Living with endo - Sarah Jane Allen

Living with endometriosis can be both debilitating and isolating. The condition affects your physical and emotional wellbeing, which can have a knock-on effect on the relationships you have with others around you. Feeling like you’re dealing with the condition alone is a common emotion for many people with endometriosis, your pain can make you feel like a burden on those around you which in turn can cause you to further isolate yourself. For that reason, it’s important to know that you’re not going through this alone. 

At Joii, we want to strengthen the bond between the community through sharing and uplifting the voices from the women within in. Our Living With Endo series highlights the journey people have been on, from the onset of their symptoms to reaching diagnosis, all the way to how they're living with their condition today. 

In this post, we’re chatting to Sarah Jane Allen, an active member in the endometriosis community in Ireland. She tells us about her long journey to diagnosis, how she had to advocate for herself, the lack of sufficient care in Ireland, and how she lives day by day.  

"My journey with endometriosis started when I was 8 years old. I was suffering from severe abdominal pain and ended up in A&E, but was told it was just rumbling appendix. I got my period when I was 11 and the pain was still there. Any time I went to hospital, I was told this time that it was just period pain and that I will adjust to it soon. This continued throughout my teenage years. I was in and out of A&E constantly with pain but was told the usual things; rumbling appendix, IBS, just period pain or the worst of all - I was just attention seeking. I missed so much school because of this pain. School officers would call out to our home to see if I was actually sick because I was out of school so much. I was put on several different contraception pills to help with my period but none worked for me. Some of my doctors accused me of being the problem because I wouldn’t take any more contraception pills. In 2016, I was getting fed up with not being believed. When I ended up in hospital in June 2016, I refused to leave until they figured out what was wrong. I ended up having a laparoscopy and the outcome of that was ‘I just had a few cysts and lots of adhesions’. They gave me no reason as to why I had them. I ended up having 2 more laparoscopies between 2017 & 2018, and during the 3rd one, a general surgeon came to me after the surgery and told me to find a gynaecologist  who understood Endometriosis as that is what I have."

"A few months later, my GP referred me to a gynaecologist who ‘treats’ Endometriosis. I had an appointment on a Wednesday and was in surgery on Friday. In July 2018, I finally got my diagnosis of Endometriosis (as well as PCOS). Unfortunately, my pain continued to cause me issues. I ended up having 3 more ablation laparoscopies in 2019 because my pain was so debilitating."

"In January 2020, I asked my gynaecologist about excision laparoscopy as I heard it was the gold standard for endometriosis. He said he couldn't do anything for me. I reached out to Kathleen King, one of Ireland’s main advocates for Endometriosis for advice and she gave me details about accessing excision surgery in the UK. One evening in January, I had a phone consultation with the specialist in Birmingham at the time and for the first time in my battle with Endo, I finally felt believed. He validated my pain and suffering. He spent over an hour on the phone listening to my journey. 6 weeks later, I was on a plane to Birmingham to have my first excision laparoscopy. Endometriosis was confirmed, as well as Adenomyosis."

"Sadly, I wish that was where my battle ended. Due to the years of medical gaslighting and several ablation surgeries, my condition got worse. I unfortunately have had excision surgery in 2021, 2022 and my most recent one was in September 2023. I have Stage 4 Deep Infiltrating Endometriosis and the main area of concern is my kidneys. Due to the amount of Endo that has grown in my body, it’s been difficult to remove it 100%. The Endo has started to cause damage to my urethras and therefore my kidneys. I don’t know when I need to go to the bathroom. I could go 10+ hours without peeing. And then, my stomach would swell and cause horrific pain when I finally need to urinate. Because of this damage, I now need to have check-ups every 6 months for the foreseeable to ensure we don’t cause any further damage and that when we see the Endo growing back again, it’s time to operate again. It is very possible I may need a urostomy bag. It is also very possible I may lose a kidney. This is the harsh reality of having Endometriosis."

"I have lived over 22 years with this suffering and it seems like the older I am getting, the more difficult it is to live with this condition. In 2022, I was told to think heavily about my fertility options as having a child myself may be a struggle. I went through 2 rounds of egg freezing treatment. The first round in April 2022 failed. I didn’t produce enough decent sized eggs. I was heartbroken. It was really hard to accept my body wasn’t working the way it should for a 29 year old. I gave my body a break for a few months and then, in January/February 2023, I started my second round of egg freezing. This time, I was on more injections and medication than the first time. It was so gruelling and tough on my body. However, it was worth it as in the end, I managed to freeze 18 eggs. Now, it’s a waiting game to see when I am well enough to try to start a family. In terms of managing my symptoms, currently, it’s taking it one day at a time and seeing how I am. Painkillers and hot water bottles are my main source of relief these days."

"Sadly, there is a lot Ireland needs to do to support people with endometriosis. We shouldn’t have to seek treatment outside of Ireland. We need proper specialist care on the island of Ireland, not just general gynaecologists that don’t really know how to treat or manage the condition. We need access to excision laparoscopies and for doctors to stop providing ablation as treatment as it results in more damage in the long term. We also need to improve our education system and start teaching people in secondary schools about health conditions like Endometriosis, Adenomyosis, etc. Our government and health system need to start believing in our pain and start helping improve our experience with medical treatment."

"I believe there is a small shift in how society views endometriosis, which is great. But this is down to the many advocates who work endlessly to provide correct and accurate information online, as well as calling those out when they share misinformation. While awareness of endometriosis has improved greatly in the past few years, a lot of publications and platforms still share misinformation. If Ireland’s health system had a platform that the media and the public could use as a source of correct and accurate information, that would be wonderful."

"One thing I wish more people knew about endometriosis is that it is not just a period condition, that it is a full body condition. While my periods are painful and heavy, I have many other symptoms that affect me almost every day of the month. This condition is so debilitating and exhausting."

"For other people beginning their journey with endometriosis, I say don’t be afraid to get a second, third or even fourth opinion on your condition. If you don’t feel like your doctors can provide the accurate care you need, you have the right to have a doctor who will. Advocate for yourself. Believe in yourself. Your pain is real and you deserve to have that pain validated. Also, don’t feel like you are alone in this battle with Endometriosis. There is a community of us online that are here to support everyone, through the good days and the bad."