Janelle’s Story

Shared October 22, 2016

Hi my name is Janelle Mellowes. I’m 27, I’m a bajan and I have endometriosis. I had my first surgery on 20th August 2009 on the island of Nevis. I was very nervous but I asked God to remove all my fears and that he did. The surgery was successful. The surgeon, Dr. Bardales-Essien (from Peru) that performed the laparotomy said inside of me was a mess, that the fallopian tubes were blocked, there were a lot of lesions and a few cysts.

Then she said, “mama, you have endometriosis.” She explained that this is what had caused my very painful periods. My period first started at the age of 8 but the pain only started at age 11. My teenage years were the absolute worst. I vomited a lot and the unbearable pain just riddled my body. I was completely useless the first 2 days. I couldn’t eat or drink anything, otherwise it would all just come back up. At one point in time I used to go to the hospital once a month on drips but that never stopped the pain, all it did was to cause me to sleep longer so I wouldn’t feel the pain. My periods have ruined my clothes as well as my day to day activities. I even did my P.O.B CXC in the sick bay because of said period.

There were times I felt depressed and wanted to question God, why is this happening to me. Somehow I had convinced myself that because God knew I wanted children, he was preparing me for morning sickness and labour pains. Few of the doctors here told me I was just having bad periods but it was Dr. Jagaroo who realized it had to be more than that. However, before she could diagnose me I had already moved to St. Kitts. After my surgery in Nevis I was taking Zoladex for 6 months but when my period returned it was just as bad as before. I did as much reading as I could about endometriosis. On 3rd November 2014 I had my 2nd surgery, a laparoscopy, at QEH to remove more cysts and lesions. I was also prescribed Norcolut, a man made form of progesterone, to stop my periods. The progesterone tricks my body into thinking it’s preparing for a baby. While on the medication, I’ve gained weight and I still PMS but on a smaller scale. In all of this I have been sentenced to a low ovarian reserve because the cysts that were removed were on my ovaries.

I had my egg count checked at the Barbados Fertility Center and was told the average person my age has 5 nano ml, mine is 0.63 nano ml. When I was told this, tears just flowed from my eyes, my heart felt heavy. It was also suggested that I try to get pregnant soon or freeze my eggs but if I want to get pregnant the ICSI procedure would be best suited. As much as I love and want children, I never thought I would have to plan having them this way.Endometriosis did this to me. Having endometriosis has caused me to have a renewed trust in God, to have unexplainable emotions and it has caused me to be more understanding, caring and empathizing. Through a few posts about endometriosis I met Julia Mandeville. I felt so relieved to meet someone here with the same illness, someone who would understand what I’m going through and I, her. Someone who can be called on for support at any given time. I finally didn’t feel alone. Through her I met a few others who also have endometriosis. I imagine this is how Columbus must have felt. These other women have also been added to the support system. My friends and family have been very supportive but it doesn’t compare to someone who is going through the same thing.

Having endometriosis doesn’t mean life comes to an end, I just means we do things a bit different, I may take us a little longer but we’ll get there.

Cassandra’s PCOS Story

10 years old- passed out and fell down the stairs at primary school a couple times. Extreme stomach cramps and embarrassing pool of blood was my introduction to “womanhood”.

Never thought anything was “wrong” with me, in the Caribbean, heavy periods ( backpain, headaches, heavy bleeding and mood swings/ real,real miserable) are an important part of growing up!

11-16 years old- this is where my love for over the counter drugs was born! Beralgin, panadol pm (my personal favourite), ibuprofen (I called them smarties), paracetamol… you name it, I had it!

One evening in question, I had an after school activity, I was fine. Suddenly, some pain come from out de blue! Man, I open three packs ( yes… i said 3 packs, therefore 6 tablets) Panadol pm, push couple tables together and went fast asleep until the unbearable pain was over. Luckily my best friend was accustomed to form of pain management and waited out the time with me.

3rd form – My mother was always concerned about how bad my periods were. The doctor gave me an ultrasound and said I had some cyst and they should go away eventually. He also wanted me to go on birth control but my mother refused because she had her own reservations.

UWI – Let’s just say, I was always bigger than everyone else in primary and secondary school. The weight really started to go up, probably gained between 100-150 pounds during UWI.
UWI was probably one of the darker times in my life. I was always a confident big girl but here is when I started to realise how out of control my hormones and weight gain was. Emotions would go from 0-100 real quick! Sucidal thoughts, emotional outburst! I also lost a lot of friends because I was just too much to deal with.

Working girl- My mother begged me to go to the doctor again. I say beg because at this point I thought doctors were useless. My pain was very real and they never took me seriously. Reluctantly, I went. The GP I went to, refered to me to a gynecologist. Had my first vaginal ultrasound and Dr. MAN was NOT gentle! After the 3 second examination he turns and says, ” You have PCOS, look all these black holes are the cyst!”

That was the end of the explanation. He gave me a prescription for metformin and I left! Google them answered my questions. A girl should never have to turn to google.

10 Questions with a Bajan Endowarrior: Heidi Bowen

We’re continuing to recognize Endometriosis Awareness Month 2019 in Barbados. We are aware they are several persons with this condition on island and so let’s get to know a few local endowarriors with our blog series: “Ten Questions with A Bajan Endo Warrior”.

Today, the 15th of March 2019, we continue our 10 Question Series with Heidi: wife, mother, daughter, friend, entrepreneur and a bajan endowarrior.

(Disclaimer: The discussion which follows is that of a personal experience and does not constitute provision of any medical or professional advice. The experience outlined in not indicative of a typical experience. If you have any questions about your health, always seek the advice of a medical or relevant professional.)

Q1. Who is Heidi? Describe her to us if you don’t mind.

My childhood was idyllic and happy, we travelled a lot and so I was able to experience various cultures and languages. Actually, when I think about it the only activity I was not involved in was Horseback Riding. Cause I was not about to be thrown offa any horse!

I tried everything other than that once and had several opportunities that made it impossible to be bored. I love reading mainly because my parents were voracious readers and made it so that I had to read several books a month apart from my required reading from school.

My family means everything to me. My immediate family has endured and enjoyed all of my trials and successes, that’s how we are, we share, a lot.
I have always been a bubbly, friendly, outgoing person so my friends from 11 years old are still my mainests. Meeting new people is also one of the reasons I have several Whatsapp contacts and social media friends, if I meet you and we click, we will be chatting. I am a very passionate person and I put my everything into any project I find value in.

My daughter Aniyah is my greatest source of motivation, it helps that she is a very spirited toddler and doesn’t let me rest on my laurels . Also, my husband Anderson is my second biggest motivator, he has seen me at my absolute lowest and has always been supportive. We met after my diagnosis and I told him I may not be the one since I was possibly incapable of making him a father, and he said he didn’t care, he loved and wanted me regardless so I knew homeboy was a keeper. He has done so much to keep us happy and well adjusted, and I am forever grateful to God that He brought us together.

Anderson & Heidi
Heidi is a foodie so selecting one favourite food is… problematic. I LOVE TASTY FOOD. One of our ventures Heidi’s House of Souse has morphed into HR’s Fridee Food and we are determined to bring back Fridee Night Limes. Good food, drinks and bomb convo on a Friday night after a long work week is what we guarantee. St. Philip is THE best parish on the island and we are experts on breezing and liming.

I am an island girl, the sea is my second home. If I have a headache, cold, flu, if I’m stressed about an issue or have any type of body pains or aches ( I should be in the sea Daily lol! ), the sea restores me.

The day before I gave birth I was determined to go to my favourite beach for one last dip since I knew after baby came my visits would be less. I made it to the sea. Waddled all the way in to the amusement of onlookers at 6:30 p.m. Dah water was freezing but worth it.

Q2. It seems like you are extremely charismatic and fun-loving! LOL. We know you are an Endo Warrior (hence the interview). Do you mind telling us when were you diagnosed with Endometriosis? Do you know the stage?

At the age of 18 I was diagnosed after a laparoscopy I believe it was categorized as stage 3.

Q3. That’s younger than most we’ve heard of. What were your initial thoughts/reactions when you heard about this condition?

My GP had told me to take Baralgin and exercise more. So as you can appreciate I was a mixed bag of emotions. On one hand I knew from the time my period started that something was wrong, so having a diagnosis was amazing. On the other hand my OBGYN who I consider my angel, and one of the reasons I am a mother today was very frank and let me know that infertility was a definite possibility, but assured me that they would do all they could to help me have a baby when I was ready.

The OBGYN told me and my mother, man appoints but God ordains and I trusted in that.

After my first surgery, when I was 18 I felt like my body had betrayed me, my ovaries were messed up and I always dreamed of being a mother, why would anybody want a woman who couldn’t provide a biological child. And who would want to live with a moody, cranky, ball of pain forever?

It is safe to say that I was upset, but I became very hopeful after surgery. One half of an ovary was removed as well as an 11cm cyst. When that kind of load is taken off you, you tend to move and think a little differently.

Positivity was within my reach and I wanted it, desperately. Twelve years later (and with my second laparoscopy under my belt) in January 2015, my husband and I said we wanted to try for a baby. The OBGYN advised us and kept it real but was determined to help us be parents.

And they did it .

The Bowens
Q4. That was a whirlwind of a journey. We’re happy you were able to conceive successfully! How has your family been supporting you on this journey?

I am in pain daily, I complain about it, I talk about it , I moan about it. I do not hide it. But I keep it moving, and this is because of my mother’s influence. Mummy had no clue during my teens that I had endometriosis, but she kept encouraging me to push past the pain. Every month Mummy forced me to get up and go to school, even if I had had a bad night with cold sweats, vomiting and even a fainting spell or two or three. My aunt, uncle and grandparents were also integral, with their remedies and prayers. My Dad was a little more difficult, he was old fashioned and thought that my pain was just a mental thing.

After my 1st surgery when my Dad understood that there was a real problem, he read all the literature on endo he could and made sure I attended every doctor’s appointment.

Anderson does not let me slack off. If he sees me eating foods that aren’t on my plan or if he realises that i’m not on my game he calls me out and we have a frank discussion.

He is also the one who gives me abdominal, foot and back massages as often as I want. He also makes me work when I’m having one of my painful episodes and just want to lie down in the dark. I need to be productive and not succumb to the pain otherwise depression sets in.

I am never not busy.

Q5. Okay, so the entire immediate family is on board! Great! Is there any other support mechanism out there that has helped you on your journey ?
God, My faith and church family. First Baptist Church big up yaself!!!

So many brothers and sisters prayed with me through recovery and conception, labour and delivery. Most if not all of them know about my struggle with endometriosis and they are sympathetic and know a bit about the condition.

In many ways, their faith bolstered mine at times when I was very emotional and low.

Q6. It’s wonderful you have such a large external support system. What else have you been doing to manage, specifically to maintain your health?

About 6 months ago I decided to change my eating habits and adopt a healthier approach. I eat fruit sometimes now which is weird but necessary. I have always been a veggie girl, and meat causes my endo to flare so I try to keep that minimal. Exercise is my nemesis, but I do try to do it a few times a week and I pray often and take a few minutes every day to nap, read or just breathe. A mental recharge helps me to control the pain and keep away depression.

Q7. As noted before, you started this journey, knowing and dealing with endo, quite early on. In your opinion, what do you think should be done in Barbados to better support women with Endometriosis and/or PCOS?

When I was in the corporate world my immediate supervisors didn’t understand when I explained my condition. Until I had a major flare up prior to my cycle. And then my cycle came and I had to be lifted to the sick bay.

We, the endo warriors have to speak up about our condition, educate people and inform them about the challenges we face and let them know that sometimes we need help. Perhaps some workplaces can offer a work from home initiative for their employees so that absenteeism would not be an issue. In the information age, a constant presence in the office is not always necessary. If that is not feasible, may I humbly suggest that the employers offer shorter work days or flexible entry.

If a lady has a predictable cycle, she may be able to go to work in the morning or evening after having a rest. There are means and ways, management just has to be open minded and the staff must be honest and fair.

Q8. What advice would you have for any young girl who may have painful periods?

Find a gynaecologist- FAST!

GPs are fantastic, and relevant however, a Gynie especially one who is seasoned and sympathetic will leave no stone unturned in trying to determine the cause of the pain.

Do not be afraid of the unknown, be afraid of experiencing that pain and worse for years instead of maybe weeks or months.

Reproductive health matters, but it begins with being proactive.

Q9. Thank you so much Heidi! We’re sure your story and message will help someone reading it. Now it’s your turn! Tell us about any of your current business ventures? Where do you see them in the next 5-10 years?
Moden Makeup is our three tier company we provide beauty education, makeup, hair and bridal services. Our blog is http://www.modenmakeup.com which is run by my sis Lucinda Robinson- an amazing source for all things Beauty in Barbados. Check it out!

Our salon should be up and running by 2021, we also have two side ventures, HRs Fridee Food, we joined the $1 & Loaded Fries families and EZ Deals, where we will be offering Stainless Steel Utensils in super cute packaging for adults & children.

That way if you go out to eat and prefer your own cutlery, it’s in your bag or backpack ready to go! (YAY- Sustainable Living!)

Q10. We’ve come to the end of the interview. One last thing. Can you give us a quote that you live your life by?

The benefits go with the burdens. I believe in balance, life is unstable without it, so when things are grey I comfort myself by saying Heidi girl, it won’t always be this way, hope springs eternal!

Are you or do you know any Bajan Endo Warriors who’d like to share more about their journey? Send us an email at endoassociationofbdos@gmail.com!

Ten Questions with A Bajan Endo Warrior- Anonymous Submission

For Endometriosis Awareness Month 2019 in Barbados, we’re going to get to know a few local endowarriors in Barbados with this blog series: “Ten Questions with A Bajan Endo Warrior”. Today, the 7th of March 2019, we will continue off our 10 Question Series with an anonymous submission: a daughter, friend, entrepreneur and a bajan endowarrior.

(Disclaimer: The discussion which follows is that of a personal experience and does not constitute provision of any medical advice. The experience outlined in not indicative of a typical experience. If you have any questions about your health, always seek the advice of a medical professional.)

Q1 . Tell us a little about you and your background:
Growing up as a child I was very adventurous and outgoing which was often met with punishment due to not listening to the commands of my mother-“not to go outside” or “not to go this or that place”. But my childhood was very good as I would have had what persons considered a young mother. In terms of what motivates me, I want to do good to help people who are less fortunate than me in every aspect. If I can’t help them directly then a simple referral to someone who can help is good enough for me. My motivation at this time in my life is to be self-actualized and be an educated person and successful and make myself as comfortable as possible and to give back and assist with change for the better wherever I am needed or can help. I think the persons who helped in sculpting my character were my teachers at school who first and foremost believed in me more than myself and also the few friends I have now continue to aid in my development. Generally, naturally I am a go-getter. If you tell me something can’t be done and I know it can be, I’ll show you how it is done. My favorite food is fish Alfredo or fried swordfish, pie and chips. The favorite dessert is the chocolate cake from Chefette (and I don’t eat any other chocolate cake except for that one). My favorite color is black and most the items I own are black including clothes. My favorite things to do are either bake or lie in my bed, watch movies on Netflix or my Firestick and eating food.

Q2. When were you diagnosed with endometriosis? Do you know the stage?
I was diagnosed with endometriosis in January of 2018 with stage four endometriosis after being suspected of having such a disorder by a gynaecologist that I was being followed up with. I was having an issue with heavy periods and severe pain where I would have to present to an after-hours service or even the hospital for care regarding losing so much blood and having so much pain. The pain I was having from the time I was 12 years old grew in severity each and every year. The only good thing is at that time and over the years I was only having a period every three months so that’s when the pain presented itself. This pain and heavy periods didn’t start yesterday, it began when I was around 12 or 13 years old and my mother would have taken me to see a doctor at that time who place me on microgynon birth control to help with the pain and heavy bleeding. That helped a bit but as I aged it became so severe that I use to crawl on the floor and clasped my hands around my stomach and scream to the top of my voice about the pain I was having. I had to be admitted to hospital on several occasions. I remembered the last time I was hospitalized I had to get a variety of strong anti-inflammatory and pain medications all intravenous infusions. The pain was not holding up but it then did so eventually. I also remember that during this hospitalization, instead of bleeding I was passing large clots and had to be medicated for that as well. I also can remember being in pain one time and had a heart rate of 170 and the nurse looked and said to the other nurse- “This pain she is in could have her heart rate all the way up here wow. This has me so shocked. “

Q3. What were your initial thoughts/reactions when you heard about this condition?
I remember I was scheduled for an ultrasound to see what was up with my ovaries as I was preparing to become a mother and wanted to find out what was going and also to see if the had the disorder that the physician suspected was laying on the table and having the ultrasound and one ovary was fine and you could have seen the eggs and so forth but the other ovary was totally occluded by what I know as an endometrioma or what is called a chocolate cyst. I literally burst out n tears on the table in front of the physician because I remember not wanting that to be my diagnosis as I know how debilitation it is and what effect it can pose on me becoming a mother. I want back to work that day and I was so sad and couldn’t believed it was actually happening to me because my mother doesn’t have it nor did she have issues with conceiving. That was the turning point in my life and it’s still turning.

Q 4. What role has your family played as it pertained to management and support?
My family is supportive especially my mother and I can often see the hurt in her eyes, and she sees my in such severe pain. She often has to bath me when my menses are on because I am in so much pain, I also have to miss work a lot due to this condition. But at every doctor visit and surgical intervention I have had my mom has been there and the rest of my family. My uncle as well he has been there always. I do have a good support system who understand what I am going through

Q5. Is there any other support mechanism out there that has helped you on your journey?
The other support system out there was the ENDO and PCOS movement where I met one of the members and we had dialogue on our condition and family and medication regimen that we were on. Speaking to her and knowing their was someone out there who was in the same pain as me and had the same condition was refreshing knowing I was not in the fight alone.

Q6. How does being in the health/medical profession affect your outlook on dealing with this condition?
Being in the medical profession has changed my outlook when it comes to this condition because I have definitely experience what it can do to you. Man is considered a bio-psychosocial being and from a biological aspect it has caused me great pain and a lot of changes to my body. From a psychological aspect it has caused me to be depressed and questioning a lot. From a social point of view, it has stopped me on many occasions from socializing and going to events. I remembered one time I went on a date and everything was going well and just out of the blue I had to double over in severe pain in the middle of the date and began to sweat. He took me to the gas station and bought me pain medication as well as something to eat and drink to take it with. That brings me to that point endometriosis doesn’t mean you only have pain during menses you can have pain all the time. I am in pain almost 12 hours a day on a daily basis.

Q7. What have you been doing maintain your health?
In terms if the maintenance of health this is very hard because of how I work and where I work. I have very long hours, but I try to eat as healthy as possible on a daily basis and try to drink as much water as possible. I will be incorporating some vitamins in my regime in a matter of weeks and also intend to lose some weight.

Q8. What do you think should be done in Barbados to better support women with Endometriosis and/or PCOS?
To better support women in Barbados who are living with this disorder, more support services should be offered as well as health services. Legislation should be drafted and health and employment policies implemented to assist the persons who have such a disease. Better management and recognition are needed for this disorder. I believe soon it will be grouped with the other NCDs that are currently plaguing the Barbadian population. Persons also need to be sensitized, educated and made aware of this disorder and health promotion should be steadfast in pushing trying to understand this disorder. Also, more research is needed in this area to show the impact of it on the productivity of humans whether in the workplace or even in reproduction and the impact it has on health and this should be primarily surrounding the Barbadian population. Nothing beats evidence based information.

Q9. What advice would you have for any young girl who may have painful periods?
I would advice any person out there who are having issues with heavy and painful periods to begin seeing their gynecologist as soon as possible. Even if you are underage tell your mother about your issues and encourage her to let you see a gynecologist. The earlier the intervention the better experience you maybe be able to have. I am currently on a drug called Lupron which has been great helping with the pain. Although it has a few side efforts the benefits outweigh those for me. The Barbados fertility center and their team has been instrumental with me being able to manage my endometriosis now. I went from continuous birth control now onto Lupron. When I have a child then I would have surgical intervention but not before.

Q10. Can you give us a quote that you live your life by?
There is no one particular quote that I live my life by, but I believe solely in being educated and putting GOD first and going after everything in life that people say that you could not have. I also believe in being able to reach the self-actualization level of the Maslow hierarchy of needs theoretical perspective. I attended one of the lower secondary schools but am a step away from a doctoral degree. Despite this pain I am a fighter and I am going to do everything in my power to make my future great and I am coming for everything they say I couldn’t get due to having this condition .

Are you or do you know any Bajan Endo Warriors who’d like to share more about their journey? Send us an email at endoassociationofbdos@gmail.com!

Ten Questions with A Bajan Endo Warrior- Krystle Carew

As we begin Endometriosis Awareness Month 2019 in Barbados, we’re going to get to know a few local endowarriors in Barbados with this blog series: “Ten Questions with A Bajan Endo Warrior”. Today, the 1st of March 2019, we will start off our 10 Question Series with Krystle: mother, partner, sister, daughter, friend, entrepreneur and a bajan endowarrior.

(Disclaimer: The discussion which follows is that of a personal experience and does not constitute provision of any medical advice. The experience outlined in not indicative of a typical experience. If you have any questions about your health, always seek the advice of a medical professional.)

Q1 . Tell us a little about Krystle, her history, her foundation:
A. Growing up I was really shy and kept to myself. I loved reading books or
spending time watching television with my brother. My family have always
motivated me and this has carried throughout the years. My mother and her mom (my grand- mother) sculpted my character, they raised me to be independent and to think outside the box. My favorite food has always been my grandmother’s sweet potato pie, which she taught me to make (although I’m still a huge fan of hers). My favorite colour is blue and I’ve always loved reading and cooking.

Q2. When were you diagnosed with endometriosis? Do you know the stage?
A. I was diagnosed with stage 4 endometriosis on November 16th 2007. It was a lot to take in at first since the endometriosis was just taking over my uterus, left ovary and pelvic wall.

Q3. You also have polycystic ovarian syndrome too right? When were you diagnosed with PCOS? What symptoms/signs did you have?
I was diagnosed with PCOS in June 2016 via ultra-sound, after suffering from a ruptured cyst. My PCOS didn’t show many symptoms, besides the polycystic ovaries, I only have little facial hair.

Q4. That’s a lot to take in and deal with, isn’t it? What were your initial thoughts/reactions when you heard about these conditions?
When anyone gets diagnosed with a disease the first thing you think of is that it’s life threatening, and my thoughts weren’t any different. I knew about ovarian cysts, as I had them from a teenager, but hearing the word endometriosis was very scary. I did my research and all I could think of after that was infertility and not being able to conceive naturally. When I was diagnosed with PCOS, I wasn’t too taken aback as I had heard about it before.

Q5. Ok, so we know you’re big on family- really big, lol. What role has your family played as it pertained to management and support?
My family is my life and I honestly don’t know what I would have done without them over the past 3 years. My mom and my son’s aunt would look after him when I’m down and in loads of pain. My grandmothers would both cook or make me oats. My boyfriend would, take me to all my appointments and during my stay in the hospital he was there by my side (not sleep over, but he was there at every visiting time).

Q6. That’s wonderful to have such strong family support. Is there any other support mechanism out there that has helped you on your journey?
Besides my family, my endometriosis sisters on Facebook and the ladies of
BAEP have helped me through my journey. Emotional support was necessary and the ladies made sure that they checked up on me, either social media or in person and I can’t thank them enough.

Q7. You had surgery within the last year to address your endometriosis. Do you mind sharing what your personal surgical experience was like?
My surgical experience was a rollercoaster to say the least. I was hospitalized once and been to two different doctors before I found my doctor of preference. He laid out everything for me; what type of surgery it’ll be, the proposed length of the surgery, the cost since I was going private and what I needed to do to prepare myself. The day of the surgery I was a little nervous, because I knew what they would find, but there was a possibility that I would lose an ovary. The surgery lasted 7 1⁄2 hours, 2 more hours than it was scheduled for. Coming out of surgery I was briefed. The left ovary was so badly affected it had to be taken out, the scar tissue and the adhesions were covering everything and fusing the ovaries together, the endometioma was as big as over 8cm and the right ovary had cysts that were removed. This was so much for me, I didn’t know how to process it, so I didn’t tell much people that I lost an ovary as I’m still processing. Because losing an ovary means that conception is more difficult. After a few weeks in recovery I caught an infection in my navel, but that was short lived
because I was better in a few days.

Q8. Wow. That was a lot, we appreciate you sharing that journey with us and understand the need to take time to process. What else have you been doing since the surgery to maintain your health?
Since the surgery, I’ve gone back to exercising regularly and eating healthy
foods. I started my 10-minute walk in my neighborhood, and then I increased it to a brisk walk and now 7 months later I’m back to jogging. I’ve also being detoxing at least once a month to help my body get back to its normal balance. I’ve even started the keto diet and between eating healthy and exercising I’m losing weight and feeling great.

Q9. Lovely! We’re happy you’re feeling great! So, what do you think should be done in Barbados to better support women with Endometriosis and/or PCOS? Not enough is being done to help charities like BAEP that offer support groups for women with both endometriosis and PCOS. But we need to start advocating more for these charities; host seminars, have more programs on CBC and articles in the newspaper to help raise awareness. When the women see that awareness is done it will give them the peace of mind that they need.

Q10. Hmm. Food for thought. Ok, what advice would you have for any young girl who may have painful periods?
My advice to any woman who is having painful periods is to get to a gynaecologist as soon as possible. Tell a friend, a family member (someone you trust) about the problems you are having and have them go with you to the doctor. You don’t have to suffer alone, there are support groups that can help.

Bonus! Thanks so much for your time. Finally, you have your business venture, The Craft Studio. Do you mind telling us more about it?
The Craft Studio was created because I saw the need for more variety of craft supplies in Barbados. Both my grandmothers are into craft and they would usually send overseas for supplies, this prompted the business idea.
In 5 to 10 years The Craft Store will have a store front and maybe a wholesale shop as well. We aim to meet the demand of schools, crafters, artists and hobbyist (The Craft Studio contact: +1 246-258-5241; email: thecraftstudio101@gmail.com )

Are you or do you know any Bajan Endo Warriors who’d like to share more about their journey? Send us an email at endoassociationofbdos@gmail.com!

Panel Discussion – Know Your Flow: Achieving a Healthy Menstrual Cycle & Overcoming Complications

On Wednesday, September 12, 2018, our interim member, Danielle Bain attended the abovementioned panel discussion hosted by the UWI HIV&AIDS Response Programme (UWIHARP). It was held at the University of the West Indies, Cave Hill Campus – Solution Centre and chaired by Monique Springer- Project Officer of the UWI HARP.

UWI HARP’s mission is “…to build and harness capacity within the university in order to contribute maximally to the national, regional and international effort to control the HIV epidemic and to mitigate the impact of HIV and AIDS on the university itself and the wider society”

This panel discussion allowed the UWI HARP to join in the conversation to further address other sexual and reproductive health issues such as menstruation and associated disorders. The following is a report provided by Danielle of the proceedings. Attendees of the session included:

Cave Hill Campus Medical Students
Cave Hill Campus Students
Cave Hill Campus Staff
Members of UWI HARP
Panelists, along with Danielle, included:

Dr Tania Whitby-Best – Medical Officer & Head of Department (Student Health Clinic). Dr Whitby-Best discussed the most common gynaecological complaints received at her clinic and the possible reasons behind them. She highlighted the importance of paying attention to your cycle and any discrepancies.
Dr Damian Best – Lecturer Obstetrics & Gynaecology (Faculty of Medical Sciences). Dr Best did a slideshow explaining the reasons behind periods and what a “normal” period looks like. He explained that normal has a range and what abnormal is. He showed the conditions such as Endometriosis, PCOS, and Adenomyosis. He also touched on Amenorrhea and how it can be related to those conditions. He explained why it is important not to celebrate the absence of menstruation and the devastating effect it can have on the body.
Mr Heru Holligan – Homeopath & Proprietor (Healing Earth Life Products). He spoke on the importance of diet and balance in life and explained how his clinic helps others to achieve that balance. He touched on homoeopathy and its importance to overall wellness. He reminded attendees of the presence of hormones in the food given to our food and the impact that they may have down the line. He spoke about his work with women afflicted with gynaecological conditions. He spoke on the dangers of the high sugar lives that students lead.
Danielle explained the devastating physical, emotional, and financial impact of conditions like Endometriosis, PCOS, and others. Gave personal story and touched on the experience of BAEP’s co-founder with endometriosis. She also mentioned the school outreach program which she is a part of. Whilst at the panel discussion, where provided a signup sheet for the WhatsApp group where information about joining the BAEP officially can be gained.
Afterwards, there was a question and answer segment and the following were some of the questions and responses:

Q – Is period blood actual blood?

A – It is a combination of blood and tissue (Dr. Best)

Q – Can sex trigger a period mid-cycle?

A – Any sudden change in your cycle should be addressed with a doctor since it could point to an underlying issue (Dr. Whitby-Best, Dr. Best).

Q – What foods have B vitamins naturally occurring?

A – It is best to eat as many raw fruits and vegetables as possible. A balanced diet can ensure that the body gets what it needs. Supplements are also a good bet. (Heru); There are supplements that you can get to help with vitamin B (Dr. Best).

Q – Which is better between the mini pill and the regular pill?

A – The pills are designed for different purposes. A person who has just given birth or who is particularly susceptible to clotting will not be given pills which are estrogen based. (Dr. Best)

From all reports, it was a very interactive and engaged session- and suggestions of more events like these with a longer time allotment ( if permitted) by hosted as there was a true benefit for those in attendance.

We are thankful to the UWI HARP for the initiative and invitation and to Danielle for her outstanding representation of the BAEP at this session.

Recap of Fibroids Chat with Lake Health and Wellbeing

Our Co-Founder, Public Health and Advocacy Manager, Julia was the guest on a twitter chat hosted by the  Lake Health and Wellbeing  our regional health collaborator in St. Kitts and Nevis. The #FibroidsChat was fun and interesting!  For a transcript of the chat, click the image below and get directed to the associated link.

Highlights from Our #FibroidsChat with Julia Mandeville, Co-Founder of BAEP

http://lakehealthandwellbeing.com/highlights-from-our-fibroidschat-with-julia-mandeville-co-founder-of-baep/embed/#?secret=NoBATnHfDI

Also note that they are hosting a Fibroids Self Care Seminar, starting from the 27th of October- follow the link here for more!

We wish to thank them for their support and their efforts to improve the health and well being of Caribbean residents.

PCOS AWARENESS POEM

Last year, our PCOS Cyster wrote this poem about her journey with the condition. As we prepare for PCOS awareness month, in September, we invite you to take a read!

It’s Polycystic Ovarian Syndrome Month – PCOS Awareness,
So Cysters will be educating and believe it will be Shameless!
So if menstruation and such processes make you queasy,
Then just stop reading this post cause PCOS isn’t easy.

So first understand it’s a gynaecological condition,
A hormonal imbalance affecting estrogen and progesterone.
Symptoms include growth of benign masses on our ovaries,
Referred to as: “ovarian cysts” that can develop randomly.

It can affect our weight, especially extra tummy fat,
Hair loss for some, or additional hair on face, legs and back.
See the thing to always remember is all women are unique,
So the same condition can affect several women differently.

Infertility and miscarriages are the devastating plight for some,
Low sex drive, mood swings and cravings is another woman,
And yet another will be in the hospital with a ruptured cyst.
And still another on heart medication, getting the gist?

PCOS increases risk for cancer, and is also quite an expense,
It’s a lot more than diet and exercise to manage this problem,
Medical care: ranging from surgeries to medication.
And the high protein, low fat, low carb, is no vacation.

The worst part of the journey is encountering uneducated folk.
Who will say “Stop whining” or “Looking Chubby” as a joke.
PCOS has affected me and I am stronger but I still hurt,
So if you can, just take the time to show some form of support!

You may not want to wear the ribbon or apply a teal filter,
But you might be able to help a friend find a good doctor.
Or perhaps you can reach youth and educate and empower.
One Love, One People; let’s love and take care of each other.

by Desriel Greenidge
The Rastafarian Mermaid

Dawn’s Thoughts…

“As a chronic illness sufferer, there is a period of time I experience (not sure if others do) which I like to call “the twilight zone”.

It’s the period of time between a pain/illness flare (complete with rest and medication) and when you start to resume your regular activities. It’s duration depends on the individual.

Why do I call it the twilight zone? Because it’s the time (I find) when my body is at its most exhausted state. Why is the body so exhausted? Because a chronic illness sufferer’s body has to constantly fight a disease it really shouldn’t have, and this exerts energy – without you physically doing anything. In other words, you could’ve been on bed rest for the past 5 days – you’re still exhausted due to your body fighting the illness.

Like I said, the duration of the twilight zone depends on you. Your willpower. It is my opinion that everyone should rest at least for a part of the twilight zone – ie. You shouldn’t go from heavily medicating immediately to your regular activities (just my opinion).

Today is my twilight zone.

exhausted #bonetired #negativespoons”

Does anyone else feel like this? Let us know.

Chronic Illness and the psychological impact on the Caribbean woman- a personal perspective – By Julia Mandeville

“African women in general need to know that it’s OK for them to be the way they are – to see the way they are as a strength, and to be liberated from fear and from silence.”-Wangari Maathai

From the time we became aware of our bodies as young ladies, we’ve been either directly or indirectly taught to “grin and bear” the pain and discomfort associated with any “womanly issue”. It was considered taboo or inappropriate to mention that we were on our periods and if we dare complain of cramps and how painful they were from our peers to the medical professionals we saw, we were told that it was normal.

Suffering in silence(1) is something that more often than not has been the norm for women, particularly those of Afro-Caribbean descent. This suffering in silence mechanism has not only been restricted to gynaecological issues but I have seen its extension in other areas of the Afro-Caribbean female’s life. Intimate relationships, mental health, academic struggles, financial hardships, maternal health concerns- We are expected to be the ever willing caretakers, strong backbone of the familial structure who suffer with grace and dignity and always persevere no matter the obstacles.

Yes, women are strong and yes, sometimes it is better to keep some aspects of your life private (not everyone who’s listening actually cares or wants to help) but it is also critical to recognize that there is strength in speaking out and demanding advocacy for major health issues. A report by the Pan American Health Organization (PAHO) admitted that until recently, women were significantly underrepresented in all areas as it related to health research(2).

As it pertains to chronic illnesses, it has been found that females are affected at younger ages than males and due to a longer life expectancy will have to endure the symptoms and outcomes for a longer duration when compared to their male counterparts(2). Chronic illnesses, whether or not they are common, carry a secondary mental burden with them. The associated symptoms and side effects to treatments and medications can adversely affect the patient’s everyday life. Even the most psychologically and emotionally resilient person can be caught off-guard by sudden feelings of self-pity, depression and anxiousness due to changes within their bodies they have no control over.

Furthermore, it is still difficult to discuss anything related to mental health in the Caribbean. Jokes at the expense of those who suffer from psychological issues are consistently made and persons who make up this subset of the population are more often than not shunned as if mental disorders are catching.

It’s no wonder then that Caribbean women may instead of speaking out about their physical and mental discomforts, internalize their pain in the hopes that eventually things will improve without having to disrupt the normalcy of everyone else.  A 2010 report(3) indicated that psychological issues are two times more prevalent in females and there are real serious consequences to be had if we as a region continue to ignore the realm of mental health especially amongst our young females.   Either way, we in the Caribbean region must redress this way of thinking if we are to ensure all facets of individual citizens, regardless of gender are included when health care, treatment services and policies are developed.

References:

  1. Suffering the Silence [Internet]. Available from: http://sufferingthesilence.com/press/#sthash.QRrEsT3w.dpbs
  2. Pan American Health Organization. Women and Men Face Different Chronic Disease Risks. 2011; Available from: http://www.paho.org/hq/index.php?option=com_content&view=article&id=7732%3A2011-women-men-face-different-chronic-disease-risks&catid=4045%3Achronic-diseases-news&Itemid=40276&lang=en
  3. Gaviria, Silvia.L, Rondon M. Some considerations on women’s mental health in Latin America and the Caribbean. Int Rev Psychiatry [Internet]. 2010;22(4). Available from: http://www.tandfonline.com/doi/abs/10.3109/09540261.2010.500868?journalCode=iirp20

Julia Mandeville is the Immediate Past President and current Public Health and Advocacy Manager of the Barbados Association of Endometriosis and P.C.O.S. She holds a B.Sc (Hons) in Biology with Microbiology from the University of the West Indies, Cave Hill Campus, Barbados and a MPH- Global Health from the University of Manchester, Manchester London. 

Original Article Posted in Island Muse on 11/08/2016