It’s been over seven months since I had surgery to remove all my endometriosis and while I’m still healing, today I’m going to share with you what happened and how my surgery didn’t go to plan and neither did my recovery because sometimes shit happens and you have to roll with the punches until they stop and then go your own way because as that saying goes, “when life gives you lemons, make lemonade.”
Living with endometriosis, that you have to make something good out of something bad otherwise you just won’t survive the rest of it and I’ve been extremely lucky to have such an amazing support group of family and friends and there is no way I would have gotten through all of this without their help and support along with the amazing care from the Drs, Nurses and Health Care Assistant’s at Scarborough Hospital. So here’s my story of when surgery just doesn’t go to plan.
On December 1st, 2016 I finally had surgery
To remove the endometriosis that was attacking my internal organs. Before I went for surgery I already knew that my ovaries were in the wrong place. One ovary was sticking to my intestines and the other to my womb. I had also been sick for a year and a half by this point and was in pain daily even when I was on the prostrap injections. Which makes your body think it’s going through the menopause. This was the second time I had done the fake menopause so I was sort of aware what would happen but it was a different type compared to what I’d received before.
To be honest whenever it was discussed about finally getting surgery to remove more of my endometriosis I always thought I’d at least get a colostomy bag and I always thought I might lose an ovary and/or my womb but it came as complete surprise when none of that happened and instead they removed my Fallopian tubes.
They removed my appendix because, well you couldn’t really see it, buried under all my endometriosis, a cyst on my ovary, two inches of my bowel where your small intestine joins with your large intestine, both my Fallopian tubes, as one was twisted and one was taken over by the endo and if that weren’t enough they also happened to have nicked my womb. What my anesthesiologist thought would be a 45 minute to 3-hour procedure took 5 hours! All that surgery not to mention the fact I also had a reaction to something during the procedure and broke out in a rash and while all that wasn’t a walk in the park the ‘fun’ wasn’t over there.
Oh, no siree.
I ended up staying in hospital for 6 days, because first, they wanted me to pass gas then have a bowl movement and during that time the gas just didn’t seem to want to come out and I started vomiting, (btw Dr’s suck when you tell them your going to vomit and you need something to vomit in and they just walk away!) so they tried to stick a tube down my nose and throat which resulted in me vomiting for ages but it got rid of the gas, then for some unknown reason or they just didn’t tell me why, I ended up needing a blood transfusion and my whole left side of my body was one big massive bruise. By day 6 I was ready to go to my Mum’s to be looked after and recover.
But the ‘fun’ doesn’t stop there.
Oh no. I’m just not that lucky. Four days into my recovery at my Mum’s we’d, my Mum and I, thought I’d pulled my stitches because my appendix scare started bleeding, it was quite a lot of blood but we thought it had stopped until the next morning when it started again so after ringing 111 we went to A&E where I got prodded and poked and tests were done and I was asked at least a dozen times what had happened because I’d had my surgery in Hull and was currently in Scarborough. By 10pm even though we’d been on a ward since 2:30 pm I was finally admitted and spent the next four days in hospital having scans and antibiotics but otherwise feeling just fine but tired.
Finally, it was announced that I had an infection and a ‘collection’ and that I needed antibiotics and after a massive crying jag, I was allowed to go home with more antibiotics and an appointment to come back on the 28th for a scan to make sure the infection and collection had shrunk or disappeared.
Sadly on Christmas Day, I started vomiting again. Boxing Day was much the same and I hadn’t been able to keep anything down on either day’s. On Tuesday my Mum and Step-Dad came and got me and packed me back up to go back to A&E and what we were guessing would be a longer hospital stay because clearly I still had the infection.
More than just infection
Well, it turned out that I actually had sepsis and they were worried about my intestines. By this point I was really sick, I hadn’t eaten or drunk anything in three days without vomiting and was in a lot of pain and I don’t really remember very much other than seeing a lovely Dr who had an awesome Scottish accent and told me I was very, very sick but I would be ok as they would look after me but I was going to be there for a while.
Turns out sepsis is bad and I was lucky that it hadn’t gotten to my organs (this bit my Mum told me). I was on strong IV antibiotics five times a day and two days later, still not being allowed food I was in a theatre room getting a ‘wire’ put into my arm so I could be fed intravenously by a bag. Lovingly called TPN. Which, they hoped would give my intestines a break and give them time to heal and to figure out if they were leaking at all.
I didn’t eat for 12 days!
Including those days before I was readmitted. I spent the next two and a half weeks in the hospital. I formed a love/hate relationship with my TPN. I had a 24 hour TPN, IV antibiotics 5 times a day, IV painkillers and anti-nausea, daily blood tests, IV fluid’s for the first few days to replace fluids, constantly having to have cannulas changed every three to four days, ultrasounds and CT scans every 2-3 days. And because I had to have five rounds of IV antibiotics, they had to be spread apart throughout the day and my last round of antibiotics finished at 2am practically every time and I was closely monitored so that first week I did most of my sleeping during the day between tests, Dr visits and medications.
Thankfully my collection and infection started shrinking. My collection was 6cms originally, eventually, it went down to 4cms. They wouldn’t operate on a collection unless it was 10cms or bigger I was informed. Like I wanted more surgery? It hadn’t gone so well the first time, no way did I want any more surgery. EVER. EVER. EVER.
My blood tests started to show good results and I went onto oral antibiotics and eventually got my TPN quantity reduced so I could start eating food and having bowel movements and then it got taken out and finally my blood came back clear! Even though I still had the collection at least the infection was gone. Huzzah!
However, on my last night in the hospital, you know that night that the news went crazy about too many people being admitted and there not being enough beds. Yes, this was at the beginning of January 2017. I spent all New Years in Hospital. So as I was saying after an awful night where I was moved from my bed space to the side of the room because they were running out of space and received an awful apology from some woman who was just too rude, I was allowed to go home! With more antibiotics and medications and protein drinks than I thought possible, I thought that was that and the worst was behind me.
A week later
However, a week later I was in agonising pain and ended up being readmitted again for another six-night stay in the hospital and was happily reintroduced to strong painkillers and morphine. Hello, morphine my old chum. I’m not quite sure what caused the pain and neither are the Drs 100%, it could have been the collection being irritated by my bowels or things stretching and healing, either way, I was in a lot of pain and my blood showed that something was wrong as my count had dropped again. I was really lucky to get back in the same ward I was on before so I knew all the nurses and healthcare assistants. Who were lovely, wonderful and understanding.
But by this point, I had lost December and January to hospital stays and wondered if I would ever be free. During that stay, I started having panic attacks. A few days in I had my first panic attack, I’m really not sure what caused it but that night I ended up having a total of eight panic attacks and the second night I had five!
Thankfully I haven’t had another full panic attack since I have had a couple of mini ones and a few close brushes but have been lucky enough to be able to calm myself down but god if you go through them on a regular basis my heart goes out to you because they were just awful.
After the last 6 night stay and everything looking as good as possible on my last CT scan, my collection was down to 2cms and I was allowed to go home with more drugs. Thankfully I haven’t had another hospital stay since or CT scan, or X-ray or Ultrasound and yes these were all scan’s that happened every three days more or less during my stay but my recovery process has been an extremely long one and while this post has topped in at over 2,000 words I have condescended this A LOT, I haven’t shared the tears, the vomiting, the lack of food, only being able to drink small amounts, the pain, the lack of life feeling, missing my husband, the lost hours of sleep, the noise, and other such fun things.
I don’t want you to misunderstand my point. Because my point of this post isn’t to depress you. It’s to share that even with the best-laid plans nothing will go as you want and while everything can go tits up, you can get over it and recover. I want to say that I went through all of that and still maintained my positive outlook because honestly, I didn’t. I’m not going to lie. It was hard and tough and painful and some days all I did was sleep. But I was determined to get through it and I was lucky I was surrounded by such good nurses, Dr’s and healthcare assistants that made me smile and laugh, forced me to eat and make sure I drank enough. Because even though I was on the TPN I still lost a stone while I was in the hospital. It was a really hard time and I wouldn’t wish it on anyone but sometimes shit happens and you just have to roll with the punches until you can change things. Then fucking change them when you can because you are the ruler of your own fate.
If you’ve read this far, thank you, from the bottom of my heart, thank you, I hope sharing my surgery story hasn’t depressed you because that wasn’t my intention I just wanted you to know that sometimes shit hits the fan and you have to still deal with it, no matter how much you don’t want too.