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

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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. 

Facebook: https://www.facebook.com/Fibrome-Info-France-233050816814726/

Twitter: https://twitter.com/fibromeinfofr 

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

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:

1. 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.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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!

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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!

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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

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.

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!

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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.

Lifestyle, this word brings thought to mind of daily tasks, particularly professional and pastimes, hobbies, activities or lack of them. As a former Cabin Crew member the work had a strong influence and was my lifestyle. I was a long haul stewardess, which entailed trips to far distance lands for a few days at a time or a week. My whole life activities were based on where I was going and for how long. I had wonderful opportunities for sight seeing, exploration, shopping or relaxation.  At times though, my peers and I weren’t motivated to go out or it was mundane to re-visit some locations. It became standard to stay in the hotel and meet for a drink or two with my peers. I had to keep myself motivated to use the gym and spa facilities, which were the perks of lodging in five star hotels. My health had deteriorated as A Fly Girl and prior to leaving the job I had a surgical removal of a uterine fibroid.

I had uterine fibroids since I was in my early twenties, prior to working in the airline, and have no history of fibroids in the family. I was also raised on a diet which was balanced and healthy; minimal dairy and red meat. During my twenties my lifestyle had changed and when I reflect back to this I can pick out the decline in a totally healthy lifestyle, it was not drastic however it may have been significant to the cause.

Some key points that I should mention are that in my twenties, and since childhood, I craved sugar and water was not a friend of mine. Until recently I admit water isn’t medicine, but in my twenties instead of water I increased my daily dinner red wine with red meat.

During my youth my menstruation was a curse on my well-being. It came with severe dysmenorrhea, nausea and occasional vomiting. No matter what pain killing medication the doctor prescribed, nothing worked, my stomach looked enlarged on my small and athletic frame. The appearance was a minor, the pain was major.

Although my fibroid was present before being a cabin crew member, my new lifestyle fed the fibroids, my symptoms worsened and my distended stomach gave me the appearance of a second trimester pregnancy.

In my memoir, A Fly Girl, there are many incidences in my tales that reflect on the toxic lifestyle.

Just before leaving the airline I had a myomectomy, the surgical removal of fibroid through an intense operation. It was intense compared to today’s procedure as I had an incision whereas technology now uses laser surgery. It was done privately as I had waited for this operation since my initial diagnosis on the NHS for several years.

I was driven to have the operation because of various new symptoms which accompanied my period; the abdomen swelling was severe and I suffered with menorrhea, the haemorrhaging  would leave me extremely weak and anaemic. I felt quite emotional after surgery however I recovered well and speedily. I became fully conscious from then as to what triggers fibroid growth from a holistic perspective, nutrition, spiritual and physical.

I began to write poetry as a means of self- expression, my diet improved and water became my friend again. I eliminated a lot of foods and it was a turning point in building self-esteem and self-expression. Spiritually I was more expressive as the true me, and being a writer has aided this. I engaged in a lot more exercise, road running, and for a year I was training in Thai boxing to release anger, energy and develop mental strength and finally relaxation in the spa with sauna and steam to eliminate further toxins. I started to enjoy being a creative cook so that my dinners where healthy and whole.

The complete change, spiritual, nutritional and physical was agreeing with me and my body was in balance with no extraordinary monthly pain. Over the years and I started to slip, unconsciously, old habits die-hard and gradually unsavoury patterns took hold. Many years later the fibroid growth returned with vengeance, it came with not just swelling of the abdomen but when menstruating many parts of my body would swell including my face and eyelids. I also experienced restless leg syndrome. I was haemorrhaging and clotting heavily and it had an affect on my work life, I couldn’t commit my presence at work, neither guarantee attending social events and I was fully exhausted because of anaemia. It got to the point where I was emotionally drained and hit rock bottom. I had tried again over the last few years several remedies of natural treatments and some therapies had adverse affects. However determined not to give up, neither to go back to the medical approach, I had a vision that the pain at least should be over and started a six month change programme this year.

I worked on the spiritual and nutritional aspect alone, and I am currently getting back into the physical component. It was a worthy sacrifice to officially eliminate specific foods in my diet for the last six months and gradually experiment with herbs that balance the hormones and strengthen the womb. It has been the best introduction to well being adding herbal remedies to a wholesome diet. Also the spiritual freedom of expression this year has given me joy as I spoke from the heart being part of a national book tour. Having a 90% reduction of symptoms that over the years have accompanied my menstruation and now have disappeared is an amazing testimony, it verifies that there are options for healing in this earth, one must have resilience to overcome and to know that healing isn’t a linear progression.

I am thankful for my diverse experiences in life and I can say that having the fibroid has been a catalyst for my behaviour change. To focus on holistic health can be one of the most self-loving expressions a human can do.

I will update my progress in another six months with the inclusion of physical activity, and this can be found on my blog at www.msroseblossom.org

My experience in treating and healing fibroids or to prevent the onset of them begins with living a spiritual fulfilled life, and includes ways to balance health holistically, along with help from experts and support networks.

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Amanda Epe is a health promotion coach and author.

The Lake Foundation would like to thank Amanda for helping us raise awareness of fibroids and its challenges by sharing her story through this blog piece.