I had to travel to the U.K to get my Endometriosis treated… AGAIN!

Today in Ireland, roughly around 150,000 women are suffering with Endometriosis, “a chronic (long-term) inflammatory condition where tissue, similar to the tissue that normally grows inside the uterus, grows outside of the uterus. The most common places where endometriosis occurs are the ovaries, the fallopian tubes, the bowel, and the areas in front, on the back, and to the sides of the uterus. It can also be found on the bladder and bowel. In some cases, it is found outside the pelvis (lung, skin, brain, diaphragm)” – the correct definition from Endometriosis Ireland. Unfortunately, there is no known cause and currently zero cure for Endometriosis.

Like many other women in Ireland, I have failed to receive the treatment I need. Frankly, I have failed to receive a proper standard of care from many hospitals and many doctors. I have been told too many times that the pain was in my head, that bad period pain was normal or to just go and get pregnant.

The last Gynecologist I went to in Ireland said the following two statements which completely broke me, and it was when I gave up on the system in Ireland;

“I honestly don’t know what to do with you Sarah Jane… I’ve tried everything!”

“Hmm… ok so why don’t we take out your right ovary and see if the pain eases?”

Imagine at the age of 26, hearing that statement so casually?! It shocked me. I remember spending that whole weekend after that appointment crying at what I could potentially have to face. I was going to have to choose between whether I reduce my chances of even being able to have a child even more or continue in severe pain. I have constantly been thinking about the fact that I might never have my own children from my very first operation but never thought I’d have to face that sooner than I expected.

It was at that point, I got in contact with Mr Mann in Birmingham. I’ll never forget one of the first things he said to me:

“Sarah Jane, I have looked at your notes and can see you have fought a battle and a half…”

So I had my first Excision Laparoscopy on March 18th 2020. Sadly, having excision surgery doesn’t mean your are cured. It is supposed to give you relief and reduce pain/symptoms. Many people get years of relief from this surgery. Unfortunately, I didn’t. I ended up in hospital twice in August/September 2020 with severe pain. Needless to day, the standard of treatment I received while in hospital both times was terrible. One doctor told me to go get pregnant as if it were as easy to do so. After weeks of suffering from the medical trauma, and pain increasing, I rang Mr Mann and he suggested I have a MRI done. I did and it resulted in me needing another operation.

Fast forward to present time! It has been 4 weeks this week since I had my second excision surgery and wanted to give you a little update about the operation and how I am doing.

*WARNING – I’VE INCLUDED SOME GRAPHIC PHOTOS*

The operation

I had my 9th operation for Endometriosis in Birmingham on April 26th. I found out on April 19th, less than 24 hours before our online event in work was about to kick off, that I was having this surgery. That week was a bit of a hectic week to say the least. I was still recovering from pleurisy and was still quite unwell. I had 3 days of an online conference to work at and make sure everything went smoothly (I should add it ran in Canadian time-zone, making me work until 11pm). And on top of all that, I then had to quickly organise for this surgery. I could have easily said no, I can’t do that date. But in reality, I could have been waiting months for another date and I wasn’t prepared for that.

Excision of endometriosis is an operation that allows us to cut out all the visible endometriosis tissue. This means that once it has been removed, the tissue should not grow back and this is why your symptoms should improve. However, this isn’t always the case but you do see an improvement in your symptoms.

I went down to theatre at 8am and was there for almost 3 hours. This was by far one of the more scarier situations I have been in for surgery as I was on my own. Poor Declan had to kiss goodbye to me at the door due to the pandemic restrictions. With 8 previous Endometriosis related operations, you would think I’d be prepared for what I was going to wake up to? Not a hope! Each time is completely different. This time, I woke up and almost went into shock. I started shaking so much and the pain was getting worse. They ended up putting 3 heat blankets on me and I began to relax.

I, once again, was handed my morphine pump and I had control over my pain levels. And boy, did I need it. Like last year, my drain wound caused some issues and began to leak. They had to change the dressing and add a bigger one and wash & change me as I was covered in blood. I was having issues with my oxygen levels and my BP was low for a while so I had a nurse checking on me a lot. My legs were in compression boots again and I forgot how much I hated them. I couldn’t get out of bed without help from the nurses.

Mr Mann came to see me the following day and explained what he done. He removed adhesions and Endometriosis which were pulling my uterus to the right side of my body. He removed a cyst from both my right and left ovary. He told me to rest for 6 weeks and to keep my lovely compression socks on for those 6 weeks. I had to do several laps of the hall way before I could leave, and I kid you not, not matter how much pain I was in, I was walking up and down that hallway to get back to Declan.

My drain was taken out, which was the weirdest feeling ever and once again, I had issues and needed to change my dressings twice before leaving the hospital. I was discharged from hospital around four o’clock, with a bag full of medication. Declan was waiting at the door with a bouquet of roses for me.

Recovery

I flew home on 3 days after the surgery. I was dying to get home to my bed and comfort. Flying was a lot more uncomfortable this time.

The first two weeks recovering were ok. I was in a lot of post op pain and I also wasn’t sleeping. Week 3 was a hard week and it all hit me. I was nauseous, very weak and had a horrible migraine – very similar to last year. Recovery has certainly had its ups and downs, it’s never linear. Week 4 has been okay but I am listening to my body and when I can’t do something, even if it’s putting on my shoes, I will ask for help. I am finding it hard to sit in a chair, which is strange but that is due to the fact that my uterus is getting used to being in it’s normal place, I assume.

My incisions are doing good. There was a few days where they were weeping and very red but they have healed nicely, thank god.

In terms to my mental health, I am doing good. I have my days but that is expected. I’ll never be cured and I came to terms with that a long time ago. I am just looking forward to hopefully having a somewhat long period of time with reduced pain. I’m still struggling with Endo Belly and the pain of it post surgery is something else but nothing a hot water bottle and rest can’t solve.

I hope someday soon, Ireland will have a public centre of excellence set up with expert laparoscopic surgeons who will carry out excision surgeries and trial treatments for Endometriosis sufferers. I hope that someday soon, I won’t have to travel to get the medical care and treatment I need. I hope that someday soon, I, along with my fellow Endometriosis sufferers, will not be dismissed or mistreated by doctors in Ireland any more.

If you would like more information on Endometriosis, please check out Endometriosis Association of Ireland’s website here.

Sincerely,
Sarah Jane xx