About Periods | Health and Wellness | 25.02.21

Living with Endometriosis

'@brittneeleysen Endometriosis

Living with Endometriosis can be difficult, but not impossible. The month of March marks #EndometriosisAwarenessMonth, and we’re championing the voices of our community to share their experiences with you.

What is Endometriosis?

Endometriosis is a condition that affects 1.5 million people who menstruate in the UK, and can often be very hard to diagnose. Endometriosis occurs when tissue similar to that of lining of the womb forms on other parts of the reproductive organs or other parts of the body.  Causing extremely heavy and painful periods as well as a number of other side effects. The cells form just as they would if they were inside the womb, and when it’s time for them to break down, the blood has nowhere to go.

Endometriosis can result in symptoms such as;

  • Chronic period pain
  • Very heavy periods
  • Pain during of after sex
  • Pain when peering or pooing during your period
  • Feeling sick, constipation, diarrhoea or blood in your pee during your period
  • Fatigue
  • Depression and anxiety
  • Fertility issues
  • Weight gain
  • Difficulty fulfilling work and social commitments

In some severe cases, Endometriosis can have lasting damaging effects on a person’s organs, so the need to lock down a diagnosis as early as possible is key.  However, diagnosis isn’t often a straight forward experience.  Endometriosis can present in many different ways and resembles a number of other conditions. The only sure way to diagnose the condition, is to find endometriosis tissue in the body, which needs to be through a laparoscopy.

Treatments vary from person to person with Endometriosis, and can range from:

  • managing pain with over the counter painkillers
  • hormone management through contraceptives and hormone supplements
  • surgery to remove endometriosis tissue presenting in other parts of the body
  • Surgery to remove part, or all of the organs affected by endometriosis

With the right care and treatment, living with Endometriosis can be manageable and doesn’t have to get in the way of enjoying life.

Living With Endometriosis

We heard from Brittnee, whose journey of diagnosis took 8 years.

“My first laparoscopy was with a general Gynae who totally botched it – no photos, no biopsy, and only one incision. Woke me up after less than 20 mins of surgery and said it was maybe IBS or the pain was related to mental health. I was devastated. My GP helped me file a complaint with the NHS and I was granted a second opinion with an Endometriosis specialist. Six months after my bogus surgery – I had a successful laparoscopic excision surgery which found I had moderate Endometriosis all over my reproductive organs.

I now shout from the rooftops how essential it is to have surgery with an Endometriosis specialist so it isn’t missed and you are fobbed off as it being IBS or all in your head. I had another surgery this past august which found my Endo had come back and actually spread to my bladder as well. I see a pelvic floor physio who has totally changed the game for me as well, so luckily, I feel like between that, diet, exercise, and the excision surgery I have been able to manage the extreme pain of my Endometriosis better than I did in the eight years it took to diagnosis.

brittneeleysen Endometriosis
@brittneeleysen

I relied on others sharing their experiencing SO much when I was trying to get diagnosed, so now I’m really glad I’m in a place where I can give back to others and share my story. I am currently a helpline volunteer with Endometriosis UK and speaking at their Scotland event in March, so it’s been a wild ride since my diagnosis in 2018.

I use Hey Girls period pants as my Endo makes tampons a no-go. Thank you so much for making an endo-friendly variety of products!”

@brittneeleysen Endometriosis
Brittnee’s Endometriosis Journey

You can find out more about Brittnee’s journey on her YouTube channel.

We also spoke to Shannon, who was diagnosed with Endometriosis last February.

“It took me 4 years to get my diagnosis. I was 16 years old when I got my first period, and there-after I was in excruciating pain, constantly.

I went to my GP with my symptoms and explained that the women in my family had a history of period and thyroid problems too. I emphasised that my mum and my sister also had Endometriosis. After a long conversation I was put on Rigevidon and was told to come back if there were any issues – of course there were probably more issues to begin with!

After going back I was put on a combined pill which began to really deteriorate my mental health and well as increasing my pain and bleeding. Stupidly, I decided to not go back to the doctors and took myself off the pill.

 As you could expected I didn’t really help myself from doing that. I moved over to the Isle of Arran at 19. It was the first week of my new job and I was sent home on the second day as I was crippled with agony. I made the decision that I had to go back to the doctors, ask for help and plead they let me see a gynaecologist. 

@respectwummin Endometriosis
Shannon’s Endometriosis Journey

When I went to the doctors and explained everything he was completely understanding and before I got the chance to mention the possibility of Endometriosis he asked me if that what I thought it could be. It was amazing listening to a doctor tell me my pain was valid. Within 4 months I had seen a gynaecologist, had my pre-op assessment and went for my operation.

I couldn’t be happier with where I am now. It’s still hard for me and I have had a few bumps but I try my best to shed light on endometriosis as it’s something I was never made aware of in high school. I’m proud to be an endo warrior!”

@respectwummin Endometriosis
@respectwummin

Endometriosis Support

If you ever have concerns about your reproductive health & wellbeing, always seek the support of your doctor. There are lots of fantastic organisations who can offer specialised support in living with Endometriosis, such as Endometriosis UK. Check out our collaboration with My First Period podcaster, Lucy Evers, who also shared her Endometriosis story with us in poetry.