further blood tests, yet another MRI on her pelvis and leg, and an EMG (electromyography) to evaluate the condition of her muscles and nerves. When nothing suspicious was found, Sarah was referred to King's College Hospital – who carried out another MRI, but this time using contrast. The contrast picked up a mass inside her pelvic nerves; which hadn't been spotted through any of Sarah's many previous scans.

Sarah says: "I was really anxious as my foot movement was getting progressively worse as the months went by. There was still no diagnosis, so I was not having any treatment. There was a concern the mass was malignant, so I was sent for a full body PET scan. While there was some FDG uptake in my pelvis, I was told it was not high enough to be cancer cells, which was obviously a huge relief – but still, something clearly was not right."

Discovering the condition 'sciatic endometriosis'

After talking to her sister about her condition, together they researched and found a case of 'sciatic endometriosis'. When her sister read out the symptoms, something struck a chord. "It was like they were talking about me - it finally linked my painful periods to the sciatic symptoms, and it made sense." Sarah says.

In January of 2020, Sarah met with Mr Marco Sinisi, a Neurosurgeon at the Royal National Orthopaedic Hospital, who organised a biopsy on the mass. Whilst the first was inconclusive – the second (carried out in April 2020) confirmed it to be an endometriosis tissue. "I remember crying my eyes out, to finally get a diagnosis was a huge relief. It was possible that this could be the cause of all my pain and the foot drop," Sarah commented.

Sarah and her sister continued to research the condition and learnt that it sat within a new field of medicine called neuropelveology – which combines multiple specialties, studying and operating on the nerves of the pelvis.

Turned to specialists at The Lister Hospital

Soon after, Sarah discovered Mr Shaheen Khazali, an endometriosis surgeon and one of Europe's few experts in Neuropelveology, working at Ashford and St Peter's Hospitals NHS Foundation Trust and at The Lister Hospital, a private hospital in Chelsea. After meeting with Mr Khazali, it soon became clear that a very complex procedure would need to be done. Thanks to the NHS partnership with independent hospitals over the height of first peak of the COVID-19 pandemic, Sarah was able to have this surgery as an NHS patient, at The Lister Hospital.

Sarah says: "Surgery and excision of the disease are deemed the best treatment; however, it is very risky and challenging surgery. I tried to seek out others who had undergone a similar procedure, but it was very hard to find anyone as my condition was so rare. I knew the footdrop and nerve pain was progressing and something needed to be done soon. Being progressive, it could cause further damage and my mobility could be reduced further and I may have to have crutches or be in a wheelchair. However, after meeting Mr Khazali in person, I felt confident that I had found the right consultant who would be able to help me."

Slow and steady recovery

Sarah underwent surgery in June of 2020 with Mr Khazali – who operated on Sarah alongside neurosurgeon Mr Marco Sinisi and colorectal surgeon Mr Phillip Bearn. Some of her pain disappeared overnight and she is now on the road to recovery.

Six weeks post op, Sarah comments: "My recovery is going really well. Just three weeks after I was able to walk without crutches, although a bit wobbly! I am still in the healing stage, but my pain is reducing. We cannot know for sure whether my foot drop will ever fully improve in time, but I am very hopeful. I wish to thank all those involved in my treatment, Mr Khazali, Mr Sinisi, Mr Bearn - I will be forever grateful for all they have done to treat this rare disease.

Mr Khazali said: "Endometriosis can affect various organs in the pelvis and even outside the pelvis, including the bowel, bladder, ureters and even the diaphragm and the lung. In all of these situations, surgical removal of the disease can be challenging. When endometriosis affects nerves, it becomes particularly tricky. That is because pelvic nerves form a very complex network and sit very deep in the pelvis, very close to large vessels. Finding these nerves and working around them requires special training and experience. I have been performing neuropelveological procedures for a while, but those procedures have always been to remove endometriosis or scar tissue from around the nerves or to preserve pelvic nerves. What was unique about Sarah's case was the fact that endometriosis was in fact invading into important nerves of the pelvis."

"The surgery was a success, and I am incredibly proud of how everyone, clinicians and managers, across different health sectors and different specialties, worked together as a team to make this highly complex surgery happen."