Hope in A World Of Endo

During a recent visit to my mum’s house I found my pelvic scans dated 9 years ago.

I froze.

One picture unearthed memories. Memories of pain, confusion and despair.
I had archived those memories, so that I could live in the present and enjoy my here and now.

Out of three ultrasounds only one showed something that helped the doctor see that the pain was not all in my head. The other two scans, were the basis of the ‘it’s all in your head’ argument. The most frustrating and infuriating words that can be said to anyone in pain. Anyone battling real, physical, and invisible pain.

During those months, I was scared, alone and in pain. Those make for a horrible combination. One that can push you to accept everything at face value. I didn’t know about the endometriosis resource centers or support groups. My sleuthing skills were in too much pain to be bothered to do more research on the drugs being administered.

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When the side effects came, I wasn’t sure which evil was worse, the one I had lived with for years or the one that I had willingly had pushed in to my glute. It was a literal pain in my butt. And some of its effects have stuck with me like glue. Nine years later it is hard to shake ‘em off.

I wish I knew what I know now about Lupron. I wish I knew that after sending aunt flo on vacation, it would erode my bone density; that it would sink me into a hole, that it would announce free room and board for every calorie looking for a home. That it would take over 5 years to lose that weight. That the sadness would overwhelm me. That I would experience menopause symptoms as a teen.

Just maybe, maybe if I knew all this, I would have made a more informed decision. I would have taken my calcium supplements, I would have sought help and not drowned in tubs of ice cream.

Information is power. Endo sucks! But it would sure be nice to know exactly what else you could be signing up for when you take a drug. I’ll be highlighting the drugs available in Kenya, and giving you the pros and cons of each.

Finally, we need excision surgery in Kenya. That is what hope in the dark world of endo looks like, excision. And healing, by God’s grace.

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31 Days Of Endo ~ Saum Hassan

Day 19 🙂

“Our goal is to make Endometriosis a household name.” ~ Michelle Lee Walters

The reason we share our stories is so that other women will know that they are not alone. Though some symptoms may seem peculiar, we need to understand that Endometriosis cannot be put into a box. It presents itself uniquely in every woman.

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Boldness, courage and strength are words that can be used to describe Saum Hassan. She is a 36-year-old  who lives in Kisumu and works as a counselor for a preventive Healthcare Provider. Her heart is filled with joy when she positively impacts other people’s lives. She has been living with umbilical endometriosis for the last one year.

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I started my periods in 1995 at  the age of 13 and I was excited about it. My peers used to sit and gossip together and call you a child if you hadn’t seen your periods. I was happy that I could now enjoy their company. My menarche was smooth and  I felt normal even though a few other girls would complain of cramps. Then, things changed in October 2002 when I was woken up by a sharp pain in my lower abdomen. I lay on the floor, writhing in pain as I literally screamed the house down and woke up everybody in the house. I saw my elder sister walk out and return with a small tablet on her palm and a glass of water. I took it and felt the relief wash over my body ten minutes later. I slept well and thought that was the end of it. Little did I know that it was just the beginning of a new journey altogether.

In the following months, I experienced pain accompanied by nausea, vomiting and loss of appetite. I gave birth in 2010, and when my periods resumed post delivery, they were worse than anything I had ever experienced. My frequent visits to the hospital didn’t bear fruit as the Doctors told me that the pain was normal.

I resulted to self-diagnosis with the help of Google when I started bleeding from the navel every month from March 2017. Just thinking about dressing my navel was very challenging, but I am more comfortable doing it now, since I have been doing it for a couple of months. During my research, I learned about Umbilical Endometriosis and my story was aired on NTV in February 2018 and K24 on 7th March 2018. As a result many doctors have confirmed the diagnosis though I am yet to go for a laparoscopy to get a proper diagnosis.

To treat the pain, I have been using Ibuprofen, diclofenac, and powergesic at home. When I got to the hospital I am given diclofenac and buscopan injections and also morphin intravenous. Sometimes, a towel dipped in hot water and a hot water bottle help to relieve the pain slightly. Drinking ginger and black pepper tea also offer some relief.

Endo has robbed me of my sense of fashion. I no longer wear skirts, trousers and anything clothing that puts pressure on my waist, due to the constant pain around the abdomen and navel throughout my cycle. Physically, I can’t stand for a long time because my legs start shaking. Sitting is also a problem because I can’t sit straight or lean forward. My social life has been affected because I have to keenly watch what to wear during those bad days and the days after my periods.

I’ve had to make several lifestyle changes including changing my diet.  I have reduced my intake of red meat and sugar. I drink a lot of water and have ginger and turmeric water every morning on an empty stomach

Eight years later, I am still trying to conceive as I hold my marriage together. Sticking to my new diet seems daunting, at times I ask myself if I will really be able to manage it.

Through this journey, I have learned that Endometriosis is real! Women to take reproductive health seriously. More awareness is needed to reach more women and young girls. Sharing stories inspires others to also open up. Doctors should be well equipped with the knowledge of how to help women facing this issue.

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I have found a good support system in the Endometriosis Foundation of Kenya. I have joined both the Facebook and WhatsApp groups and found women who have encouraged me. I realize that I am not alone. It’s important to have a support system, because that’s where we get strength and hope. I’ve been encouraged by the other endo warriors like Elsie Wandera, Njambi Koikai, and Ciru Muriuki.

My favourite flower is the Sunflower. Its brightness throughout gives me light and no matter how dark this endo journey may be there is light at the end of the tunnel.

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You can send her an email, or follow her on Facebook and Instagram.

 

Thank you for sharing your story with us, Saum, and for being bold enough to speak for the women who are suffering in silence. We pray that you get a diagnosis and treatment, and that you will have adequate grace and strength for the journey ahead. By God’s grace, may you hold your child in your arms soon. We are praying that a cure will be found soon and that the suffering of women will come to an end. Here’s to more happy and peaceful days ahead!

#31 Days Of Endo ~ Elsie Wandera

Pain changes you, and sometimes it births within you a desire to be the change that you want to see. That is the story of Elsie Wandera, our third Endo warrior on this seriesSimple Photo Spring Quote Instagram Post

 

 

Elsie is strong, driven, resilient and passionate. After struggling to get a diagnosis, she chose to speak up about this condition which many women suffer in silence because most think it’s shameful to speak about and to support the women suffering from Endometriosis. She is the founder of the Endometriosis Foundation of Kenya.

She first shared her story with me in 2017.

My name is Elsie Wandera and I am 36yrs old. I am a trained Journalist & recently graduated with a degree in Communication – Advertising major from Daystar University. I have experience in Personal Administration and I’ve worked in a marketing capacity for 2 FMCGs. I am also the founder of Endometriosis Foundation of Kenya focusing on raising awareness and advocacy on Endometriosis. I am also the founder of My Heart Scripted where we run a 10-week experience called Purity & Purpose, that helps women pursue purity and unlock purpose.

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The thing that makes me smile is knowing that I have played my part in making the world a better place and seeing other people smile thus.

 

Where it all begun

I started my periods when I was in primary school. I sincerely thought I was dying, I remember I crying in the shower because I could see this brownish flow but I could not tell where it was coming from. My mom then told me it was okay. I remember I had to buy pads, that was exciting as a girl, I even remember how they smelt then 🙂.

 

Managing the pain

The pain begun when I was in high school around the age of 14 or 15. I remember I experienced such bad pain that I had to be in the clinic during the  days I was on my periods. These were formational years for me and I thought there was something wrong with me. I continued the journey with the knowledge that periods are painful and I dreaded the days.

 

Diagnosis and treatment

I was finally diagnosed with Endometriosis in 2006 through a laparoscopic procedure, the Obs/Gyn simplified it for me by telling me that my uterus was growing inside out. He found a chocolate ovarian cyst that was bleeding, it was by God’s grace that he found it because it was one of the things that contributed to the pain.

 

Upon diagnosis, I was put on a hormonal therapy treatment. This was administered subcutaneously every 28 days below the navel line for 6 months. It had the worst side-effects for me among them: headaches, hot flashes, breast tenderness, nausea & vaginal dryness. Once I completed the dose, the effects of endometriosis which include: chronic pelvic pain, painful bowel movement, painful sex & heavy bleeding became worse. I recall lying in an ER calling my Obs/Gyn and asking him amidst tears why it is back. That was when he revealed that it has no known cure and is recurring in nature. What’s interesting is that he requested me to consider getting pregnant soon (I was 26 then) because one of the effects it contributes to is infertility among women. However, this is not a solution, it is a Band-Aid for 9-months that does not guarantee that the condition will not relapse.

 

At 34, I had to go through another laparoscopic procedure where the they removed another ovarian cyst and the adhesions around my uterus. This was interesting because I did not know that surgeons had specific parts of the body they could cut and others they could not.file

 

Endometriosis has affected many aspects of my life 

 

Physically

The condition caused physical pain and as a result I dreaded my period and yet it is a gift from God that should be enjoyed by every woman. I had difficulty going for long calls and it was the worst feeling – worse than constipation. I also had very painful ovulation, sometimes I called it “the egg-is-moving day.” I was dependent on pain medication and anticipated pain every month which is not the way any woman should live their life. I also stopped eating as the period approached due to the nausea and difficulty passing long and short calls.

 

Emotionally

It was draining because I had negative thoughts and more importantly, because of the research around the condition and what one doctor told me, I knew I would never conceive. At some point I thought it was God punishing me for a life I’d lived carelessly before.

 

Socially

I was always uncomfortable because I needed to explain myself and why I was going through crippling pain. I was conscious and limited in dressing comfortably because for me it meant sagging clothes because of the physical discomfort during my period and the heavy flow. God forbid I’d stain a seat when the flow opened after a bubble escaped, those were messy days.

 

Professionally

I dreaded having to explain my colleagues and leaders that once every month I’d be disabled and sometimes unable to come to the office. It’s interesting that on those days people would still expect me to deliver my tasks and it would seem like it is not as serious as other physical ailments. But over all I never had an issue especially after I learned what the condition was and that it had a name.

 

I have made changes in my lifestyle

The biggest changes I had to make are around diet and physical exercise because I understood the disease and what it would require of me. I cut down on gluten, wheat, dairy and red meats and increased intake of greens, super foods & supplements to ensure I was enriching my nutritional value. Water intake also is my highest priority because it is a natural cleanser.

 

My current challenges

I think sticking to the diet and relapsing to eating unhealthy foods is the greatest struggle. I’ve learned my body enough to know when I’m craving foods, then I try to compensate with a healthy choice.

 

Learnings from the journey and words of wisdom to other women suffering

I think my greatest learning was understanding that my body is different from another woman and I have to prioritize my health, because no one else will if I neglect it’s cry.

 

We also need support from the world and by telling my story I’ve encouraged another woman to know she is not alone. Therefore, tell your family and friends once you are diagnosed and stop self-medicating and seek professional advise because the body was not built to constantly rely on medication. We also need support from government, employers and medical industry for the sake of all the women in finding a cure and supporting them in every way we can because it takes away our most reproductive years of our lives which we cannot relive.

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Every woman’s pain is valid and if doesn’t matter that you don’t understand it matters that you stand with her as it is not easy to bear.

You can connect with Elsie on Facebook and join The Endometriosis Foundation of Kenya  Facebook group.

Follow her on Instagram and Twitter.

Thank you, Elsie, for sharing your story with us. Your voice matters and your labor is not in vain. Keep blazing!

 

#31 Days Of Endo ~ Amina Mohammed

Day 2 of the awareness month 🙂 I hope you are all keeping well.
Our second Endo warrior is the graceful Amina Mohammed.  I met Amina for the first time late last year during a Yellow Endo Flower meet up. She is a sweet spirited fighter.20180302_142504_0001
My name is Amina, I am 27 years old and an early years teacher. Working with kids and being near the sea bring me joy.
Where it all began
My periods started when I was 12 years old. From the first day I had painful cramps which were accompanied by throwing up and a running stomach.
I remember being house bound for the first couple of days of my cycle because of the pain. I always had an old bucket for throwing up next to me, when it got too much, I just camped in the bathroom, with the cold floor easing my pain. All this time I knew that periods are painful and what I was going through was normal.
In primary school, I heard a story that gave me some hope; people said that if you have painful periods, when it’s time to give birth your labour process will be painless.
When I was 19, I started getting constant sharp, stabbing pains in my abdomen, that’s when I knew something was wrong. I was referred to a gynae and she sent me for a scan and when the results came out she told me I had Adenomyosis and that I would have to be put in to early menopause. Imagine the trauma my 19 year old self felt, the first time I go to a gynae and she says I have a strange sounding disease and the treatment is menopause!
After a while I decided to seek a second opinion and that’s when I was diagnosed with Endometriosis. The new doctor explained it well and I had my laparoscopy  where he found many endo lesions on the left side of my pelvic wall. The recovery went well until I started Zoladex injections, the side effects were awful: hot flushes, mood swings, and depression. Eventually I finished the treatment and I finally got some relief.
The thief within
Endometriosis has stolen my energy and I am constantly fatigued to the point that I have to force myself to get out of bed.
Alone
Endo made me feel so alone because I felt that no one understood what I was going through. Fortunately, last year I found a very supportive group of ladies in Endo Sisters East Africa. It was such a relief to finally meet people who understand endo and get me.
My struggles
I also struggle with bloating when I eat the wrong things, recently I bumped into a person I had not seen in years and they thought I was pregnant.
I am working on the endo diet, I’ve given up dairy and red meat but my biggest struggle is wheat – I just can’t seem to give up bread and chapati.
My lessons
I’ve learnt that no matter what, somehow I can get through the pain and dark times. It’s also really comforting to know that I am not alone, a support group is really important. Something that I learnt from you is to be my biggest advocate, that is still a work in progress but it is awesome advice.
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My favourite flower is a rose because I believe that the thorns represent the struggles we go through and despite the thorns, the rose still blooms and becomes beautiful.
Thank you for sharing your story with us, Amina. Keep fighting and inspiring.
You can read the first story in this series here.

Yellow Flower Network

Invisible illness can be lonely, confusing and consuming. There are many times you doubt yourself and the manifestation of the pain. Leaving your bed on somedays can feel like doing calculus, it has to be a calculated move. Some days the method makes sense and on other days, you don’t even know where to start.

The idea to start the Yellow Flower Network was birthed a few weeks ago when I realized that I want to support women in Kenya and give them the personal touch, but I am not physically able to.

My inbox is a buzz with women looking for support, women who have just had surgery, women who would like to meet other women to let them know that they are not going crazy, and that the pain is not all in their heads.

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My desire is that no woman will walk alone, that every Endo-warrior will know that they are not alone. That the thing that tried to break her, will reveal a reservoir of strength and it will enable her to be encourage others.

If you are interested in supporting other Endo warriors in Kenya by texting, calling or visiting them when they are in need (in hospital, post surgery), please send me an email via yellowendoflower@gmail.com and I will be in touch.

To start us off, one of our Endo sisters, Jahmby, needs our help. Let us support her in any way that we can.

Jahmby Koikai

*endometriosis

 

6 Tips To Prepare For Surgery

The words, ‘we need to operate’ shook me in my boots. The next couple of days were a blur. I didn’t know what to expect so I didn’t really prepare myself psychologically or physically for that matter. I was told that it would be a day procedure, so I took a matatu to the hospital at 9am, and I planned to take a matatu back home. Only to wake up and find that the anesthesia would take hours to wear off, and during that time, my mouth would speak more words than usual and I would be floating and dreamy. Thank God for angels, who came just in time to save me from staggering err floating to the matatu stage.

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When you hear the words, “We need to operate”, here are a few things you can do to prepare for the big day:

  1. Seek a second opinion

If you have any doubt about a suggested procedure, please seek a second opinion. Remember the factors to consider when seeking a second opinion.

       2. Get more information

Read widely about the procedure and anesthesia options. Talk to other people who have undergone the surgery online and offline about the procedure and it’s effects on your body.

Discuss with your doctor any history of allergies or side effects to drugs. Don’t leave anything out, a small detail could save your life.

Find out what you need to do to prepare for the surgery, foods you should increase, supplements you should or shouldn’t take. Confirm if you they will need you to have bare nails.

         3. Evaluate the options

If time allows, visit the hospital options then make an informed decision. Postoperative care is important as the doctor is not able to be with you during your whole stay.

Look at the other services offered by the hospital and see how prepared they are in case of an emergency.

         4. Pray and keep hope alive

Pray! Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus. (Philippians 4:6-7 NLT)

Make a thanksgiving jar, and write the things that you are thankful for, both the big and the small. Allow your mind to focus on the good aspects of life.

         5. Prepare ahead

Inform your next of kin that you will be going to hospital and having an operation done.

Arrange for someone to drop you off and help you with the admission process. On the day of discharge, have someone help you with the process so that you can rest as you prepare to go back home.

Back at home, organize meals in advance that need minimal preparation. Plan to be off your feet for the next couple of days. Get someone to help you with the housework as you get your strength back.

         6. Find a support group

There are many other women who are walking the same path that you are. Their first hand experience means that they understand the journey better. Find a group and keep in contact, let them remind you that you are not alone and it gets better. Some of the closest bonds are formed in times of pain.

All the best! I pray you have a successful surgery and a swift healing process.

Blessings,

Ess