Endometriosis

Hey all. Happy Friday!

A slightly different post on here this time. I am aware that I have never shared anything remotely personal on here before but this post is on a topic I have been wanting to talk about for some time.

This topic is endometriosis.

Firstly, endometriosis (sometimes abbreviated to endo) is a long-term health condition that affects around 1 in 10 women of reproductive age in the UK - that is 176 million women worldwide. I am in that 1 in 10. To me, it is something that needs more recognition and acknowledgment amongst women and the health system.

WHAT IS ENDOMETRIOSIS?

(Pronounced en-doh-mee-tree-oh-sis)

''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'' (NHS website)

Endometriosis is the name given to the condition where cells like the ones found in the lining of the womb (uterus) are found elsewhere in the body. Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. This is a chronic and debilitating condition that causes painful and heavy periods* Endometriosis can affect all women and girls of childbearing age, regardless of race or ethnicity.

*information from endometriosis-uk.org


ENDOMETRIOSIS FACTS AND FIGURES

• As previously mentioned, one in ten women of reproductive age in the UK suffers from endometriosis.
• 10% of women worldwide have the condition.
• Endometriosis is the second most common gyneacological condition in the UK.
• On average, it takes 7 years to get an actual diagnosis.
• Endometriosis costs the UK economy £8.2 billion a year in treatment, loss of work and healthcare costs.
• Lastly, the cause of endometriosis is unknown and there is no definite cure

(this information is from endometriosis-uk.org)

SYMPTOMS OF ENDOMETRIOSIS

Symptoms vary in intensity from one woman to another and the amount of endometriosis does not always correspond to the amount of pain. It is also important to note that not all women experience symptoms. Some symptoms include:

• Painful, heavy or irregular periods
• Painful bowel movements
• Pain during and after intercourse
• Fatigue
• Infertility

Some women also report symptoms such as (Not all is listed):

• Pain on ovulation
• Pain during an internal examination
• Pelvic pain
• Lower back pain
• Leg pain

It is important to remember, endometriosis is not an infection, it is not contagious and it is not a form of cancer.

(this information is from endometriosis-uk.org and official NHS website)

MY STORY

I was 12 when I started my periods, but it wasn't until I was 14/15 that I first started to experience symptoms, of what would later be diagnosed as endometriosis. Like many women, my first symptom was very painful periods. Every month, without fail, I would be doubled over in agony. I would be heavy breathing and clutching a hot water bottle just anxiously waiting for the pain to end, only for it to appear again the following month. My mum often described my state as ‘looking like I was in labour’. As you can imagine, I was in absolute distress, often crying through the pain. Even writing this, I am aware that this probably sounds very dramatic to someone who may not have endured endometriosis but trust me, it is horrible. The worse part of this experience was that I didn’t really know why. This was what every woman across the world experienced, right? Or so I thought.

I am unaware of how many times I visited my GP from this moment as a teenager to when I was diagnosed. I just know it was every few periods. I was convinced something was wrong as surely this was not normal, even though the doctors were now dismissing it as ‘’bad period cramps’’. This is a problem that I know is, unfortunately still, common with the condition. I did, however, begin speaking to school friends. I would casually ask in conversation what their periods were like and noticed that they would say things like ‘’I have a stomach-ache on day one but that’s about it’’. This was nothing like me.

Like many girls, and women, who are yet to be diagnosed, I had the illusion that maybe I was just weak and couldn’t cope with periods. As time went on, I tried to convince myself that this must be normal and that I had to just deal with it. Despite this, at the back of my mind, I knew there was something wrong.

When I was sixteen, after already having had countless trips to the GP, I was put on the contraceptive pill (I am unsure of which one it was). This is the first step the GP takes as it should help with the pain. I know this has helped a lot of girls, and women, who experience painful periods, but this is not always the right solution for ones with endometriosis.

Soon after I was put on the contraceptive pill, I had to stop it as I was experiencing side effects. After that, I decided to just try to manage my pain naturally.

Despite this, the pain continued, and I absolutely dreaded getting my period every month. I had started to notice a pattern to my pain too. I would notice my pain was worse in the mornings and usually on day three of my cycle, which at the time was 6-7 days long. The intense pain would also last around 30 to 40 minutes and although that doesn’t sound very long, it felt more like two hours. Like I mentioned at the beginning of this, I would be sat doubled over, sometimes not sure if the pain was eased more by sitting down or walking around. Although it would only last a short time, I would be exhausted for the rest of the day and felt it would drain my body of all its energy. It is important to note that although the intense pain lasted only 30 to 40 minutes, I would still experience pain in the days before and after that intense moment.

Around this time, I had finished school but was in college studying my a-levels. I didn’t have the best school experience, but I loved college. It was a shame that the good experience of college was spoiled every month by this pain. Despite this, I got the grades I wanted and was, and still am, so proud of myself for not letting it stop me. This was proof to myself, that although I felt weak with this pain, I didn’t let it stop me in certain areas of my life.

Fast forward to my early twenties, I was still experiencing intense pain every month. During this time was when I first hear about endometriosis. I, also, learned that one of my cousins had been diagnosed with it. At one of my next GP appointments, I mentioned it and this was the first breakthrough. It was the first time I felt like I was being taken seriously.

Between the ages of 18 and 22, I was put on the mini pill. The one I took was called Cerazette and despite experiencing headaches on it at the beginning, it worked well for my pain and it, also, stopped my periods completely! Although I was aware of the possibility of endometriosis, at this time, because Cerazette was working so well for me, I decided to stay on it. The thought of not having periods and the unknown of if I actually had endometriosis was a weird feeling but it was the first time I had experienced an, almost, pain-free life so I wanted to enjoy it.

In June 2016, I decided to stop Cerazette after relying on it since 2012. I didn’t experience any physical symptoms stopping it but I was nervous. My main reason for stopping it was because I wanted to see if my symptoms were still there. I was hoping they would be gone and I would just be able to live a normal life and have periods like ‘a normal woman’. I was wrong, they were back, although surprisingly not as routine as they were before. The pain would happen at any time but from what I felt, not as intense. Despite saying this, they were still bad. 

In February 2017, I had my first, and only so far, laparoscopic surgery to properly diagnose endometriosis. It was then that it was confirmed, I had stage two endometriosis (there are in total four stages). The surgeon confirmed that he had found growths mainly on the right side of my pelvis and, also, near my kidneys. The location of growths by my kidneys explained my intense lower back pain. This is a pain that I still experience to this day. This could be an idea for another post, but my surgery experience was good. I was in and out the same day. I did, naturally, experience pain and post-surgery symptoms but it wasn’t as bad as I had anticipated beforehand. I was working part-time in retail at the time (I was, also, in my first year at university) and took two weeks sick leave at work before returning as usual.

Once I had read up on the condition, I sort of convinced myself that that was what I had so the diagnosis came as a relief more than a sense of sadness. As time has passed since 2017, I have struggled quite a bit emotionally and mentally with having endometriosis but physically, I have managed to control my pain with the mini pill I was previously on.

I always feel like I am one of the lucky ones with this condition, as silly as that could sound. I have spoken to many girls, and women, over the past two years who have been affected by endometriosis and hearing their stories, I do feel lucky that my pain is manageable, to an extent*. I know of people who have been in the hospital for days on morphine as their pain has been so horrific. Hearing stories like that is heart-breaking. I really do hope a cure is found in the, near, future. 

*I am currently period free but Cerazette doesn’t completely get rid of my symptoms. The symptoms that still affect me sometimes are intense lower back pain, hip pain, headaches, and nausea.

________

The main reason I wanted to write this post is to encourage awareness of endometriosis and to share my story. As a previous Journalism student, I love writing and often use it as a sort of therapy for myself. For anyone who may be reading this post and is struggling with symptoms of endo, has the condition (or anyone that has a condition - or an undiagnosed condition - of any sort), as hard as it may feel, please don’t give up. Even though it may feel impossible right now, there is help out there and your answers will be met.

I also hope this post helps anyone who has endometriosis to know they aren’t alone. You are incredibly strong. We’ve got this!

I’d also like to encourage anyone who feels that they may have endo to fight for what you believe. You know your body better than anyone.

Thank you to anyone who has taken the time to read this post.

Lauren xoxo