I wobbled up the stairs, wincing in pain while basking in joy.
I had survived my first workout in the gym. It was painful. I doubt I knew how long ten minutes really was prior to the kettle-bell circuit. Yo! I had started with a fire in my belly, ready to show myself that I wasn’t as rusty as I felt. At the fourth minute mark, I was asking myself why again I thought this was a good idea.
When I was done, my thighs burned. It made the ab workout feel like a resting period. home workouts had prepared my abs for the pain, but nothing, not even climbing stairs in buildings without stairs had prepared me for the burn in my thighs and glute.
It was painful but it was necessary. Last week I was battling fatigue all the time. I woke up tired and sluggishly moved along as the hours went by. In the afternoon I was spent, all I wanted to do was sleep.
I slept the first day and the second day. On the third day, my daughter, Miss K, told me that she thought I had slept enough. My sleeping and sluggishness meant that she couldn’t craft with me. In this season her language of love is crafts and paint, oh paint. She could paint all day long, and I now find painting therapeutic.
Her comment was my wake up call, I knew that I needed to do something about the fatigue. The next afternoon, when I snuck away to rest (read: sleep) I decided to work out instead. It didn’t feel exciting, nah! It took a lot of self-control to stay the course, but I finished and I felt great. Tired, but energized, and I was able to be more present for the girls later that day.
Yesterday was my first day in a gym this year, I had run out of excuses why I couldn’t go. Miss K’s words rang through my mind as I did the workout. I felt like a wobbly jelly-fish when I was done, but that is much better than feeling like a hibernating bear.
Here’s to more jelly-fish days in the hope of one day having the energy, agility, and excitement for life like a dolphin.
I could talk about periods all day long. What used to make me cringe and uncomfortable is now what make I have chosen to spend this season of my life talking about and training on.
I trained a group of ladies from Moi University a few days ago, and I loved it! There are way too many assumptions about menstrual health. The stigma surrounding menstrual health means that the lies have become truths, and there is no avenue to ask questions or to seek clarifications.
In some communities, girls are having sex soon after their menarche because the boys believe that sexual intercourse can cure cramps. Parents, religious insitutions and schools’s voices are faint compared to the uproar of their peers.
Sex is not a cure for for menstrual cramps. Pregnancy may provide temporary relief, but I believe that teenage pregnancy should not be a band-aid for underlying problems. Pregnancy and motherhood may come with other challenges.
There is a great need out there. To some, this may just seem like just another period campaign, but it is more than just a period talk. It is the demolishing of myths, it is teaching of life-changing truths, it is the restoration of dreams and hopes, it is unveiling the – often-marred- beauty of being a woman. It is showing another side of the rose, while hoping to take away the memories of the prick of the thorn.
There are several opportunities that are coming up to train, inspire and mentor girls, and the truth is that I cannot do it alone.
If you would like to get to know more about the training sessions and how you can help to change a girl’s life, please send me an email via firstname.lastname@example.org.
When we share our stories, we empower and encourage other women. The pain is not all in your head, it is real. Endometriosis is real and you are not alone.
Devon is an endo warrior who lives in Yorkshire, UK. She was 25 years old when she was diagnosed with Endometriosis, now a year later she tells her story. This story is a reblog from Bloomin’ Uterus.
Devon’s Journey: Honestly, I couldn’t tell you if my journey started at 14 or 24. Many women have a long and traumatic timeline of events, knowing something was wrong and battling for an answer. Me? I had a life of this or that bothering me, visiting the GP, being told I’m normal or a hypochondriac (dependent on the GP I saw that day). I am the sort of person who somehow gets through life but no one, not even myself, really understands how I’m managing it so I never really pieced together that various symptoms may be linked. I just carried on and when something anomalous occurred (severe heavy bleeding out of nowhere, the kind of tiredness I just couldn’t shake, pain that just wouldn’t go). I’d sort of absent-mindedly visit my Dr, apologize for taking up their time and take whatever they said as gospel, fully trusting that they would know if something was wrong.
So it was that two years ago I popped into my GP’s office: “I’m sorry for visiting but I have a pain in the right-hand side of my stomach. It’s been there for a few weeks and it’s getting worse. At first, I thought maybe I just needed a poo…but I’ve pooed since then…” The Dr felt my tummy, tested me for pregnancy and sent me straight to hospital where a bed was waiting with advice that I probably had appendicitis. 3 days, 3 blood tests, 3 further pregnancy tests and an Internal Ultrasound later I was in Theater about to have a 6cm Ovarian Cyst removed. I woke up an hour or so later and was cheerfully informed by the surgeon that the Cyst was, in fact, bigger than expected at 8.5cm but he had removed it and didn’t spot anything such as Endometriosis whilst inside.
That is why I don’t know if my journey started 2 years ago or 12.
2 years ago a surgeon didn’t see any Endometriosis yet now I am armed with a diagnosis and extensive knowledge of the condition, I know that for years I showed signs, subtle signs, but signs. I spent my 15th Birthday in Hospital with unexplained stomach pain that was eventually dismissed as “probably an infection.” I remember periods always being heavy, very heavy and I remember them always hurting. At 16 I remember them being so bad one month I struggled to get out of bed. My boyfriend at the time wanted to go somewhere so I manned up and we went to Costa, I ordered my favorite drink, a hot chocolate – I tried to ignore my cramps and sip my drink but felt too nauseous through pain, eventually I had to admit defeat and beg to go home.
This level of period pain was fairly normal but it seemed to ease around the time I went onto the implant for contraception at 16/17 – I never put two and two together. From there I just continued as I was, my periods were heavy and long but the pain was okay, it wasn’t so bad as I couldn’t get out of bed anymore, so I figured it was all okay.
At 19 I had started a new relationship and was noticing Intercourse was painful. I visited my GP and then a specialist, I had a number of tests, swabs and internal exams carried out until I was finally sent away with: “Just try to relax more during intercourse” Excellent advice – why on Earth hadn’t I thought of that before?!
A year later I had the Mother of all periods – I don’t know why that month my womb decided to suddenly put her all into the “spring clean” but man I got a shock. So off I went to my GP, still a little traumatized that last time I went I had effectively been told not to be so frigid by a Dr and still at an age I was grossed out talking periods and stuff. I will never forget what this GP told me: “Some women have heavy periods, some don’t. This is just your lot I’m afraid, it’s certainly heavier than most but that is just your normal” At this point I had bled through tampons and pads within the space of an hour at a time, I felt dizzy and I was in pain, I had really thought this was abnormal but the GP delivered the statement so bluntly, I felt stupid for visiting.
From that day on, whenever asked “And do you have heavy periods?” I would reply “Oh, kind of, but I know that’s sometimes just normal, it’s normal for me”. From that appointment I kind of just coped – I had felt so stupid and embarrassed in her office I never wanted to go back. So I just battled on with my 10-14 day heavy and irregular periods and the ensuing pain. I had my implant replaced when needed and that was that – until my Cyst 2 years ago.
Following the surgery to remove my Cyst I had my implant removed, I wanted a break from the hormones I had been on for around 8 years. In the months following its removal, I was a frequent visitor in A&E, unable to manage the pain of ovulating and menstruating, both of which had suddenly started intensifying. I saw a Gynae and was placed on a list for investigatory Laparoscopic surgery, the date of this surgery was moved forwards as I became less and less able to manage the pain. In May 2017 I had a Laparoscopy in which they found and removed Endometriosis whilst inserting a Marina Coil to treat and prevent it.
To this date, I am not entirely sure where it was found or how much, all I know is that they only had 45 mins free to carry out the surgery – so they treated what they saw and no more. Laparoscopies should provide roughly 1-2 years of relief, I received 4 weeks before the familiar aches and pains started again. One year on and I am no better off than I was before the surgery. Currently, I am awaiting a referral to a new specialist, I am doing my best and learning to live as a chronic pain sufferer.
Most of all, I am educating myself.
Throughout my journey, it has felt like The Blind Leading The Blind, Dr’s know so little about the condition, it is hard to have faith in them when they have so little confidence in what they are advising. They don’t always spot the clear indications, the textbook symptoms and then once you are diagnosed, they know there is no easy answer, no magic pill. So yeah, that’s pretty much my story. There is so much more to it than a Timeline of events but I have tried to keep it as brief as possible whilst including all the important bits… I hope today is a good day for anybody reading!
Words of Advice: Be your own advocate – you have to go home and live your life. Push for a diagnosis, do research, ask your Dr any questions you have, find the treatment plans YOU want to explore. Seek support from the Endo community, find ladies to talk to for advice or just comfort. You will feel alone and overwhelmed at times but so many women understand. Mostly, be kind to yourself. Accept your limits, with them, remind yourself this is not a choice you made but an unfortunate part of your life. You can still choose how you live it.
Thank you for sharing your story Devon, I could relate with many parts. I pray that the docs find a cure, Lord knows, millions of women need it. Grace, peace, and strength unto you.
I went for my first surgery dressed in jeans. It was a day surgery, needless to say, that was a horrible idea. Dressing up afterward was not easy, my bladder was sore and my urethra was upset that a catheter had gone visiting, yet there I was trying to keep up with fashion and fit into a snug pair of jeans while anesthesia coursed through my veins. For another one of my surgeries, I wore a loose dress but I over packed and looked like I would be staying at the hospital for several weeks.
Five surgeries later, I have narrowed the contents of my bag down to necessities and comfort. Before I pack it, I ask myself is it necessary? Will it make me feel more comfortable?
Here are a few items that make it into my bag:
For the hospital stay
- Surgery documents, pre-authorization forms if you need them
- A packet of pads or panty liners in case you bleed post-op
- Toiletries (toothpaste, toothbrush, flannel, shower gel/soap, lip balm, lotion, comb/brush )
- Wet wipes to freshen up
- Low waist or high rising underwear ( granny panties) that don’t touch the incision scars, and are easy to wear and remove
- Comfortable bra preferably without an underwire
- Shoes that are easy to slip on like sandals so you don’t have to bend
- Entertainment: colors and coloring book, a book to read, music/ podcasts to listen to
- Sweater and socks if you feel cold
- A blankie / Maasai blanket
- Phone and charger
- A notebook – note down any questions you have that you want to ask the doctor before the surgery and any questions you want to ask during your post operation review. Also, you can write down the side effects of drugs to look out for when you go home.
- Snacks – if you carry any, make sure that they do not cause bloating
For the journey home
- Comfortable clothes to leave the hospital – yoga pants or a maxi dress
- A pillow
- Something to fold and put between you and the safety belt.
Confirm what your hospital gives you so that you decide if you need to add items onto this list.
As you plan for the surgery, I pray that you will experience God’s peace and that His joy will be your strength. May you know that He is right there with you through it all.
Deuteronomy 31:8 New International Version (NIV)
8 The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”
Is there something that you packed and was a lifesaver, that you’d like to share with other endo warriors? Please leave a comment below.
I idolized healing.
It was the destination, my checkbox before I could be happy, better yet, live my life. It was the proverbial ‘GO’ in Monopoly that I needed to pass before I could get $200. It was exactly what I lived for. What I craved. What I needed.
Then it didn’t happen.
Needless to say, I was crushed. Life came to a standstill, but it’s not exactly like it was moving, remember it was standing still because I was waiting for a miracle. As I stood, the clock kept ticking and tocking, and time, precious time, kept going. My dreams, those that were time sensitive, well they just fizzled out, others became forgotten and life went as it may.
#Mybestlifenow was not a hashtag I would have used, #survivor #barelysurviving were more apt for any post that I would make. Nothing was happening, well a lot was happening, I was sinking into a hole, frustrated that I was not moving forward.
It was a hard place to be.
One day I saw the light, I realized that healing may not be a destination. I took control of what I could control and started making small steps, taking responsibility for my happiness.
God has brought me a long way, and I am not where I used to be. Now I am making the most of what I have in my hands. I may not choose my cards, but I can choose to have joy. As I have obeyed, the healing has come. This time it is not the focus, it is not an idol.
Here’s to choosing joy, remaining obedient, shining your light, keeping hope alive and keeping God at His rightful place.
When we take away the shame that surrounds menstruation, girls and women will truly be able to walk in freedom.
Being born with a uterus should not be a disadvantage. Being born with a uterus should not stagnate your dreams. Being born with a uterus should not make you spend time away from school or work every month.
To commemorate Menstrual Hygiene day 2018, We For She organized an event at Ronald Ngala Primary School in Mombasa.
It was nice to see boys and girls eager to learn more about menstrual hygiene. A conversation about menstruation is one that we need to have with people of both genders. Menstruation is not optional, menstrual hygiene and health education should be prioritized.
I was invited to speak about menstrual health education and endometriosis. It was good to create awareness about endometriosis even to preteens. I urged the stakeholders present to offer comprehensive menstrual health education to the girls, including stressing the importance of understanding your hormonal functions and how to decipher your periods.
The Mombasa County Women Representative Hon Asha Mohamed took the microphone and shared her journey with Endometriosis. Her vulnerability and willingness to share her journey was beautiful. We may be one in ten women, but we are more than just a statistic. We are mothers, sisters, wives, cousins, and friends to many other men and women. Our voices matter.
I applaud you Hon Asha Mohamed. Thank you for standing with us and for amplifying our voice.
Tina Leslie of Freeedom4girls shared about period poverty. The reusable menstrual products are a great alternative for girls and women who miss school and work because of lack of sanitary products. Also, these products are environmentally friendly.
The theme of this year’s Menstrual Hygiene days was #NoMoreLimits. Here’s to girls and women achieving their dreams and living their lives to the fullest.
I had a beautiful period last month.
It was a nice shade of red, bright, alive, a good summary that my hormone levels are getting better. It was a shade that I never saw in my teenage years. It made me happy, reminded me of how jolly my little one gets when she sees Elmo. Speaking of Sesame Street, a friend told me that she calls her period ‘Elmo’ and that my friends, is how I have closed the Furchester hotel in my mind.
It flowed like a stream, which is a relief since my period has always felt like the ocean on a bad day, like trying to kayak on choppy waters in a raging storm. I told hubby how good it looked, let’s just say that was not what he was expecting me to say. I have talked about periods for a long time, but this was a different narrative.
I love talking about periods. It is one of the topics I could give a talk on without prior preparation. Talking about periods is important. If I knew that my period should be bright red and runny as a teenage girl, I would probably have gone to a hospital sooner. Instead, I suffered in shame. I was horrified by the size of the clots, and the dark purple color was really nothing to write home about.
We need to talk about periods openly and regularly. Too many girls and women are suffering in silence. So many dreams are unrealized because of menstrual health-related conditions and lack of supplies.
Monday 28th May is MH day 2018, the theme this year is #NoMoreLimits. If you are in Mombasa and you would like to meet up and have a conversation about menstrual health, please drop me a line via email@example.com
Please speak up, share your story, initiate a menstrual health and hygiene conversation with women and girls around you. Let them know that being born with a uterus should not be a disadvantage. We can all achieve our dreams.
One of the areas that Endometriosis affects women in a great way is in mental health. Endo warriors fight many psychological battles. These have to do with living with chronic pain and reduced effectiveness, infertility, miscarriages, missed opportunities especially career wise, relationship issues sometimes leading to divorce, body image concerns such as weight gain or scarring from numerous surgeries, mood problems caused by hormones gone berserk or by some of the treatments we get to manage the condition. The list is endless.
Endo Warriors find that these issues sometimes leave them in a dilemma regarding their identity. Wondering “who am I?” A mum in waiting? The sickly one? The divorcee? The fat one?
Generally, people tend to answer the identity question – who am I – with roles we play such as: I am a wife/ mother of two/ nurse/ divorcee/ the clown in the family. But is that really who we are? The problem with these descriptions is that they are all determined externally and could change any moment. The wife can become widowed or divorced, while the divorcee can get remarried. This is bound to create an identity crisis every time there is a change. Secondly, these roles come with society’s perception and expectation of how they should be played. This can also create disillusionment when we try to do things differently from the norm and the society rejects it. For example, in many of our African societies remarriage of a woman is still frowned upon even following the death of her husband.
So, what if we looked at our identity from a more intrinsic perspective? That instead of waiting for society to tell us who we are, we look inward and see what we are made of – those things that we have control over. Identify ourselves by such things as our values, our thoughts and beliefs, our likes and dislikes. For example, even though the society may mount undue pressure on an Endo Warrior married for a number of years but still trusting God for her miracle baby, she can still walk with her head held up high telling herself that her value as a person is not dependent on being a biological parent.
To achieve this level of self-awareness and confidence, our beliefs play a big role. Our thoughts and beliefs are the lenses through which we interpret the world They affect how we feel and act. Negative thought patterns will certainly make us feel sad, depressed, frustrated, overwhelmed and are likely to make us act irrationally. Some Endo Warriors end up giving in to negative thought patterns and end up feeling overwhelmed while others in the same boat rise above the struggles and end up excelling in their spaces of influence.
One healthy habit that Endo Warriors need to cultivate is guarding their thoughts. This needs to be a daily intentional action. Eventually this forms a habit and it becomes more natural to think rationally. Some of the ways to achieve this is through:
- Scheduling some down time – Incorporate quiet time as part of daily routine. Even better if this period includes spiritual nourishment like some uplifting worship music.
- Differentiate between what you have control over and what you do not – change whatever needs to be changed and quit worrying about what is not in your power to do so.
- Be kind to yourself – Acknowledge the struggles and respect the limitations that come with endo. Remember you never wished this on yourself – you just happen to be one of 176 million strong soldiers worldwide on this assignment.
- Self-Awareness – Begin to be aware of when your thoughts start to spiral down the abyss, then stop them. One trick of stopping these thought is to have a rubber band around the wrist. Each time you find yourself thinking negative thoughts, snap the rubber band and the slight pain usually jolts one to the present moment and away from the unhelpful thoughts. Try it!
Faith Osiro first shared this with Endo warriors at the March 2018 Endometriosisis Foundation of Kenya Endomarch event. She is a counsellor based in Nairobi. If you would like to get in touch with her, please reach her on 0737 861671.
I thought I was losing my mind. Instead of feeling better after the laparoscopic surgery I was feeling worse. Granted there was no pain in my abdomen, but I felt like a sedated prisoner in my own body. I desperately wanted to fight, but I was often too tired or sleepy and disinterested.
Getting out of bed was difficult, leaving the house felt impossible. I remember I would cut two pieces of paper, write ‘Yes’ on one of them and ‘No’ on the other and then pick one with my eyes closed. As I picked, I prayed that I would pick a ‘No’ so that I wouldn’t have to leave the house. Sometimes the voice inside overrode the ‘Yes’ I had picked and I would stay at home.
I was depressed, and I had no idea.
The hormonal treatment to treat Endo combined with Endo had hurled me into a dark corner, burdened my shoulders and I was forced to surrender. There was no happiness. There was no joy. Laughter was a mystery. I dragged my feet as I walked, and wondered why the nights were so short. I slept but never felt energized, and desperately wished that this aspect could manifest itself physically.
My doctor was only looking out for the physical implications of the disease. Not once did he ever ask how I was doing, psychologically and emotionally. Perhaps it wasn’t his place, but he could have brought someone to the table to shed some light on that aspect.
I was nineteen and lost at the big blue sea. I was drowning on dry land. I was fighting phsycially and paddling to stay alive. I hated it. I cried bitter tears, if we wrung my pillow we’d fill a bucket or two.
I felt alone.
I was told to pray, and I prayed. The blues, well, they remained, the dark shades made way for the lighter hues. And as time went by, I begun to see the sun in my sky. I begun to feel the warmth of it’s rays on my skin. I knew that I would be okay.
My heart goes out to Endo warriors who are grappling with this darkness. You are not alone. You do not have to walk alone. If you would like to talk to a professional please call Faith on 0737861671. She has graciously agreed to help Endo warriors navigate these choppy waters at a discounted rate.
You can reach me via firstname.lastname@example.org
You are not alone.