I asked our amazing pilates and barre teacher, Aimee Johnson, to share with us on this topic and feel so grateful for this very raw and real insight to her own experience. She also offers many helpful resources along the way for anyone who has, or think they might have, endometriosis.

What is Endometriosis?

As stated by Endometriosis UK, endometriosis (endo) is the condition where tissue similar to the lining of the uterus grows elsewhere in the body. Endo has been found in the pelvis, around nerves and in few cases the lungs, the heart and even the brain. It can grow anywhere. Each month the cells react the same as they would in the uterus and shed but unlike the cells in the womb, the blood has no way to escape. This causes inflammation, pain and scar tissue. 

Endometriosis symptoms include:

• Painful periods/ovulation

• Pain during or after sex

• Painful bowel movements

• Fatigue

• Brain fog

• Back pain/leg pain

• Depression

• Infertility

Endo is a long term chronic condition and can affect many areas of someone’s life, from mental health to relationships. If you think you have endometriosis, please speak with your GP. They will most likely do other tests first such as blood tests and scans but unfortunately the only diagnostic method for endo is surgery. Not everyone wants surgery and sometimes hearing ‘suspected endometriosis’ and going on the pill to manage symptoms can help. But for others it is not enough. 

Endo is categorised into 4 stages. Stage 1 being few, superficial implants and stage 5 being many, deep implants. The stage of endo and the intensity of pain does not always correlate. Someone with stage 1 could be debilitated whereas someone with stage 5 might not even know they have it and only be diagnosed due to finding it in another surgery. 

It is estimated 1 in 10 women have endometriosis, whether they experience symptoms or not. 

A shocking 30-50% of women with infertility have endometriosis. 

It takes an average 8 years to get diagnosed from onset of symptoms. 

The cause is unknown.

There is no cure. No pill, no surgery, no hysterectomy, no having babies, nothing will cure it. 

Can you tell us about your personal journey with this condition?

I’ve always known my periods were different to the norm. Firstly, I started my period quite late at the age of 16, and when they finally did start, they were irregular and debilitating in pain. I so clearly remember my second ever period, I was in London on a family weekend away and we were walking along the river Thames to the Tower of London. My legs were numb, I was having hot sweats, I felt nauseous, and the pain was immense. Once we got to the Tower of London, we attended a guided tour and I remember being stood in the middle of the tour group crying, next thing, I woke up on a bench with my head on my mum’s lap. I had passed out from the pain.

The irregularity of my periods was also a concern as it could be 5 months between periods (and of course they always turned up at the most inconvenient times, like at prom or backstage in a white tutu). So, my mum took me to see a GP and what a belittling experience that was. No surprise for those with endometriosis that the first comment from my GP was “welcome to womanhood, periods are painful, we all deal with them”. She then went on to query my pain threshold and ended on the fact that as I was very “straight for a teenage girl, you’ve not got many curves” that it must be because my testosterone levels were too high. My mum even interrupted at this point and pointed out that maybe that’s because I’m a dancer who dances 6 times a week, 3-4 hours a day. Yet the doctor was adamant it was my testosterone levels and ordered some bloods. Again, those with endometriosis or suspected endometriosis will have heard the next GP line numerous times, but as my bloods came back normal the GP’s only solution for me was to go on the pill as she didn’t have an explanation for my symptoms. Years later I did go on the pill and my periods were more manageable and regular. 

Unfortunately, I developed myoclonic jerks which was essentially my lower back muscles spasming repetitively to the point it appears I am having a fit. This affected my work, driving and other aspects of my life. Many neurological assessments and scans were conducted but we ended up (by chance) figuring out that hormonal contraception was causing these spasms. I would like to note that this is not scientifically backed. We are aware of the pill causing many side effects, and this so happens to be my adverse reaction. I am mentioning this, even though it is nothing to do with endometriosis as it explains why I am no longer on the pill and why I will not be open to taking it again, so in turn, I now must deal with endometriosis symptoms. 

A couple of years had passed, and I was living in London when I realised my endometriosis symptoms were getting worse. ‘Endo belly’ (bloating), pain, fatigue, brain fog, pins and needles down the leg and pain during intercourse were all getting worse. I rung the GP and managed to get a gynaecology appointment. You’d think a female gynae would be understanding however I even found that she was very dismissive of my symptoms. Due to not being able to take hormonal contraception the only other option was diagnostic surgery and even whilst discussing this I felt as though she was commenting more on the negatives than positives that come with it. Nevertheless, I was on the 2–3 year waitlist. Back in London I noticed I had not had a period in 6 months, so I rung the gynae department to see where I was on the waitlist. They explained there had being a cancellation on the call before me and they could get me into surgery the following week!! So, I packed a bag and came back to Leeds. I was told in the pre surgical assessment that it usually takes 4 weeks before you can return to work but due to being a Pilates instructor, it would be 8 weeks. This is where I noticed endometriosis really controlled my life. Suddenly my life had to change as I realised that if they found endometriosis and my only management is surgery, how am I supposed to remain a self-employed Pilates instructor? The amount of time off needed for surgeries, for endo flares, for periods. I decided to pack my life up in London, move back to Leeds, have the surgery and made the career change into becoming a Physiotherapist, something with more financial security yet still an interest which led on nicely from Pilates. 

My surgery confirmed Endometriosis. Hallelujah! However, I found out they only ablated the endo which is often compared to weeds. Imagine endo is a weed growing in your tissue with roots deeper into the tissue. Ablation only ‘cuts the top of the weed off’, the roots are still there to grow back. Whereas removal (excision) of the endometriosis tissue (should) give you relief for longer as they have completely cut it out. I am now back on the waitlist with a specialised endometriosis surgeon for my second surgery, which will hopefully remove it completely. 

Unfortunately, nothing cures endometriosis, not even surgery, it will just grow back. But we don’t lose hope!! Learning your body and understanding what angers the endo and what calms the endo is helpful. And realising it does control some areas of my life, but I will not let it control all. 

Is there anything that you feel helps/worsens symptoms?

Helpful:

• Hot water bottle

• Codeine 

• Sleep

• No caffeine on the days leading up to/on my period

• Gluten Free diet (however I have now been diagnosed coeliac since the surgery, so not sure if some symptoms crossed over with coeliac symptoms. I now play a fun game of is this bloated belly endo or have I been glutened?)

• Being prepared for the time of month

• Talking to family, friends and my partner so they are understanding of why I may act certain ways on cancel last minute

• Being open with employers as it sometimes is embarrassing having to ring up to cancel a class for ‘period pains’ (luckily, I have the best employers)

Worsens:

• Alcohol

• Stress

• Burning the candle at both ends

• Being unprepared

I feel even though I say these methods help me, they don’t actually take the pain away or reduce the number of random endo belly attacks through the month. I’ve found they’re enough for me to lay in bed and try sleep the pain off. Knowing the first day of your period and taking medication AS SOON as you feel you’ve started your period is a must. We all like to play a game of ‘how long can I leave it until I NEED it’ and we never win, endo always wins. So on day 1 I take tablets straight away, even with slight pain, as I know it will eventually progress and there is no pain killer that helps when it’s in full swing. 

There is so much information out there that I believe it’s trial and error. What works for one might not work for another. There is no way I am leaving the foetal position when I’m in the level of pain of day 1 of my cycle whereas I know someone who only relieves it by going to the gym. Find what helps YOU. 

• Low impact exercise like Pilates, Yoga etc

• Hot baths

• Hot water bottle

• TENS machines

• Painkillers

• Physiotherapy 

  
  

I know you work hard to raise awareness about this condition, can you tell us why this is important to you?

I don’t believe enough is done from healthcare providers and education providers to teach us about endometriosis. It is estimated that 1.5 million women in the UK have endometriosis and yet there is not a lot of research into it, there is no education for us and even for medical professionals. I read a wonderful book ‘Beating Endo’ which stated that in 2017 the American College of Obstetrics and Gynaecology reported that 63% of GP’s ‘felt uncomfortable diagnosing and treating patients with endometriosis and that as many as half are unfamiliar with the 3 main symptoms’. 

Hopefully by spreading awareness, more women who experience these symptoms learn that it is not normal and that it is ok to push your doctors if you want answers. Advocate for yourself. It’s 2024 and talking about women’s health is still seen as taboo. By speaking about it and spreading awareness I have met so many women who think they have it or someone who they know does and it’s weirdly reassuring that you’re not alone as sometimes (a lot of the time) medical professionals make you feel like it is all in your head. 

So ask questions, speak to friends and family, get numerous medical opinions, and do not quit fighting for your health!

Recommended sources:

Websites:

Endometriosis UK

NHS

Instagram:

Shanti Mohling, MD

Books:

Beating Endo 

How to endo

BLEED – destroying myths and misogyny in endometriosis care