My Endometriosis Story.

Endometriosis affects one in ten women in Ireland. For something so common, it can take an unfathomably long time to diagnose. In Ireland, the average delay in diagnosis is nine years. I’m not sure I can quantify how long it has taken for me. 

Endometriosis is also rarely talked about, even amongst women. Diagnostic delay might be a wider systematic and societal problem, but lack of awareness is something we can fix. March is Endometriosis Awareness Month, so even though we are in the midst of a global health crisis, it felt like the right time to tell my endometriosis story. 

My periods have been bad for as long as I can remember. I used that as an excuse to get the pill when I was with my first boyfriend. Beyond that I didn’t think about it too much. I just accepted that periods were painful. That for four to five days every month I would be in a lot of pain. 

Every month I needed painkillers to see me through. I remember going into Boots in Stephens Green to buy some. I asked for Nurofen Plus. The pharmacist said “Codeine isn’t usually needed for period pain. Have you tried Feminax?” To which I responded “Have you tried having a uterus?” The pharmacist was a man. I got the Nurofen Plus. 

I eventually realised that a process that has to happen every month to sustain life should not be this difficult. I went to see a doctor in a women’s health clinic only to be told “Some women just have higher pain thresholds than others”. With that they gave me a prescription for a new pill and sent me on my way. 

I started to get pelvic pain outside of my periods. The pain would radiate down my leg. I kept going back to the same clinic. I was put on several different pills; Yasmin, Qlaira, Minulet. I would take three month breaks from it and then go back on. I developed severe headaches during my seven day breaks (a side effect of oestrogen withdrawal) and was told to reduce the break to four days. 

I had two ultrasounds, both of which turned up nothing. I was tested for STI’s repeatedly – even though there was no logical reason for it ­– all of which were negative. I was referred to the colposcopy clinic in Tallaght Hospital even though my smears showed only minor irregularities (which is very common) and no HPV. The registrar there was very sympathetic. She was the first to say that I should not be living with such pain and that I might need to have a laparoscopy. I attended that clinic for two years before I was discharged. There was nothing they could do for me. 

The pain never eased. If anything, it got worse. I brought a hot water bottle to work, I sat at my desk with it clutched to my lower belly. In meetings I sat, jaw clenched, knuckles white, clutching the side of the boardroom table. I stopped mid-conversation and buckled over in pain, having to breathe my way through until it passed. 

Some months I was bleeding more days than I wasn’t. I brought panty liners and spare knickers everywhere I went. I still pack nine pairs for a weekend trip. I got so sick of hearing “You look tired” even though it came from a place of concern. 

I had had enough. Over the 2017 Christmas break I decided that 2018 would be the year I got to the bottom of it. I went back to the women’s health clinic (maybe I’m a glutton for punishment) and said that I wouldn’t be satisfied having my medication changed, or more tests done. I asked if it was possible that I might have endometriosis. The doctor told me that the only way to know for sure was to be referred to a consultant gynaecologist and have a laparoscopy. She told me that I wouldn’t be covered on insurance as there had been a lapse in my coverage and I had had ongoing problems for years. So I was referred to The Coombe through the public system. 

Every six months I would get a letter asking if I wanted to remain on the waiting list. I would post the prepaid letter back informing them that I did. Of course I did, the problems hadn’t disappeared. While still on the waiting list, in November 2018 I came down with an inflammatory bowel illness. For two weeks I couldn’t leave the house. I had to go to A&E to be rehydrated and eventually had a colonoscopy. At the time I didn’t know that bowel problems and IBS often go hand in hand with endometriosis. With rest and a few lifestyle changes I recovered from that illness, but the pain lingered on. 

In the autumn of 2019 I started to explore other options. I came off the pill and started going to holistic sexual wellbeing workshops or women’s circles. I had made it my business to know about my anatomy in an attempt to figure out what was happening inside my body. These workshops help me to connect more deeply with the phases of my cycle, what was normal for me without medication. I learned breathing and massage techniques that helped to ease the tension I often carried with me. But still, the pain persisted. 

After two years on the waiting list, in January 2020 The Coombe hospital called. They said they knew I had been on the waiting list for a very long time and told me they had a new doctor joining the staff. Because he was new to the hospital, he had no waiting list. If I still wanted to see a consultant, I could visit his clinic the following week.  

I saw my consultant for the first time at the end of January. He was kind and understanding. When I described my symptoms he said they weren’t typical of endometriosis (by now my pelvic pain was more common outside of my periods). Never the less, he did a physical examination and then discussed my options. If I wanted to get to the bottom of it, I would need to have a laparoscopy.  

Thankfully, he thought he could get me in quickly. After years of diversion and frustration, things started to move very quickly. He called the next day, a Tuesday to see if I could come in for the procedure on the Friday. I wanted things to progress but that was too fast. I have a job, I needed to give them notice. I got an appointment for the 7th of February.

On the morning of the 7th, my dad drove me to The Coombe. I had my bag prepared: nightdress (not pyjamas), slippers, spare pants, sanitary pads, a dressing gown, my Kindle and headphones. The laparoscopy starter kit. My consultant explained that the procedure should take 45 minutes and would involve making two small incisions near my belly button. If they found something they could treat, they would do so there and then. In that case, the procedure would take longer and I could have more incisions. 

I had my blood pressure checked, told them about my allergies and took a pregnancy test, even though I assured them it would have had to have been an immaculate conception. I changed into my fetching surgery ensemble complete with paper pants, my milk bottle legs sticking out between the hem of my dressing gown and my socks. A few hours later I was escorted to theatre by a lovely healthcare assistant who gave me a squeeze as we walked through the beige corridors. 

I was brought to theatre. They had trouble getting the line in my hand to flow but everyone was very relaxed so I wasn’t worried. I was told the first drug would sting my hand and make me drowsy. I remember the mask being put on my face, then nothing. 

I woke up on the recovery ward with no concept of time and in a considerable amount of pain. Every now and again I would come around and a woman dressed from head to toe in blue – hair covering, gloves, booties, the whole shebang – would ask how much pain I was in, from zero to 10. I kept saying seven until I was told I couldn’t have any more pain relief. I was maxed out. 

The night before my surgery I had dinner with my sister and some friends from yoga. I was told how much fun it is to wake up from general anaesthetic. “ It’s like floating on a purple cloud” they said. There were no clouds for me. Instead, I could not stop crying. Tears streamed down my face as I was rolled back to the day ward. 

Shifting from the trolley to the bed was agony. I never imagined I would be this sore. I remember saying “I don’t know why I’m crying” over and over again. I was assured it was a normal reaction to anaesthetic, but there was also the pain. Worse than anything I had coped with before and enough to make anyone cry. 

The nurse brought me tissues and helped me find my phone. When I looked at the time, three hours had passed since I went down to theatre. My surgery must have been longer than 45 minutes, but I had no idea what had happened. A while later, the nurse was giving details on the patients on the ward to somebody doing rounds. She said “And Amy was treated for endometriosis, right?” she asked as she looked at me. I responded that I didn’t know. She took a peek at my chart and told me that they had found endometriosis and they had treated it. She wasn’t supposed to tell me that I don’t think, but I will appreciate it forever. 

Knowing to some extent what had happened, I settled and fell back into a hazy sleep, coming to every so often, listening to the chat on the ward set against Agnes Obel Aventine which was playing through my headphones. I woke to find my consultant at the end of my bed. He came to my side and told me about the procedure. They had found endometriosis. They were able to treat it. I had four incisions. It would take at least two weeks for me to heal enough to be able to return to work. 

He showed me pictures of what they had found, innocuous looking red patches. And then he said the words that would change my outlook forever. “I can understand from what I saw today how you were in so much pain, for so long.” 

I have endometriosis. It was found in four places around my pelvis and reproductive organs. It was removed. It is a chronic condition. It could come back. It will be with me forever, like my new scars.

My story isn’t finished yet, it might never be. It isn’t unique, one in ten women in Ireland have endometriosis. But I chose to share it in the hope that it might help to make somebody else’s story shorter. I believe that by talking about it we can raise awareness, encourage the medical community to treat it proactively, shorten the diagnostic delay and ultimately help each other to cope with what can be a debilitating illness. 

If you think my story could help somebody you know, please share it.

If you would like to talk to me about your story, please get in touch.

To learn more about endometriosis, visit the Endometriosis Association of Ireland website.