My excision experience in London with Peter Barton-Smith
It's been just over a year since I underwent successful excision surgery for endometriosis at the Princess Grace Hospital in London, so I thought I'd share my own personal experience with you incase you are considering travelling to London for excision surgery.
On 28th June 2021 I flew to London for my consultation with Peter Barton-Smith, and prior to this I had an appointment with his imaging expert Prof Jurkovic to undergo an ultrasound to map for surgery and check for signs of adenomyosis. Mr Barton-Smith and Prof Jurkovic prefer to use this modality over MRI imaging. The ultrasound thankfully showed no signs of adenomyosis, despite being told I had it by Prof Wattiez in Dubai in 2019 when I was out there teaching. This had caused me to have 2 years of extreme, undue worrying and that my only resort would be a hysterectomy to manage my pain and symptoms which were continuing to worsen. Prof Jurkovic assured me that even though there were no visible signs of endometriosis during my ultrasound, my symptoms pointed strongly to still having the disease.
I walked from his beautiful Harley Street clinic to Peter's office at the London Digestive Centre on Wellbeck Street. As we were still in the middle of the pandemic, the London streets weren't overly busy so it was nice to get out in the fresh air.
At my consultation with Peter we discussed my continuing symptoms and he asked me my day-to-day pain level. I replied 6/10 - in reality it felt more like 7/10 but I didn't want to come across as a "moaning Minnie"! Seeing Peter's shocked face, I asked if it was supposed to be 2/10...he said no, it should be zero. It had not occurred to me that I could achieve being pain free at this point as I had put a monumental effort into managing my endometriosis and was still, technically, a chronic pain patient and feeling awful most days.
I can confidently say that the key to my life-changing recovery has been expert excision surgery. Up until that point I had tried everything - pelvic physiotherapy, general physiotherapy, ibuprofen, acupuncture, supplements (like Omega 3), Epsom salt baths, foam rolling, but I was still spending a lot of time in bed. I had days with full body aching pain but had no idea until my appointment with Peter that much of this was being caused by inflammation from endometriosis. I was offered a few surgery dates and I opted for 6th August as I thought it would be better to enjoy my summer first, incase I didn't make a good recovery from surgery. With the benefit of hindsight, I would highly recommend that you choose the soonest appointment your surgeon has to offer. I'll explain more about this further on.
I stayed at an Airbnb prior to and after my surgery. This meant I could self-isolate to protect myself from contracting Covid (and the surgery being cancelled), and also meant I could attend pre-op assessment in person at Princess Grace. I was also within walking distance of the hospital so I did walk there on the day of my surgery (with a weekend bag) so that I could have some exercise and circulation in my legs (surgery increases the risk of DVT).
My surgery was in the morning of 6th August and took around 1 hour overall between arriving at theatre and returning to my ward. Endometriosis was found, again. In my surgical report Peter has noted 'endometriosis - recurrence (?)'. We don't know for sure if endometriosis can recur as it's more likely to be residual disease that was not removed correctly at the previous surgery. My NHS surgery was 5 years prior and this is a common window for endometriosis to "recur" in. Further, only two patches of endometriosis in the peritoneal lining were found, whereas at my previous surgery endometriosis was found in several places.
The main issue was that the endometriosis had aggressively inflamed all the tiny blood vessels in my pelvis and they caused so much bleeding at the start of the surgery that Peter could hardly see what he was doing. He also showed me this on the video recording of my surgery the next day.
Directly after surgery
I felt very nauseous and dizzy, although the medication helped with this. I didn't want to eat anything at all but was encouraged to by the nursing team. I had ordered my food for post-op the day before (the menu was better than a 5* hotel's) and was told that my tomato allergy could be accommodated as someone else on the ward had an allergy so the chef would make something specifically just for us.
After a few hours I was ready to eat and was very happy to see a full tray arriving - with peppermint tea in a teapot! I took the lid off the soup and, looking at the bright red staring back at me, thought it might be red pepper. I tried a spoon and could have sworn it was minestrone...when the staff member came back, she apologised and replaced it immediately with the chicken soup which I was supposed to get. It was only her first day in the job so I couldn't complain too much!
I had a catheter in so I didn't have to get out of bed much at all on the first day, I just made sure to keep moving my legs. My hand really hurt from the catheter and I had the shoulder and upper abdominal pain from the gas used to expand my pelvic cavity during surgery. In terms of pelvic pain however, I had next to none - it hurt to sit up a little but was bearable.
The next morning my hand was hurting intensely at the site of the cannula. I remember when it was inserted while I was in the operating theatre, I actually yelped and tried to pull my hand away. The nurse took my cannula out but my hand was still sore for hours afterwards. I've now discovered that the anaesthetist actually damaged the valve of my vein and it's taking a long time to heal. My GP prescribed Tiloket gel which gave me some relief in the short term (after trying arnica and ibuleve which didn't help at all). My vein swells up too much during hot weather, or if my hands get too hot for any other reason. This has been a huge downside to my surgery as when the vein was particularly sore it was keeping me awake at night. There also don't seem to be many solutions to helping it heal (I also consulted TCM practitioners).
I wasn't allowed to go home the next day until I could empty my bladder properly, which took hours, as I couldn't feel any sensations. My bladder had over 1000ml of fluid in it and Peter said I couldn't leave until it was 100ml or less. Cue the nurses constantly coming in and making me get of bed to pee so they could measure it. They also did mini ultrasounds to see how much was left in my bladder. I was feeling pretty rough and eventually around 6pm they bought me some dinner, another ondansetron (anti-nausea) and some more painkillers. Finally at 8pm when we got to 107ml, I was discharged, which meant I could avoid paying for another night in hospital - the staff were really great about this. I ordered an Uber and one of the nurses carried my bag down for me and put it in the boot of the taxi - can't emphasise enough how helpful all the staff were. They really went above and beyond! I got home, did my teeth and went straight to bed to watch Friends on my laptop.
I woke up the next morning...to the sound of the fire alarm. I was staying in an apartment on the 6th floor and one of the other apartments who'd been having a house party managed to set the alarms off. This meant the lifts were out of order and we had no choice but to evacuate and walk down the stairs. The fire service had arrived at this point but couldn't get hold of the building manager as the details had not been updated in the foyer. They didn't know how to access the control panel so we had to wait outside for around an hour. I was in my pjs, so couldn't exactly go far! I recommend you book a ground floor apartment in case your mobility is restricted after surgery.
Monday morning I flew back to Belfast via Heathrow as it was much more convenient than Gatwick. I got an Uber from the apartment all the way to the terminal doors which took 45 minutes and cost £26 - worth every penny! The driver helped me lift my suitcase in and out. The airport staff were also great, the ladies at Aer Lingus lifted my suitcase for me to get the luggage tag on. I requested assistance at Belfast and again was helped with my luggage at the other end, and even though no one was allowed into the terminal due to Covid, my mum was able to come and meet me. I cannot emphasise enough that if you travel alone for surgery you need to keep asking for help, most people genuinely want to help you.
Monday morning was also when I stopped taking painkillers as I already felt so much better. Mid week I was able to sleep on my side with no discomfort, which wasn't possible after my last surgery. Something felt different this time - it's like the endometriosis was really gone for good and I felt "lighter". I had a full body reiki session a week before my surgery and I think this helped too - it certainly got rid of any anxiety.
As Peter's team was then taking their summer break, I didn't get my histology report until September. It confirmed endometriosis.
I had my six month review in January 2022 with Peter over video call. He was very pleased that my pain is now 0/10. This is a lot better than most people and I've been very lucky. I did however put a tremendous amount of effort into improving my health before surgery. I'm still having a lot of right hip pain and Peter gave me some advice about this.
One year on I continue to have pain-free periods the majority of the time, no pelvic pain, nausea, full body aches etc etc. I'm able to do yoga now without feeling horrendous 2 days later. I'm able to go for long walks (and drives) without having severe anxiety over where the nearest toilet is as my bladder was affected by endometriosis.
I'm still having PMS occasionally, so I've been seeing a TCM practitioner for an individualised herbal formula to help with this, as well as acupuncture. I have phases of extreme fatigue and this is being addressed too. My GP wanted to diagnose me with fibromyalgia around February through a diagnosis of exclusion but I realised I hadn't given myself enough recovery time. It's taken about 6 months for all the inflammation in my body to be processed. So, 12 months on, I don't have those fibromyalgia symptoms any more. I do get days where I am very tired but there may be no avoiding this as endo is a lifelong condition, regardless of excision surgery.
My surgery cost was £4885, plus the anaesthetist's fee which was billed separately. My surgery cost substantially less than most people's as I have/had superficial peritoneal endometriosis which was straightforward to excise and therefore did not require the daVinci robot. I also did not need any additional surgeons such as a bowel surgeon (my symptoms were caused by endometriosis, not endo on the bowel itself etc etc). Peter's surgeon fee is actually incredibly reasonable at £950, the hospital stay makes up the bulk of the cost at £3200+. This is why you need to budget for additional nights stay if you have highly complex endo and need additional recovery time - but Peter will keep you right with this.
My initial consultation with Peter cost £395 and my appointment with Prof Jurkovic was £290.
In addition to my flights for both the consultation and actual surgery, Airbnb, food, taxis, Tube, Heathrow Express, and follow up consultation fee at £295, I estimate the total final cost came in at under £7000.
If you have any questions about my experience you are very welcome to email me: endoawareni@gmail.com
You can learn more about Peter here: https://www.endometriosisclinic.co.uk/mr-peter-barton-smith
