Written by Karen Gallagher MBE
RED, credit Lorna Sim
When I was given the task to produce a health show for i-Woman Academy I thought I would be a little opportunistic as I was representing an Australian artist Liz Lea to tour her work RED, a one-woman show based on her own story of living with the condition Endometriosis and the impact on her professional and personal life.
But as I delved further and spoke with specialist Dr. Nicola Tempest who is researching the role of stem cells in diseases such as endometriosis and endometrial cancer, I realised there is so much more to this condition.
I chatted to some women living with this condition: Liz Lea a Choreographer, Mandy Tickle a Digital Project Manager and Uma Ramanathan a Creative Practitioner and we talked about, how old they were when they were diagnosed, how it affects them and how are they coping. Their stories are all too familiar. After all, they have gone through, all of them want to know: When will there be a cure? What is the cause? Why is it taking so long to be diagnosed?
Endometriosis affects 1 in 10 women in the UK, that’s over 1.5 million women, 176 million worldwide! Awareness, support and information is needed to further understand this chronic condition.
As the government in the UK begin to debate endometriosis in the workplace. This is timely and an opportunity for the Government to step up its efforts in ensuring people with endometriosis receive the necessary support to help people thrive in the workplace.
“I genuinely believe if this was a male problem a lot more would be done, if so many male working hours were taken out of the workplace and if so much pain was encountered my men I think more research, more resource, more thought and kindness would occur. So many women suffer from this condition and up to five years ago it was really a taboo subject” Mandy Tickle
What is Endometriosis?
Endometriosis (pronounced en- doh – mee – tree – oh – sis) is an Oestrogen dependent chronic inflammatory disease, relying on the body’s production of oestrogen and it affects just women.
“It’s where the lining of your womb (the Endometrium), is found outside of the womb” Dr. Nicola Tempest
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. Around 1.5 million women in the UK are currently living with the condition. Endometriosis can affect 1 in 10 women and girls of childbearing age, regardless of race or ethnicity. Many remain undiagnosed and are therefore not treated.
Every month a woman’s body goes through hormonal changes. Hormones are naturally released which cause the lining of the womb to increase in preparation for a fertilized egg. If pregnancy does not occur, this lining will break down and bleed – this is then released from the body as a period.
In endometriosis, cells like the ones in the lining of the womb grow elsewhere in the body. These cells react to the menstrual cycle each month and also bleed. However, there is no way for this blood to leave the body. This can cause inflammation, pain and the formation of scar tissue.
Endometriosis lesions can be found anywhere in the pelvic cavity:
- On the ovaries
- The fallopian tubes
- On the pelvic side-wall (peritoneum)
- The uterosacral ligaments,
- The cul-de-sac,
- The Pouch of Douglas
- The rectal-vaginal septum
In addition, it can be found in:
- Caesarian-section scars
- Laparoscopy/ laparotomy scars
- On the bowel
- On the intestines, colon, appendix, and rectum
But these locations are not so common. In even more rare cases, endometriosis has been found inside the vagina, inside the bladder, on the skin, in the lung, spine, and brain.
What are the symptoms to be looking out for?
The classic endometriosis symptoms include:
- Chronic pain
- Painful, heavy, or irregular periods
- Pain during or after sex
- Painful bowel movements
“It started off as its carried on throughout my life, I started to encounter pain before my period, quite severe and I thought it was my stomach or my back as that is how it’s experienced by me, pain down my legs, all sorts of pain everywhere, headaches, migraines and feeling sick and it built up gradually as I got older to sometimes I would pass out” Mandy Tickle
What is the impact?
“I have had to design my own career to fit around it, having spent so much time with HR departments asking me why I am having so much time off! So I try to work with companies and suggest I work from home where applicable. I have had to plan my career around my health which has been quite restrictive” Mandy Tickle
Endometriosis can have a significant impact on a woman’s life in a number of ways, including:
- Lack of energy
- Problems with a couple’s sex life/relationships
- An inability to conceive
- Difficulty in fulfilling work and social commitments
“I have reached the point at 49, I will be 50 soon that I need to take at least 2-3 days a month off, I can’t function, I can’t think, there is also a lot of nausea which comes as well, so three days a month, that’s a lot of time in a year you lose as productive living and working time” Liz Lea
How long does diagnosis take?Photo by Anthony Tran on Unsplash
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.
Liz Lea was 40 when she discovered it and Uma Ramanthan was diagnosed at 35 years old through a laparoscopy, after encountering what felt like a large-sized golf ball in her stomach. Mandy Tickle on the other hand was first diagnosed at 19 years but she encountered it much earlier at just 13!
How is it diagnosed?
“My GP told me I had IBS and I was not happy with that, so I had an appointment at Abacus, an NHS sexual health and family planning service, and I explained my symptoms to a female Dr. After offering an internal examination, she said I think you might have Endometriosis” Uma Ramanthan
The only definitive way to diagnose endometriosis is by a laparoscopy – an operation in which a camera (a laparoscope) is inserted into the pelvis via a small cut near the navel. The surgeon uses the camera to see the pelvic organs and look for any signs of endometriosis. If endometriosis is diagnosed, the endometriosis may be treated or removed for further examination during the laparoscopy.
“It was diagnosed as a ‘women’s problem’ and I was told it was the Working Women’s disease that I had!” Mandy Tickle
Stages of the disease.
The stages don’t necessarily equate to pain and discomfort levels.
- Stage 1, the endometriosis is considered “minimal.”
- Stage 2, the endometriosis is considered “mild.”
- Stage 3 is “moderate” endometriosis.
- Stage 4 is the “severe” stage of endometriosis.
So although there are defined stages as Dr. Nicola Tempest says:
“Endometriosis affects different people differently and to different extents, that’s why it’s really important to look at why people get this condition and the stage of disease does not correlate very well to the discomfort or the symptoms that people get which is quite a random thing to happen because usually the worse your condition get the worse your symptoms would be but that is not the case with endometriosis”
Currently, there is no cure for endometriosis. The different treatments available for endometriosis aim to reduce the severity of symptoms and improve the quality of life for a woman living with the condition. The type of treatment taken should be decided in partnership with a healthcare professional.
“The cure would be to remove the oestrogen as it’s an oestrogen dependent condition and to remove the oestrogen you would have to remove the ovaries, but on young women that would mean you were infertile, it would mean long term wise if you had children and wanted your ovaries removing because causing endometriosis, we know ovaries by removing them decreases your lifespan, increase the chances of dementia, increase chances of bone fractures. It’s not a good thing to remove peoples ovaries in their 30s for example as we want people to have their ovaries til at least menopausal age ” Dr. Nicola Tempest
What are the treatments available?
Treatment options available to women with endometriosis are:
As a treatment for endometriosis, surgery can be used to alleviate pain by removing the endometriosis, dividing adhesions or removing cysts. There are three options of surgery for treating endometriosis:
Conservative surgery aims to remove or destroy the deposits of endometriosis and is usually done via a laparoscopy (keyhole surgery). The surgeon can either cut out the endometriosis (known as excision) or destroy it using heat or laser. Although surgery can provide relief from symptoms, they can recur in time.
“I asked was that the only solution and was told: Well you want to know what’s wrong right? So 10th June, I had the surgery. Before the surgery I had loads of issues where I thought it was IBS, certain foods I couldn’t it and it triggered indigestion, bloating and pain. Post-surgery it was explained that certain other conditions can present with it and in my case, it was IBS” Uma Ramanthan
“I had the disease cut out of me, but it has returned along with Adenomyosis”. Liz Lea
Depending on the severity of your endometriosis, you may need to undergo more complex surgery that involves different organs within the body, such as the bowel or the bladder. These types of surgery will often include a multi-disciplinary team such as a colorectal surgeon, and are usually carried out via laparoscopy. Any complex surgery should be discussed thoroughly with your doctor or specialist.
Radical surgery (Hysterectomy and or Oopherectomy )
“I was offered a hysterectomy but up until that point I had still been trying to have children” Mandy Tickle
Hysterectomy is the removal of the womb, and is performed under general anaesthetic. It can be done with or without removing the ovaries. If the ovaries are left in place then the chance of endometriosis returning is increased. Some women need a further operation to remove the ovaries at a later date. Hysterectomy is not the right operation for everyone and is not a decision to make lightly. A hysterectomy is irreversible.
Oophorectomy is the removal of the ovaries. When both ovaries are removed, a woman will experience an instant and irreversible menopause.
These procedures may be considered for a number of reasons. The decision to have either of these procedures is a big one to make – they are irreversible, so the advantages and disadvantages of each surgery should be discussed in full with your consultant.
“Having a hysterectomy alone won’t do anything to endometriosis as it’s the ovaries that are the problem. You need the ovaries removing and peritoneal stripping’s, all of the endometriosis removing. If you don’t remove all of the endometriosis at the time of removing the ovaries potentially if you have any oestrogen stimulants, so if you go on HRT or something like that the endometriosis even if you have no ovaries could regrow. It’s a drastic thing to happen and shouldn’t be taken lightly” Dr. Nicola tempest
As endometriosis responds and grows when exposed to the female hormone oestrogen, a number of hormone treatments attempt to block or reduce the production of oestrogen in the body. This means the endometriosis will be unable to continue growing and will help to relieve symptoms.
Hormone treatments for endometriosis either put the woman into an artificial pregnancy state or an artificial menopausal state. Both states are temporary and are reversed when the patient has stopped taking the hormones.
“Every month there is a lot of bloating, a lot of pain, and if I didn’t take an awful lot of drugs, a lot of Nurofen, I literally would not be able to get out of bed, which sounds melodramatic but that is the reality. It’s almost like living with a broken ankle!” Liz Lea
The main symptom of endometriosis is pelvic pain – there are various pain relief and pain management options available:
- Heat and comfort
- Pain modifiers
- Pain clinics
- Transcutaneous Electrical Nerve Stimulator (TENS) machines
“So for the last 13 years or so, I have been on long term pain killers” Mandy Tickle
Facts and Figures
The latest facts and figures about endometriosis:
- 1 in 10 women of reproductive age in the UK suffer from endometriosis.1
- 10% of women world wide have endometriosis – that’s 176 million worldwide.1
- The prevalence of endometriosis in women with infertility be as high as to 30–50%.2
- Endometriosis is the second most common gynecological condition in the UK.3
- Endometriosis affects 1.5 million women, a similar number of women affected by diabetes.4
- On average it takes 7.5 years from onset of symptoms to get a diagnosis.5
- Endometriosis costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.6
- The cause of endometriosis is unknown and there is no definite cure.
Is it hereditary?
Some research suggests that endometriosis can be passed down to new generations through the genes of family members. Some families may be more susceptible to endometriosis but the causes of this are unclear.
Talking to Liz Lea she first discovered she had Endometriosis at 40, her sister had it and told her at around 35 that she may also have it because it can be hereditary. By 40 it was in her bowel and she needed a bowel reconstruction.
I met up with Dr. Nicola Tempest, an academic clinical lecturer at the Liverpool Women’s Hospital and I felt that she really did provide some questions posed by the women I had spoken with.
The academic department at The Liverpool Women’s Hospital recruit people into research every time they come into the hospital, have their own tissue bank with 1000’s of samples, have MRes, M.phil and PHD all different students doing all sorts of research projects, very research active. Encourage people who visit the hospital to take part in research as trying to help people in the future.
Nicola explains that they are not sure of the pathogenesis of it and there are lots of theories such as Sampson’s theory of retrograde menstruation when basically you have a period you bleed back out and through your fallopian tubes, but 90% of women do this so why do only 10% of women have endometriosis? There is lots of research going on into the basic science of why people get it.
Involved in a number of different types of research Nicola, works as a clinical Doctor and researcher with a PHD looking into Endometriosis Stem Cells and the makeup of the Endometrium.
“It’s really important we do this basic science”. She is aware people want a cure and would like treatment, but the solution is just not there yet: she explains “We don’t know why as humans, there is only humans and primates that actually menstruate on a monthly basis, why do we do that? How is the endometrium made up so I have been doing 3 D models to see what it looks like and how to target the treatment options”
To conclude as I started, I asked Liz Lea what made her use her Endometriosis story as a creative process to make work and what can we expect when it tours UK in 2020?
“I started dreaming on the idea of making work and RED was going to be all about my life, then working with my dramaturg we whittled the idea down to the Endometriosis experience…….RED deals with the mindset of being a performer and a dancer ignoring certain elements of health that don’t actually stop you from dancing…. Living with a bowel reconstruction!…….. We have just tried to make it funny and as humorous as we possibly can. There are a couple of gut punches in there as well. It’s very OTT, beautiful film and a great variety of music and choreographers”
Huge thanks to all of my contributors, to Dr Nicola Tempest for providing a real insight into the condition and the research that is taking place; to Liz, Mandy and Uma for sharing their stories I found it really informative, engaging and inspiring. Let’s hope through the research we can at some point find a cure.