I wasn’t going to write a blog post about this. I have published personal stuff about my health on the blog before, but it’s always been beauty related (e.g. my rosacea updates). But this is something else. And it’s so personal and so hard to talk about that I didn’t think I was going to talk about it. But the past week has made me feel so angry, frustrated and helpless that I don’t know how else to deal with what is happening. I wanted to talk about my surgery and why I feel let down by my surgeon.
About 2 years ago I was told I had Adenomyosis. This gave me some answers to health questions I had had for a while but also raised other questions. Just after I was diagnosed, I was put on the waiting list for a laparoscopy so that they could look for suspected Endometriosis. The consultant at the time was fairly sure they wouldn’t find anything but surgery was the only real way to find out. I was nervous, but pleased that we were finally moving forward with a potential diagnosis.
Fast forward 16 months and I mentioned to my GP that I hadn’t heard anything about my surgery date. He was pretty shocked as the waiting list isn’t usually that long. After multiple calls to the UCLH, it transpired that my name had ‘been missed’ off the list. Yep. I’d been waiting for a call that was never coming as I’d never actually been put on the list. Excellent. I moved on, accidents happen, etc.
Last Friday I finally had the surgery. I was pretty nervous because the very nature of the surgery is uncertain – they make tiny cuts, inflate your abdomen and have a nosey around. If they find any endometriosis, they burn it out there and then. This made me unbelievably anxious. I had no idea what I would wake up to, how much pain I’d be in, what care I’d need, how long I’d be off work. I was going in to the surgery completely blind. I just kept being to trust in the doctors and that as soon as the surgery was over, everything would be explained and we could work from there.
Friday’s surgery came and went with no complications… that I know of.
Because here’s the issue. No one did come to talk to me. No one did explain what they found. No one did allay my fears or explain the next steps. The surgeon had left for the day so a nurse who was unrelated to my case came to discharge me. At first he didn’t want to tell me anything at all about my surgery until I started crying and demanded he tell me something. Anything. He quickly scanned my notes and said ‘oh yes, it says something here about endometriosis removal.’ That was it. Any further questions could not, or would not, be answered. I was given quick instructions on how to care for my dressings, not to drive or operate heavy machinery, advise on how to avoid DVT and a bag of painkillers. I had no idea how much endo they’d found, what severity, where, what this meant for me, how the recovery would affect me, if I needed a follow up appointment… nothing. They told me to call the surgeon on the following Monday (3 days after my surgery) to get answers to these questions.
First thing on Monday I called the hospital to be told the the surgeon was in clinic and would be unable to speak to me. I was told a nurse from his team would call me by the end of the day.
4.45pm rolls around and… nothing. I rang again and was told someone would definitely call me on Tuesday morning.
Tuesday lunchtime (that’s 4 days after my surgery) – nothing. I call and was told (by a very arsey woman) that someone would call me by the end of Tuesday. At 2.30 they call me to say that actually the nurses are both on annual leave so they won’t be calling me until tomorrow,
Wednesday (today – 5 days after my surgery) – nothing. I call at 4pm to be told ‘they might call you after clinic finishes at 5pm, if not call me back and I’ll make sure someone calls you tomorrow’. During the course of today I have also called my GP to see if they can help (they have yet to be sent my file so can’t tell me anything) and PALS (Patient Advice & Liaison Service) to see if they can help. They closed at 4pm, which is helpful as I rang at 4.10pm.
So here I am. 5 days after my surgery and I still have no answers. I was cut open and parts of me were apparently removed but no one thinks it necessary to explain that to me. Or tell me what happens next… or what this means… or what my recovery will be like. Or give me an idea of how long I’ll feel like this.
Every person I came into contact with in the hospital was lovely and friendly. They were as helpful as they were allowed to be. It wasn’t their fault that I was discharged without being given any of the basic information that would have made the last 5 days less terrifying and stressful. But I cannot comprehend how this is acceptable. A person should not be left in the dark about what happened to their own body. They do these surgeries multiple times a day, so maybe this isn’t that big of a deal to them. Maybe they don’t get that to a regular person, surgery is a big fucking deal. That being put to sleep, cut open, and then ignored for 5 days is absolutely terrifying.
All I can do is keep calling the hospital and getting fobbed off until someone decides to take the time out of their day to talk to me. But the problem is that I’m doing this multiple times a day instead of resting. Instead of sleeping. Instead of healing.
There is no point to this blog post, other than it has made me feel slightly better to get it all out. I almost feel sorry for the nurse who eventually rings me…
UPDATE 16/07:
So I have finally been contacted by the nurse. She was very defensive at first but after hearing what had happened so actually seemed genuinely annoyed on my behalf and concerned that I had been so upset and worried since my surgery. She is personally going to look into what happened as it seems that there were multiple errors in how my case was handled and things that shouldn’t have happened. I shouldn’t have been allowed to leave the hospital without *someone* talking through my surgery and explaining next steps. I shouldn’t have been told that the team would ring me on Monday as they don’t actually work Mondays *facepalm*. Once I wasn’t in touch with someone at that point, I should have been offered contact with another doctor who could at least put my mind at ease about the surgery just from simply reading my notes.
The most important thing now is that they’ve confirmed that my surgery went very well, they did find endometriosis but it was mild and in easily accessible areas. All of my current aches and pains (including referred pain in my shoulder… which makes no sense AT ALL! Stupid body) is totally normal. I’ve been signed off until Thursday next week. I just wish I’d known all this last Friday. I feel like the past 6 days have been so much more stressful and upsetting than they needed to be. The nurse has given me the option to make a formal complaint which I’m still thinking about.
Thank you so much to everyone who sent tweets, emails, flowers, cards, pictures, texts, FB messages, puppies (not really, no one loves me that much). You are all incredible. Those of you who offered medical or experience-based advice, you helped me enormously. I felt very lost until I decided to talk about this on twitter and on here. You ladies are amazing *all the heart emojis for you*.
Here’s to healing.
Feb ’16 UPDATE: It has been just over 6 months since my surgery and I feel so lucky. During the surgery, they inserted the Mirena coil which, combined with the removal of some of the endometriosis, has dramatically improved my quality of life. My periods have basically stopped (this is not guaranteed, but fairly common) and, although I still get terrible pain, the frequency and length of the pain is vastly reduced. The 3 scars are much lighter and 2 of them are barely noticeable which was another concern of mine. Long story short, I wish that I had had the surgery years ago.
Jan ’17 UPDATE: I have had one period since my surgery and it was very light and lasted for only one day. However, I have been experiencing more pain over the past 4 months, which has increased in severity. Over Christmas and New Year I had a few bursts of pain that made me yelp, took my breath and made me want to vomit. I’m going back to the doctors to see what they say, although I know that after my surgery I was told that the results are not guaranteed to be long-term. I know many women whose Endometriosis has returned regularly and has resulted in repeat surgeries.
If you have any questions about the surgery, endometriosis or my experiences since please feel free to email me using the contact form at the top of this page.
Lex