Life with Endometriosis – Lianne’s Story

In this article we will take a look at life living with Endometriosis. Endometriosis is the name given to the condition where cells like the ones in the lining of the womb 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 can cause inflammation, pain and the formation of scar tissue.*

It is a chronic and debilitating condition that causes painful or heavy periods. Around 1.5 million women in the UK are currently living with the condition and around 176 million women worldwide. Endometriosis can affect all women and girls of a childbearing age, regardless of race or ethnicity. Endometriosis can have a significant impact on a woman’s life in a number of ways, including; chronic pain, fatigue/lack of energy, depression/isolation, problems with a couple’s sex life/relationships, an inability to conceive/ infertility, bowel/bladder problems and difficulty in fulfilling work and social commitments.*

In this article we speak with Lianne, who has battled with this chronic condition since she was a teenager.

Introduce yourself and tell us a bit about you?

Hi, My name is Lianne. I’m originally from Manchester now living in Preston with my husband, dog and bunny. I’m a 30 years old working in HR. I like gin, pizza and cute animal videos.

When did your symptoms of Endometriosis start? And what were they?

I first started with symptoms of Endometriosis when I was around 13 years old. I remember I was in school and my period started during class. I used the bathroom and returned to the classroom. Leaving class for break time, I stood up and had extreme pain. The pain was so bad I started to lose my vision as though I was going to faint. I was moved to the first aid office and spent the next 3 hours doubled up in agony, being sick and passing out.

What was it like getting a diagnosis? Were doctors good/bad? Were you taken seriously?

I went to a doctor more times that I can remember to ask for help from the age of 13. I was prescribed mefenamic acid in varying doses to help with the pain but nothing worked. I was put on the pill and I resorted to taking it continuously for months to avoid needing to have a period.   No doctors could advise me what the problem was. I was told by most that it was just unlucky that I had painful periods. I was only told I would be referred to check for Endometriosis when I went to a doctor to tell them that my monthly pains were contributing to the depression I was feeling at the time. I had to tell the doctor that I thought i may have Endometriosis. To get to this point took 11 years.

Had you heard of Endometriosis before you were diagnosed?

It was only shortly before being referred, that I first heard about Endometriosis. The symptoms I read about were so similar to my symptoms that I self diagnosed myself to begin with.

How did you feel when you were told it was Endometriosis?

Honestly? I felt relieved I finally had the diagnosis. I knew the extreme pain, sickness and passing out  I went through on a monthly basis wasn’t natural or normal.

What treatment did you have? Were there any problems? Did it help?

I had an exploratory laparoscopy to locate where the Endometriosis was. I had a cut to my belly button and one to the lower right side of my belly. Unfortunately, they couldn’t locate where the Endometriosis was during this laparoscopy. Perhaps this was because they went to look from the right side when I advised much of the pain is on the left hand side around my kidney.

Did family/friend/colleagues take it seriously? Did they support you?

Thankfully, I am lucky to have a supportive husband as well as supportive family and friends. My employer at the time was less supportive. I was forced to return to work too soon after my operation which resulted in split stitches and numerous wound infections. Many of the people worked with didn’t know about Endometriosis or understand what I felt. Most assumed it was just period pains, which it is not.

How does Endometriosis affect your life?

Endometriosis almost ruined my 18th and 23rd birthdays. My period began earlier that expected on both occasions and I was in agony, being sick and fainting most of the day. Thankfully with a strong dose of painkillers, I was able to enjoy at least the evenings of both birthdays.

If I don’t plot when my periods are (no easy task when, even at the age of 30, my periods are not regular) I run the risk of coming on my period early and being ill or fainting in public.

Endometriosis reduces fertility and raises the risk of some cancers. Surprisingly, it reduced the risk of cervical cancer, sadly not in my case, I had pre-cancerous cells removed shortly before my laparoscopy.

I suffer with Irritable Bowel Syndrome (IBS) and Endometriosis aggravates this. I get so painfully bloated for the first 2 days of my period.

What is something you wish people knew about Endometriosis?

I wish people understood the pain. It’s very hard to describe what the pain is like. I can only liken it to a blender churning away at your lower tummy. It radiates to my back, legs, arms. For 3-4 days a month I am emotionally and physically drained because of Endometriosis. I’m never going to be able to get rid of it because it is a chronic condition with no cure.

Anything else you’d like to share about it or your experience?

All I can advise is, if you are suffering with similar pains, don’t just assume it’s normal. Even if you only get a diagnosis and nothing else can be done to help. Having a name for the pain weirdly helps.

 

Massive thanks to Lianne for sharing her experience of living with this painful, debilitating condition. Endometriosis is hugely under diagnosed and the average time of diagnosis is currently 7.5 years*. This figure is totally unacceptable and Endometriosis is a condition we need to be talking about more. Many women, like Lianne, learn to normalise the level of pain they experience during a period but it is not normal to be in debilitating pain during your period. There is still a massive taboo around discussing menstruation, but there shouldn’t be. It is an entirely normal, natural thing. We need to break the taboo and start talking about it, because many women and young girls are suffering in silence with conditions such as Endometriosis. As Lianne rightly states, there is not a cure, however there are treatments available to help. There is no guarantee they will work, as Lianne has explained, but there are options worth trying. Even just normalising talking about periods, and conditions like Endometriosis, will help increase support, understanding and awareness so women are not suffering in silence.

1 in 10 women are battling Endometriosis, and I for one am tired of them battling in silence! Please share this article, and Lianne’s story, and let’s shine a light on this debilitating condition.

Do you suffer with Endometriosis or any other chronic illness? I’d love to hear from you. If you want to share your story on What a Pain then please get in touch via the contacts page.