I know that this is not the normal type of content that you would see on my blog. But it is something that has happened in my life that I want to share. And a year on and feeling better than I ever have. I’m hoping that talking about this will mean that someone else will have the courage to stand up to their GP. That may lead to a *spoilers alert* endometriosis diagnosis and hysterectomy.
All my life I have had painful periods. Now, this may seem innocuous, and you may go “Sam, we all get pain during our periods.” Yes, this is true; however, mine had been to the point of being double over in pain and crying because of them. I know that some people will roll their eyes at this. That’s fine and good for you and some may say that I was overreacting, my GP was one of those people. I really wish I was overreacting.
I’ve had periods since the age of 11, and I started on the pill as soon as the GP’s were happy to do so. Then it was a case of jog on you’re a woman now.
The years following were ones of pain, frustration, and generally feeling like rubbish. I would have pains so bad that I would have days off school because of it and no number of painkillers, hot bottles and heat patches helped.
I’d tried every trick in the book. Haha, book, as if there is a book on this. Some helped alleviate the pain, but it never went away. Nor did it ever 100% of the time get rid of them. Throughout the years, I was put on a number of different pills to try and fail to control the pain.
At one point I stopped taking them all together! They weren’t helping, and they were just causing me more grief than relief.
At the end of the day, I had to learn to trust my body to give me signals that I was going to have a bad period. Now, this is not to imply that I didn’t have months when it would be just a heavy flow with little pain, but they were still painful, just more manageable.
Now, you may be reading this and thinking that this has nothing to do with you, and that’s fine. But if some of this is sounding familiar, then I encourage you to press on your GP for a referral to a Gynecologist. I really wish I had sooner.
To the hospital!
In October 2021, I had a pain that started in my right lower abdomen. I thought it was my appendix, it was a pain that I had never had before and it was so painful that I went to A&E to get this looked at. Now because this was during the height of the pandemic, I had to do a lot of this on my own. Jono was not allowed to come into the hospital with me. He had to stay in the waiting room or had to leave the hospital completely.
After talking to a nurse in A&E I was sent over to the GP’s in the hospital and while talking to them as they had a poke at my stomach they thought it might actually be coming from my ovaries and uterus.
So, off to the surgical assessment unit where I had an x-ray, blood tests, CT scan and night’s stay in the gynecology department at the hospital. The results from that ct scan showed that I had three cysts. One on my left ovary, one on the right, and then one on the left side of my uterus. And not only were there cysts, it also strongly suggested that I have endometriosis.
You can imagine how I felt after being told that I had 3 cysts in me. Not only that, but they were each the size of an avocado. WTF do we do now, was one of the main thoughts that I had going through my head, among other words.
Out of left field
This is already a shitty situation, nothing could make this worse could it!? No, don’t be foolish having 3 cysts and an endometriosis diagnosis was bad enough, surely. Oh no, Friday, November 19th 2021, I got a call at 9 am from one of the gynecology nurses at the hospital to talk to me about the results of the blood test that I had.
One of the things that they look for in the test is Cancer. Yup, the big C. And I was on my own, Jono was at UnGagged at the time and about to give a talk. So, I was very much on my own. However, I was able to reach out to a friend Thijs, who unfortunately had to deal with a rather weepy and numb Sam over a Zoom call.
If you have ever had to deal with cancer, either yourself or with a family member, you can only imagine what was going through my head during that call. I don’t think I can even describe how I felt on that call. There are no words big enough to describe the feelings. Overwhelmed, terrified, panicked, numb, dread are probably the closest that I can get.
I’m sure you can imagine that my brain started thinking about the worst things possible and I could not think straight at all so, I messaged Nynke, my work manager at the time, and a remarkable human and told her about this.
And once I knew that Jono was out of his talk, I got on the phone to him to tell him, and he got an early train home. Needless to say, that weekend was very much one of trying not to panic. They were not 100% sure it was cancer but it could be.
To the consultant!
3 cysts, endometriosis and potential cancer. November was shaping up to be a rather shit month. The next steps were to have an MRI scan to see where and how bad the endometriosis was and if it had attached itself to my bowls. MRIs are not fun.
But it indicated that the endometriosis had not attached to my bowels, but it did show that the cysts were bigger than they first thought. So, on the 25th of November it was time to see the consultant, Mr Broadhead, and talk about surgical options.
Mr Broadhead specializes in gynaecology and gynaecological oncologist, he came highly recommended. When I spoke to one of the MacMillan nurses, she said that she had worked with him for over 10 years and wouldn’t trust anyone else.
I have to say that when going to see Mr Broadhead, I was happy that I could take Jono with me. I don’t know how I would have dealt with that conversation otherwise. He was incredibly nice and patient with me, as I went through over 20 years of history. We then discussed surgical options and what would be best for me and my situation.
I have always known that I don’t want kids. That is something that I have never shy’d away from. I’m not a mother figure. I’m that weird aunt that will let you get away with murder and most likely help you hide the body. When I told the consultant this, he didn’t try to talk me into “keeping my options open” or “you’ll change your mind” I was 35 at the time and I was certain. With that said, he suggested that the best way forward would be to have a total hysterectomy.
Now this may seem extreme (I know that it felt that way)! But given the endometriosis diagnosis, potential cancer and where the cysts were and the fact that I don’t want kids, this was the best option. It had the best chance to eliminate not only having to have more surgery due to a cancer diagnosis but also would mean that I would have less chance of recurrent endometriosis. And I shouldn’t need to go back for more surgery.
Within a couple of days, I had a phone call confirming that I would be going to the Bexley Wing at St James’s University Hospital for my surgery. Again, remember that this was during the pandemic, so I needed to have a PCR test and blood test before the surgery. And my surgical date was the 20th December, and I would be in for about 4/5 days depending on my recovery.
It was time for an early Christmas! This confused the niblings. The only thing they knew was that Auntie Sammy was poorly and that they were going to go get fixed. And they got presents earlier, so go figure.
Time for surgery
As of the 15th of December, I went on medical leave from Yoast. Did one last check in with my friends there and then logged off Slack, and started to prepare myself for the hospital. Having surgery for endometriosis was not on the bingo card for that year!
My intake time at St James hospital was at 8am. I waited around for about an hour, and then they called me through. They told me that I would be going straight into surgery! I wasn’t expecting that, but I was glad to be getting it done sooner rather than later.
A quick change into a surgical gown, spoke to the intake nurse who was a lovely person and the anesthesiologist who was a delightful human! Filled out some forms, signed my life away, quite literally – they make you very aware that one of the outcomes of surgery is death, great talk for 8 in the morning. Then it was time to head down to surgery.
The person who took me down to the surgical wing was really friendly and really helped me stay calm and positive about what was about to happen. I again met the anesthesiologist, the gentleman that would be helping Mr Broadhead and the man himself.
I had one last chat about what the surgeon was going to be doing and that he didn’t foresee any problems. Then I had a lovely chat with the anesthesiologist about Italy while being put to sleep. The last thing I remember saying was that I wanted to live in Tuscany. Not wrong!
Endometriosis be gone!! This is all a bit of a blur. I remember waking up in a room with a bunch of beds, and a lovely person came over to check on me and said that they would get transport to take me up to J97 of the Bexley Wing.
The porters come to get my bed and talking to them about something! I also remember getting up onto the ward and the nurses telling me about the ward and getting my hooked up to the machine that would be monitoring me and one that would be dispensing drugs.
While laid there trying to get use to where I was, I remember calling Jono, but I have no idea what I said. Lol, and I took a photo to send to him as well.
I must have been asleep for a good day and a bit because I remember coming to in the ward and pressing the button to call the nurses because I was hungry and thirsty. And they went through everything again with me.
One of the machines that I was hooked up to was a painkiller machine that I had a button for. These machines have a mechanism that stops you from over dosing, but if you figure out the timing – Hi! – you can coast on the warm, fuzzy feeling.
One of the things that they had not warned me about was the inability to move. I had never really clocked how often and how interlinked your stomach muscles are to helping you just get about. I had an incision that went from just above my belly button, 12 inches down.
The surgeon had cut through flesh, fat and muscle. I also had on a bandage on that was a new thing that had a little machine attached to it that would buzz to keep the moisture off my incision.
It was supposed to help speed up the healing and to be honest, I think it really helped. Needless to say, with this on and with the surgery, I could not move easily. And being in a hospital bed while actually quite comfy, I had to figure out where to hold on to to move around the bed!
Seriously, every time I wanted to move, I had to spend a couple of minutes thinking about where I was going to hold and how I was going to move. This was an interesting challenge.
Time for a bath
After a few days in the ward (that felt like an eternity) I was getting a bit more mobile in the bed, but I had not taken a shower since surgery day, so the nurses drugged me up with morphine, which was fun, and proceeded to give me a bed bath. Which, my god, is the worst thing in the world – yes, worse than surgery.
And after having that and the morphine wearing off, I felt it. The pain was so intense that I frequently pushed the drug button.
It’s not enjoyable being woke every few hours for the nurse to take my temperature and blood pressure. I know that this is something that they need to do, but I got a bit annoying.
Especially when I was getting “oh, you’re quite hot” every time they took my temp. Throughout my life, people have told me that my body temperature is usually a bit higher than those around me. Even after my surgery, the anesthesiologist mentioned that they had difficulty stabilizing my temperature. They said that they wanted to keep an eye on that.
Needless to say, I wasn’t alone in the ward that I was on. There were a couple of other people in there as well that had some kind of gynaecological surgery. There were two women who left the day after I arrived, and someone came in after me.
Getting back on my feet
After a few days of feeling sorry for myself and mostly sleeping. I woke up to drink, eat and then went back to sleep. It was time to start getting back on my feet ready to go home.
Fun fact, they won’t remove your catheter until you can get out of your bed and walk a bit. So, 10 points if you can guess what my priority was. I started sitting in the chair next to my bed and walking around my bed. Well, the first time was not successful because I nearly passed out.
I got there, and I could walk to and from the bathroom, well, I say walk, it was more of a shuffle. I was getting there, though, and I was trusted to go and have showers on my own. Which was painful, but doable. By day 3 I was doing circuits of the ward.
I had one of those drip stands on wheels. Which I was grateful for because I used it to balance myself and I clung to the walls so that if I did feel weak. I started by doing one lap every couple of hours so that I got used to the movement.
This got easier throughout the day and I started to go more often. Mostly because I was bored in my bed and this was the easiest thing to do to distract myself. While walking around, I was trying to stand up straight because I kept hunching over because of my incision.
One last check
Day 4 and I got another visit from Mr Boardhead and his team to check in on me. As well a how I was getting on and to talk about discharging me the next day. Which was Christmas Eve! But they wanted to make sure that I was fine to be discharged.
Day 5 in the hospital and discharge day, the team wanted to run a few more tests! Just to make sure that I wasn’t at risk because my temperature was still high. There is a range in which most people fall when it comes to your internal temp. I was beyond the top range when it came to my temp. After another blood test, x-ray and CT scan they couldn’t find anything that would explain it. They finally said that I was able to go home!
You can bet I called Jono as soon as I was told that. He made his way over to the hospital! I sat and went through paper work that told me what I could and couldn’t do when I was home. And all the drugs that I would need to take for the month following discharge. Oh, the injections were not fun, but it was time to head home.
Home at last
They sent me home with a bunch of leaflets outlining what post-surgery activities I was allowed to do and what I was not. For instance, I could not lift a kettle, cut vegetables, or carry shopping bags. The list went on! However, I was allowed to walk as much as I could. So, I got myself a treadmill and starting at .5 mph I started to walk myself better.
Every day I would wake up to get in injection in my arm from Jono. Who really disliked doing it but needed to be done. I was covered in bruises from them for a good month. Then I would go on the treadmill for a little bit and then go back to sleep. I had to find a way to lay in bed that didn’t hurt. Also had to figure out ways in which to get in and out of bed.
After a few days at home, I was able to take off the dressing. Needless to say, taking that off and seeing the scar hit me. The reality of having a hysterectomy and endometriosis diagnosis started to sink in.
I had numerous low moments and reality checks in that time, and I spent a lot of time just looking at my stomach. SOMEONE POKED AROUND IN THERE! That’s weird! There were also many tears shed. It was finally over and I would have no pain anymore.
6 months check up & beyond
Well, it’s now 18 months down the line and I have had a couple of check up with Mr Broadhead. I need to get a blood test sorted, and I’m getting my HRT treatment increased!
One thing that I did not expect is that going through the menopause would have such an effect on me. There have been a number of changes and more investigations to be done. But I have Jono at my side and helping me be more me. The sun is shining, and I have a wonderful group of people around me both in and out of work (though Scooby Gang get to deal with me on the daily 😅- I’m very grateful for them) .
There are some groups that I’m going to reach out to talk to others that are in my position. Hopefully, these people can help me process! There is still a lot to fight for, and while sometimes I don’t think I have it in me to fight. There is a group of people around me cheering me on, and I could not be more grateful for those around me!
If you have got this far, congrats! And you’re thinking, “wow this sounds familiar” then get on the phone to your GP and shout! Shout louder than you have ever shouted before.
Do not let anyone tell you that what you are feeling in your body is “normal”. I wish I had spoken up sooner. Listen to your body, if something does not feel right, then it probably isn’t right!