Endometriosis isn’t just a “Period Problem”

Endometriosis, by Abbie Garcia.

What do many people think of when they hear that word? Painful

Periods? Heavy Periods? The reality is, Endometriosis is so much more than just a

“Period Problem”, and the condition is widely misunderstood and underresearched.

Endometriosis is a full body systematic disease that affects around 1 in 10 of women

and those assigned female at birth. It can affect each person differently but my

journey with it began in 2021. I started to experience various symptoms which I had

never had before, including pain during intercourse and extremely painful bowel

movements.

These symptoms felt like they came on out of nowhere and at first I ignored them

and put it down to stress, but as time went on they slowly got worse and more

symptoms started to appear. I second guessed my symptoms for over a year and a

half, and just told myself I was being dramatic and it’s probably normal. I didn’t start

going to the doctors until January 2023 which was over a year and a half after my

symptoms started (I definitely don’t recommend this). At this point, I had started to

experience various other symptoms alongside the intercourse and bowel pain

including pain during urination, severe ovulation pain, and pelvic, leg and back pain

at random times of the month. I was eventually referred to gynaecology for further

investigation. My doctor did mention that my pain could potentially be endometriosis,

however they weren’t sure due to the fact that I did not experience painful periods at

this time (which is one of the most common endometriosis symptoms).

I had to wait around 6 months for my initial NHS gynaecology appointment, in which

time my symptoms gradually worsened in severity and frequency. Within this time I

had done a lot of research into endometriosis as I didn’t consider it previous to my

doctor mentioning it. This was mainly due to the fact that any information I had heard

about Endometriosis was always related to painful periods. I found that I actually had

a lot of the Endometriosis symptoms that were unrelated to my periods, but I mostly

found this information through social media and not typical search engines like

google and healthcare sites, as through the likes of TikTok and Instagram I was able

to hear about and relate to the real life experiences of those affected with endo.

I finally got to see a gynaecologist in August 2023. By this time I was well equipped

with knowledge, a health diary tracking all my symptoms, my headstrong self and

partner, and was very sure that I had endometriosis. In this appointment I made it

clear that I believed I had endometriosis and would like a laparoscopy to see if I had

it. After a very painful examination, and a very tearful conversation where I went over

all my symptoms with the gynaecologist, he said to me that there is a likely chance

that I do have endometriosis, and he put me on the waitlist for a laparoscopy. He

also said I would only be waiting around 5 months for surgery (which was less than I

thought) so I left that appointment feeling relieved that things were going in the right

direction.

Life continued on, and I started a new full time in-office job in September 2023. From

this point on, my symptoms continued to get increasingly more severe to the point

where just after New Year, I was really struggling to drive to work due to my intense

leg, hip, back and pelvic pain. I was also struggling to travel for site visits across UK

and Europe which was a big part of my role, and remember in February 2024 having

(what I now know was) an awful endometriosis flare up in Budapest Airport and

crying in the toilets for ages before trying to put on a brave face to the rest of my

colleagues who were there with me ready to catch a flight home. I remember feeling

so isolated, especially in that moment, as my colleagues knew I struggled with

suspected endo but had the belief that it was just “bad period pains”, when in reality I

was in severe pain every single day.

My periods were still not my biggest problem at this time which I think is really

important to note with my journey. To this day my periods are still not my most painful

time of the month and I still have endometriosis, so if you have other endo symptoms

but not painful periods it could still be endometriosis. Endometriosis isn’t just a

“period problem”, so please listen to your body and push with your doctors if you

can, as I second guessed myself for almost a year and a half because I didn't have

the classic painful period symptom.

Fast forward to March 2024 and I had still not heard anything about my diagnostic

laparoscopy surgery, and by this point I was in such severe pain every day that I was

crying before work dreading the drive and day at the office, crying during work

because of my pain making me unable to focus on my work, and crying when I got

home from pure exhaustion, pain and the mental health side effects of having such

debilitating issues where I still had no concrete answers.

I remember ringing up the NHS waitlist team in March 2024 and having an awful

phone call with a woman who basically laughed down the phone telling me that i’d

been put on the lowest priority to have surgery and I'd be lucky to get my surgery

within the next year. She also said that I have to understand that there are “other

people who have it worse than me”. I cried my eyes out after ending that phone call

and felt so distraught and hopeless. I couldn't wait another 1 year (at the least) for

surgery when I was in such debilitating pain that was affecting me every day. I also

think the treatment women get when talking about pain, especially to those in

medical fields, is ridiculous because how awful and unhelpful it is to tell a patient that

“other people have it worse”. That doesn’t help the patient in any way and whilst yes,

there is likely to always be someone who has it worse than you, you should not be

made to feel like your issues, pain and symptoms are any less valid, especially by

the professionals who are supposed to support you.

I didn’t know what to do from that point so sought the advice of those close to me. I’d

been given the advice to go back to my doctors, explain the severity of my symptoms

and how I was becoming unable to work etc, and see if they could get in contact with

my gynae to expedite my surgery. This actually ended up working well for me and I

soon got a letter stating that my surgery was now bumped up in the priority list and

i’d be having it in May 2024. I was so grateful that I would be having my surgery in

less than 2 months from the date I received my letter.

I finally had my laparoscopy in May which confirmed that I had endometriosis. They

found endometriosis on my bladder, pouch of douglas (between bowel and uterus),

my right ovary, as well as some other places on my pelvis. I was so relieved to finally

have a diagnosis and know that the pain wasn’t all in my head. They removed the

Endometriosis they could see via a mixture of excision and ablation, and I was told

my endometriosis was at stage 1 and 2.

I found it difficult to accept the stage of my diagnosis and battled with this for some

time after my surgery. I found out later on that pain does not correlate to stage, and

someone can have any stage of endo and be in any amount of pain (stage doesn’t

always equal severity of symptoms), but I was worried that people would think i’m

being dramatic if I shared my stage with them.

My recovery after surgery was overall quite smooth, I didn’t have too much pain and

I was able to get back to driving and work within a few weeks. I did however take a

turn for the worse about 2 months post op where my symptoms were again getting to

a debilitating point daily, and so I ultimately had to quit my job at the end of July.

This left me unemployed and wondering what to do next. I turned to creating content

on Tiktok around the time I became unemployed because before my diagnosis I

found so much useful information about endometriosis from people who created

content online about their experiences with the condition. I wanted to share my

endometriosis journey and hopefully find comfort in the online community of endo

sufferers. Since July last year I have gained a following of over 15,000 people on TikTok (as i’m

writing this), i’ve attended an endometriosis event that I found about due to social

media, had opportunities to work with brands that I love, and had hundreds of

messages from people with/suspected to have endometriosis and other chronic

illnesses that have told me how much my content has made them feel so much less

alone in their condition. I also had to start using a walking stick in November 2024

due to the severity of my endometriosis pain, fatigue and the mobility issues it

started to cause. I shared this journey online and found so much love, support and

people relating to my experiences of being a young mobility aid user.

Since my diagnosis, I have struggled to gain support from the NHS in relation to my

chronic pain, and have been and still am on a journey to discover pain management

methods that work for me. I think there seems to be a big disconnect medically on

what chronic pain management can look like, and there are so many people out

there not getting the support they need for their chronic pain.

I’m still on this journey and have learnt so much about the mind, body pain

connection and how stress, anxiety and nervous system dysregulation can all

contribute towards pain. I know my condition is chronic and has no cure, but I think

what is important is finding ways to live day to day that helps to manage my chronic

pain, and I am hopeful that in time and through working with my body rather than

against it, I will get there.

If you have Endometriosis or are suspected to have Endometriosis please don’t

hesitate to reach out to me for any support you need. Community is everything in

relation to managing this condition, and the more information and awareness we

share with each other the better.

You can find me on TikTok and Instagram.

Sending love,

Abbie