writtenbycaitlin

Welcome

Hi! Welcome to my blog. I’m Caitlin. I’m 20 and a creative writing student. I started this blog as a way for me to keep up with my writing practice and basically yap about the fun things I have planned this summer. If you’re interested in concerts, travel, and general fangirl things, or are living life with a chronic illness/disability, you might want to keep reading!

I’m also an ambulatory wheelchair user. I have Myalgic Encephalomyelitis, PoTS, and endometriosis, among other suspected conditions. I’ll be sharing how these conditions affect my life while I do all these things, and some tips on how I get the most out of the things that I do manage, for those who might relate.

My endometriosis journey

Today marks a year since my laparoscopic excision surgery for endometriosis, so I thought that I would share how it went, and my tips for anyone that might be going through a similar situation now.

*Not medical advice, just my personal experiences*

How did I find out I had endometriosis?

I’ve always had very heavy and painful periods, but initially, I never considered endometriosis, even despite knowing what it was. For some reason I always thought that endometriosis must be worse than what I was experiencing, even though there were many times where I was leaning over, unable to move from the pain.

A couple of years later, I went on the mini pill to stop my periods and manage the pain. It helped for a bit. Until I started getting pain outside of my periods, and ovarian cysts. It kept getting worse, so I saw my GP, who after some investigations suggested a potential diagnosis of endometriosis. I was told that it would be a long wait to even see a gynaecologist, let alone for surgery.

I want to start this with the note that I did have my surgery privately. Because of the amount of pain that I was in, with such a long NHS wait, I was very lucky to be able to do so, however I know that not everybody has the option to.

Much of my advice still applies to a surgery on the NHS, but details may vary, as they also may vary between private providers.

I’m also very lucky that my gynaecologist/surgeon is highly knowledgeable in the endometriosis field. I felt safe knowing that he really knows what he’s talking about, when endometriosis is so widely misunderstood and often mistreated. Having a doctor really listen and understand makes so much difference and I feel very grateful to have had the experience that I did when seeking a diagnosis. I went to him in January of 2025, and had the EndoSure test in March, which detected endometriosis.

After this, I made the decision to have a laparoscopy to find and remove it. So, my surgery was scheduled for June.

What do I buy before surgery?

These are the things that I bought to make my surgery recovery more comfortable:

–             A wrap around the shoulders plug-in heater. I bought this one from Amazon, but anything similar would do the same job. I found it extremely helpful as I dealt with severe shoulder pain from the gas used during surgery.

–             Laxatives. I didn’t see this mentioned anywhere near enough, so didn’t buy these straight away, but eventually had to.  They will very likely be needed, as toileting after surgery can be very difficult, but laxatives can make it a bit easier.

–             Nighttime/very long pads. For any bleeding after surgery.

–             Body wipes. To wipe things like iodine off from near the surgery sites, and to feel fresher before you’re able to shower again.

–             Peppermint tablets. These were and still are my holy grail. So good for managing gas pain and bloating. I take these ones from Amazon. I also recommend Wind-Eze tablets for this.

–             Stick on heat patches and portable heat pads. Great when out and about, and for the car ride home. I use these ones.

–             Nighties (if you don’t already have a few). I lived in nighties for about the first week after surgery. They’re great as it means no trousers needed, meaning no waistbands around the wounds, and they’re super comfy for rest and recovery.

–             Bigger/stretchy underwear. Again, I recommend something without a waistband, and high waisted so that they come up over the wounds.

What was in my hospital bag:

–             IPad (with a film downloaded).

–             Chargers.

–             AirPods.

–             Phone (with music downloaded).

–             Teddy.

–             Medication (Ibuprofen, peppermint tablets, my daily medication).

–             Plug in heater.

–             Nightie (and a spare).

–             Underwear.

–             Socks.

–             Dressing gown.

–             Slippers.

–             Hand sanitiser.

–             Surface wipes.

–             Tissues.

–             Snacks.

–             Water.

–             Pads.

–             Anti-sickness bands.

–             Pillow (to go on your lap between the seatbelt on the journey home).

–             Blanket.

–             Mini fan.

–             Hair bands.

–             Bowl/bag (in case of sickness on the journey home).

Only needed if expecting or want to be prepared for an overnight stay:

–             Toothbrush and toothpaste.

–             Flannel.

–             Deodorant.

The surgery itself

A timeline of what happened before and after my surgery.

4 days before: I had my pre-op assessment, where I had things like my heart rate and blood pressure measured, had blood tests, and went through all of my medical conditions and medication with a doctor.

5:55am: I woke up, took my medication, and drank water before the cutoff (2 hours before surgery). No breakfast allowed sadly. Then I changed into some comfy clothes.

6:30am: We left for the hospital, and I plaited my hair in the car so that it would be out of the way. Of course, I listened to some Taylor Swift in the car to calm my nerves.

7:00am onwards: Checked in to the hospital and I was taken down to the ward 10 minutes later. I went through everything with a nurse, got changed into a gown and compression socks. I then saw my surgeon (my gynaecologist), to talk through some questions and go over the procedure. After that I got to order my food for after the surgery. The anaesthetist also visited to discuss my medication and anaesthetic.

8:40am: I got taken to my own room. I sat here for a little bit and the nerves definitely hit me at this point. I called my partner for a little bit while I waited to be taken down to theatre which helped me a bit.

9:30am: The nurse came to go through last bits and pieces and wheel me down to surgery. I panicked a bit when I got down to the anaesthetic room and honestly was a bit of a mess. They were all lovely though which helped me calm down. I had my cannula put in and went off to sleep.

10:30am: Apparently when I made it to the recovery room, but I do not remember being in there THAT long. When I woke up, I remember almost immediately having a peek at my wounds.

11:20am: I made it back to my room. I drank some water as I was super thirsty, and ate some gingerbread biscuits to see if I could keep food down. At this point I had some shoulder pain, but everything was mostly controlled by the anaesthetic and the medication from the cannula still. The nurse came to do obs every half hour.

12:00pm: Went for my first wee post-surgery and felt super dizzy. The pain hit me massively when I stood up and went too.

12:30pm onwards: Lunch was served alongside some stronger pain medication. The jacket potato was absolutely banging. I was missing cheese though as I had stopped eating dairy because of my endo and hadn’t tried dairy-free alternatives yet.

After lunch I spent some time recovering and had a sleep.

Then my surgeon came to talk through the surgery. They found and removed some endometriosis, primarily using excision (most recommended) and a small amount by ablation. It was hugely relieving to know the definitive cause for my pain, and that it should make some difference in how I’m feeling.

3:00pm: They came and took my cannula out and went through final checks. My mum went and picked up some medication that they prescribed me from the pharmacy.

3:35pm: I was discharged to go home. The car journey back was not pleasant, as my pain was much worse sitting up. The pillow I brought for the car was a lifesaver.

4:10pm: I got home and went straight to bed

The following few days: My experience in the next few days was honestly not great. It was very up and down. I was in a lot of pain, initially I would say that it was worse than my endometriosis pain. I struggled with any movement, and even going for a wee was agony.

I also ended up taking two trips to hospital due to suspected complications. It turned out to be nothing severe, but I was glad to have had it checked out despite how much I didn’t want to be there. Primarily my symptoms came from gas used during surgery being stuck, and from my PoTS flaring up. Surgery, alongside it being summer and the fact I had only just come back from a holiday a few weeks prior, is probably what aggravated it. But, overall, I ended up okay!

Whilst my recovery from surgery was difficult, I still believe that it was worth it. I think that it would have been easier if I was more prepared and knew more about what to expect. Laparoscopic surgery is often downplayed. Even though it is a keyhole surgery, it is still a major surgery. Especially with endometriosis removal added in, rather than solely investigative. Be kind to yourself, recovery isn’t easy nor necessarily quick. Take things at your own pace and be proud of how strong you are.

A week later: I had my stitches taken out. This terrified me, but from someone who is extremely squeamish and needle-phobic, it was nowhere near as bad as I expected!

Two weeks later: I was able to be on my feet a bit more and get dressed in less comfy clothes like skirts and dresses!

Three weeks later: I had my post-op appointment with my gynaecologist, and got to see photos taken during surgery, find out more about his findings during surgery such as locations of the endo, and discuss next steps.

One month later: By this point I was heading out of recovery and able to do more of my normal activities, went on ‘walks’ in my wheelchair, shopping, and days out.

Seven weeks later: I went on a few days trip to Wales with my partner. We stayed in an Airbnb and had a few trips out to Folly Farm, and the shops. I found during this trip that I was still struggling quite a bit with cramps, but I managed okay considering this.

The rest of the summer: I saw some improvements after surgery, but still struggled frequently with pain, but I think that this was surgery related pain that took a bit of time to recover. I managed trips out bowling, got another tattoo, and went to Reading Festival.

Three months later: I moved out to university. I had a lot of days where I struggled, especially initially, but making it to classes and living by myself was a massive achievement.

Since then, and my thoughts on the surgery:

I’ve found that my endometriosis has been helped by my surgery. Especially going into winter, I started to see a difference in the level of pain I was in. I found that I had less frequent instances of severe pain, so it became a little more manageable.

The difference wasn’t massive, but it was still noticeable to me, which I’m happy about. My endo has still been flaring up, and recently had to go back to my gynaecologist for further support. He now suspects that I have adenomyosis too. I am currently going through medication changes and working on other lifestyle changes to manage my condition. But things are still better than they were.

I hope that this information helps someone else go in feeling a bit more informed.

Surgery isn’t by any means a cure, and is different for everyone, but for me, it was a risk worth taking.

Thanks for reading and follow my social media for more chronic illness and disability content!

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