*Please note that this is my own experience and a reminder for you to always follow the guidance of your own specialist and GP. My Endometriosis is going to be completely different to others, hence why it’s important to follow your own plan, put in place by your own specialist team.
The date is the Monday 25th January 2021 and I’m 7 weeks post op today! On the 7th December 2020 I finally had my first Endometriosis surgery with Dr Mabrouk and Dr Banerjee at Addenbrookes Hospital (which is a BSGE centre). Before I get into the details of my experience, I thought I should just give you a bit of background about my Endometriosis diagnosis.
I started my periods when I was around 15/16 years old and from the onset, they were excruciatingly painful. I would be bedridden or housebound for days in pain, I would miss school or university and need max amounts of over the counter painkillers and even they didn’t work. I was back and forth to doctors constantly, yet no one would listen. I was told “it’s normal”, “you are one of the unlucky ones”, “it’s just something you have to deal with as a woman” and I was even asked “are you sure you are not over-exaggerating?”. It wasn’t until I started getting chronic pain in December 2018, that Endometriosis was started to be investigated, although I still faced many barriers. When I eventually had an MRI in April, I found out I had severe Endometriosis all over my left ovary, with my bowel being attached to both my uterus and ovary. I was initially put on 6 months of the mini pill, which didn’t do anything and I only got worse from there. I was put on the surgery waiting list in December 2019 to have extensive Endometriosis excision surgery with involvement from the Endo specialist, colo-rectal surgeon and a urologist. I eventually had my surgery in December 2020 and that brings us up to now…
The surgery experience started with pre-op just 2 weeks before my operation – if you’ve never have pre-op before, they basically ask you lots of questions about your previous health, do a urine dip and some blood tests. If you need to do a special diet or bowel prep prior to your surgery, you are given all the information and medication that you need to do this at pre-op. A few days prior to my surgery I had to have a low/no fibre diet which involved eating very plain foods and no fruit or veg, but it was manageable for 3 days.
Then we come to the dreaded bowel prep, I was given Movi-Prep which I had to mix into two separate solutions of 1L and drink one in the early afternoon and then one later on in the day. Honestly, it wasn’t as bad as everyone said it would be. It didn’t taste amazing, but it was manageable. I also took some antibiotics in preparation for the bowel aspect of my surgery.
Some of my top tips for bowel prep:
- Mix in some squash or something that takes the taste away (you can’t add anything red or black – so no fruit juices or squash this colour)
- Drink it cold – put the water you are going to mix with the bowel prep in a fridge for a few hours prior to making it up
- Drink it through a straw, it easier to keep drinking it this way
- Hold your nose and do big gulps (I managed to drink a glass every 15/20 mins)
- Have a nice tasting drink for you to sip to get rid of the after taste
- Make sure you have soft toilet wipes (flushable), as your bottom can get sore
- Put some sudocrem or Vaseline around your anus to stop it getting red and sore (trust me, it works a treat ahaha)
- Drink lots of water! You will become very dehydrated with the bowel prep, so even though you’ve drunk lots of bowel prep solution, you need to drink extra water or fluids too.
On the day of surgery, I got up at 5.30am (ngl, I was sat on the toilet until like midnight and then on the toilet literally until I needed to go – the bowel prep certainly did the trick 😅) , double checked my hospital bag and then headed on our way, as we had to be there at 7am. Thankfully Ben was allowed to come into the hospital with me to help me carry my bags, but he had to leave me outside the Day Surgery Unit (this was due to COVID-19). I was taken through, then I was checked in by a nurse and moved to a separate waiting room. I was second on the list (there were only two of us on the list that day), so over the next few hours I proceeded to speak to my consultants, sign my consent form and speak to the anaesthetist. My whole team put me at ease and made me feel very safe. The anaesthetist gave me a choice in my own pain management plan – she initially offered me a spinal block injection to help with post surgical pain. However, because I didn’t know this would be an option, I felt a bit overwhelmed and honestly didn’t want to have go through anything else that would make me feel more nervous. So instead we opted for a PCA (patient controlled analgesia) instead for post surgical pain, as well as them keeping me topped up with pain relief and anti-sickness meds during my operation. She also took my other conditions into consideration and said that they would think about my position during surgery and keep moving my limbs around to avoid worse fibromyalgia pain, which was really reassuring!
When it was nearly time to go in, I was taken through to the changing rooms where I took off all my clothes and put on a hospital gown, dressing gown, compression socks and slippers. My bags were tagged and locked up securely until I came out of surgery and taken up to the ward. I was brought into an anaesthetic room at 11.30am where I saw my anaesthetist and another nurse, they were both very kind, kept me calm by talking to me and making me laugh. Whilst they were talking to me, they asked me to take my arms out my gown and they covered me up with lots of blankets to keep me warm. They put ECG type stickers on my chest, a probe on my finger and explained to me what they would do next. They inserted a cannula into my wrist. Unfortunately I was very, very dehydrated from my bowel prep (I defo did not drink enough water to equate the loss of fluids), so getting a cannula in was very difficult, hence why they went in my wrist. They asked me to hold a mask over my own face, breathe deeply and I remember talking to them about what kinds of TV Ben and I enjoyed watching before I fell asleep! Whilst holding the mask, they put the medication into my cannula to send me to sleep, which made my arm feel a bit tingly and cold (which is all normal).
Once I was asleep, my surgeon informed me after that they spent an hour re-hydrating me – I literally had cannula holes all over my body: both my arms where elbow is, middle of both arms, on my ankles, feet, both hands and then they eventually put a central line in my neck to give me an hour worth of IV fluids! They also managed to get another cannula in my hand, so they took the one in my wrist and the central line out. My surgery took 4 hours in total, including the 1 hour of rehydration. They also did a cystoscopy to check for Interstitial Cystitis and put dye through my fallopian tubes to check for any blockages that may cause me to be infertile.
When I woke up, I looked at the clock and it was around 3.45pm, I was on oxygen via a mask and I had a catheter in situ. Initially my pain was an 8/10, but they increased my continuous rate on my PCA of IV oxycodone, which helped ease my pain and brought it down to a 1/10. I didn’t feel nauseous, I wasn’t sick and I just felt really sleepy/spaced out. I was moved back to the ward at 4.30pm. Due to further COVID restrictions, Ben wasn’t allowed to visit for the first 48 hours. For the first 24 hours, this was absolutely fine as I was quite out of it on lots of meds, but I did ring Ben and my family so I had some company.
“I was told by my consultant that they found severe, deep-infiltrating Endometriosis all over my left ovary, recto-vaginal area, my sigmoid colon, my bladder and both my kidney ureters. My left ovary and my bowel was attached to the back of my uterus. I was also diagnosed with Interstitial Cystitis after my cystoscopy showed chronic inflammation in my bladder.”
I thought I’d quickly share a few essential items which I couldn’t have been without in hospital:
- My electric heating pad and/or TENS machine (as you are not allowed hot water bottles)
- Peppermint tea and peppermint capsules – these were a lifesaver for the gas pain post surgery
- Lip balm – I bought a lanolips with me and it was perfect as my lips were so dry after the anaesthesia and oxygen
- Period pants or heavy/wide period pads as the hospital pads were so bulky and uncomfortable
- Dark underwear in a size up from normal – to accommodate for the bloating and if you need to have a catheter in
- Baggy clothing to go home in – ideally loose joggers and baggy t-shirt or loose t-shirt dress
- Baby wipes – you can’t/won’t feel like showering so baby wipes help you feel a bit cleaner
- iPad (also make sure to download stuff to watch as hospital WiFi is not great and the TV’s are so expensive
- An extra long charger
- Pillow to put in between your tummy and the seatbelt on the way home
- All your regular medications, just in case they don’t have your ones available
- Snacks – trust me on this one, hospital food is gross and you probably won’t feel like eating full meals anyway
I spent the first 24 hours post surgery completely and utterly spaced out, pressing my PCA button for a bolus on oxycodone when my pain got worse. I was on IV fluids, IV paracetamol, I was being given regular IV anti sickness, (cyclizine was my favourite, according to my texts to my friends and family haha – I was telling everyone it made my toes tingly and my head spacey) my catheter remained in situ until the day after surgery, when it was taken out for me to try and pass urine without it. I was also having daily blood thinning injections to stop me getting blood clots whilst I was not that mobile.
The day after surgery I was taken off my PCA around 11/12pm, similarly with my catheter and was changed to oral medications and anti-sickness. The HCA’s helped me mobilise and walked with me to the toilet as I was very dizzy on standing for the first time. I failed my first TWOC (catheter coming out and being able to wee on my own) because I couldn’t pass any urine, my bladder felt in a weird spasm and hence I was retaining a lot of urine, so the catheter needed to be put back in.
My second night in hospital was really hard, I think the transition from IV pain relief to oral medication was a lot for my body to handle, which caused me to be in a lot of pain (the gas/referred pain in my ribs and shoulders was the worst, much worse than the internal or incision pain). I ended up in floods of tears to my nurse (shoutout to Lindsey, because she was so kind and always made time to sit with me and calm me down when I was feeling sad, anxious or in pain, no matter how busy she was). I ended up having hefty doses of oral morphine, Dihydrocodeine and paracetamol all night. But thankfully the next day I felt a bit brighter and when the consultants came round, they told me I needed to pass wind before I was able to go home (as I had bowel surgery). I was being discharged with my catheter in for a week, as my bladder has always been very temperamental. So I had to come back and try the TWOC again in a week, once my bladder had rested and healed some more. Once I had received my medications and injections to take home (I had to give myself the blood thinning injections at home for two weeks as well as wearing my compression stockings), my discharge letter and confirmation from the doctors, I was finally allowed home at 10.30pm on the 9th December!
My recovery time for this large, extensive surgery is 6 weeks – so I should begin to feel a bit brighter by then. 12 weeks is when you are internally healed. I have been told I will notice a difference in my pain between 3-12 months post surgery.
Recovery has been a very complex one… but more on that in another blog post! I hope this post has been an interesting one to read and that it helped you understand a bit of what the surgery process is like!
Always here to chat to if you are feeling apprehensive about the surgery experience as I know it can feel very daunting! Please don’t hesitate to ask any questions or share your own experiences below.
All the best, Abbie x