Let’s talk about Endometriosis - Endometriosis Awareness Month | March 2024

In this article we will be covering what Endometriosis is, looking at diet and exercise, self-care, how workplaces can better support someone with this long-term health condition and related health issues.

This blog includes an interview with Maria Angel (MediaTracks) and Helen Choudhury (MPA) on their experiences of living with this condition.

Read more here about our MPA M³ (Menopause, Menstruation, Miscarriage and Related Health Matters) Employee Network and how to join.

Endometriosis Awareness Month takes place in March across the world. During this month we aim to increase awareness of Endometriosis and its associated conditions, highlight the symptoms, causes and treatments; and put a focus on these debilitating conditions to help everyone, regardless of culture, gender identity, age or ability to become more aware of how to provide support to those learning to cope with it.
Endometriosis affects around 176 million women worldwide, and there is currently no cure. The underfunding of women’s health issues over the years means conditions like Endometriosis have not always had the attention they deserve. However, there are treatments available. Speaking with your GP or gynaecologist is the first step towards obtaining a diagnosis and/or relief.
Endometriosis is a chronic, inflammatory, gynaecological condition that shows itself by the presence of endometrial-like tissue (clots of blood) outside the uterus. Many women experience exceptionally painful symptoms, and are at risk of infertility, occurrences of fatigue and other associated symptoms. This condition presents in various ways with several differing effects at multiple stages in a woman’s life. A long diagnostic delay after symptoms begin is far too common, and persistence and recurrence of symptoms despite treatment is also common.

The common symptoms of Endometriosis can include pain in your lower abdomen or back, known as pelvic pain, which is usually worse during your period. The intense period pain can inhibit you from doing your ‘normal’ daily activities. Some women can experience vomiting, nausea, constipation and diarrhoea. Your period flow can be so heavy that you may need to use several or more tampons or pads. You may also experience bloating, poor digestion, anaemia, irregular bleeding, pain-induced vomiting and/or fainting, brain fog, dizzy spells, migraines and insomnia. Due to the wide range of symptoms, it can sometimes take up to 7 years to get an appropriate diagnosis, so prompt action on your part is recommended. Increased back pain during your period can also be a sign of Endometriosis because of muscle irritation from general inflammation or due to the position of the uterus in the pelvis. It is important that you recognise the symptoms and speak with your health professional as soon as possible.
Endometriosis can affect fertility. Women can have difficulty getting pregnant and even feel depressed or experience ongoing instances of feeling very low in mood. Speak with your partner, parent, doctor or therapist about your feelings and concerns.

If you are experiencing any of these symptoms and you’d like to find out more, Endometriosis UK have a pain and symptoms diary tool that you may find useful.

What can you do to relieve the discomfort?
Because Endometriosis affects every woman differently there is not one solution that fits all. However, you can speak with your doctor and/or gynaecologist who will have some suggestions for you, which are likely to include simple lifestyle changes, medication and surgery. In addition to those, there are some home remedies and treatments and of course, over-the-counter or prescription medications that can help ease the discomfort. Take a moment to work out a schedule for yourself to manage your self-care. Some women find relief in acupuncture, pelvic floor muscle therapy or massage and applying natural progesterone cream. You should try to plan ahead and practice a healthy lifestyle. It is easier than you may think. Try to reduce or quit smoking, join a local group or ask your GP to sign you up for a programme, and do not binge on alcohol or any other addictive substances, all of which are unhelpful in relieving the Endometriosis pain and discomfort.
Speak to your Doctor to agree on how best to manage the pain, whether through pain medications like ibuprofen or paracetamol, staying hydrated by drinking water (tepid not chilled), using a hot water bottle, or a wireless heat pad and applying it to your lower back or abdomen. Alternatively, fill a clean sock with uncooked rice and warm it in the microwave for 2 minutes, then rest it on the area (be sure not to apply it directly against your skin – and please ensure it is not hot enough to burn), or take a warm bath as this can relax your muscles and ease cramping pains.
It is important that you visit your GP or health practitioner as soon as you feel any of the symptoms mentioned in this blog, and be prepared to discuss at length your experiences, and ask as many questions as you like.

Watching what you eat – does diet and exercise help?
A nutritious diet involving drinking plenty of water and eating green vegetables, avoiding processed foods as much as possible and eating a variety of fibre-rich plant-based foods, healthy fats, nuts and seeds, ghee, coconut oil and organic butters is suggested by health advocates. Hormone support that works by controlling excess oestrogen and toxins can also be good because Endometriosis is an oestrogen-dependent condition.
Foods with a low glycaemic index are broken down at a slower rate and therefore create a gradual rise in blood sugar levels over time, so it is vital that your food intake is balanced. Articles on this aspect of treatment often suggest avoiding processed foods like tinned or packaged and UHT products and suggest taking up some form of exercise.
Increasing physical activity and bringing some quiet time into your daily routine like meditation or breathing exercises could also be beneficial. Once again, we must remind you of the importance of discussing your health changes with your GP or doctor before starting any exercise or health programme.

Recommended diet planning books:
The 4-week Endometriosis Diet Plan book
The Anti-Inflammatory Diet for Endometriosis

What support can you expect from your employer?
Endometriosis is not considered a disability under the Equality Act 2010, however, it is a Long Term Health Condition (LTHC) and as such could fall into the category of LTHC which would lay obligation on the employer to provide reasonable adjustments and support to the individual to help them work in more comfort in the workplace.

If you have been diagnosed with Endometriosis you should mention it to your manager and go through the Occupational Health Assessment process to have it recognised. Thereafter, several options should be offered including flexible, hybrid working and consideration for attending hospital and GP appointments.

Organisations, managers and leaders should support engaging flexible working arrangements for someone who has been diagnosed with Endometriosis. The person may require much more flexible working arrangements that provide assurances that they have access to the type of working conditions they require to work in comfort whilst dealing with the condition.

Associated Illnesses
Another health-related issue like Endometriosis is the lesser-known Adenomyosis, a severe version of Endometriosis (with similar chronic pain, heavy bleeding and discomfort as the main symptoms). Adenomyosis is a condition where the lining of the womb (the endometrium) lodges in the muscular wall of the womb and brings heavy and prolonged menstrual bleeding. Treatment is similar to that of Endometriosis and there is no known cure. If you feel that you are experiencing symptoms, you should consult your GP immediately. Self-help relief can include a diet and exercise plan and medication.

Fibroids, PCOS, and Heavy Bleeding are all extremely uncomfortable, painful conditions that many women go through during the course of their lives. If you feel that you may be experiencing any of the conditions or symptoms in this article, you should contact your GP or speak with your gynaecologist and be prepared to ask as many questions as needed.

For support and further information:
Endometriosis UK is an organisation with a focus on this condition and they have a directory of local support groups, a helpline on 0808 808 2227, webchat, and an online community on Health Unlocked for women affected by this condition.
The Royal College of Obstetricians and Gynaecologists have produced a list of medical terms that you may find useful in helping you understand some of the terminology and language used when reading about or speaking about Endometriosis or its associated conditions, or treatments.

Interview with Maria Angel, Operations and Partnerships Manager, MediaTracks Music and Helen Choudhury, Head of DEI, The MPA Group.
We all know by now that ‘normal’ periods do not cause pain or heavy bleeding if you have pain and heavy bleeding you need to see a doctor or your gynaecologist.

How long have you had these symptoms for?
Maria: Ever since I got my first period (age 13). I always thought this was ‘normal’ (as that is the only reference I had), and I would try to power through the pain and excessive bleeding. However, the first time that I thought “ok, something is wrong here” was in 2017 (I was 22) on a holiday in Argentina. We were visiting the Recoleta cemetery (which makes the whole experience even more grim, ha-ha) and I had white shorts – you know where I am going with this. Suddenly I felt a really sharp, overwhelming pain. I had to run to the loo to find some privacy and that is where I realised that my period had come significantly early and that I was bleeding REALLY heavily. The pain was so bad that I was sick, and I had to stay crouched on the toilet floor for half an hour. As I returned to Colombia I saw a gynaecologist, who prescribed me with birth control and an ultrasound. It turns out that I had a cyst in my right ovary (which made the pain worse), and I was placed on birth control treatment.

Helen: Several years ago, I remember feeling a sharp pain on the lower left side of my abdomen. It was like somebody was stabbing me with a knife. It lasted a couple of hours. I was crouching over trying to stop the pain and ended up vomiting.

Please can you describe some of your symptoms and the level of pain?
Maria: Currently I am dealing with a very large cyst in my left ovary, so the symptoms and pain are much worse. I will describe symptoms and pain for both scenarios. Normal (no cyst): stomach pain, lower back cramps, vaginal cramps, bottom cramps, sore breasts. Pain level 7/10. With cyst: All the symptoms above (but more intense) plus constant pain in my lower left side (where the ovary is). I had 2 months where the pain was 24/7, reaching points of pain 10/10 (even without my period) where I would nearly pass out. Now I am back on birth control and waiting for surgery, and the constant pain is down to a 3/10. In addition, I have strong cramps when I ovulate (with and without cyst – but with the cyst it is even worse, especially when I am ovulating from my left ovary).

Helen: I have chronic pain that has been compared to bad labour pain. My pain level has been assessed at 10/10. I scream in pain from the knife-like stabbing in the uterus. My periods are extremely heavy and uncontrollable. The pain is so bad that I vomit everything up so I cannot keep medication down. I cannot eat during this time, and I have passed out due to pain many times. I have also ended up in hospital quite a few times. I also have periods 2 or 3 times a month and they can last between 5 to 9 days each. Because of the heavy bleeding, I am also anaemic.

Have you ever spoken to a doctor about it and if so, what did they suggest you do?
Maria: Yes. As I explained above, the first time they recommended birth control. Fortunately, I reacted positively to the pills, but I know a lot of women who do not. In addition, I feel like I was discriminated against and undermined by that doctor because I told them I was a lesbian. He constantly kept talking about the benefits of birth control treatment for reproductive purposes, brushing off my sexuality and the actual issue.
The second time I had a really bad episode (with the second cyst) I waslreadydy in England and I went to the NHS. My GP pushed for a quick ultrasound (where they discovered the cyst) and I have been in the process of waiting to see if it dissolves (like the first one) or if I need surgery.
However, I have been told that if my cyst is an endometrioma (which every doctor says it looks like), there might be a possibility that they cannot perform the surgery fully and I would have to be sent to an endo specialist for the surgery. The worrying thing is that they have said that the only way to diagnose it is to initiate surgery and observe from inside. I do not want to be cut open twice – I do not understand why they don’t send me to an endo surgeon right away. It is frightening and frustrating.

Helen: In the past, the doctors thought I had Irritable Bowel Syndrome (IBS) or normal period pain. I was sent to see so many different gynaecologists that I lost track. It was only a few years ago that my symptoms were diagnosed properly. Over a 2 year period, I had an MRI and a couple of scans followed by a laparoscopy. It was after this that I was diagnosed with Endometriosis and Adenomyosis. They could not treat my disease surgically. Both diseases are progressive, chronic and debilitating and can cause infertility. A few doctors suggested hysterectomy prior to the MRI but only if I choose not to have children. I wanted to have children. However, hysterectomy was also not an option by that time because I was diagnosed too late and I had stage 4 Adenomyosis and Endometriosis.

Have you had any medical treatment?
Maria: In addition to the birth control pills and really strong painkillers, no.

Helen: My doctors prescribed two different NSAIDs (I have been informed that they can damage my organs if used long-term) and a tablet that stops my periods. However, they do not work all the time or effectively. I just have to be on alert at all times.

How has Endometriosis affected your day-to-day life?
Maria: My periods are so strong that I sometimes must take days off work/social life from the cramps. I also need to plan holidays/trips based on my cycle. Lately, with the cyst it has been a whole different story. From mid-November until mid-January I had constant pain (5/10) 24/7, with some peaks in the middle of the night going to 9/10 – 10/10. I could not sleep and I was losing my mind. After going to my GP almost every day for 2 weeks I was diagnosed with the cyst and prescribed a strong painkiller to take daily. Later I discovered that this painkiller is very harmful to your kidneys, so I stopped taking it. Going back to birth control (which I started in January) has helped with the pain, and now I ‘only’ feel discomfort 24/7, but pain of 4/10 around 3-4 hours a day. I had never lived in a situation where I experienced 24/7 pain/discomfort and I had not realised how much of a physical, emotional and mental toll it has on an individual.

Helen: In the early days it was a nightmare trying to manage this illness at work, in public and at home. It takes a lot out of you. I was tired, stressed and worried all the time. It was difficult to socialise with family, friends and colleagues because I was constantly tired and scared just in case I had a period-related accident or started screaming in pain. It impacts on your relationships with others, especially if they do not know that you have this disease. I used to be shy talking about my diseases but I realised that this was not helping me or the other person so I have decided to speak up and raise awareness.

Do you think that our medical professionals understand what Endometriosis is?
Maria: No! I have not even been properly diagnosed because “it’s too difficult to diagnose”. If I am being honest, I think that if men suffered from Endometriosis, they would have found a treatment/cure for it 50 years ago. Just another example of misogyny in the health sector.

Helen: I agree with Maria, there is some awareness but not a complete understanding. Not many people have heard of Adenomyosis and that includes our doctors. I mean, I was diagnosed with IBS by a male doctor!

What can we do to raise more awareness and support for people with Endometriosis in the workplace?
Maria: Start talking openly about periods and women’s bodies – over half of the population identify as women and we are all born from one (so let’s praise the reproductive system). Talking openly about it would help those who have symptoms and make management more aware of the limitations of an employee with Endo.
I am very fortunate to work at a company that focuses on equality, diversity and inclusion, which means that they have been great at supporting me through it.
Firstly, I work mostly from home, which is great during painful periods as I can be in comfortable clothes and can take breaks if needed. In addition to this, our Creative Director, William, and our CFO, Andrew, are flexible when it comes to our schedule and, in their own words, ‘health is always a priority’.
I have been able to go to several medical appointments/treatments that are scheduled on a working day, and they have been nothing but encouraging and understanding. Finally, my colleague Alex has constantly supported me by offering to cover tasks or by filling in while I need to be absent due to exams/appointments – a lifesaver! Knowing that you work for people who care for you as a person has no price, and I think that organisations need to follow this example and be more open about discussing these issues and working as a team to be able to support individuals. In the end, the more supported you feel, the better and more passionate you will be at your role.

Helen: We have got to move away from keeping female (and those assigned female at birth) issues hush-hush. We are not going to make any progress if we shut up and put up with things. The workplace belongs to all of us. We make up 50% or more of the workforce. Period and related health matters affect everyone. My diseases have affected my husband and my family but they have made an effort to learn about it and talk to me so they can support me better.

I was fortunate to have good managers. What I found in my managers was support and understanding. I could work from home and attend office as and when I was able to without any pressure. My colleagues are aware of my condition, and they have always been supportive. Whenever I go into the office, they always make me feel like I belong. Both my current and previous employers ensured that I had the support that I needed both at home and in the office. You can only get the support you need if you are able to talk about your health matters. Your manager will only understand what you are going through if you talk to them. I had to be confident and trust that my managers would do their best to support me. My current manager, Paul Clements and my ex-manager Mark Ferry have both been very supportive since I informed them of my health conditions. Above all, they listened to me. They wanted to learn about my condition so that they could support me and others going through the same thing.
The last thing that a person needs to deal with on top of their illness, health condition and/or disability is a manager that lacks empathy, understanding and humanity. I am lucky to have the support and understanding from my manager Paul.
We need more managers to learn about female health, learn how to support them better at work, provide reasonable adjustments and look at flexible working. You do not need to be in the office for the work to get done. Trust that your employee will be professional and will do a good job. We need more people to talk about female health matters and their lived experiences.

Do you have any advice, tips or suggestions for women (and those assigned female at birth) on how to manage their symptoms better?
Maria: I bought a TENS machine (from Boots), and it has been a life changer with the cyst, especially when I am ovulating. It heats up and sends small electric signals which massage the area and help release the pain. Other than that, yoga and paracetamol.
In terms of the heavy bleeding, the only thing that has worked for me (without leaks) is the cup – I highly recommend it.

Helen: I use hot water bottles, relaxing oils and an electric neck massager which doubles up as a belly massager, lol. Massaging the abdomen and lower back regularly helps. As mentioned above, I have been prescribed medication and they help too. A change in diet helps although sometimes it can be difficult to regulate what I eat. Try to avoid bread, sugary and fried food. And make sure you have plenty of rest because you are losing a lot of blood, and the pain can make it worse.

Just be kind to yourself.

Music Publishers Association