Living with PCOS and Endometriosis - A personal insight by Sabeena Ahmed, Fairtrade Campaigner, Educator and Social Entrepreneur

Sabeena Ahmed and The LilFT
Posted April 20, 2020 from United Arab Emirates
Sabeena with Nurse Mary Candy Lou - March 2020

Thanks for dropping by!

I'm Sabeena, not to be confused with Ribena.

I'm a proud Mancunian, fairtrade campaigner, educator and social entrepreneur.

I'm also the owner of The Little Fair Trade Shop.

I love fairtrade chocolate and try to live a Fair Trade Ethical Living lifestyle.

I  share my love of fairtrade with my long suffering husband Faisal and siblings Irem and Farooq.

For the past 30 years I have lived with Endometriosis and PCOS. There have been many challenging times, surgeries and healing. I've never stopped dreaming or pursing my ambitions.

I am optimistic that this blog will encourage other ladies from the South East Asian community to talk openly about their experiences of Endometriosis and PCOS.

This is a brief summary of my Endometriosis and PCOS journey.

Most female social entrepreneurs I know are multi talented, ambitious and innovative. 

I feel blessed to be a member of an exclusive club of makers and doers. All action, brain storming, ethical learning, strategy and conversations.

I love that part of my life!

However, there is a part of my life that most people don't know about.

The days where I can't get out of bed, struggle to get household chores done and don't have the energy to answer emails, WhatsApp messages or call family.

This is my reality most days of the week but you would never know looking at me.

I'd like to change the narrative about many issues and this is one of them. Like many hidden illnesses Endometriosis and PCOS are conditions not many people understand. 

Most Endo and PCOS survivors like myself are strong, fiercely independent and dislike fuss. 

I seldom burden others with my issues and rarely ask for help due to my high pain thresholds. I have lived my life with the motto 'grin and bear it' ingrained in my mental psyche.

As a social entrepreneur it has been challenging and difficult to talk about Endometriosis and Polycystic Ovarian Syndrome with stakeholders, family and friends who sadly dismiss this condition as laziness, melodramatic and weak.

Needless to say I have learnt to accept my condition and will continue to educate and support others who are experiencing difficult times.

I am not looking for sympathy but explaining who I am and how my condition affects me on a daily basis.

Simple tasks like taking a shower and getting dressed are exhausting.

Household chores like cooking, cleaning and ironing, the activities that I used to take take for granted are difficult to complete. 

 

Endometriosis and PCOS

A brief history of my Endo and PCOS journey.

I can't remember when the painful stomach aches began. My mother took me to see a general practitioner who dismissed my pains as normal.

I was 10 or 11 when I had my first period.

Shhh! We don't talk about menstruation in the Muslim community, its taboo and a subject that is considered inappropriate. Growing up I don't remember ever having a conversation about the reproductive system with my mother.

For approximately 14 years I thought it was normal to feel like a gremlin during periods.

The cycle was the same every month.

It started with sharp migraines, followed by a bloated stomach (endo belly), gas, hot stabbing painful cramps, water retention, back and leg pain, heart palpitations, shortness of breath, dizziness, pins and needles and numbness in my feet and legs and very heavy periods.

My family avoided me, I would argue with everyone. I was so irritable, the pain was unbearable. 

I ate all carbohydrates, chocolate, bread, chips and foods that relieved the cramps. Sugar was my comfort and cure.

It didn't help that I had Beta Thalasaemia minor, If I could sleep I would.

I endured horrible painful cystic acne. I felt ugly and unattractive, I still wake up with breakouts, but I've learnt to accept that this is my normal.

During my teens and early twenties, I wanted to hide my hideous face.

My self esteem and confidence were at an all time low. I tried to conceal the acne with concealer but this had the opposite effect and any attempts I made to hide my acne failed abysmally, my face looked cakey and dry. I still don't wear any make up and only manage to apply basic eyeliner and lipstick.

Hiding your face is physically impossible in Asian circles especially when there is an endless list of functions and celebrations to attend.

I knew people especially Aunti ji's would judge and look at me in shock and horror.

They would say, what's happened to your face?

They always know how to make you feel UGH!

 

Surgeries 2004-08

At 29 I collapsed at University and was referred to a fabulous gynaecologist who diagnosed my PCOS and Endometriosis. 

Later that year I had my first laparoscopy and had polyps and cysts removed.

I felt like a new woman, I had boundless energy and ran around London teaching, preparing resources and looking after my in-laws.

It was refreshing to have all this new energy. 

In 2008, I had my second surgery, but this time my recovery took 6 months.

During my recovery I established a passion for helping others, fairtrade social and trade justice and The Little Fair Trade Shop was born.

 

My Recent Surgery (March 2020)

March 2020 I was admitted to hospital after a few weeks of excruciating pain in my left ovary.

After a CT scan I was told I had a cyst and required urgent surgery.

My cyst was removed 17th March 2020.

My consultant informed me that the cyst had ruptured and had welded itself to my colon and left ovary. He removed the white ruptured cyst cleaned me up, but could not see any signs of Endometriosis or PCOS due to the inflammation.

I was in two minds about attaching photographs of my ruptured cyst and decided against it.

 

Acne

To control my hormonal acne I was referred to a dermatologist in London who prescribed Doxycycline and Quinoderm 10 and 5.

I started a 2 year course in 2004 and saw a significant improvement by 2006.

I began using the Environ skin care range but discovered Decleors after relocating to Saudi Arabia, I used religiously from 2004 until 2019.

Sadly, Decleors was purchased by L'oreal and I decided I didn't want to support a brand that tested on animals.

I am weary of cosmetics that contain parabens such as, methylparaben, propylparaben, butlyparaben, triclosan, triclocarbon, and diethylphthalate (DEP), sodium lauryl sulfate (SLS) and (SLES) sodium laureth sulphate that are linked to breast cancer.

I have also learnt it is better to avoid products that list fragrance or parfum.

Since my mothers passing April 2016 I feel its my duty to educate others about the dangers of applying toxic chemicals on delicate skin and its been therapeutic conducting research about the alternative organic, vegan, socially conscious brands that are available on the high street.

For those who are more adventurous do it yourself recipes are widely available online.

 

Odylique

During 2016 I had a couple of lovely online conversations with Abi Weeds Managing Director and Emma Hopewell of Odylique - Essential Care (Organics) Ltd.

I was particularly interested to support Odylique as it is a leading brand of cosmetics and natural skin care based in the United Kingdom.

The company prides itself on promoting their organic, vegan, fairtrade, cruelty free ethos and specialise in treating problematic sensitive, reactive and allergy prone skin.

Abi explained how the company was established by her mother Mrs Margaret Weeds over 30 years.

All Odylique products are Soil Association Organic certified and the brand has won numerous awards for their pioneering products, best of all they are cruelty free so you can wear them with pride knowing that they have been tested on other individuals with sensitive prone skin like mine and yours. Their products are suitable for children.

As a long term suffer of adult acne, 30 years to be precise, I was excited and anxious to use their products.

Weight, Diet and Lifestyle

Over the years I have changed my diet to include more of the delicious recipes my late mother used to cook.

One of the recipes I'd like to share is how to make Masoor red split lentils and Moong yellow lentils daal.

This recipe was first requested by my Creative Director Helen Barlow Scott of the One Line Design Studio, Leeds, UK.

My weight ballooned to 72kg between 2002 and 2006.

I took drastic measures December 2006 after my beloved father passed away.

I married the treadmill for two years and lost 20kg.

I maintained my weight for many years until 2017.

During 2017 I was diagnosed with a rotator cuff on my right shoulder and had surgery November 2017. My recovery was slow.

During 2018 I required the same surgery for my left shoulder.

My recovery has been painfully frustrating. I have gained a lot of weight and am too scared to see how much I exactly weigh but I'm sure I'm approaching 72kg again.

This year 2020 I hope to start exercising again at a pace I am comfortable and do not lose my breath. 

 

Fair Trade Ethical Living

How to make Masoor (Red Split Lentils)

and Moong (Yellow Lentil) Ki Daal

Serves 4

INGREDIENTS

Red Split Lentils (Masoor Daal) Fairtrade or Organic if possible,

Yellow Lentils (Moong Daal) Fairtrade or Organic if possible,

Garlic, Crushed Red Chilies, Green Chilies, Red Chili Powder,

Tumeric Powder, Salt, One Small Onion, Coriander and Water

I will attach a link to the recipe at the end of this blog.

 

Special Herbal Tea during Menstruation 

This special herbal tea was recommended by an aunt who lives in South London.

Aunty Tahira was a friend of my late mothers and advised me to drink this tea to help me through the first three days of my menstruation cycle.

I have religiously drank this tea for the past 16 years.

Its helped to relieve painful cramps, back ache, leg pain and expiate the mennorhagia heavy periods and clots.

Its been a miracle tea and I hope it helps other women too.

 

INGREDIENTS

Fennel Seeds 10-15g

Cinnamon a small stick (3cm)

Gur (Jagary) add to taste

Butter 10g or less

Water boiling hot from the kettle

 

Recipe

1. Add the fennel seeds, cinnanon stick, jagary and butter to a small sauce pan.

2. Add a cup or mug of water.

3. Boil the ingredients 5-8 minutes until the butter and jagary are completely dissolved.

4. Strain the tea into your preferred cup/mug.

5. Drink the tea hot but don't burn your mouth.

6. Make the tea every day for the first 3 days of your cycle.

7 Enjoy!

 

How you can support someone with PCOS and Endometriosis

If you know someone who has been diagnosed with Endometriosis or PCOS the following actions may help them during their difficult times.

1. A kind empathetic listener ear can be reassuring and comforting. Just be there and listen without judgement.

2. Read about the symptoms. Please click on the Endometriosis UK and PCOS UK websites links I've attached at the end of this blog.

3. Help with household chores if you can. Offering to cook, clean, shop can be a God send for many. Many Endo and PCOS survivors have food intolerance and cannot digest or absorb certain food groups, always ask your friend what they can and cannot eat.

4. Cook their favourite dish and surprise them by taking it over, it will do wonders for that someone you care about particularly if they are having a tough day.

5. Attend and support your loved one during their appointments, scans, surgeries and pregnancy. Most patients like myself struggle with walking long distances, and may need to organise transportation, i.e. taxis and wheelchairs.

6.Take them out for a pamper session, dinner or spa day.

7. Be patient, your loved one may change plans at a drop of hat, this does not mean they are being difficult. Endometriosis and PCOS can cause fatigue, anxiety and depression which stops them from participating in every day activities.

8. Take an interest in their hobbies or favourite past time.

9. Keep in touch, call and send them a message to say you care. 

10. Invite them to a private friends Facebook or WhatsApp group.

11. Surprise them by ordering fairtrade flowers or fairtrade gifts.

12. Social prescribing may be an alternative, conduct research to find groups in your local area.

13. Give them space, sometimes all they need is rest and relaxation and a good sleep can help them to heal and recover. As I've said many times self-care is not selfish.

14. If they are well enough a short weekend break away, a change of scenery or holiday may do wonders to for their mental health and well being.

  

My Endo and PCOS care basket and products

Over the years I have tried and tested many products to provide me with the comfort, ease and pain relief. 

Beauty Therapy - cosmetic and skin care (fairtrade, vegan, organic and cruelty free). Primrose oil, Vitamin D 1000iu dose and folic acid tablets.

Comfortable clothes and shoes, fairtrade leggings, and T-shirts.

Bamboo Pillow - my bamboo pillow has helped me to stablise my shoulders and neck.

Mattress - I purchased a memory foam medium firm mattress.

Items that have helped me over the years during my tough days.

Fruit - blueberries, pears, bananas, oranges, apples and dates have boosted my immune system.

Teas - green tea, mint tea and my special menstruation tea.

Fairtrade Dark Chocolate - Divine, Montezuma, Green and Blacks Fairtrade.

 

Endometriosis, PCOS, Fairtrade and Social Entrepreneurship

I'm proud to say I am a social entrepreneur. born and educated in Manchester, UK.

I'm a qualified PGCE ESOL Practitioner, adore fairtrade chocolate and support breast cancer research,

I promote the sustainable development goals, a fair trade ethical lifestyle and am an advocate of the circular economy.

I've never stopped my condition from pursing my passion fairtrade, social and trade justice.

Yes! There have been days that I've been very poorly and trading has been difficult. My only pain relief over the years has been Paracetamol and Panadol.

I am blessed to have had the support of a caring husband who never stopped me from pursuing my dreams and ambitions.

Sadly, carrying heavy boxes for exhibitions and markets finally took their toll on my shoulders 2016 and I urgently required rotator cuff surgeries for both my shoulders.

My recovery has been slow and frustrating, nevertheless, I have continued to support the World Fair Trade Organization and The Fairtrade Foundation with their campaigns.

The business has become a secondary concern while I heal and recover.

It has been a frustrating time, I love participating at exhibitions and markets speaking to customers face to face. 

There are so many objectives and goals I cannot achieve. I have to remain optimistic but realistic and heal until I am healthy.

I have to use the skills set, expertise and knowledge I have acquired over the past 11 years to diversify in other areas and industries. 

I am the eternal optimist and hope to write about all the fairtrade producers I've visited since 2008.

I would love to see more support, advice and financial assistance given to social entrepreneurs who are diagnosed will chronic illness and hidden disabilities.

Below is a summary of my most successful fairtrade activities and campaigns in the United Arab Emirates 2009 - 2020.

Sabeena Ahmed - The Little Fair Trade Shop and the United Arab Emirates

She Trades Mena Hub Launch Guest Panel Speaker

By sheer chance after a coffee with Ms Arwa Hassan Al Qassim of Dubai Culture I was politely asked if I would like to be a guest panel speaker at the SheTrades MENA Launch. I said YES!

Many thanks to Dr Ashraf Mahate Chief Economist at the Government of Dubai and Dubai Exports and Ms Al Qassim Dubai Culture for providing me with a platform to talk about my passion FAIR TRADE.

About The Little Fair Trade Shop

The Little Fair Trade Shop which was established during Ramadan 2008.

I knew that this was my calling and vocation.

The Little Fair Trade Shop mission and core values:

Purpose

Our mission is to promote self-reliance, empower artisans and their local communities and give them the dignity and respect they so rightly deserve.

We support Fair Trade producers through the sale of our Fair Trade products. We stand for social trade and justice. In the UAE we are pioneers and aim to ignite the same passion in others.

 

Value

Our supply chain is transparent. It starts with the producer and ends with us. Every step of the way a good thing is being done.

We chose Fair Trade because we want our customers to feel happy knowing they have purchased a beautiful product which has been produced by an extraordinarily talented person and in turn supported a sustainable business, a community and the environment.

 

Story

For over 11 years I have been retailing gorgeous fair trade gifts in my home city of Dubai UAE and I am so excited to be able to bring those products to you through the power of the worldwide web. 

The Little Fair Trade Shop E-Commerce store relaunched Spring 2016.

It all started one day in Egypt. My husband Faisal and I had the good fortune to visit Fair Trade Egypt Cairo 2009 and it was there that I purchased my first Fair Trade product – a gorgeous butterfly pattern silk and jute bag.

Faisal and I were completely overwhelmed when we were told about the Tora Women’s Group who live in the garbage collectors area of Cairo and produce the bags as a means of empowerment and sustainable income.

Inspired by this simple act of humanity we decided to set up The Little Fair Trade Shop and dedicate our efforts to trade justice.

 

 

Trading and Exhibitions in the United Arab Emirates

The Little Fair Trade Shop began its maiden retail voyage at the Dubai Flea Market, September 2008.

Customers were overjoyed to see an authentic range of hand embroidered wall hangings and wooden handicrafts lovingly made by artisans at Fair Trade Egypt.

The Little Fair Trade Shop first started trading at the Convent Garden Market, Jumeira Beach Residences and completed two seasons 2009-2011.

The Little Fair Trade Shop aspires to work and engage with consumers of all ages and backgrounds, expatriates, educators, parents and young Emirati's to create awareness for the fairtrade movement of the United Arab Emirates. 

It is our aim is to organise social events and educate the youth about fairtrade, sustainability and ethical consumerism.

It also traded at the Ripe Organic and Craft market until from October 2011 to January 2013 and consciously traded at specialist events such as the Festival at Masdar, the Swiss Business Council Christmas Market, WOMAD Abu Dhabi, DUCTAC and the Arabian Travel Market.

There is an absence of market activity and presence during 2013-2016 when my beloved mother was diagnosed with metastatic breast cancer and she returned to the Almighty April 2016.

Thank you for taking the time to read my story.

I would like to take this opportunity to wish all Endometriosis and PCOS friends and survivors the best of health and success with their fertility treatments.

Once again I hope that this blog will encourage ladies in the South East Asian community, Pakistani and Indian Diaspora to speak out about their experiences of Endometriosis and PCOS.

Anyone is welcome to leave comments below anonymously, I'd love to hear from you.

Sabeena X 

 

Further Reading and Links

The Little Fair Trade Shop Blog - Living With Endometriosis and PCOS by Sabeena Ahmed

How to make Masoor and Moong Dal

Odylique Reviews - Sabeena Ahmed

Sabeena Ahmed and The Little Fair Trade Shop in the United Arab Emirates

Sabeena Ahmed - My Fair Trade Journey

Endometriosis UK

Endometriosis - NHS

Verity PCOS UK

PCOS Awareness Association

Polycystic Ovary Syndrome (PCOS) - NHS

Fairphone 

Blog Chatter - Blogging With A Purpose

#CauseAChatter

Comments 12

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Paulina Nayra
Apr 22
Apr 22

Dear Sabeena,
What an inspiring comprehensive story. You are right, no one would know how you are and the challenges you faced and the struggles you overcame because your face glows. Your beauty radiates. I must admit that I am completely ignorant of endometriosis and PCOS. I have work colleagues who are experiencing very painful menstruations but I did not hear about it from them. You are one brave woman who knows your talents and is living your passion. I wish you success in your fair trade enterprise. I'd like to learn about that, too. And wish you a successful marriage with the treadmill as long as you pace yourself.
Hugggss.

Dear Paulina,

Good Evening, Assalaam Alaikum peace and blessings,

Ramadan Mubarak!

Thank you for your caring message of love and compassion.
You are very kind.

Most people don't know about Endometriosis or PCOS, I hope you will support your colleagues at work by asking if they need help.

I'm not brave, just Sabeena. My parents brought to believe I should pursue my passion and overcome health problems with hard work and determination.

IF you are still interested to learn about my work please click on my work below.

https://www.thelittlefairtradeshop.com/blogs/news/the-little-fair-trade-...

Thank you for your best wishes. They are received with gratitude and love.

I hope to take more photos of my new fitness regime soon including the treadmill.

Hugss back at ya!
Sabeena

Paulina Nayra
May 08
May 08

Alaikum salaam. Will definitely visit your blog. Keep shining Sabeena.
Huggs.

Jill Langhus
Apr 22
Apr 22

Hello Dear Sabeena,

How are you doing, dear? You look like you're doing well, despite what you've gone through, especially recently.

Wow! That's a really comprehensive story/post! You have such an indomitable spirit, that I love:-)

Thanks for sharing your tea recipe. I could've used that when my cramps were excruciating. I've saved this in case someone needs a remedy again in the future. I found acupuncture helped me a lot as well as working through the root causes behind the conditions. Have you done the inner work, love, so you can get some relief? I can't remember if I've asked you this, but it must be very difficult to be optimistic with all that you've been through and all that you're still going through.

I hope you will recover soon, love.

XX

Dear Jill,

Good Evening, Assalaam Alaikum, peace and blessings,

Ramadan Mubarak!

Thanks for your words of encouragement.
I was very poorly when I recorded the video and can't remember how I managed to sit and talk about my surgery.
Just for reference we use Subhan'Allah when praising someone which means 'Glory be to God' this also avoids the evil eye.

I've never been called indomitable before, my teachers at primary school said I was a conscientious student. :)

The menstruation tea is my miracle tea. You're welcome, I hope it helps you insha'Allah (God willing).

Yes! It was a comprehensive post, a 30 year journey of pain, acceptance and self-care. I thought it was important to share my Endo and PCOS journey to encourage other South East Asian women to talk openly about their experiences.

Sadly, Endometriosis and PCOS are not conditions openly discussed in the community and are considered taboo.

I have tried acupuncture, but it caused further contraindications.

I'm currently working on self-care and healing via writing. I've also started to exercise again and hope to lose weight before my 45th birthday insha'Allah.

Thank you, yes I learnt to accept my current situation, you never get over losing your parents, you work around your grief.

Once again thank you taking the time are care to respond to my post. It means more than words.

I hope you are taking care of yourself.
Let me know your news when you have time.
Stay safe!

Love, peace and blessings
Sabeena

Jill Langhus
May 06
May 06

Hello Love,

How are you doing today?

Yes, I'm sure you were, but you sure are strong, and unconquerable, too!

That is sad about endo and PCOS. I'm glad you're spreading awareness about it. No one should have to suffer in silence.

Oh, dear. That's interesting about acupuncture.

I'm glad you're working on self care:-)

I see. I lost my mom awhile ago but we weren't that close. I'm not that close with my dad, either, but I can empathize with how your feeling:-(

You're very welcome, love.

Yes, thanks, and thank you for your concern, and love:-)

Okay. I finally launched the Liluye website, FB and LI pages in March. That was my big news.

You, too!

XX

Adanna
Apr 22
Apr 22

Hi Sabeena,
You are a strong and brave woman. Thank you for sharing your experiences with us.

Love,
Adanna

Laetitia Shindano
Apr 26
Apr 26

Bonjour Sabeena
Merci de nous partager cette riche réflexion qui englobe toutes les étapes heureuses et dures de ta vie et sur comment tu gères ta vie maintenant.
Merci encore pour les différentes ressources dont tu nous disponibilités.
Tu es vraiment un exemple à suivre concernant la détermination et la confiance en soi que doit avoir chaque femme et fille.

Merci

Laetitia

Chère Leatitia,

Bonsoir, Assalaam Alaikum, paix et bénédictions.

Ramadan Mubarak!

Votre message m'a fait pleurer. Quelle belle âme tu es!

J'ai traduit votre message sur Google Translate.
Mon français est très basique.

Vos paroles ont touché la corde sensible ce soir.
J'espère que je pourrai être aussi sensible et éléqouent dans mon discours lorsque je m'adresserai à un étranger.

Vous êtes une femme très gentille, attentionnée et prévenante.

Je vous souhaite toujours santé et bonheur.

Veuillez pardonner toute erreur dans ce message.

Prenez soin de vous et restez en sécurité
Amour, paix et bénédictions
Sabeena

Merci beaucoup Laetitia! :)

Hello Sabeena
Thank you for sharing this rich reflection that includes all the happy and hard stages of your life and how you manage your life now.
Thank you again for the various resources you have available to us.
You are truly an example to follow regarding the determination and self-confidence that every woman and girl must have.

Laetitia Shindano
May 05
May 05

Merci beaucoup Sabeena.
A bientôt.
Laetitia

Dear Adanna,

Good Evening, Assalaam Alaikum peace and blessings.

Ramadan Mubarak!

I hope you are well?

Thank you for your kind comments, they are very welcomed and appreciated.

Stay safe!
Love and regards
Sabeena

Dawn Arteaga
May 06
May 06

Wow Sabeena - this post is rich with knowledge, information and heart. Thank you so much for sharing it. You are bringing such light and beauty to the world. In sisterhood, Dawn