We are delighted to let you know that registration for our Fibroids Self-Care Webinar Series is now open! Our series starts on Saturday 27th October at 11am AST/4pm GMT with a session led by Le’Nise Brothers, a Registered Nutritional Therapist and the Founder of Eat Love Move.
Le’Nise will deliver a webinar on Fibroids, Diet and Hormones giving attendees the opportunity to learn about the role that hormones play in the development of fibroids and how simple changes to your diet may improve symptoms.
Discounted Early Bird Tickets Are Now Available
Early bird tickets for this webinar are now available and are just $10 (about £8) and you can book your tickets on Eventbrite
We’re also delighted to have formed a partnership with OH Services who will be launching their ‘Emotional Impact of Fibroids’ online course in November 2018. The first 10 people to register for our webinar on 27th October 2018 can claim a £5 discount on the cost of the OH Services course.
Other Webinars in this Series
Other webinars in the series will include:
Session 2: Deciding on the Best Treatment For You, Apryll Chase, Consultant Gynaecologist, 5th December 2018
Session 3: The Importance of Exercise, Relaxation and Me-Time, Candice Bryan, Founder and CEO, Noire Wellness, 23rd February 2019
Session 4: Hair and Body Care for Women With Fibroids, Rachael and Jocelyn, Founders of Afrocenchix, April 2019 (To be confirmed)
Session 5: Dealing with the Emotional Impact of Fibroids, Olivia Haltman, Founder, OH Services, June 2019
Session 6: Our Fibroids Stories – A Time to Share, August 2019
More Information
We hope that you’ll join us on 27th October for this really interesting online event and if you have any questions, please don’t hesitate to get in touch with us at events@lakehealthandwellbeing.com or visit our Eventbrite page
Disclosure: this post contains an affiliate link. Find out more here
In today’s blog we are delighted to hear from Angèle Mbarga the founder of Fibrome Info France. Angèle shares her personal experience with fibroids, explains why she started Fibrome Info France, talks a bit about the situation in France and discusses the excellent work her organisation is doing to support women with fibroids.
I had a surgery by laparotomy in 2010. In January 2011, when creating the association Fibrome Info France, I had no idea just how vast my job would be. The only thing I was sure of was the absolute need to have a place of healing dedicated to women suffering from uterine fibroids. This shelter will be their place where they would find a sympathetic ear and be able to share their own experience in a mutual aid environment. I had the vision of a modern sisterhood where every woman physically injured and hurt in her inner self, intimacy can henceforth stop and they would be able to talk openly, place a word on her pain without any judgement. My objective was to offer to women what had so badly missed in my time when I had to face fibroids for the very first time. Fibrome Info France is my plea a distress call of a woman wrecked by the violence of fibroids.
My fibroids were out of control, disabling and hemorrhagic. My symptoms were blood clots with throbbing pelvic pains sometimes. Untimely and chaotic bleedings were my sad daily reality. My life was completely turned upside down. I had no menstrual cycle reference anymore. I had no life anyway. Fibroids were killing me softly. Periods and unusual bleeding got mixed up and caught me in an endless, disturbing and distorted cycle in a completely crazy pace. I was in hell! At office, in meetings, when hanging out with friends, in restaurants, in my own car or in common transportation, anywhere. Always this inopportune and incessant flow of blood gushing from me! There were no sanitary pads that could help me out with stopping this. Fibroids gave me no place for neither private nor professional life. It was like holding a time bomb in my womb with the difference that I had no idea when the explosion would happen.
While recovering from my surgery at hospital, I made a promise to myself to help those women with fibroids issues. They should not face the lack of information about this disease anymore. They should not go through the fibroids complications alone either. Once this idea sprouted in my mind I put all resources and forces I had to make it happen as quickly as possible. And in January 2011, Fibrome Info France was born. Our association assists through our support groups, every year we help over 1500 women to overcome their profound distress caused by this disease. Uterine fibroma is a disease that affects the woman in the depths of her intimacy and in some cases affects fertility. Its development and complications vary from one woman to another. But a widely spread cliché makes one believe that fibroids are asymptomatic hence do not require any specific care. However, witnesses and S.O.S messages received by our association prove the need for information and support of women severely exposed to this disease which has a strong consequences and significant impacts on their intimacy, their professional and social life.
Uterine fibroma is the most frequent non-cancerous tumor that affects women in childbearing age. It represents also the first cause of uterus ablation in France, over 75000 every year. Physicians who are experienced in the care of this condition are of the opinion that African-Caribbean women develop fibroids at a younger age than the average and are prone to a higher rate of recurrence as well. The specific cases of young women who might likely relapse therefore exposed to repetitive surgeries raises the question of the preservation of the uterus and fertility. As the founder of Fibrome Info France, I assess on a daily basis women’s expectations with regards to this disease in order to have a good match with our actions towards them. The key challenge for our association is the information and awareness of women about the symptoms and complications of uterine fibroids in terms of basic prevention. We also provide tangible and lasting actions to improve the care of uterine fibroids and fight against its banalization.
In 2012, our first awareness video was released as well as our first information campaign. Both were financed by myself. In 2013, with the support of the then Ministry of Women’s Rights and the Regional Council of Ile-de-France, an informational leaflet was published. We also launched our second information campaign. In 2014, in partnership with doctors who support our action we developed and informative and supportive guide for patients and for the rest of the medical corps that are still underestimating the impacts of uterine fibroids as well. Around ten centres fully dedicated to diagnose and to the care of fibroids were opened in several hospitals in Paris and in other French provinces. All of our actions aim to respond to the need for information by women suffering from uterine fibroids and the imperative requirement to guide them on their therapeutic path. Our association will turn 7 on June 30! To celebrate our achievements and alert the public about fibroids’ impacts we will hold an open house day in our premises. We invite anyone who is keen on acting for women’s health and rights to come and join us in our fight to improve the care of uterine fibroids, for the preservation of the uterus and the fertility of women suffering from fibroids.
Angèle MBARGA
Founder
Fibrome Info France
We would like to thank Angèle Mbarga for sharing her inspirational story with us and applaud her for the fantastic work she has done in establishing Fibrome Info France and providing much-needed support to women in France who have been affected by fibroids. To find out more about Fibrome Info France you can visit their website or connect with them on social media.
In today’s blog post we hear from Silvia who shares her experience with fibroids and explains why she started her blog, Life With Fibroids.
Well, let’s start off with a little bit about me. My name is Silvia and I am married to an amazing man who is so supportive and have an adorable dog who from time to time drives me nuts, but that is okay because I adore him. I have fibroids and have been living with them for two years and have come to a place in my life where I want to share my story and my personal opinions and connect with others and learn about their stories as well.
I was diagnosed with Uterine Fibroids two years ago officially but have lived with them for just about 6 years now and since then I have done a lot of research but there is still so much more to do, so in no way am I saying I am an expert and I am not a doctor. I decided to start my website, Life with Fibroids, to create a space where women of all ages, creeds, backgrounds, religions, and parts of the world could come together and know that having fibroids does not mean that you are alone. Although fibroids is very common it is crazy to think that it is not a very talked about subject for most women and there is really no place to connect with others and ask how they are living with it and going through life with this. I was diagnosed with Uterine Fibroids two ago and they do affect my life they make me have the worst menstrual cycle of my life for example I have more bleeding and the first couple of days is so painful and the cramps sometimes can drop me to my knees. It hurts so much let me just say.
I guess, for me at least, that is the biggest inconvenience and it is so crazy to think that they can develop like they did for me because of the fact that your body can produce too much oestrogen and they can grow over time as well and can cause other problems like infertility if they block the Fallopian tubes and get in the way of implantation but to know that it is on a case by case situation and if you come to find out that you have them and are worried about that then I would definitely set up an appointment with your doctor and get your situation checked. I did and thankfully they are not going to stop me from getting pregnant but I think for the best option since they have gotten bigger is to get them removed before we try for a baby again since I have experienced a miscarriage due to fibroids and want to avoid any further complications due to fibroids, so that is another reason for me to write this post and try to reach out to those who are in the same situation and be an outstretched hand and let others know you are not alone and I am here for you. I guess I just want to help people share and get connected and help support each other because there are lots of stories like mine but there are also lots of stories that end up with a happy mommy and a happy baby, so like I said it is case by case and if I can help even one person then I think that writing this post and creating my blog, Life with Fibroids, is worth it.
Now let’s get a few things clear about fibroids first:
Fibroids are not cancerous and from what I have come to learn not life threatening, so you can take that stress off your mind right now.
What my doctor has come to teach me is that for every woman’s fibroids are different and can affect them in different ways and with fibroids especially the kind that I have which is Uterine Fibroids is always a case by case situation so in no way am I saying that I know everything about you and your situation so please feel free to write about your story and connect with others.
Fibroids can happen anywhere in the body but the most common fibroid I have come to read about is Uterine Fibroids which is what I have.
Even though many women have fibroids they can go their entire lives without knowing it due to having no symptoms and doctors not having any indication to look for them.
Women who do have them and do have active symptoms can have a variety and cannot have their daily lives affected in any way and then there is the other side of the coin where women have their everyday life come to a standstill and cannot function and then of course there is the middle ground where you have good and bad days but nothing too drastic, which for the most part is where I fall, well for the most part anyway.
My final point on this never-ending list is that for every woman with this diagnosis there is a story and it is different and each and everyone is valuable and important.
So with all that I have said again I just want to say that I created my blog, Life with Fibroids, as a place to connect and share your individual stories and remember that you are not alone and you are one of a kind and that you and I and everyone else living and not living with this is beautiful and amazing. Please feel free to visit my blog, share your stories and help me to connect with others from all over. Thanks for taking the time to read my post and even though I am not the most talented writer I want to share my story and hope that it can help at least one person out there. Thank you again for visiting and taking the time to read my post. At Life with Fibroids I do my best to keep everyone up to date on what is happening with me and my fibroids and try my best to keep it active and hopefully on-going. Have an awesome day and you rock!
Lake Health and Wellbeing would like to say a big thank you to Silvia for sharing her experience with fibroids, we hope that through her experience you have gained some useful insight into this condition. You can find out more about Silvia at Life With Fibroids
If you have any questions or comments please do leave these in the comments section below.
Disclosure: this post contains an affiliate link. Find out more here
I remember it like it was yesterday, I was 27 years old living in Washington, D.C. I kept feeling a sharp, somewhat dull ache in my pelvic area. I had never felt anything like it before. It would creep up on me suddenly and out of the blue. At times, it would trigger a sharp pain down my leg. At first I ignored it, as I thought it was just related to my monthly menstrual cycle. I always felt deeply connected to my body and prided myself on trusting my intuition. I decided, it was time for a visit to my doctor.
My doctor, always friendly, always efficient. She ran every test imaginable, we even repeated some twice. Some were painful, others were very routine. I had several smears done, in an attempt to make sure nothing suspicious was missed. After months of tests, exams and being prodded, I was told, “Nothing is wrong with you.” I was relieved but at the same time confused. Why didn’t the doctor know, why isn’t she fixing me, after all that is her job. Back then I obviously gave doctors a little too much power. I have come a long way, as this blog will soon describe. It didn’t end there, I saw another doctor, this time recommended by one of my mentors. She said, “Jo-Ann, he is the best. When I had my breast cancer, he took care of me and he is the reason why I survived.” I visited him and the results were the same. I returned to my old doctor and once again, she told me there is nothing wrong with me. She suggested over the counter painkillers and at one point intimated that I may depressed. This is when it dawned on me that I have something that they don’t understand. She said, “Yes, you have fibroids, but they do not cause pain. “You are fine,” she continued, “Your blood flow is fine and all looks good!”
I went home and started researching. I became obsessed, fascinated and even a little in love with my fibroids. I felt like I had to love them in order to understand them, otherwise I would have just been in a perpetual state of frustration. Weird but true, I really immersed myself into this world of uterine myomas, my uterus, my ovaries and widely speaking, my womb. You, see I did not fit the criteria for what doctors generally believe are problematic, therefore I was somewhat sidelined.
A year later at aged 28 I relocated to the UK. I was beginning a new era in my life. I was starting business school, transitioning and looking forward to a new chapter across the pond in Europe. The pain continued, life continued and nothing changed. I decided to visit my GP, perhaps she would tell me something different and she did! She told me I did indeed have fibroids, she mentioned there were many of them, some bigger than others and that based on their position, they were in fact causing pain and creating some discomfort. I felt relieved, she paid attention and asked me the right questions. She was very laid back, she spoke with ease and experience. At one point she suggested I relax and try to get to know more about my body. I heard what she said but I was not truly willing to pay attention. I wanted a quick fix, I needed relief. She explained that fibroids are normal but sometimes they can be a nuisance. She referred me to a gynaecological consultant, in short, in the summer of the year of my 29th birthday I had the fibroids removed via laparoscopic myomectomy. I initially felt the difference! I was lighter, the pain was gone and well, I was happy again.
I forgot about my fibroids until seven years later at aged 36, when I was participating in a duathlon and I felt it, that pain, the one that struck me almost ten years before. I knew exactly what it was and I was overwhelmed with grief and sadness. I visited my GP, this time a different lady, who was somewhat cold and unapologetic. She said, “Yes, you have fibroids but they are normal and you can live with them. I am sorry but we cannot do anything for you. I have women with bigger problems and I think you will be fine.” I went home and I cried, not only was she was lacking in empathy and slightly rude but she completely disregarded my experience. Other women had bigger problems than me, what does that even mean? Yes, of course, I do not have uterine cancer or endometriosis but does this make me less worthy of attention?
After wallowing in self pity for weeks, I decided to contact the lovely consultant who performed my laparoscopic surgery. Can you believe he died? Additionally, I read online that before he died he was involved in a malpractice lawsuit, after performing the same procedure on another woman, who unfortunately died. It is as if everything was against me. I sobbed some more. I was miserable for months.
Then one day, I was online and read about acupuncture. This is probably where I should state that I am a vegan, I have been so for 23 years now. I am very active, I exercise regularly-cycling, walking, hiking, I love being in nature, I tend to think I am positive, open minded and in touch with my body. This is what I thought, until I visited my acupuncturist for the first time. She was also a Chinese traditional doctor. With every visit I learned something new about traditional Chinese medicine, the teas, the pins she stuck in my body and the like. I was fascinated. I kept asking her, “Is this going to work?” She always smiled but never responded, until one day she said, “Everything will work, when you get to know your body.” Was that not what the really nice GP said too? She also said, “You work long hours, you don’t sleep well, despite being a vegan you drink too much coffee, you don’t breathe, you are like a machine, jumping from one thing to the next.” She added, “You are like a jumping rabbit.” She was right!
This time around I was ready to listen and so I did. I started studying my body, paying attention and tuning in. She taught me how to meditate, how to breathe, she told me to start doing yoga again ( I did it for a year when I was 25 and stopped). She also encouraged me to keep a period diary. I began reading books about my body, my womb and explored how my hormones affect all of me. This then introduced me to the concept of what it means to be feminine. For a long time I thought to be feminine is to a be a woman. Every woman is feminine right? Well, not really, every book I read touched on the pillars of femininity such as collaboration, empathy, patience and vulnerability. Everything I was NOT! And why? Because I was too busy letting life run over me. A mental shift began and I started making connections between my mind, my body- specifically my fibroids and hormones- and connecting to my inner me. I literally tapped into my inner self in a way I had never done before.
I believe that my fibroids were my body’s way of saying you are off, you are out of sync and you need to fix it. In a strange way I believe it was my body screaming for me to connect with my womanhood and all those things that make me uniquely me. Somehow along the way between the career and incessantly doing I lost all of those feminine qualities and it took years of pain, one laparoscopy, a very wise acupuncturist, several doctors and my willingness to surrender to my intuition to arrive at where I am now.
I turn 40 in two months, I still have the fibroids but there is no pain, they have not grown or shrunk and I have learned how to manage them. I also switched careers, started a business, relocated to a new country and have an understanding of my body that I never knew existed. It is quite unbelievable what can happen when one pays attention to all the signs around them.
I honestly believe that this experience was meant to enhance my quality of life. I no longer see my fibroids as these awful tumours lingering inside of me but as reminders of how I should live and what I should focus on. Every woman has a different fibroid story and albeit mine does not include heavy periods and endless bleeding, the mental and emotional burden was heavy. I think my connection to my inner self is one that I never knew existed and has transformed my mindset and life in unconventional and unremarkable ways.
I realise now that the quality of my life is not dependent upon what I do, or how I do it but how deeply connected I am to my body. For a very long time, I thought I knew who I was because I ticked all the boxes. What a revelation, I actually didn’t. If you were like me, looking for relief the first step, does not begin with that doctor’s appointment and it does not end with a yoga class. Instead it begins with you. Like I was told more than once, “Get to know your body.” And I will add, get to know you! An exploration of self is the beginning to a curing of the mind, body and spirit!
Lake Health and Wellbeing would like to say a big thank you to Jo-Ann for sharing her experience with fibroids, we hope that through her experience you have gained some useful insight into this condition.
If you have any questions or comments please do leave these in the comments section below.
Disclosure: this post contains an affiliate link. Find out more 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
Huang J. et al. (2010). Coexistence of endometriosis in women with symptomatic leiomyomas. Fertil Steril, Volume 94(2), p 720.
Nezhat C. et al. (2016). Strong Association Between Endometriosis and Symptomatic Leiomyomas. JSLS, Volume 20 (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.
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.
On 14th March, we hosted a fibroids Twitter chat with the Fibroid Forum UK. We had a great time discussing the work of The Forum, how they’re supporting women who have been affected by fibroids and explored some of the challenges women with fibroids encounter.
You can read some of the highlights from this really interesting chat below and if you have any questions for the Fibroid Forum, please do send them an email or drop by their next support group session (all the details are in the chat below).
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Today we’ll be chatting to, @FibroidForumUK, and exploring all the great work they’ve been doing to support women who have been affected by #fibroids. (2/4)
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Now, it’s my pleasure to introduce our guests @FibroidForumUK.
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Hello everyone, it’s great to be a part of this chat. Fibroid Forum UK was set up in 2015 by a group of women who have suffered with fibroids. #FibroidsChat
We started Fibroid Forum UK to raise awareness of the condition, provide support for women with fibroids and empower them to make informed choices about treatment. #FibroidsChat
There were good and bad things about our collective experiences but we all felt that there was generally a lack of information about fibroids and about choices for treatment options. #FibroidsChat
.@FibroidForumUK Having probably interacted with many women affected by #fibroids since you started, what has been the most interesting and also the most surprising thing that you’ve learnt about fibroids since delving into this area?
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
We’ve learnt a lot! One example is that the location of the fibroid can be more important than the size, particularly when thinking about treatment options. #FibroidsChat
We were also surprised to hear just how long women wait before seeking help. We seem to find coping mechanisms before reaching out and this doesn’t help. #FibroidsChat
I did this myself – when I was very tired over a period of time I put this down to lifestyle and thought I needed to slow down. We really want women to identify the symptoms early on and seek help. #FibroidsChat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Yes, that’s important. We held events in 2016 and 2017. There were presentations from consultant radiologists, obstetricians and gynaecologists. There was also a forum for women to share their experiences. #FibroidsChat
There was also an issue of doctors not realising that fibroids could be a cause of the symptoms when some women visited and explained what was happening in terms of heavy bleeding, fatigue, etc. #FibroidsChat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Absolutely l am totally there for doing some via social media and group chats it’s up to us to raise the profile of Fibroid suffers. I am really passionate about it because l am still suffering after surgery 10 years of fighting it. #fibroids#BlackTwitter
Yes, some doctors seem to know more about fibroids than others. We would like to see a universal standard of information included as part of their training. #FibroidsChat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Yes, the women raised similar issues about lack of information but also about feeling quite lonely as they went through their experiences. #FibroidsChat
This is part of the reason why we set up the support group so women can share and be encouraged by others who have been through similar experiences. #FibroidsChat
We’ve heard from a lot of women how their social lives were impacted, particularly if they were bleeding heavily. They just stayed at home, and sometimes had to take time off work. #FibroidsChat
This is part of the reason why we set up the support group so women can share and be encouraged by others who have been through similar experiences. #FibroidsChat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Yes, we run a quarterly support group for women. Our next one is on Monday 26 March at 6.30pm at St Thomas Hospital in London. Everyone is welcome. #FibroidsChat
What do you think needs to be done (by the NHS and by organisations like yourself) to address these challenges? @FibroidForumUK#fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Organisations like ours need to do as much as possible to raise awareness of this issue among women. As individual women, we need to share our stories and also give leaflets on fibroids to our doctors. #FibroidsChat
The NHS can follow the guidelines that are already in place about giving women leaflets on fibroids when they come to appointments, and others. #FibroidsChat
What other events, support and work have you undertaken and what are your plans for the future? @FibroidForumUK#fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Our future plans are to host more events and see more support groups started across the country. We will continue to raise awareness where we can with those who are involved in treating women with fibroids. #FibroidsChat
Hi @CAREAbtFibroids, if you’ve been following our discussion, I was just wondering if you see some of the same issues over there in the US – women with fibroids feeling lonely, lack of information, doctors not recognising symptoms.
Where can women find out more about these services and the work that you’re doing on fibroids? And if people want to support your organisation how best can they do that? @FibroidForumUK#fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
They can join our Facebook group. They can also email us fibroidforum@outlook.com. We will have more information about how people can support us in the near future. #FibroidsChat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Generally, it’s important that we take care of ourselves – that includes our physical, emotional and mental well-being. It’s important to seek appropriate medical advice as all of us are different. #FibroidsChat
Well, we have come to the end of our #FibroidsChat. A big thank you to @fibroidforumUK for joining us. It has been really nice speaking to you and learning more about the work of your organisation. It’s great what you’ve been doing and we wish you all the best #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
What a great chat we had with @FibroidForumUK. They provided some really useful insight into some of the challenges that women with #fibroids face and how they’re addressing some of these issues.#fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
If you’re based in London and have been affected by #fibroids, check out their support group on 26th March at 6.30pm at St Thomas Hospital in London. Everyone is welcome. #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
We are so happy to announce the publication of our new fact sheet on fibroids and exercise. This is the first in our new series of fibroids fact sheets which aim to cover a range of topics that you have told us are important to you.
This fact sheet series is a direct result of the findings of our small research project where we explored the needs of women with fibroids. From this work we discovered that there were significant gaps in the information and support available to women and we are on a mission to fill those gaps. We have worked towards this by:
Our fibroids and exercise fact sheet discusses how exercise can help alleviate the symptoms of fibroids and provides readers with simple tips on how to get active without aggravating their current symptoms. We hope that this resource will provide women with useful information that empowers them to take control of their health and take positive steps towards improving their health and wellbeing. You can download the fact sheet in the download section below.
Coming soon….
The next fact sheet in the series will be published soon and this will focus on fibroids and mental wellbeing. This fact sheet will aim to help women identify, understand and address the emotions that may be associated with having fibroids.
We are so happy to announce that we’ve joined forces with Noire Wellness to launch a fibroids campaign today, in the run-up to International Women’s Day on 8th March.
The theme for International Women’s Day this year is #PressForProgress and, together with Noire Wellness, we are calling for everyone to #PressForProgress to improve the experience of women with fibroids.
We believe that for progress to be made, there needs to be:
Breakthrough research into fibroids and ethnicity
Patient insight on the impact of diet and exercise on fibroids
A commitment to professional excellence when caring for women with fibroids, who have a family history of fibroids or who have symptoms associated with fibroids
Global and local support networks to ensure that women with fibroids never feel isolated
Greater awareness of fibroids, its symptoms and impact on women’s lives, particularly the psycho-social impact.
We want all women, particularly women who have been affected by fibroids, to join us in our social media campaign to highlight the change that needs to occur to improve the experience, care, health and wellbeing of women with fibroids.
We’ve created a range of resources you can use to join us in this campaign. These include images for social media, Facebook and Twitter headers, sample social media posts and a media kit. For more information and to download our resources, please visit our campaign page here.
The Power of Partnership Working
We are extremely proud of this collaboration which has brought together two organisations passionate about addressing the issues that women with fibroids face. We believe we are stronger together and can achieve so much more by pooling our resources, expertise and strengths. We hope that this will be the start of many joint health initiatives.
More Information
For more information about this campaign, please visit the campaign page here or send us an email, we’d be very happy to hear from you.
On 21st February we were delighted to host another fibroids Twitter chat. Our featured guest was Laterria Patton.
Laterria Patton is a Self Care Activist who writes a food blog that promotes reproductive health to black women. The blog content utilizes natural self-healing food practices to educate black women who are suffering with reproductive health problems about the hormonal process, and how to keep it in balance.
During our chat we had an interesting discussion with Laterria about the common challenges that contribute to uterine disorders (like fibroids), how these challenges can be overcome and how women can achieve optimal uterine health through self-healing food practices.
If you missed our Twitter chat, have no fear, you can read the highlights below.
Hey, hello, hello, Twitter family, it’s our my pleasure to welcome you to another one of our #fibroids#Twitter chats. #FibroidsChat (1/4)
Today we’ll be chatting to, Self-Care Activist, @selfcareandfood, about some of the factors that lead to uterine (womb) disorders, like #fibroids, how these can be addressed and how women can achieve good womb health through self-healing food practices. #FibroidsChat (2/4)
Hello! My name is Laterria Patton.
I’m a Self Care Activist that promotes social change that is centered around the self care practices of black women. One of the ways that I do this work is by writing a food blog that promotes reproductive health to black women. #FibroidsChat
1/2 I started this blog because I wanted to create content that breaks down the different ways in which food is impacting our hormones and how these hormones are having a negative or positive effect on the health of our reproductive organs.
2/2 I use natural self-healing food practices to teach black women who are suffering with reproductive health issues about their hormonal processes and how to keep them in balance.
The most surprising thing that I learned since delving in this area is that many obstacles are strategically being put into place that make it hard for black women to get access to the information & food that could help them with their reproductive health issues. #FibroidsChat
We’ll come back to some of these. We should start at the beginning, your work centres on understanding the link between the liver & the uterus. Can you tell us how the health of a woman’s liver affects the health of her uterus, and how this could lead to disorders like fibroids?
1/4 The health of a women’s uterus is affected by the health of her liver because the liver produces the cells that help to create neurons in the brain. These same neurons use cells to send messages from the brain to the uterus.#FibroidsChat
2/4 These messages control the rhythm in which the uterine muscles contract & relax so that the uterus knows when to shed the lining(menstrual bleeding) & when not to. An unhealthy liver has a negative effect on the neuron’s ability to communicate messages. #FibroidsChat
3/4 When uterus begins to shed it’s menstrual lining at the wrong time or it doesn’t shed as much as it’s suppose to, the excess lining that stays in the uterus contains hormones that never got a chance to leave the body. #FibroidsChat
4/4 Too many hormones can cause the uterus to make abnormal cells that contain excessive amounts of estrogen and progesterone. Abnormal cells lead to various disorders within the uterus. #FibroidsChat
.@selfcareandfood You write a lot about healing through food. So, let’s explore food a bit, how does the food we eat affect the health of our liver and thus the uterus? #fibroidschat
2/2 When the liver is not being nourished with nutrients, it can not make the cells that communicate with the neurons that are controlling the functions of the uterus.#FibroidsChat
1/3 One way that we can improve our reproductive health is by minimize the amount of grains that we are consuming. Many people who want to eat healthier tend to fill their plates up with grains. Grains are healthy BUT overconsuming grains can be counterproductive because:
2/3
1) Most commercially produced products like bread, still contain the anti-nutrients that prevent us from absorbing the nutrients in grains.
2) Eating large amounts of grains daily can cause the pancreas to produce too much of a hormone called insulin.#FibroidsChat
3/3 3) Some grains like wheat are processed. When your liver gets too busy breaking down processed foods, it doesn’t have time to metabolize your hormones, which causes excessive amounts of hormones to be thrown your bloodstream. #FibroidsChat
Absolutely. Small portions are fine. If you eat bread, try making you own at home so that you can ferment the grain so that the anti-nutrients are ineffective. #FibroidsChat
1/2 The foods that are the most beneficial to our uterine health are all types of whole foods. Eating a variety of whole foods regularly improves the bioavailbility of the liver because the liver requires some nutrients to be paired in order to improve absorption. #FibroidsChat
2/2 For example, black pepper improves the absorption of turmeric. Plus, the liver has the ability to heal it’s with the help of various nutrients. Healing the liver can improve upon the health of the uterus. #FibroidsChat
1/2 I would advise anyone who is already suffering with fibroids to minimize processed foods, drink less caffeine, eliminate alcohol and opt for natural healing remedies instead medication(if possible) for 3 months. #FibroidsChat
2/2 This gives the liver the time that it needs to create new cells that can repair tissue damage or congestion in the liver. This can help to heal minor uterine issues, minimize symptoms or prevent new uterine issues from reoccurring after a uterine surgery #FibroidsChat
The most common concern that I hear about reproductive health is “Should I try to heal an reproductive ailment naturally or with surgery?” I think it depends on the severity of the problem. You need to see a physician to know exactly how minor/urgent the problem is #FibroidsChat
1/2 #FibroidsChat One of the BEST things that anyone can do outside of eating healthy food to promote their uterine health is to start gardening. Start growing small plants in doors until you feel more confident into growing your own TOXIC-FREE produce.
2/2
1) Plants will eliminate toxins in your house.
2) There are establishments that are paying for you NOT to have access to foods that keep you from filling up pharmaceutical companies pockets.
3) It will save you $ on produce because organic food is beyond high😂 #FibroidsChat
If you’re looking for natural self-healing food practices that will help you balance your hormones in order to promote a healthy reproductive system, check out my blog>> https://t.co/RL0VFVdLyj
On many occasions women with fibroids have asked us to recommend a good, experienced doctor who specialises in fibroids. We tend to point them in the direction of the two doctors on our Ask the Expert panel, Dr Nigel Hacking and Mr Adrian Lower.
Because we get this question a lot we started looking into whether we can put together a resource of highly recommended doctors and consultants in the UK who have expertise in fibroids. Whilst doing this we came across an article on the Mail Online which we thought would be a good start and be useful to our readers.
The Mail Online spoke to 40 leading gynaecologists and interventional radiologists in the UK and asked them: “If your own nearest and dearest were to need fibroid treatment, to whom would you refer them and why?”
Based on the answers provided the Mail Online put together their top ten fibroids experts cautioning that this is a guide, not a scientific study and there are many more highly-skilled consultants throughout the UK. Their list is below.
Please note this was put together in 2011 and we’ve therefore updated some job titles.
Mail Online’s Top Ten Fibroids Experts (UK)
Mr Ertan Saridogan, Consultant Gynaecologist, University College Hospital, London
What the Mail Online said:
“Has huge expertise with fibroids and is probably the best in the country for keyhole myomectomy. He’s a delicate surgeon who is kind and has great empathy for his patients. As a fertility expert, he takes exquisite care with nearby structures such as the fallopian tubes, so his patients will have the best possible chance of a successful pregnancy.”
Professor Anna-Maria Belli, Consultant Radiologist, St George’s Hospital, London
What the Mail Online said:
“Has pushed hard to get embolisation accepted. Technically she’s superb and she’s warm too. Patients love her — she cares about them, takes their views on board and will do all she can to ensure they get the best possible treatment.”
Professor Issac Manyonda, Consultant Gynaecologist, St George’s Hospital, London
What the Mail Online said:
“A fine gynaecologist and an international figure who has distinguished himself in the field of open myomectomy for large fibroids, and is one of the lead investigators in a new major trial comparing myomectomy with embolisation. He has treated huge numbers of patients, which he has followed up over many years with excellent results. Uteruses after his treatment are beautifully neat!”
Mr Alfred Cutner, Consultant Gynaecologist, University College Hospital, London
“A highly-skilled laparoscopic gynaecologist, who would be an excellent choice for fibroids. He’s a warm person who’d do his best to tailor the right treatment for each patient.”
Dr Paul Crowe, Consultant Interventional Radiologist, Birmingham Fibroid Clinic
What the Mail Online said:
“An excellent operator who set up the service in the West Midlands and does a huge number of fibroid operations that have yielded first-class results. With Paul Crowe, it’s not just about technical excellence — he is also patient- centred and manages to make them feel they are in the driver’s seat at all times.”
Mr Adrian Lower, Consultant Gynaecologist and Minimal Access Surgeon, Consulting Rooms, London
What the Mail Online said:
“Sometimes he is described as the king of fibroids. He doesn’t work in the NHS, but does everything excellently. His background is in fertility problems and he will remove even large fibroids superbly by keyhole surgery, so his patients will have an excellent chance of pregnancy. He also has a very good bedside manner.”
Dr Anthony Nicholson, Consultant Radiologist, Leeds General Infirmary
What the Mail Online said:
“One of the leaders in interventional radiology, he is charismatic and popular with patients. He can be counted on to give unbiased advice. He works closely with gynaecologists and will always refer patients to them if he thinks the patient will benefit.”
Dr Woodruff Walker, Consultant Diagnostic and Interventional radiologist, Royal Surrey County Hospital, Guildford
What the Mail Online said:
“He is undoubtedly one of the pioneers of uterine artery embolisation and has blazed a trail in this country. An acknowledged expert who has done more fibroid embolisation than anyone else, he has achieved outstanding results. Extremely personable, and patients have complete and well-deserved faith in what he does. He won’t push anyone into anything.”
Dr Nigel Hacking, Consultant Radiologist, Southampton General Hospital
What the Mail Online said:
“Approachable and has done a lot of work extending the availability of interventional radiology both here and abroad. Highly-skilled with the manual dexterity and hand-eye coordination needed. He knows when to embolise and when he’s done enough. This is vital because you want to starve the fibroid of its blood supply, but not damage the supply to nearby structures.”
Mr Adam Magos, Consultant Gynaecologist, Royal Free Hospital, London
What the Mail Online said:
“He has been in the forefront of developing hysteroscopic myomectomy (where the fibroid is removed via the cervix, using a hysteroscope, a narrow, telescopic camera with instruments attached — there are no abdominal cuts). He also collects and appraises his own results and presents these to peers at meetings, and is a keen researcher. This is the sign of a quality surgeon who is interested in what he’s doing and is open to new ideas.”
The Mail Online also noted these highly recommended experts who didn’t make the top ten:
Mr Andrew Kent, Consultant Gynaecologist and Minimal Access Surgeon, Royal Surrey County Hospital, Guildford
What the Mail Online Said:
“Technically a superb keyhole surgeon in a very high-profile centre, who operates beautifully. Fibroid patients would be in very safe hands with him.”
Professor Lesley Regan, Clinical Professor, St. Mary’s Hospital, London
What the Mail Online said:
“A top gynaecologist with a great interest in fibroids who would do her best for her patients without forcing her views on them. She would put all the options to each patient fairly and then help them to decide.”
Professor Jonathan Moss, Professor of Interventional Radiology, Gartnavel General Hospital, Glasgow
What the Mail Online said:
“An enormously dedicated and highly skilled radiologist of the highest order and with the right mindset — which is that all options should be on the table for all women who are needing fibroids treatment.”
Mr Yacoub Khalaf, Consultant Gynaecologist, Guy’s Hospital, London
What the Mail Online said:
“Has a big fertility practice and will operate on large fibroids by open surgery, taking meticulous care. A well-rounded gynaecologist who is totally dedicated to his patients.”
Professor Tony Watkinson, Consultant Radiologist, Royal Devon & Exeter Hospital
What the Mail Online said:
“Lovely with patients and gives them choices. He will explain what he knows about fibroids and the alternatives, too. If they then decide on embolisation, he will look after them very well.”
Mr George Pandis, Consultant Obstetrician and Gynaecologist, University College Hospital, London
What the Mail Online said:
“Being a very good gynaecologist is about much more than how good you are with a scalpel and telescope. It is also about how kind you are and how good you are if things happen to go wrong. He ticks all of these boxes, taking excellent care of his patients.”
We hope you’ve found the above list helpful and we thank the Mail Online for compiling this list. You can read their original article here
