August 1, 2018

Endometriosis: My Story

Some of you may have known that I had surgery to check whether I had endometriosis or not earlier this year. Others may have had no idea – and that’s totally ok. I didn’t talk about it.

To be honest, I debated long and hard about writing this and putting it out there for other people to read. Why would anyone care about this? However, when I took a step back and thought about how much I relied on other people’s information to get me through my experience, I figured what’s the harm? If I can help someone, somewhere even just with the slightest bit of reassurance that everything is going to be ok…then it is definitely worth my while.

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First things first, let me start off by providing a little bit of context. Ever since I was a kid, I have suffered with migraines. Terrible migraines. When I was older, and started taking the pill I noticed these got worse and worse, and no matter which one I took I couldn’t find one that stopped them. I tried medication, but with no luck. It started taking over my life. I couldn’t go to work some days, or would get violently ill in work and have to go home. Not ideal when you are starting out your career, and it is definitely not sustainable. Eventually, we figured out that it was the hormones in the pill causing these migraines. By we, I mean my doctor and I. As a result, my only other option for contraception was the copper coil. I got this inserted, and for about two years, everything was alright. No migraines, no side effects. Happy days.

Then, about a two years ago, I noticed that I would get these uncomfortable pains in my lower abdomen every so often. I just dealt with it and put it down to menstruation, ovulation and at times just something I ate! A few months later, I was in a meeting when it happened again. The pain was so sudden and so extreme that I actually let out a scream of pain, and bent over in agony. I was so embarrassed. I left the meeting, called my Mam to cry about it and after a few minutes it passed. It was the day after my period had finished. These pains lasted a few days on and off. It was only then that I started to keep track of it. I noticed the following month, around the same time I got the pains again, and the third month too. This was when I knew for sure that it was something to do with my cycle.

 

The Decision

After these months of pain, I finally bit the bullet and headed to my gynaecologist in the Beacon Hospital (who had inserted my copper coil). She inspected me, did a scan and determined there were no abnormalities as far as she could see visually. That is when she mentioned endometriosis, and how my pain may be an indication that I have it. The only way to know for sure if endometriosis is present, is to undergo a laparoscopy. I’m not going to lie, when we spoke through the procedure and the possible risks (which I won’t go into) it scared the shit out of me!

For those who aren’t aware, a laparoscopy is an invasive surgery procedure, that requires one or more small incisions on the abdomen. The abdomen is inflated with air which separates it from organs such as the bowel and bladder, for better visibility. If endometriosis is present, and can be treated it is either cut away or burned using a laser. Once finished, the wounds are closed with a few stitches. All in all the procedure takes no longer than about an hour to perform and is done under general anaesthetic. It is a day procedure, but they recommend taking two weeks off to recover (which at the time I thought was crazy!).

I knew that following the procedure there was no guarantee that we would understand fully what causes the pain, however for me the most important thing was having more information and even just ruling it out. If endometriosis was present, and treatable, it wouldn’t be a given that the pain would disappear. The possibility that the pain could be worsened by the procedure was also a consideration.  It was a lot to think about, especially considering that two months after this appointment I was heading away on the trip of a lifetime. I was an emotional wreck. It was a tough time for both for myself and for everyone around me. The pain meant that I was literally out of action for a few hours at a time, my mood was effected and no matter how positive I tried to stay, it was incredibly difficult. Not knowing what is going on in your body and there is nothing you can do about it, is a hard thing to deal with and it really got me down.

After weighing everything up, I decided to put this procedure off until after I came back from travelling.  Despite months of uncertainty about what was happening in my body and incredible pain throughout the duration of my trip, I am so happy that I waited. I visited my gynaecologist in January, and we discussed the procedure and exactly what would happen. She informed me that she would do a number of other tests while I was undergoing the laparoscopy and we agreed to remove my copper coil. I got a prescription for the pain killers I would take after the surgery so that I could have them on hand, and I was booked in for the beginning of February. I left feeling nervous but excited that I would finally have more information about what was happening inside me.

The day of surgery

My mam was so good and was there by my side through the whole thing. She took me to the hospital and waited with me the entire time. On arrival, I had to check in and after a while I was brought to the day ward. I stayed here for a few hours while they carried out some blood tests and checked my heart rate and blood pressure etc. in preparation for surgery. It wasn’t long before I was brought down to the theatre and given the anaesthetic.

The rest of the day is a bit of a blur to me now. I remember waking up in the recovery ward. I was alone and feeling a little bit overwhelmed. The nurse came over to see how I was, and I remember asking for painkillers and water. The anaesthetic had made me really thirsty (not forgetting, I was fasting since the night before!). Soon after, the nurses brought me back down to the day ward to see my Mam and I could go to sleep.

The nurse looking after me was able to tell me that the procedure was successful, and that they identified Stage I endometriosis. It was treated and I would get a phone call from my gynaecologist the following day.

The painkillers started to make me feel dizzy so they gave me medication through the drip and I remained in the recovery room for a while until the pain eased and I was able to eat something. You’re not allowed to leave the hospital until you can go to the toilet. I remember drinking so much water and still couldn’t make myself go! Thankfully after a few hours, when I was hydrated enough, it was a success. I was walking very slowly, a little bit hunched over protecting my new wounds, but felt extremely weak. My dad picked us both up from the hospital and we went home. Andrew popped over that evening with a beautiful bouquet of flowers, which definitely helped to cheer me up!

The Recovery

Over the next few days, I watched a lot of tv. Netflix literally was my best friend! I tried to get moving a little bit but it really exhausted me. I couldn’t stretch my stomach and I was still walking a bit funny. The fear that I would pull the stitches out scared me so much! I started taking the painkillers and realised quite quickly that it did not agree with me. I felt dizzy and started feeling sick, and when I went to bed one night I woke up with hallucinations. After trial and error, I decided to manage with paracetamol.

About five days after the procedure, I woke up and my breathing was a little heavier. It felt hard to catch my breath and I hadn’t a clue what was happening. I called the nurses and they told me to come back into the hospital straight away. I started to panic and every thought under the sun came rushing through my head. We went to the hospital and after a quick examination, they discovered that I had developed some sort of infection on my chest. This was most likely caused by the anesthetic during the surgery. The nurses took the opportunity to check my wounds and took the bandages off for me. They reassured me that it is totally normal to not feel 100%, especially so soon after the procedure. So, I listened and really tried my best to relax and take it easy.

Anyone who really knows me will understand when I say that I don’t sit still.  Initially, I thought  I wouldn’t need two weeks of recovery. I was so wrong. If there is any piece of advice I have for anyone else going through this is to listen to your body and give it plenty of time to heal. My body reacted to me trying to do too much through my blood pressure. If I did too much or got up too quickly, I would feel quite faint and it took about a month for this to settle down for me.

Endometriosis: Now & The Future

Now, six months on. I am in a very different place to where I was last year. I currently do not have any pain during my cycle, and it feels so good knowing what was going on in my body. Even though endometriosis was identified and treated, this does not mean that it is gone forever. It can grow back, and certain things have to be done to help manage it.

I am now on a progesterone-only pill (Azalia) in order to minimise the regrowth of adhesions. I had my reservations about this, due to my history with the pill and my migraines…but this was more serious now so I figured I would make do. While the first month was pretty bad, and my migraines reappeared, they have since stopped and I couldn’t be happier. The only side effects I am seeing now is quite sore acne during the week my period would have normally been due, and some spotting at this time too. The acne is really the only thing that bothers me. I have had such ups and downs with my skin in the past. It really is a sensitive thing for me, so I find this hard to deal with each time they appear.

In terms of the future, the possibility of having difficulties having a baby worries me. While at the moment I am still young, and my relationship isn’t at that stage just yet, the fear of not being able to conceive when the time is right does exist. The longer it is left following the laparoscopy the higher the chances of the endometriosis growing back, and therefore the higher the risk of fertility issues.  I guess this is something that I will have to look into and manage when the time comes, but of course, it is in the back of my mind.

Advice

Before I wrap this up, there are three things that I would like everyone reading this to remember. While they don’t necessarily relate to endometriosis, they are things I realised this year and are important for anyone and everyone to keep in mind.

  1. Listen to your body. It sounds so simple, and you might think that I am absolutely crazy (does your body speak to you?) but, when there is something not quite right going on, our bodies have an amazing way of letting us know. Whether it is through pain, or just that feeling of not being 100% yourself, it is so important to listen to our bodies and do something to respond. Whether this means getting looked at in the first place, or resting when you need rest. Listen.
  2. Pay close attention to those who are by your side when you need it most. This is a time when people’s true colours show and although it may be a hard thing to realise, it should not be ignored.
  3. Don’t give up. Just because things may be hard now, does not mean that they won’t get better. Try to keep your head up, and find comfort in the little things that are good right now.

If anyone has any questions, or concerns or just wants someone whom they can reach out to about this topic, please feel free to get in touch by email or through Instagram @annmariejudge. I promise I will get back to you as soon as I can x