Bloody hell it’s been a long time since I’ve posted on my blog. So long that I’m now actually coming up to the final stages of getting booked in to have another laparoscopy.
I thought I’d best let you all know what has been happening in my time away and what’s been happening since my first endometriosis surgery 3 years ago today (happy endoversary to me!).
Back in January, I had an appointment with an endo specialist since my symptoms were getting worse and worse and I started thinking that a second surgery would be a good option. I’d heard so many good things about the doctor, so I wasn’t overly worried. As soon as I explained to her how my previous surgery was cocked up, she got really defensive and started to back up the surgeon. Turns out she was trained by that surgeon and said what an incredible surgeon she is, so she knows that the surgery didn’t go wrong, and it was just my body’s way of dealing with the operation. She also said because of how I apparently ‘heal’, she wouldn’t want to operate and because of how ‘amazing’ my other surgeon was, she doubts she would even find any re-growth.
After examining me, she suggested I tried Prostap injections. Prostap is a type of hormone therapy but is also used as chemotherapy for certain cancers. Whilst having Prostap, it’ll temporarily put you into menopause and ‘starve’ the endometriosis of oestrogen which will then reduce the speed of the endo growing. To me, it didn’t make sense to put myself through chemotherapy to slow down the growths when she had already said she didn’t believe she would find anything if she were to perform surgery. It’s one of those marmite treatments – some saying it’s the best thing they’ve ever done for the endo, whilst others say it literally made their life hell due to the side effects. I’d already previously researched it whilst I was in recovery 3 years ago, and personally I didn’t feel as if it was the right treatment for me. My body is pretty tolerant of medication, but this was one I didn’t really want to mess with.
Aside from spouting out shit for half an hour, she suggested I went to visit a pelvic pain clinic. 3 years ago, I’d previously been told I had an appointment booked in whilst I was admitted, however, it turns out the doctor never made the appointment, so I never went to see them. The specialist explained that I’d have to see not one, not two, but three different people during my appointment – the pain clinic senior, a pain psychologist and a physiotherapist.
Luckily, I only had a few weeks wait until my appointment. I looked online and a lot of people said they had several months to over a years wait, so I have no idea how I was seen so fast.
I have to admit, I was pretty apprehensive about the appointment. I didn’t really know how much help they would be, I didn’t need to see a psychologist and since it was at the hospital that treated me so badly previously, I thought I’d have a fight on my hands.
Turns out, it was the best appointment I have ever had with any doctors before.
I explained the whole story. My symptoms, my surgery, the aftermath of the surgery, what helps the pain, what doesn’t help the pain etc. Before my appointment, I also wrote out all my information that I thought would be helpful for them, and also so I didn’t forget to tell them anything. Half way through the psychologist left as she agreed I didn’t need to talk to her about anything and she was really happy with where I’m at mentally. The only thing she said was that I need to slow down and start putting my health before other things like work.
After a long chat, the pain clinic senior said how she completely understands why I would never have surgery at that hospital again and understood all of my concerns and worries. Unlike the other specialist I saw, she agreed with me that it’s time for a second laparoscopy. Before my I have my surgery, she wants me to have an MRI to see if that shows up anything. Endometriosis is pretty much impossible to spot on any type of scan, but she also wants to check for cysts and scar tissue that may have grown. She explained that if the scan is normal, she’ll refer me to a surgeon in Cheltenham, however, if the scan shows anything major, she’ll refer me to one of the big endometriosis specalist hopsitals in either London or Birmingham. Not ideal, but definitely the best call.
Then the physiotherapist examined me both externally and internally. She said my pelvic floor muscles weren’t great, and it may be a good idea to have physio after my surgery to try and improve them.
I can’t tell you how much of a relief it was to see 3 different people in one appointment and for each of them to actually believe the pain I’m in and for them to come up with a plan that doesn’t involve pumping me full of any more drugs.
And that’s where I’m up too now.
Unfortunately, due to Coronavirus, my MRI scan has been pushed back 3 times but is now booked in for the 8th June. I’m not overly worried about what/if the scan shows anything abnormal, but more curious as to what’s happening inside me. Before lockdown, I was hopeful that my surgery was going to be in the summer, but since so many booked operations have already been cancelled, I’m pretty sure it won’t be until the end of the year/the start of next year.
I’ll keep you all updated on what my MRI shows and everything following that. For now, I’ll be huddled on the sofa, morphine in one hand and a hot water bottle in the other.