The first Kenyan Endo warrior sharing her story with us is Nurah Palesa. Hers is a story of pain, despair, strength, courage and hope.
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.
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.
Where it all begun
The pain begun 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 were 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.. (Sticking to white)
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… Been on a general healthy diet from the word go.. My moms 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.
To my queens and princesses I agree it is soo 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.
The black rose is my favourite flower.
You can check out Nurah’s blog here.
Thank you Nurah for sharing your story with us. You are a star!! ❤
If you would like to be featured in #TheKenyanEndoStory, please send an email to firstname.lastname@example.org and I will be in touch.