Save the Date: Monday 22nd May 2023!

Lake Health and Wellbeing is excited to announce that we will be hosting the St. Kitts Premiere of the powerful documentary ‘Below the Belt’. We invite everyone with an interest in women’s health to join us for this important film screening and panel discussion.

Below the Belt shares the personal and inspiring stories of four patients who are urgently searching for answers to mysterious symptoms. The documentary exposes the widespread problems that women with chronic reproductive conditions face. Through the lens of endometriosis, a disease that affects 1 in 9 women, the film shows how women are often dismissed, discounted and disbelieved. It explores issues such as societal taboos, gender bias, misinformed doctors, and profit-driven healthcare. The film reveals how millions are silenced, and how, by fighting back, we can improve healthcare for everyone.

Following the St. Kitts Premiere of the documentary, we will hold a panel discussion featuring representatives from the St. Kitts Department of Gender Affairs, the Barbados Association of Endometriosis and PCOS,  the Mental Health Association, Wellness with Davia and endometriosis patients. The discussion will provide valuable insights into the challenges that women with chronic reproductive conditions face, as well as explore potential solutions to these issues.

This is a free event, but registration is required. You can register by completing the short form here which you can also find below.

We would like to express our sincere gratitude to our platinum sponsor, the Bank of Nevis International, for their support of this important women’s health event.

Bank of Nevis International provides holistic wealth and portfolio management with an inclusive and highly personal approach. They help their clients structure their global ambitions.

You can find out more about them on their website and following them on Facebook and Instagram

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We are also very grateful to our bronze sponsor. TappWater Caribbean for their support of this event. TappWater Caribbean aims to provide sustainable, affordable and convenient products for everyday use that eliminates the need for bottled water in order to have a positive environmental impact on future generations. You can find out more about them on their website

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We’re also grateful to our collaborators the Barbados Association of Endometriosis and PCOS  and Endo What.

Register

You can register for this event using the form below.

Thank you for your support, and we look forward to seeing you at the event.

In the meantime, you can watch the trailer of the documentary below.

The Barbados Association of Endometriosis and PCOS (BAEP) recently published ‘Invisible Not Imaginary’, a collection of short stories that aims to put the spotlight on endometriosis, fibroids, PCOS and dysmenorrhea. The book seeks to raise awareness of the impact of these conditions on the lives of those directly and indirectly affected.

This mostly fictional book invites you to dive into the lives of a variety of people as they navigate life with one of the above-mentioned conditions. Through Invisible Not Imaginary we explore the experience of adolescents, young women, mothers, working professionals and fathers.

Why We Love this Book

We thought Invisible Not Imaginary was a powerful and insightful read. It bravely explores issues like heavy menstrual bleeding, painful periods and infertility – common symptoms of these conditions. It also identifies the insensitivity, lack of empathy and the insecurities that women with these conditions encounter and experience.

Furthermore, the book causes the reader to reflect on the wide-spread normalisation of abnormal menstrual symptoms, the enormous pressure women feel to keep going despite feeling unwell and how invisible and misunderstood many women with these conditions feel.

The stories are very moving providing an honest, open account of the pain, isolation, upheaval, disruption and uncertainty caused by these gynaecological conditions which tend to be trivialised and disregarded because they are not life-threatening but as these stories clearly demonstrate, they significantly affect the quality of life, health and wellbeing of the many women who are affected.

We could relate to many of the experiences and believe the stories will resonate with most, if not all, women because of our shared menstrual experience.  Many women have a story about their menstrual health which they are hesitant to talk about; this book tells our story and gives us all a voice.

This collection of short stories is an excellent and creative way of raising awareness. It really brings the issues to life in a powerful way and leaves the reader feeling disturbed by the challenges faced by those affected by these conditions.

This Book Challenges Us All

This book challenges society to address the health inequalities that exist in public health where conditions like these receive little attention, yet affect so many.

Sadly, discussions about women’s health or reproductive health tend to omit conditions like fibroids and it’s time for a greater focus on these conditions and more balance so that all women’s health issues are deemed important.

Well Done BAEP!

We applaud BAEP on all the great work they have conducted to add some context and depth to the discussion on these women’s health issues and believe this will be an effective resource for awareness and educational work in a range of settings – schools, colleges, medical schools, book clubs, the health sector’s continuous professional development programme and more.

More Information

For more information on Invisible Not Imaginary and how you can order copies, please visit BAEP’s website here or you can send them an email

Also, you can read a summary of our fibroids and endometriosis Twitter chat with Julia Mandeville the co-founder of BAEP here

We’re so pleased to announce that the featured guest for our October Fibroids Twitter chat will be Julia Mandeville, the Co-Founder of the Barbados Association of Endometriosis and PCOS.

Research suggests that 30% of women with fibroids have endometriosis  and in many cases this additional condition goes undiagnosed for many years. By raising awareness of endometriosis we can empower women with the information needed to facilitate an early diagnosis so that the most appropriate treatment is received without delay.

We are so delighted to have Julia as a guest so our followers can get a better understanding of endometriosis especially women with fibroids who may have unexplained symptoms which could be due to this condition.

Who is Julia Mandeville?

Julia Mandeville has been a science and health educator since 2010, gaining a B.Sc in Biology with Microbiology with honours from the University of the West Indies. She also holds a Master of Public Health with a specialization in Global Health from the University of Manchester.

Julia is the co-founder of the Barbados Association of Endometriosis and PCOS (BAEP) and is an emerging global health professional who has a particular interest in reproductive health rights, invisible chronic disease management, research and policy specifically as it relates to Caribbean women’s health.

Her personal struggle with Endometriosis and subsequent diagnosis was the catalyst that caused her to utilize her voice and become an advocate. She also has experience as a consultant and more recently has expanded her academic portfolio with certificates in gender, development and NGO management.

The Barbados Association of Endometriosis and PCOS

The BAEP was founded to address the knowledge gap as it pertains to these pelvic conditions and their impact in Barbados. It serves to advocate for the women in Barbadian society who are suffering due to lack of awareness and works to engage with major and relevant stakeholders to raise these conditions to a priority level in the public health community.

The BAEP is a non-governmental organization located in Barbados which has also collaborated with local and regional entities with similar mandates.

Join Us!

Join our #FibroidsChat to find out more about endometriosis and  the great work that BAEP is conducting to support Caribbean women affected by endometriosis and PCOS. To take part in the conversation find us on Twitter on 10th October at  3pm ( AST or  8pm GMT ) and use the hashtag #FibroidsChat.

Find Out More

You can find out more about the BAEP here  and you can follow the BAEP on social media:

Twitter: @endoandpcosbb
Facebook: https://www.facebook.com/EndoFacts/
Instagram: https://www.instagram.com/endoandpcosbb/?hl=en

To be kept up-to-date on this topic, please sign-up to receive our fibroids newsletter  and you can read a summary of our previous #FibroidsChats here

Today we tackle a question that we are asked quite regularly at our fibroids events: ‘Is there a link between fibroids and endometriosis?’

To answer this question, we’re going to look at what research tells us, but first let’s start with a bit of background on endometriosis. You can find out about fibroids on our fibroids page here

What is Endometriosis?

Endometriosis occurs when cells similar to those that line a woman’s womb are found in other parts of the body like the ovaries, fallopian tubes, bladder and stomach. The problem with this is that the cells that line the womb have a specific function which is only appropriate in the womb. The cells that line the womb build up, break down and bleed every month during our period. In the womb the blood has an escape route (the vagina), but in endometriosis the blood from the womb-like cells don’t have an escape route, and this can cause pain, inflammation and scarring.

Endometriosis is a long-term condition that affects millions of women worldwide causing a range of symptoms, such as heavy and painful periods, back pain, constipation, infertility and more. Thus, it has a significant impact on a woman’s quality of life.

Is there a link between fibroids and endometriosis?

When we look at research that has been conducted in this area, there does seem to be a link between fibroids and endometriosis. Firstly, several studies have found that many women with fibroids also have endometriosis, but just how common it is to have both fibroids and endometriosis isn’t clear as it has varied between studies. For example, a study carried out in the US by a team in Stanford in 2010 found that 86% of patients with fibroids also had endometriosis, whilst in 1994 a team in Italy found that just 12% of women with fibroids had endometriosis. Furthermore, three other studies found that 87%, 21% and 28% of women with fibroids also had endometriosis.  So, it does vary from there being a very strong link (87%) to a relatively weak, but significant link (12%).

When we look at the biology of fibroids and endometriosis there is evidence of a link between these two conditions. It has been reported that fibroids and endometriosis have common biological abnormalities that contribute to the development of both conditions. Namely these are defects in molecules called 17B-hydroxysteroid dehydrogenase (involved in hormone regulation) and aromatase (involved in the production of oestrogen). Related to this it is thought that women with fibroids and/or endometriosis tend to have a hormone imbalance having excess amounts of oestrogen in the body which, in both conditions, causes growth of the abnormal cells.

Why is it important to know about this link?

It’s important for patients and doctors to be aware of the link between fibroids and endometriosis so patients can receive the most appropriate treatment. If there is no awareness that women with fibroids are likely to also have endometriosis, patients diagnosed fibroids will be treated for just their fibroids and their symptoms may persist which the doctor and patient may think is due to the treatment being ineffective, but the persistent symptoms could be due to undiagnosed endometriosis. Researchers from the Stanford Study therefore recommend that doctors explore whether their fibroids patients also have endometriosis. Their study did identify helpful clues to identify whether a patient with fibroids may have endometriosis. They found that women who were diagnosed fibroids were more likely to have endometriosis if they:

• Had pelvic pain that was disproportionate to the size of their fibroids
• Were infertile

Therefore a good starting point for doctors and patients wanting to explain persistent symptoms after fibroids treatment is to explore whether the two symptoms above are present as this could mean the patient has endometriosis. If we can pinpoint these patients early then steps can be taken to alleviate their symptoms and thus improve their quality of life.

More Information

For more information about endometriosis you can visit Endometriosis UK’s website and for more information about the link between fibroids and endometriosis you can check out the references below.

References

1. Huang J.  et al. (2010). Coexistence of endometriosis in women with symptomatic leiomyomas. Fertil Steril, Volume 94(2), p 720.
2. Nezhat C. et al. (2016). Strong Association Between Endometriosis and Symptomatic Leiomyomas. JSLS, Volume 20 (3).
3. Maclaran K., Agarwal N. and Odejinmi. (2014). Co-existence of uterine myomas and endometriosis in women undergoing myomectomy: risk factors and surgical implications. J Minim Invasive Gynecol, Volume 21 (6), p 1086.
4. Tanmahasamut P., Noothong S., Sanga–Areekul N., Silprasit K. and Dangrat C. (2014). Prevalence of endometriosis in women undergoing surgery for benign gynecologic diseases. J Med Assoc Thai, Volume 97 (2), p147.

Disclosure: this post contains an affiliate link

Many years ago before I even knew what endometriosis or fibroids were I knew the sudden stabbing pains I felt in my side weren’t right. My periods were often heavy and ‘clotty’ but I was too embarrassed to discuss it with anyone and so I suffered in silence.

Some years later I was living in England and when the pain recurred I went to see my GP who disappointed and shocked me with his response when I described my symptoms to him. My GP asked me whether I was planning to have children. I was 22 then and not ready. He replied, ‘well there are a lot of people who don’t have children’. I left the clinic stunned. I wasn’t very assertive then so didn’t answer him back.

Fortunately, I did have my son a couple of years later and all was well. I remember though that the pains would come and go but I just bore it. During a trip to Ghana, I woke up to stabbing pains in my right side again which had me doubled up in pain. When I got back home I saw my GP who referred me to a Consultant who happened to be the one to travel this journey with me. She sent me to carry out some tests which revealed I had endometriosis and fibroids. I was given tablets to help and the pain subsided. By then my son was 5/6 years old. At one of my check-ups my Consultant asked me whether I wanted any more children and advised me to do it ‘sooner rather than later’.

A year later, on Valentine’s Day, I went for another check-up, my Consultant was about to prescribe some more medication for me when I told her I might be pregnant. We did a test which was positive!

Whilst pregnant and after my daughter’s birth there were no symptoms and my doctor told me many women find the fibroids and endometriosis disappear during pregnancy.

Eight years ago I felt the pains and discomfort again. The same Consultant I had seen over 12 years earlier was still working at the hospital which I considered a blessing as she knew my history. She sent me off for a scan. I knew there was a problem when the lady carrying out the scan stopped joking and suddenly had a serious look on her face. I asked whether everything was alright, she told me my Consultant would be in touch.

I received an appointment. It was a different Consultant this time who asked me to have some blood tests done. I asked him whether I should have them done at my local hospital, he said no and that I had to have the blood tests done straight away!! As I walked to the department to have the tests done I opened the letter and saw the letter C scribbled amongst other medical jargon. I knew straight away I was being sent to test for some form of cancer. And I was on my own!

I got home and looked the medical term up on the internet which confirmed my fears, it was a test for cancer!

Another appointment came and my husband accompanied me. Thankfully it was my regular Consultant. She gave me the results and explained the scan showed a very large cyst on my right ovary which they thought could have been cancerous. The blood tests had however come back clear.

Ovarian Cyst

My Consultant went on to say she felt I needed to have a hysterectomy as soon as possible because I had a ‘diseased womb’. My husband and I were shocked and we tried to ask for other options. She told us that this time I didn’t have a choice and that on top of my problems with fibroids, endometriosis and the cyst on my ovary I also had an ‘enlarged womb’! Gosh, the list just gets bigger! She then booked an appointment whilst we were in her office for my surgery in 2 weeks’ time!

I had the surgery by this Consultant in September 2006 and thank God all was well. No cancer found. I however had to undergo a ‘total hysterectomy’ which meant losing my ovaries, womb, tubes and cervix. I guess the risk of cancer was great and she wanted to eliminate any possibility.

I cried for a while to think I had lost my ‘womanly bits’ but my husband sternly told me to be grateful to be well and alive. That shook me up and I started to take a positive approach. I had two healthy children, one of whom I didn’t think I would be able to have. I used to call her my ‘little miracle’.

After my surgery I had to go on HRT which I didn’t want to because it made me ‘feel old’. I soon went on it though when I had a sudden surge of heat through my body and quickly stuck my head in the freezer! My family watched me do this in amazement, confusion and amusement!

I have been on HRT patches for 8 years now and feel fine. I have put on a lot of weight but I’m not sure whether that has anything to do with the HRT or the lovely cakes people keep bringing in to work!!

Two months ago a friend mentioned HRT caused her to put on a lot of weight. She came off it and used another form of medication which is made from natural minerals. I have started using it too and have taken myself off the HRT. I have weighed myself and found I have lost a little weight. I need to cut out the cakes and do some walking and I will be back in shape.

I am thankful for my life and have learned it is good to talk, share our fears and experiences; you can learn from someone else and they can learn from you! Let’s be aware and educate ourselves.

Well done on setting up this website!

The Lake Foundation would like to say a big thank you to Naa for sharing her experience with fibroids and endometriosis, we hope that through her experience you have gained some insight into these conditions.

To learn more about fibroids download our booklet below  and for more information about endometriosis visit Endometriosis UK’s website

Disclosure: this post contains an affiliate link. Find out more here.