Endo Story – Devon

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.

IMG_20180608_201131_103

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.

If you would like to e-mail Devon, you can do so here and you can follow her blog.

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.

Advertisements

What To Pack in Your Hospital Bag Before Surgery

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?

What To Pack in You Bag When You Are Going For A Laparoscopy.png

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)

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.

 

 

#31 Days Of Endo ~ Reshma Maru

Day 8:)

Happy International Women’s Day.

We continue to share our stories and raise our voices as we #pressforprogress.

It’s difficult to tell the battle a woman is fighting by looking at her. Endo is an invisible force, it is tiny and mighty. It attacks from the inside out, Endo pain is something that all girls would love to live without.

Simple Photo Spring Quote Instagram Post (7).png

There is a resilience, a fire in her eyes, a desire to win that Reshma Maru has that lets you know that she is determined to beat Endo. She first shared with me her story in 2017.

My name is Reshma Maru, I am twenty-seven-years-old and I work in procurement for a furniture store. I smile when I see the face of a child – the innocence they show and their purity of heart. Joy fills my heart when I day-dream about holding my own child and cradling them close to me.

 

11742694_1015314951814750_4255853605961175927_n.jpg

 

I started my periods at the tender age of eleven. I would hear girls in schools saying that it is like a disease where if one touched a girl who had her periods it would spread, so I kept it hush from friends and even from my mother. Being the only girl brought up in an Indian family I didn’t have someone to confide in, the day that my mother found my bed sheets stained she was furious that I did not tell her I had started my periods. In the Indian culture, it is important to tell your mother so that she can explain to you that when you are on your periods you do not go to the temple or touch someone who is going. So many myths came together with this.

 

I went through years of painful periods that would last 7-8 days. Panadol was my best friend and without it, I would not last any of the days. I knew that, ahhh it is periods, they are always supposed to be painful, so it is normal.

 

The pain got worse when I was twenty-four years old. I would have the normal painful period but the pain would continue even after the periods were over. So two weeks down the line I said to myself, ‘This cannot be the period pain, it must be something I have eaten.’ I went to a general doctor and explained all my symptoms to him, and he said that it sounds like amoeba. He took a stool sample and said that he found traces of amoeba and that was a sigh of relief as I knew there are medicines to get rid of them. I was on medication and a few days after ovulation I was pain-free.

 

The next month came and I got painful periods and the same pain after the periods. This time I ignored it and took antibiotics for two weeks and voila I was back to normal. I just thought to myself that since the previous periods were painful I may have a less painful one next month. Come next month the pain was worse. I would get hot flashes, nausea, lack of appetite, and pain all over my abdomen especially my left side.

 

Since I had a medical cover at work I decided to go see a gynae and just to get things checked out as it may be a small issue, and besides since I wasn’t paying for it I didn’t have an excuse not to go. I got advise from fellow workmates on which gynae to go and see since they were using the same cover. The gynae advised me to do a blood test and a scan so that she could have a clear view of what was causing the pain. When she saw the scan report she looked at me and said ‘You have Endometriosis.’ At first, I was like ‘Huh? That is a long name to even pronounce, let alone spell.’

 

I took the prescribed medication and decided to google the sickness she had talked about. After the research, I concluded that it was a common disease so may be the Vissane that she had prescribed would cure it as the box read: specifically for Endometriosis. I took it for 6 months as I went for regular checks with the gynae and I was really really happy. Vissane suppresses your periods, so no periods = no pain for me.

 

I was three months away from my wedding and pleaded to the gynae to let me continue with the medication until my wedding and honeymoon were over. She agreed and said that I should get a baby and all these problems would disappear. I was happy that I was pain-free, able to work, plan my wedding, and run around.

IMG_2178.JPG

I actually ditched the contraceptives when I started gaining weight and getting very emotional almost every day. I started going to the gym to lose weight but after 3 sessions max and I could hardly keep up. I was always tired, my feet always hurt, my shoulders felt like someone was sitting on them, I would cry for no reason over the tinniest things. My husband would be like, ‘What is the matter? Be strong,’ and I would just look at him and just cry, and cry.

 

The next time my periods came, the painkillers did not work at all. I could feel a sharp pain like I was being stabbed on my left side, but nothing was working. I even went to work in all that pain as I waited for the painkiller to kick in. I was hoping to get distracted from the pain while I was working but that didn’t seem to help either. I rushed to my gynae and pleaded with her to do something about the pain. She injected me with stronger painkillers but nothing changed. Now helpless, at the end of my strength, I asked her, “Please just tell me anything else we can do because I don’t think I will last another day like this.” If I saw a knife that day I would have stabbed myself just to remove whatever it was that was causing the pain, as I knew exactly where it was.

 

She advised that I be admitted right away for a Laparoscopic surgery. Without knowing the details I was ready to go through it just to get out of this hell. In the evening as I was prepping myself for surgery, I started thinking ‘What is this I have agreed to do?’ but I prayed all will be well and went in for it. A surgery that was to take 2 hours ended up taking 4 hours. I came out of surgery with a numb tummy and no pain, and I said ‘Wow! I like this feeling.’

 

The pain started after I was out of hospital, I was constipated, dealing with pain  from the surgery itself, dealing with a dry throat caused by the tube they insert down your throat during the surgery, extremely emotional and hating on those who didn’t come see me in hospital including a best friend who I decided to let go of. I went back to the gynae for my report and to ask why the surgery took so long and she explained that I had a normal cyst and inside it there was an endo cyst that was growing, both the cysts measured at 5.5cm. These were on the left ovary therefore causing the excruciating pain. They were removed but since they were on my ovary the top tissues had to be removed as well, this would prolong the healing time.

 

Post-surgery, I am still struggling to join this diet plan that endo patients are asked to follow but my workmates give me support and also join me in eating right. I do not want to lose a job or give up on life because of this. Believe me, it is so hard, I lived for food and now I get told do not eat this or that. It is a struggle to find organic food, when you do find some you are too weak to cook it for yourself.

IMG_2194.JPG

But believe me nothing is worth your health. The bills that you get with medication and surgery are more expensive than just eating right and taking care of yourself. I am now hearing about different foods or herbal meds and I’m willing to give them a try.

 

This has really changed me in many ways – I am closer to God more than ever, thinking of him every day – I am more positive and really willing to help someone else through this because NOTHING is possible without the support. When you are left alone your negative thoughts echo within. Listening to someone vent is good enough for me because we all, at one point or another , want to do that.

 

I always want to help and be there for anyone going through this as no one understands your pain like a fellow endo-sister. I believe this will be a thing of the past but this can only happen if we create awareness and conduct research on what works or doesn’t work for each other.

 

What I always keep in mind is that God gives the toughest battles to those he loves the most. Let’s not give up. Always be there for someone whenever you can because time is short, let’s not run out of it!

black rose.jpg

courtesy yesofcorza.com

My favorite flower is a black rose as it is unique and rare to find just like you!!

You can connect with Reshma on Facebook and Instagram.

 

Thank you for sharing your story with us, Reshma! We pray that 2018 will be a better year. Here’s to health and many moments that make you smile.

#31 Days of Endo ~ Hadassa Trip

Day 5 🙂

It is always uplifting to read the stories of other Endo warriors who are braving through life, shining their lights and lifting others up.

Simple Photo Spring Quote Instagram Post (4).png

Editah Hadassa Trip is the founder of Waiting Wombs trust. She is walking with women whose wombs are waiting and sharing a message of hope.

She first shared her story with me in 2017.

18110630_10154691317014091_1376206121_n

After our grand wedding in 2007, I wasn’t keen on conceiving in the first 3 years. We were on honeymoon so I didn’t see any hurry. I had also lost my sister during child birth and it crushed me.

 

Fast forward to the fourth year, I experienced horrible cramps, and visited a doctor who treated me for cysts. That was the beginning of our waiting journey, and the medication process. I was put on strong hormonal medication that nearly killed me, they had to be flushed out of my system fast.

 

I experienced my first “societal punch” when someone asked me to try different positions and stop wasting time. (I never lack sober responses for such questions – trust me .)

 

We kept trying, started visiting doctors who confirmed that all was well with us.
In 2010, I had a laparoscopic surgery where the doctor removed 12 fibroids and 6 cysts. I remember asking him how so many growths could be in one petite person. I recovered and went back to my normal routine.

 

Later, a pal gave me some herbal medication that worked for her after a long waiting period. This totally affected me and resulted in fresh cysts, said the doc. Reversing the effect was a painful process.

 

In 2014, I experienced another flare of pain and ended up in the theatre again, this time for an emergency open surgery. I was diagnosed with severe Endometriosis. I was then put on the those jabs that drive you straight to menopause (at least some of us know what menopause feels like, lol!) How do our mothers handle hot flushes?
I remember one day fanning myself ( July) and a client asked me ” Madam, ni kushuta ama joto?” (Madam, are you feeling hot or did someone fart?) lol!!
Anyway, I faithfully took the medication for 6 months. This time I was confident that I had recovered and my twins would come any moment – those twins are still coming :).

 

I have since gone for six Hysterosalpingograms which is an X-Ray to see the inside of the uterus and Fallopian tubes. I’m not doing it again because the last one left me limping. I’ve been on crazy medication, used horrible herbs, and had uncomfortable procedures. At some point my hubby and I promised ourselves that we’d only visit doctors if we must. Oh, how I hate hospitals!!

 

PREGNANCY KITS

I need to mention how uncomfortable I feel buying the pregnancy kits. Knowing that it could be another 200 shillings washed down the drain. I know you understand that feeling only too well. There’s a time I was sure that the babies had at least settled in (Dr. Google can be a monster eish!). I took the tests thrice just because I wasn’t prepared for another negative result. I even tried putting on a different set of specs just in case my eyes were a problem. Call it “honest deception”. I think I cried for an hour or so after finally accepting the results. My eyes were so swollen the next day and I had to go to work. I survived .

 

Anytime I was put on hormonal medication e.g Clomid, my reaction was extreme. In one instance, I developed severe Ovarian Hyperstimulation Syndrome. I react to everything! Literally!

 

THE OPINIONS OF OTHERS

Two months ago I was upcountry. An old lady relative approached me and said ” I saw the cause of your childlessness in a vision. Give me some money and let me pray for you “. Thank God my husband was there who politely told her off.

 

Some of the uncomfortable comments I have faced as I wait are:
“What are you still waiting for? ”
“You are pretending to be happy yet you aren’t.”
“Why are you wasting your husband?”
“You keep postponing this issue thinking you’ll be young forever- shida yako!”

 

Why am I sharing this? Why am I still hopeful and waiting? Does it mean that I don’t have low moments? No. I do. I am human and a woman for this matter.
We have however accepted that children come from God. See the Bible cases where ” The Lord opened wombs and conception occurred”? I cling onto such promises. I have faith that my conception will be natural because there’s God in heaven who can do the impossible.
Doctors can talk about infertility or barrenness but I don’t buy that, I am a waiting womb. Adoption is an option for us whether our Samuel comes or not. And as we wait, we’ll make the best childless uncle and auntie by God’s grace.

 

Should The Lord in His wisdom decide to withhold this blessing from us, we’ll still trust and serve Him. Doesn’t He have good plans for us? He’ll provide the strength needed to hang on.

rose

PARTING SHOT

Let’s be encouraged dear ones. Don’t allow your current situation to define you. You are special, you are loved.

 

There may be pressure from within, from in-laws, spouses ,society and all, hang on. Even Peninah could only do so much until The Lord remembered Hannah.

If you know a woman who is waiting on the Lord for a child, you can refer her to Waiting Wombs for more information. You can connect with Hadassa directly on Facebook.

Thank you for sharing your story with us, Hadassa, may God continue to grant you grace and strength to hang on and to hold other women’s hands. May He remember you. Keep shining!

#31 Days of Endo ~ Nurah Palesa

Happy new month everybody!

March is here!!

To start us off in this series, I would like to introduce you to Nurah Palesa.

IMG_20180301_104340_723

Queen  Nurah is an endo warrior based in Kenya, she shared her story with me for the first time in 2017.

 

I am Queen Nurah, and at the age of 25 I have lived with Endometriosis for 15 years now. I run on happiness. There is no one thing that makes me happy, a combination of the things that pull my heart strings is how I live. As for my profession, let’s just say that I am a Storyteller and Poet.

IMG_20160710_120834

 

Where it all begun

Before I turned 10, the year that pain became the filter to which I would see life, I was eagerly awaiting my periods. I looked forward to it like a boy would await his ceremonial rites of passage. I wanted to see the drops of blood on my underwear and have a crazy happy dance celebrating my new life as a woman.

 

The pain began immediately I started my periods. I was sitting in the back of the class, talking as usual and ignoring what the teacher was writing on the board. Then my insides began attacking me. It felt like someone had run a knife across my abdomen over and over again. I shakily put up my hand and asked if I could go to the bathroom.

 

When I got into the cubicle, something told me to check my underwear and hoorah I had blood. But I couldn’t do the crazy happy dance, not with the pain that I was feeling.

 

I remember going to one of the “nice” female teachers and telling her I got my period and that I was in intense pain. She was nice, she showed me how to put a pad on and for the pain she said that it was normal and hot water would help. “Normal? Are you crazy, I feel like I’m dying!” I thought to myself as I gave her a look that showed I thought she was crazy.

 

Maybe two hours later, I don’t exactly remember, my mother was called because now I was wailing and “causing a scene”. Hehehe, causing a scene. At the end of the day my mom gave me Syndol. Yep, Syndol. That confirmed my suspicion that the pain I had was not normal and for the next 7 days I suffered.

 

Managing the pain

For 13 years I was subjected to excruciating pain before my periods, during my periods and 3 days after my periods. In total I was in pain 15 days out of the month.

I ended up having a cocktail of painkillers in my bags. Here is the list with what I started to what I take now:

  • Syndol (4-6 pills in an hour/day)
  • Betapyn (5-6)
  • Postan (10)
  • Brufen (10)
  • Buscopan (10-12)
  • Buscopan plus (it would land in my stomach and I would throw up immediately)
  • iBoprufen (40 mg 6, 80mg 7-8)
  • Vykadin (6)
  • And now I’m on tramadol 100mg and when the pain gets really bad I go for the shot.

And while I was on these pain meds I sometimes found that mixing them would help. And when I say help, I mean level the pain to a degree that I could function and not snap at people.

 

The pain haze of life is amazing. It changes how you look at everything and how you react. Physical pain makes life 300 times worse. Well for me. Someone else could be different. I had the worst mood swings, had a short fuse and basically I would just want to cry and be alone most of the time. I am generally a nice, gentle happy Queen, but you don’t want to make me mad when I am in pain.

 

Oh wait, did I forgot to mention that I would get high off the pain meds, lol aaaand that I was a heavy alcohol drinker. For 7 good years. The combination of alcohol and a cocktail of pain meds made the pain bearable.

 

I remember when I joined uni and my girlfriends would watch me pack my clutch bag with tampons and meds (3 strips of 10 so basically 30 pills) and they would ask if I was ok. Little did they know that I would have gone through 2 of the strips by midnight.

 

I would literally get high just to escape the pain.

 

When I was 22, fresh out of rehab (because others thought that alcohol was the problem) the pain kicked up a notch.

 

Finally, I got a diagnosis

 

Lower back pain and shoulder pain had kicked in, and I needed to know that there was a name for what I was going through. I went to see a gynaecologist and he diagnosed me with Endometriosis. I thought that finally I can get rid of the pain for good now that it’s an actual disease.

 

I went online and decided to learn all I could about my condition. That’s the type of person I am, I read and research on topics that are of interest to me. So I did what I do best; gather intel.

 

I found out that foods (which I had always known, I’m very strict with what I eat) contributed to the pain levels and there was a diet I could start. Eh….that diet did not work. In fact I ended up increasing my pain and losing even more weight.As for the endo diet, which is vegetarian I really tried. My body just didn’t accept it. And recently I discovered that diets don’t work for everyone, our blood types play a big role in the foods we need and as an O+ I need meat. I’m sticking to white meat.

 

So again I run around for another year looking for a solution and I found one. Or so I thought. I went through a Laparoscopy where The Gynaecologist lasered the extra endometrium tissue that covered my ovaries and fallopian tubes and he put a Mirena Coil so that my fertility wouldn’t be compromised. I had stage 4 of Endo at this point.

 

Relief at last

 

For the first time in 13 years I had no pain.

 

I loved my life; a zeal for it (which I still have) was born. You know when someone tells you to live life to the fullest and do what you want to do and wave your hands in the air like you don’t care?? Lol, yeah I did that for 3 good months before the pain came back.

 

Back to reality

 

As I write this I have the worst headache ever and my back and shoulders have decided to kick into level 400. The last two days have been brutal because I am ovulating and I can feel the damn egg travelling.

 

I could change my diet again or find some radical something that will help “ease or get rid of” the pain, maybe even look at the spiritual aspects of it, but my reality is that I am meant to have this pain. I’m just supposed to rise above it and live life to the fullest and that’s not an easy task.

 

Yoga helps me. And meditation. And maybe some teas here and there. Lemon, ginger and honey is amazing. I generally try and avoid junk and fast foods and sodas. I’ve been on a general healthy diet from the word go. My mom has always been conscious about food.

 

Endo and Family

My family is very open with each other; my mom and sister also have endo and my brother was told early on about our periods. The extended family is a whole different story. I like avoiding them as they disturb my positive energy fields.

 

I would love a whole football team of children lol.

 

Endo is genetic, my mom and I traced it back to her grandmother (her dads mom) so for me it doesn’t really matter if I have a daughter or son, I’m going to have to tell them asap about endo. And what they can do from the word go.

2904a179ac37bf6a8d7e326e0914756f

To my queens and princesses I agree it is so not fair that we endure this pain.

Search for your solutions and remedies. Don’t let anyone stop you. 

However do not forget to live life to the fullest. Do what makes you happy; love yourself and play in the rain.

Oh and please be kind to your sister queen / princess. Seriously, we women can be brutal to each other and it’s about time we stopped.

You can check out Nurah’s online home here.

Follow her on Twitter and Instagram.

Thank you Nurah for sharing your story with us. Keep fighting, shining and dazzling.

 

The Kenyan Endo Story: Reshma Maru

It’s difficult to tell the battle a woman is fighting by looking at her. Endo is an invisible force, it is tiny and mighty. It attacks from the inside out, Endo pain is something that all girls would love to live without.

There is a resilience, a fire in her eyes, a desire to win that Reshma has that lets you know that she is determined to beat Endo.

11742694_1015314951814750_4255853605961175927_n.jpg

Reshma Maru is a 27-year-old who works in procurement for a furniture store. She graciously shared her story with us.

What makes me smile is a face of a child-the innocence they show and so pure at heart. If there is something I can smile about, it is fantasizing about how I can hold my own child and just hold them close to me.

 

I started my periods at the tender age of 11. I would hear girls in schools saying that it is like a disease where if one touched a girl who had her periods it would spread, so I kept it hush from friends and even my mother. Being the only girl brought up in an Indian family I didn’t have someone to confide in, the day that my mother found the bed sheets stained she was furious that I did not tell her I had started my periods. In the Indian culture it is important to tell your mother so that she can explain to you that when you are on your periods you do not go to the temple or touch someone who is going. So many myths came together with this.

 

I went through years of painful periods that would last 7-8 days. Panadol was my best friend and without it I would not last any of the days, I just knew that ahhh its periods they are always supposed to be painful, so it is normal.

 

The pain got worse when I was 24 years old. I would have the normal painful period but the pain would continue even after the periods were over. So two weeks down the line I was like ‘This cannot be period pain, it must be something I have eaten.’ I went to a general doctor and explained all my symptoms to him, and he said that it sounds like amoeba. He took a stool sample and said that he found traces of amoeba and that was a sigh of relief as I knew there are medicines to get rid of them. I was on medication and a few days after ovulation I was pain free.

 

The next month came and I got painful periods and the same pain after the periods. This time I ignored it and took antibiotics for two weeks and voila I was back to normal. I just thought to myself that since the previous periods were painful I may have a less painful one next month. Come next month the pain was worse. I would get hot flashes, nausea, lack of appetite, and pain all over my abdomen especially my left side.

 

Since I had a medical cover at work I decided to go see a gyno and just get things checked out as it may be a small issue and besides since I wasn’t for it why not. I got advise from fellow workmates on which gyno to go see since they were using the same. The gyno advised I do a blood test and a scan so that she could have a clear view of what was causing the pain. When she saw the scan report she looked at me and said you have been diagnosed with Endometriosis. At first I was like ‘Huh? that is a long name to even pronounce let alone spell.’

 

I took the prescribed medication and decided to google the sickness she had talked about. After the research, I concluded that it was a common disease so may be the Vissane that she had prescribed would cure it as the box read specially for Endometriosis. I took it for 6 months as I went for regular checks with the gyno and I was really really happy. Vissane suppresses your periods, so no periods = no pain for me.

 

I was three months away from my wedding and pleaded to the gyno for me to continue the medication until my wedding and honey moon were over. She agreed and said that I should get a baby and all these problems should disappear. I was happy that I was pain free, able to work, plan my wedding, run around here and there.

IMG_2178.JPG

I actually ditched the contraceptives when I started gaining weight and getting very emotional almost every day. I started going to the gym to lose weight but after 3 sessions max and I could hardly keep up. I was always tired, my feet always hurt, my shoulders felt like someone was sitting on them, I would cry for no reason over the tinniest things. My husband would be like, ‘What is the matter be strong,’ and I would just look at him and just cry and cry.

 

This time time when my periods came, the pain killers did not work at all. I could feel the pain like I was being stabbed on my left side but nothing was working. I even went to work in all that pain just waiting for the painkiller to kick in and may be get distracted from the pain while working but nothing worked. I rushed to my gyno and pleaded she does something about the pain. She injected me with stronger painkillers but nothing changed. All helpless I now asked her, “Please just tell me anything else we can do because I don’t think I will last a day like this.” If I saw a knife that day I would have stabbed myself just to remove whatever it was causing the pain as I knew exactly where it was.

 

She advised that I be admitted right away for a Laparoscopic surgery. Without knowing the details I was ready to go through it just to pass through this hell. In the evening as I was prepping myself for surgery, I started thinking ‘What is this I have agreed to do?’ but I prayed all will be well and went for it. A surgery that was to take 2 hours ended up taking 4 hours. I came out of surgery with a numb tummy and no pain I was like ‘Wow! I like this feeling.’

 

The pain started after I was out of hospital, I was constipated, healing from the surgery itself, dealing with a dry throat caused by the tube they insert down your throat during the surgery, extremely emotional and hating on those who didn’t come see me in hospital including a Best friend who I decided to let go of. I went back to the gyno for my report and to ask why the surgery took so long and she explained that I had a normal cyst and inside that there was now an endo cyst growing both being 5.5cm. These were on the left ovary therefore causing the excoriating pain. They were removed but since they were on my ovary the top tissues were removed as well so healing would take some time.

 

Post-surgery, I am still struggling to join this diet plan that endo patients are asked to follow but my work mates give me support and also join me in eating right. I do not want to lose a job or give up on life because of this. Believe me it is so hard, I lived for food and now I get told do not eat this or that. You think like where do I start looking for organic food and even when you do find some you are too weak to cook it for yourself.

IMG_2194.JPG

But believe me nothing is worth your health. The bills that you get with medication and surgery are more expensive than just eating right and taking care of yourself. I am now hearing of foods or herbal meds and I’m willing to give them a try.

 

This has really changed me in many ways – I am closer to God more than ever, thinking of him everyday – I am more positive and really willing to help someone else through this because NOTHING is possible without the support. When you are left alone your get negative thoughts play in. Even just listening to someone vent is good enough for me because we all at one point want to do that.

 

I always want to help and be there for anyone going through this as no one understands your pain like a fellow endo-sister. I believe this will be a thing of the past but this can only happen if we create awareness and research on what works or doesn’t work for each other.

 

What I always keep in mind that God gives the toughest battles to those he loves the most. Let’s not give up and always be there for someone whenever you can because time is short, let’s not run out of it!

black rose.jpg

courtesy yesofcorza.com

My favorite flower is a black rose as it is unique and rare to find just like you!!

You can connect with Reshma on:

Facebook – www.facebook.com/reshma.maru

Instagram –https://www.instagram.com/drop.dead_diva/

Are you an Endowarrior living in Kenya?

Would you be interested in joining a community of women who support each other in this journey?

Do you suspect that you could have Endometriosis and are wondering where to start?

If you answered yes, please leave me a comment or send me an email via yellowendoflower@gmail.com and I will be in touch.

Despite the adversity and circumstances that surround us, we will still bloom and dazzle the world with our presence and beauty.

We are flowers; delicate, resilient and strong.

The Workout Hiatus Has Come To An End

I’m determined to get my sexy back. ‘Where had she gone to?’ you ask, well, I seem to have lost her somewhere between being pregnant and lactating. I’ve been pregnant twice in two years, my body has ballooned, carried life and found a new form. The thing that I have learned about my body is that it’ll never quite be the same. But that’s not an excuse to let it go.

The WorkoutHiatus HasCome To An End

The gym is not really for me. The last time I seriously decided to work out I ended up in an operating theater having my second laparoscopy to remove endometriosis adhesion and a burst appendix. After that surgery, I took the doctor’s advice seriously. For a long time, I made ‘take it easy’ a way of life, but I miss being fit. Climbing Mt Kilimanjaro and taking part in a triathlon are still on my bucket list.

After I had my first born, I was the heaviest I’ve ever been. I woke up one day and decided things had to change. I stopped taking sugar, dairy and reduced my wheat consumption. I worked out at home and I was able to lose the Lupride weight that I had been carrying around for years. Tiffany Rothe, God bless her, really helped me work out and I loved the results.

After the second baby, I’ve taken longer to start working out. There was so much going on and I wanted to make sure that the wound has healed. But I’m back! Yesterday was my first day and I felt great. I’m doing low impact workouts that won’t leave me feeling inflamed. I had a spring in my step yesterday, I was feeling on top of the world. Today, on the other hand, I’m feeling muscles that I didn’t know existed. Lactic acid is at work. But I know that my body will be grateful, well, eventually.

Before you begin a regime please consult your doctor. Go easy on your body and choose a workout that suits your needs. What works for one woman may not work for you. Listen to your body and enjoy your new regime.

Blessings,

Ess