My Endometriosis Story; Pain, Diagnosis And Now

Photo by Yuris Alhumaydy on Unsplash

For as long as I’ve had periods, they’ve always been excruciatingly painful. They were heavy, I was doubled over in pain, unable to get out of bed, etc. You name the bad symptom, I had it. The problem is, I thought this was normal… can you believe it? Pain is so objective and personal, particularly with periods. As a teenager, there really wasn’t a way for me to tell that my pain was more severe than that of my peers. That’s why it took me so long to figure out what was wrong. One day, about four years ago, I’d had enough… and that’s where my endometriosis story really begins.

What is Endometriosis?

One of the most under-researched conditions, yet with 1 in 10 women/non binary people living with it, endometriosis is a ‘condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes’ (NHS). The tissue initially acts as a normally should, but as it has no way to leave your body, it becomes trapped. This happens during every menstrual cycle and the more it occurs, the more scar tissue, adhesions, cysts, and much more, can occur (Mayo Clinic).

Before Diagnosis

I got my period when I was ten years old. I still vividly remember the day now, as I’m sure most of you do too. I woke up to blood everywhere and was horrified. I’m 23 now, so that’s 13 years of periods (have you ever done the calculations of how many periods you’ve had in your life? it’s crazy).

I always remember being in pain but, like I said, I thought it was normal. It was only getting worse as I grew through my teenage years. My breaking point came when I was nineteen. I remember it vividly. I had just started university and, amongst other struggles, I was dealing with this worsening excruciating pain. Then one day it was suddenly worse than ever before.

Getting a Diagnosis

At that point, I knew something wasn’t right. My peers didn’t seem like they were in this much pain and I was slowly realising this wasn’t normal. I booked in with my GP (for my American readers, a GP is like a Primary Care Physician). I could do a whole blog post about how long and painful the process was with the GP. In some aspects, I understand wanting to eliminate any ‘easier’ possibilities or diagnoses, but it also felt like I wasn’t believed about my pain. However, many other conditions present the same or similar symptoms, so I get it.

How long does it take to get diagnosed?
The statistics are shocking. Endometriosis UK says, on average, it takes 7.5 years.

Endometriosis UK

Trust me, I went through every other possible diagnosis before endometriosis. Allergies, IBS, ‘you just have painful periods’, etc. It was only when I came to the GP with my own research into the condition that things started to move forward. I was referred to a gynaecologist who specialised in endometriosis and things moved really quickly. Following internal and external exams, it was recommended I get a laparoscopic surgery.

Laparoscopy is a type of surgical procedure that allows a surgeon to access the inside of the abdomen (tummy) and pelvis without having to make large incisions in the skin.

NHS

The Surgery

Before I get into this, just a few disclaimers. From what I understand through my research and doctors, surgeries aren’t a concrete or definite way of preventing the condition. In fact, it is a chronic and incurable disease.

I got a laparoscopic surgery in late 2020. It was due to be earlier, but as you can imagine, was delayed throughout the year. To be honest, I was terrified. But not for the reasons you might think. I was terrified that I wouldn’t have it. Much like my mental illnesses, there is some weird satisfaction in a diagnosis. Knowing that you were right and that you aren’t being ‘crazy’ is incredibly relieving. I was scared they wouldn’t find any and I’d be back to square one. At least if I had a diagnosis, I would know and I could take the next steps, right?

Honestly, the whole day was a blur, so I’ll do my best to remember everything. I went in alone (due to the understandable Covid-19 laws) and spent ages waiting alone in a room until it was time. I remember having to remove some of my piercings and tape up others, weirdly a very vivid memory. I only really felt scared once I was being wheeled in and got the anaesthesia. However, once you get that, you literally just feel like you’ve woken up from a slightly painful nap afterwards.

Here’s what they found:

As I said, in a relieving way, they did indeed find endometriosis. From what I can remember it was in a lot of places, but caught at a low stage. They told me my Fallopian tubes are blocked, but my ovaries are fine. In addition to that, it’s also present on my womb, bladder and bowels. TMI, but that did explain a lot of the problems I was having in that area.

During the surgery, they were able to remove some of it. Of course, the condition is incurable but through surgery they can attempt at relieving some pain through removal. However, from my understanding, it’s likely anything removed will grow back.

Life Now

My life now can often be hard to summarise. Overall, I feel better than I did before the surgery. The first year or two was definitely better. I noticed an improvement in my pain after the surgery and felt better. More recently, as I expected, the pain is slowly creeping back. I have som really bad moments, or bad days even.

I’m not sure what my next move will be. At the moment, I’m riding it out and hoping for the best. If my pain continues to get worse, I’ll go back to the doctors and see what else we can do to help. Overall, I’m doing better and that’s the main thing.

I feel a lot of comfort in now knowing what is causing me so much pain and the diagnosis allowed me to take the right steps in managing my pain.

Conclusion

Here are some of my top tips for if you think you might have the condition;

• Do your research into endometriosis – use reliable sources, watch videos/read blog posts from those who have been diagnosed
• Book in with your doctor – come prepared but also understand they’ll likely explore other diagnoses before endometriosis
• Keep a diary of your pain! It’s much easier to recall your pain this way and bring that forward to medical professionals

It took me two years to get my diagnosis. I am so lucky as this meant my endometriosis was caught at an early stage. But it was also due to perseverance, battling to be heard and being confident in my symptoms.

The only medication I am taking for it is the contraceptive pill. I take it consistently for three months and have a 4 day break. This has it’s pros and cons and certainly isn’t the easy option, but it definitely helps to be relieved of a painful period for a long time.

Endometriosis is, unfortunately, something I have just had to learn to live with. I feel empowered to be sharing my story with you. I am hoping that the future holds more research, more knowledge and more understanding amongst both society and medics.

with love,

becky

Sources

https://www.endometriosis-uk.org/it-takes-average-75-years-get-diagnosis-endometriosis-it-shouldnt

https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656

https://www.nhs.uk/conditions/endometriosis/

https://www.nhs.uk/conditions/laparoscopy/

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