At Free Soul we champion women’s health everyday, not just on national awareness days. We believe in creating a safe space for women to discover expert advice (from us and one another), as well as providing you with a range of nutritionist-formulated products that will actually make a difference to your daily routine. This Endometriosis Awareness Month we spoke to experts, and those living with the condition, to discover things from their perspective.
What is endometriosis?‘Endometriosis is the name given to the condition where cells like the ones 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. It is a chronic and debilitating condition that causes painful or heavy periods. It may also lead to infertility, fatigue and bowel and bladder problems.’
Latoya Busumbru is the founder of Wombbae, a platform that discusses underlying issues with everything related to our womb, including endometriosis, fibroids, PCOS and more. Latoya has suffered from fibroids and undergone 2 operations in 4 years. She’s hoping to shed light on the matter and encourage other women to share their experience on all womb related topics.
What causes endometriosis?‘Nothing, and sadly there’s no cure either! You’re born with it, and it tends to start causing problems when you start getting your period. There are some doctors that say Endometriosis is hereditary, however the condition still isn’t understood well enough to guarantee this.’
Sophie Richards runs the Endo spectrum, an instagram platform that provides tips on everything relating to her experience of endometriosis and egg freezing. Sophie’s sharing her egg freezing journey through her platform, informing and helping other women who might be going through a similar thing.
Who is most at risk of suffering from endometriosis?‘Around 1.5 million women in the UK are currently living with the condition. Endometriosis can affect all women and girls of a childbearing age, regardless of race or ethnicity. It is a whole body disease. Because endometriosis manifests itself in a variety of ways and shares symptoms with other conditions, diagnosis can be difficult and often delayed. Recent research shows that there is now an average of 7.5 years between women first seeing a doctor about their symptoms and receiving a firm diagnosis.
Endometriosis can have a significant impact on a woman’s life in a number of ways, including:
Fatigue/lack of energy
Problems with a couple’s sex life/relationships
An inability to conceive
Difficulty in fulfilling work and social commitments’
What are the first signs and symptoms of endometriosis?‘Endometriosis’ symptoms vary widely from person to person. Here are some common signs and symptoms of which to be aware:
Pelvic pain during menses, before menses, after menses and/or anytime during the month.
Painful intercourse-usually with deep insertion or certain positions
Right and/or left-sided pelvic pain
Painful bowel movements
Urinary frequency, and/or urgency, and/or painful voiding
Heavy or irregular periods’
Angie Rankin is part of ‘Endo What’. Endo What fights for progress in endometriosis through film, education and awareness.
Which symptoms strongly suggest you have the condition?‘Even only one of the above symptoms may be indicative of endometriosis. One person may have extremely painful menstrual cramps, while another may have no pain, but experience nausea, bloating, or other symptoms similar to IBS. Yet, another person may not have any symptoms until she tries to become pregnant. Whatever your symptoms may be, they may or not follow a pattern-symptoms may be constant, sporadic, or cyclical in nature. If you are experiencing any of these symptoms, it is important to consult a physician who is well-versed on every stage of endometriosis.’
Is it difficult to diagnose endometriosis?‘Endometriosis is extremely difficult to diagnose, with an average of 10 years delay. Endometriosis is most often found in the pelvis, but has also been found in the bladder, bowels, diaphragm, lungs, kidneys and even the brain. Endometriosis can only be diagnosed through surgery with presence of the disease confirmed through pathological biopsy. While endometriomas and nodules may be visualised on ultrasounds and MRIs, the majority of endometriosis and related adhesions often evade ultrasounds, MRIs, CAT scans and other testing, such as colonoscopies. A negative imaging result does not rule out endometriosis.’
What are the treatments?‘As it stands there’s no cure for endometriosis, however, there are a variety of treatments available that can help ease the symptoms.
Some available treatments are:
Painkillers – such as ibuprofen, paracetamol, co-codamol, and other strong painkillers.
Hormones - these consist of medicine and contraceptives, for example, medicines called gonadotrophin-releasing hormone (GnRH) analogues.
Laparoscopy - this is the surgery that is used to diagnose endometriosis, it also allows the dr to cut away patches of endometriosis tissue.
Hysterectomy -an operation to remove part or all of the organs affected by endometriosis – such as surgery to remove the womb.
It’s important to remember that everybody is different, whilst one treatment might work wonders for one endo sufferer, it could have adverse effects on another. Essentially, it is trial and error and finding the treatment that works for you and your body. However, as the symptoms are severe, not all treatment options work.’
Storm Liberty created the ‘Not Ovary Reacting’ Instagram, a safe space to share ways in which endometriosis affects our bodies, relationships and daily life. This page provides tips and tricks on how they get on with their lives living with this disease.
What happens if it is left untreated?‘A lot of people are either unaware that they have endometriosis, or they are on a long waiting list to be diagnosed. What makes this process even harder is that the only way endo can be diagnosed is through surgery. On average it takes anywhere from 6 to 10 years to get diagnosed. Untreated endometriosis can cause significant pain, bloating, excess menstrual bleeding, and digestive distress. Over time, it can also affect a person's fertility. When endometrial tissue grows outside the uterus, it can affect other organs — especially the ovaries and reproductive structures. However, it is important to note that the above side effects generally take place when endometriosis is being treated, so it’s a tough one!’
Can it affect fertility?‘Endometriosis does not necessarily cause infertility but there is an association with fertility problems, although the cause is not fully established. Even with severe endometriosis, natural conception is still achievable. Many people are unaware of endometriosis as it only gets brought to light when they have difficulty conceiving.’
What lifestyle changes might help?‘In terms of lifestyle changes, I have found that light exercise and walking can help manage my symptoms especially when I am feeling uneven. Don’t get me wrong, there are times when I physically cannot get out of bed as I am crippled with pain, but the times when I am more in control of my body I will do all I can to support it. My go-to is going for a walk around the park or going for a light gym session. Staying active can release endorphins or feel-good hormones. These act as natural pain relievers. In addition, this can help boost your mood which is needed for endometriosis sufferers. Research also suggests that the levels of the hormone oestrogen in your body may drop, so your periods are fewer or lighter.
I would also suggest cutting down on drinking. Whilst I was studying at uni I drank like a typical student, but I found myself with aggravated pain along with a very sore head! Alcohol affects your hormone regulation which has a knock-on effect on your endometriosis symptoms. The dehydration that you get from the hangover, can subsequently lead to increased cramping. Don’t get me wrong, I still have a drink, but I am enlightened to a better way of managing it. For example, I will switch between an alcoholic drink and water.
Reducing your stress levels is another lifestyle change that can help ease the symptoms. Living with constant pain can stress you out which can worsen your endometriosis symptoms, plus make you more sensitive to pain. Hear me out, I know stress can be caused mostly by external factors including work and personal life, but there are ways you can help manage it. I like to take time for myself and have lots of self-care (every day should be a self-care day). It’s important to find something that helps you relax, this might be going to yoga or simply watching a film! Remember, listen to your body when it is asking you to rest.
Incorporating the right vitamins and nutrients into your body is a MUST. Give your body what it needs. This will make you feel better and has many benefits to you internally and physically. There are hundreds of products in the market that have been designed for this very reason, try a few and stick to the one you like!’
What would your advice be to someone who thinks they may have endometriosis?‘My top tip for someone who thinks they have endometriosis, would, first of all, be to try not to panic and inform them that you are not alone. Endometriosis is daunting and most definitely confusing! So, let’s go through some of my go-to advice.
1. Keep a tracker of all your symptoms: literally, every time you experience something write it down in a safe place, no matter if you think it is insignificant (it most likely isn't), get it all written down.
2. Book a GP appointment and present them with your symptom tracker. Open up to your doctor and remember never to suffer in silence. Don’t downplay your symptoms and describe them as precisely as you can. Give the doctor an insight into how your symptoms affect your day-to-day life.
3. Ask about the different treatment options that are available to help you manage the symptoms you are experiencing. Thankfully, the main treatments for endometriosis are available for most people. Your doctor will most likely recommend a hormonal treatment to help ease the pain.
4. If you have not got your endo diagnosis as of yet it doesn’t mean that you cannot incorporate lifestyle changes and try different treatment methods. Of course, having the diagnosis set in stone will put your mind at rest and assist with other things such as informing your workplace of your chronic illness, but it does not mean you cannot access the treatments available.
5. Ask for a gynaecologist referral, they might refer you then and there but if not ask them to. Explain that it is not normal that you’re experiencing the symptoms and you’d like to talk to a specialist.
6. There are times when doctors can be dismissive of your symptoms, so it’s important to not take no for an answer. Remember you know your body more than anybody else. It’s ok to ask for a second, third, or fourth opinion. The unfortunate fact remains that getting a confirmed diagnosis can take a long time. Don’t give up and remember you are not alone.
7. Join support networks. There are so many informative social media accounts out there, find the ones you like and keep up with the different tips and tricks they have to offer! The power of social media is great, there is a whole community out there for those who suffer from endometriosis and other chronic illnesses. I think it is very important to open up about your worries, and no doubt you have a lot of unanswered questions, so get asking!’
‘For years I was told my pain was ‘normal’, that I was being dramatic, and that my hormones would stabilise eventually. None of this was true. Endometriosis impacts 10% of women, and needs proper treatment and management to ensure you can live your life to the fullest.
Never let doctors shame you for demanding more time, and never take no for an answer. Listen to your intuition, if something doesn’t feel right, keep pushing until you get your answer.
Finally, just because Endometriosis is a chronic condition, it isn’t a death sentence. When I was 22, I was bed bound for 10 days of the month, and I thought this was what my life was going to be. Fast forward 4 years, and I’m thriving! I’ve made advocating for women my full time career, I’m managing my endo well through all the tips I share on my page, and the future has never looked brighter.’
Tell us how you personally manage your endometriosis flare ups?‘I personally rely on medication - for example I control bleeding with the combined pill, and tranexamic acid. For pain I use a medical cannabis oil as I didn't get much relief from conventional pain relief. Other than that I love heating pads for flare ups as well as various balms, bath salts and patches. It took many years to reach a point where my pain was being managed well enough to not be in debilitating pain every day.’
Julia Gdula has created an online platform on Instagram called ‘endometriosis awareness page’. This page helps to promote awareness around this topic and educates women on anything related with endometriosis.
‘The 3 areas I have changed that have had the greatest impact are; Food, exercise and stress management.
As mentioned, staying away from sugary processed foods like biscuits, bread and pasta have massively helped reduce my bloating. In addition, I also rarely drink, as alcohol causes my Endometriosis to flare too. Don’t get me wrong…I’m still human! If it’s a special occasion, celebration, or a friend’s birthday…You’ll find me with a big bowl of pasta and a bottle of wine. However, this is with the knowledge that the following few days will be rather uncomfortable!
I used to love lifting weights and spin classes, but since doing my yoga teachers training, and understanding the fight and flight response with chronic health, I have taken a step back from high intensity training and mainly focus on yoga and long walks/hikes. Ironically, this has also had the most positive result on my body, due to it no longer holding on to excess water and bloat from the stressful training I used to do!
Similarly, to the reason I have stepped away from high intensity training, I have also stepped away from my corporate career. I found the constant sitting down all day on a computer, combined with long hours and harsh deadlines too much for my Endometriosis. I look forward to running my blog full time, and travelling the world to deliver talks and explore holistic approaches to chronic health. I also regularly practise mindful breathing as part of my yoga practice, and gratitude journaling.’
‘Hormonal balancer (Mirena). Heat from my electrical heat pack. Low-impact exercise. Drugs’
Mim Giddings is part of the Endo Articles Community. We spoke to the founder of Endo Articles, an online community for women to talk about their struggles. It has now become a large social enterprise with over 7000 patients.
‘I manage my endometriosis and adenomyosis by taking “Synarel” nose spray (putting me on synthetic menopause) as well as seeing a pelvic floor physio. I’m interested in seeking out medicinal cannabis to further help the pain’
Samantha, Endo Articles Community
‘I have a wonderful GP who coordinates my care, which includes a gynaecologist/pain specialist, pelvic floor physiotherapist, psychologist and psychiatrist.
On a day-to-day basis, I take several medications, and do exercises my physio sets for me. I have fortnightly psychology sessions, see my physio when I’ve had a flare-up, and I’m on the public waiting list to have my second round of pelvic floor Botox.’
Lucy, Endo Articles Community
How did you find out you had endometriosis?‘My endometriosis story is very complicated, but when my chronic pelvic pain started and the doctors didn't have a clue what it could be, I accidentally learnt about endometriosis from a YouTube video, the lady spoke about her symptoms and it was like a checklist. I went on to do extensive research into the condition. Unfortunately I was having a really hard time getting doctors to take me seriously, so I ended up having to pay to see an endometriosis specialist, who did an MRI and they found signs of deep infiltrating endometriosis. After this I was able to be seen by an endometriosis specialist on the NHS, who was going to perform a laparoscopy and excise the endometriosis. I had surgery in October 2021, my surgeon told me I did not have anything wrong with me, and discharged me from gynaecology 15 minutes after I woke up from surgery. At the moment my journey has come to a halt, it's a complicated situation and it's very distressing to not know what's happening to you, but I still believe it's endo.’
‘When I was 16, I started my period. Along with the usual period pains people suffer with, I experienced heavier bleeding, longer periods and stronger cramping/tugging pains which I now know to be very common in women with Endometriosis. Additionally, I started suffering from painful bloating, chronic fatigue and cystic acne. After 5 years of going back and forth to the doctors, they finally discussed the condition, Endometriosis (Endo). I was booked in for surgery, and told they had in fact found Endo.
Unfortunately, the surgery wasn’t done by a specialist, meaning they didn’t look for further Endometriosis other than the pain points I discussed, and I was given the incorrect surgery (Ablation, which is where they cut the endo out, vs Excision which is taking it out at the root). Additionally, I was advised to have a hysterectomy at the age of 21, which I almost had, if it wasn’t for complete luck of stumbling on the right doctor.
Endometriosis is a chronic condition, meaning life-long. So, ensuring you have the correct surgery (Excision, by a specialist) is absolutely key in ensuring maximum results and minimal surgeries.’
‘It took me 12 years to get an endometriosis diagnosis. My very first period was extremely heavy and unbelievably painful. I went to see a doctor straight away, who told me that this was normal. After 12 years of searching for answers, I finally found a gynaecologist who told me this was not in fact, normal, and asked me if I had ever heard of the word endometriosis before. She encouraged me to have laparoscopy surgery, which I did. I was then diagnosed with stage three endometriosis.’
JAY, Endo Articles Community
‘I found out I had endo through seeing someone I knew from school post about it. Then I went down the road of endo and got an internal ultrasound where they said I don’t have endo. I didn’t believe them so I got a second opinion and she said it sounds like endo, let’s open you up in a laparoscopy September 2022.’
Mim, Endo Articles Community
‘I was searching for answers for 4 years before I had laparoscopy surgery in 2022 which found stage 3 endo and adenomyosis’
Samantha, Endo Articles Community
‘I’ve had heavy and painful periods since I was about 15. They gradually got worse and worse, and I saw a GP about it when I was 20. She was extremely unhelpful, and implied that my symptoms were normal and I should just deal with it. I cycled through a few more GPs, who were progressively more helpful, but none of them had any explanation for why I was bleeding so much. I wanted to try an IUD to manage my symptoms, but I couldn’t afford the insertion cost. I ended up on the waiting list to get one through the gynaecology clinic at a public hospital. As I was waiting, my pain got worse and worse. It started as period pain, then I developed ovulation pain too. Eventually, I was in pain almost every day. Through anxious googling, I saw the word endometriosis for the first time. It sounded scary, but it made so much sense. When I finally saw the gynaecologist, she refused to investigate any sort of diagnosis and sent me away in tears. I complained to APHRA, so the hospital offered me a new appointment with a different gynaecologist. He was wonderful. He listened to my story, and said he was almost certain I had endometriosis. Two weeks later, I was back at the hospital getting a diagnostic laparoscopy. By this point, I was 23, and I’d been dealing with these symptoms for 8 years. After I woke up, the nurse told me they found endometriosis. I vividly remember saying, “I knew it.”’
Lucy, Endo Articles Community
How does it impact your day-to-day life?‘I have some sort of degree of pain every single day, I have severe bladder issues and I am experiencing incontinence at the age of 20, my bladder is severely overactive and I am currently awaiting treatment. I also experience a lot of pain with bowel movements. I have pain in my pelvis, back, legs, chest and the severity varies from day to day. As well as this I commonly experience extremely heavy bleeding. Due to my illness I am unable to work or attend university. But my illness did also inspire my chronic illness related business and has given me a passion to spread information about endometriosis to the endometriosis community on instagram, helping other patients understand the condition. I have been housebound for about 3/4 years now and it has really taken a toll on my mental health as well as my physical health. I need a lot of rest due to chronic fatigue. Some days my brain fog is so bad I can't form a complete sentence. My illness and new limitations also led to me losing friends and becoming very alienated and alone. It can truly impact every single aspect of your life.’
‘Endometriosis can flare at any point with no warning, and so I have to be incredibly flexible with my schedule to account for ‘Endo Days’. Endo days is the term I give when I’m having a flare and have to cancel plans.
Socially, It can put a strain on relationships, as sadly it means becoming THAT flaky friend. Additionally, most women with Endometriosis respond poorly to alcohol and sugar. This further adds to the social struggles I have, as the majority of occasions involve food, alcohol, or both.
From a career point of view, I had to quit the corporate career I have spent 4 years building, and completely change my path moving forward. However, for me, this isn’t a bad thing. I am incredibly passionate about women’s health, and am now advocating full time for women in my position, through delivering talks to schools, universities and workplaces, as well as on my Instagram blog @TheEndoSpectrum.’
‘Some weeks are better than others but I find a lot of treatment options and medications are more of a trade-off than anything else. Side-effects are no joke, especially stronger, pain medications. I’ve been lucky enough to access medicinal cannabis, including CBD oil, THC oil, and flower that I use in a TGA approved vape. That has probably been the most effective medication I have tried but it’s not always viable to use in a high-pressure job like the one I work in. Day to day, I also love my electric hot water bottle, which has changed my life. I also find that eating a low FODMAP diet and walking regularly, especially after eating, helps with my gut issues that some say are related to Endo.’
Jay, Endo Articles Community
‘It has a ridiculous impact on my day to day life. Planning. Packing (meds and extra undies). Having endo clothes for endo bloat. Saying no to so much. Working and sleeping.’
Mim, Endo Articles Community
‘I find I fatigue more easily and have lower energy. I have pain in my lower back and when I’m having a flare up, the pain runs down the top of my thigh making it hard to walk or even sleep. I get scared to leave the house sometimes in fear that my IBS will flare up when I’m out. My endo bloat causes me to be self conscious’
Samantha, Endo Articles Community
‘It’s really draining and discouraging. While I’m so glad I finally know why my body is like this, a diagnosis isn’t a cure. What makes it worse is that a lot of my symptoms are caused not by endometriosis itself, but my lack of treatment for so many years. My bleeding and hormones are pretty well under control now, but my nervous system and pelvic floor muscles are messed up after so many years of constant pain. It makes me really angry and frustrated sometimes.
It feels really lonely a lot of the time. I have a wonderful community of people who really care, but it’s hard to explain what you’re going through, and sometimes I don’t even know what support I need. Some days I feel pretty normal, and other days I can barely get out of bed. Most days I can do everything, but it just hurts a lot. I love to run and do Pilates, which can either help or make my pain worse, depending on the day. I’m in medical school now, and it’s absolutely exhausting. If I make it through, it really will be a miracle!’
Lucy, Endo Articles Community
If you’ve been diagnosed with Endo or know someone who’s impacted, it’s a difficult and life-changing journey. We’re not only surrounded by women navigating their way through similar, confusing symptoms, we’re also here to help you too. At Free Soul we’re determined to continue raising awareness for Endometriosis by starting more conversations around the topic. If you’re going through this, you’re not alone. Reach out to us, we’d love to hear your story.