My long journey to an endometriosis diagnosis

I am non-binary. For me, that meant pursuing a medical transition until I felt comfortable in my body. I did this by taking low-dose testosterone for a few years on and off due to the cost of going privately.

Once I was happy with my transition goals, I decided to stop taking it. Unfortunately, due to being on a low dose and then completely ceasing it, this meant the return of my periods. Which I feel like I have been at war with since the beginning.

The return of my periods and the struggle with endometriosis symptoms

It is difficult to explain the emotional impact of having a period that is so draining emotionally and physically and having to still go on and do the everyday things in your life. It was extremely draining, I felt sick in the mornings and eating made me feel crap. I also looked extremely drained and pale during this time.

Being in college and working minimal hours meant it was not as bad as for someone who is going through this and also working a full-time job. I would sit for hours before I had to go anywhere with a hot water bottle at my front and back. The only way I would get relief was if they were scalding. Sometimes, I would bring them with me to college so that I could make it through the day. Whilst I was prescribed medication for pain and to shorten my period’s length, they had hardly any impact.

Eventually, I talked to my parents and said I really couldn’t take it anymore. My mam, who had similar problems, understood completely. My dad, on the other hand, kind of just doesn’t get it and thinks people are being dramatic about how much pain they are in.

Seeking an endometriosis diagnosis: The challenges of getting answers

I had changed GP and now was with a woman who I felt more comfortable with. I asked for a private referral to see a gynaecologist to see if I had endometriosis. Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes. This is what I was now suspecting as my symptoms matched up, and the pain I was experiencing could not be explained by anything else.

Navigating the private healthcare route for endometriosis testing

It took about 8 months before I saw someone. I had a pelvic ultrasound, which showed nothing out of the ordinary and was told to come back in a year if anything changed. I was extremely let down by this as it had cost a lot of money to be told there was nothing wrong. I also knew that a pelvic ultrasound very very rarely shows endometriosis anyway. I left that appointment feeling a bit like I was back where I started, not being believed or taken seriously.

It took me another year of period misery before I wanted to try again. This time, I had the support of my friend and girlfriend, and hearing from others that I was right to try and find answers and not give up was the reassurance I needed.

Why endometriosis diagnosis and treatment need urgent change

I spent a lot of time online researching endometriosis, watching videos and documenting my symptoms. I had done this originally, but I had just been turned away so many times that I felt now I had to have all the answers. This is not really how medicine is supposed to work, but it has been my experience while trying to get answers about my period.

This time, I went onto Reddit and read through as many threads as I could find to see who people found helpful. TikTok was also honestly a surprisingly helpful resource as I had at this point never met anyone with endometriosis. Through this, I found an endometriosis specialist in Dublin and went back to my GP again and asked for a referral.

This time, it took about 6 months. I presented him with my timeline of my period and symptoms for the past decade, The different options I had tried, and how now nothing was helping anymore.

Laparoscopic surgery: The only definitive diagnosis for endometriosis

He was friendly and approachable, which helped me feel at ease. He also explained that the people who do make it to his clinic most likely have endometriosis. He said laparoscopy, an operation performed in the abdomen or pelvis using small incisions with the aid of a camera, was the only way to know definitively. It is still considered an explorative surgery, so I felt guilty about having one. The cost of it all did not help this feeling of guilt I felt.

He also advised the Mirena coil as a treatment option, which could be inserted whilst I was under. After my last experience, I was hesitant, but it has shown some effectiveness with endometriosis patients, so I agreed. After some more discussion of my symptoms, I set a date for surgery.

Undergoing surgery for endometriosis as a non-binary person

All of this happening in what is considered a women’s hospital and me being non-binary meant that I did feel a bit uncomfortable, more so though I didn’t want anyone else to feel uncomfortable around me.

On the day of my surgery, I was worried they wouldn’t find anything and that then I would feel like I was wasting time and money. I was also immensely worried about keeping up with college, and I had taken some time off to recover.

I walked down to surgery with another person who was also having the same procedure; this helped me feel less worried. When I woke up, I was actually in a lot of pain but was given some medication to help very promptly.

What happens if endometriosis isn’t found during surgery?

The surgeon came over to tell me everything went fine and I looked all good, but they hadn’t found any endometriosis. They did, however, find suspicious tissue that had been removed and would be sent to the lab. Not knowing what it was bothered me, and it would take four months before the lab results would come back. As a result of there being no rush on it, I decided that it must not be serious. During that time I kind of came to terms with the fact that maybe I was just unlucky and had very debilitating periods.

At the four-month follow-up, I was pretty happy I had recovered well, and it hadn’t affected college or work too much. However, the lab results came back, and the suspicious tissue was endometriosis after all. Whilst it would have made sense to be relieved, I was more thrown than anything else because I thought being told after surgery that none was found meant it was definitive. I now have no endometriosis tissue as it has all been removed, the coil is working, and I have not had a period since my surgery.

As far as treatment options go, that is kind of it for endometriosis. I just have to self-monitor and hope it doesn’t come back. It feels very much like something a doctor should be following up on, but as I should be okay for a good few years with my coil, I was discharged.

Why endometriosis diagnosis takes so long and what needs to change

I have come to terms with it now that it is endometriosis, and it is a big relief to know that I was not exaggerating or making it up. It takes about ten years on average to get a diagnosis of endometriosis, and that is exactly how long it took me.

It is a huge privilege to have been able to choose to go privately, and I was lucky that in the end, my health insurance covered the surgery. Laparoscopic surgery is the only definitive way of diagnosing endometriosis currently. I do wonder how many people are currently on waiting lists in agony or not being offered surgery since their symptoms are not believed.

Even though I went private in the end, this has been a lengthy process full of disappointment with being told that it cannot be as bad as I described. I am happy to have an answer but it should not have taken this long to be taken seriously enough to get this answer.

Research for endometriosis treatments is desperately needed. I think a lot of change needs to happen in how doctors are trained when interacting with people with non-obvious symptoms.

The staff at the hospital I was in were extremely kind and attentive, but my worst experiences were when I was young and needed to be believed and supported. I think empathy and support for young people need to be considered a bit more, even though I do understand how difficult it is for doctors to be kind all the time.

If you are having similar experiences in any aspect of life where you are not being taken seriously or being dismissed, know that I believe you and that advocating for yourself is extremely brave. Try to find others who can support you so you know you are not alone in it.

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