Diary of a Woman with Endometriosis

Endometriosis is a mysterious condition that commonly occurs in ovaries, it has no known causes, yet affects many women out there. Before its diagnosis, one could suffer terrible mentral cramps, after its diagnosis, terrible mood swings. This is my account of how endometriosis has affected MY life and how it is continuing to affect ME and those around me. How it has shaped my life and I hope to bring about the awareness of this condition as it affects more women out there then we know it.

Wednesday, September 25, 2013

Silver Lining Always from our beloved God

had a disturbing morning with a person whom i have very negative vibes with.

i really wanted to ignore her 1 and only 'complain' about us when we had a whole tonnes against her.

she sent one of my favourite nurse to remind me again!

i din understand her purpose.

after some futile defence, i broke down.

all i wanted was to be a good mother to give good nutrition to my child. after almost 6 moths of been bed bound, the least we can do is to feed her with some decent dinner since i cannot keep making people come with good lunch for me.

and she had to blow things up in my face. not once but twice.

she is mean. i don't like her way of doing things.

i had to calm down very quickly to avoid affecting my precious child.

God was very loving. brought laughter to me for the rest of the night and even some good news of a higher HB count than i had imagined.
not to mention a loving husband and an extended family where love is felt.
thank you God for the lovely radio station too!
i am learning to love you more each day, simply because your love is all encompassing.
i pray one day that i can forgive that mean person through God's grace.

Tuesday, August 27, 2013

Challenging Pregnancy: The Bleeding

When we first learnt of our pregnancy, we were totally overjoyed.

No words, language or music can describe our emotions on that faithful night 20 weeks ago.

And that evening, started our new journey into pre-parenthood. And more painfully, our extended "vacation" in hospital.

In my mind, I was going to stay for a really short time in the hospital like my sis who had some bleeding in her first trimester. I was at week 9, how bad can it be? I asked myself. At most week 12 lah. When we celebrate the end of the first trimester, surely that's when most pregnancy stabilizes and we can return home.

Every 10 days or so, we'll experience some bleeding.

First time, doc's clinic was still open, so we got a 2nd scan by him and he noticed something with the hematoma and left things as they were with me on valium twice a day.

I was sleeping well and eating well. And sitting up often on my bed to read, eat even play Lego with hubby.

Second bleeding happened on a Sat night (Week 12). We were having dinner and I was seated upright. Hubby was trying to tell me to eat for 2. While I was really not feeling up to a bigger appetite. So we had a sort of arguement. I felt a gush of blood coming out between my legs and informed the nurses. The Staff Nurse on duty (apparently also the head of the ward) came. She was kinda in shock when we saw my pad being full.  We assured her that this was not the first time we bled. With trembling hands she insists on taking a test for amiontic fluid. She showed us an indicator stick to test for amniotic fluid that was yellow before the swap and turned brown to black after the swap. All she said was it will change colour and it did. She started to dish out instructions to her colleagues and they all leapt into a frenzy. Which got us really worried, watching the array of activities going on, we lost our cool and notion of "norm". By the time we got wheeled down to labor ward (which was way too early for my pregnancy at that point), I was in tears. Uncertain at what is happening and what all the ho ha was about.
We want to highlight here that:
1. The correct procedure for taking the swap was to clean all blood from the vagina & cervix to avoid contamination of the swap stick;
2. The correct color change for presence of amniotic fluid was BLUE, not brown nor black.
Clearly she made a misdiagnoisis but insisted that she was right. We were too shocked by her reaction and the flow of events that took place to react or reason with her.

My gynea had to cut short a very high profile dinner to come back to attend to us. When he entered the room, he asked:"What happened?"
I burst into tears, sharking my head replying:"I don't know, we were just having dinner."
He quickly rolled up his sleeves, put on his gloves and started doing a cervical examination. He checked that the cervix was ok, he did some cleaning and requested for a whole battery of tests for bacteria, yeast infection; blood tests for HB, CRP etc etc. With a tiny monitor screen he was able to detect a healthy baby heart beat and he was finally assured that our baby was OK. There was sufficient amniotic fluid around the foetus.

The bleeding stopped and I was put on the Ventolin drip at 40mg/hr, gave me severe breathing problems and the nurses decreased it to 30mg/hr and I felt instantly better. I was allowed to go to the bathroom the next day and that was when a blood clot came out. Was not too big, around the size of my pinky, looks dried up. Nurses say its ok and we went back to full bed rest for the next couple of days before shifting back to normal ward. I was also prescribed antibiotics as a precaution to fight possible vaginal infections that could have caused the bleeding.

My CRP count was at 44 when the norm was 10. considered super high lah. So gynea recommended an infectious disease specialist to look into it. He was away that few days and I saw his buddy doctor instead. She came wearing a face mask as if she was unwell herself, after a brief examination, she recommended for me to go on a course of antibiotics on drip to eradicate the high CRP. Which totally din make sense to me, but since she was the specialist doctor in-charge, I had to go along with it. I enquired if the course of antibiotics will have any adverse effects on my baby, guess what was HER response?
"No tests were conducted on pregnant mothers as no pregnant women will be willing to subject themselves to these tests." How assuring.

Third bleeding occurred not long after our 2nd bleeding, around 5 days later. That afternoon, I had some friends who came to visit from lunch time all the way till tea time. I sat upright to chat and laugh the whole afternoon. Then we went over to see gynea and spent another 2 hours waiting for our turn to see him. He declared that we should try to get off the ventolin drip since our condition has stablized and seems like the hematoma was absent during our scan. Yipee! When we returned to the room, our bedsheets were not changed. So had to spend another half an hour to wait for the change.

The moment I sat on the edge of my bed, I felt a gush of blood coming out between my legs. Thankfully nurse Yoga was with me and I told her that I can feel bleeding! It was a huge gush. Yoga quickly got me a bed pan to sit on and it was like an open tap filling up the pan. Then the bleeding came to halt after soaking my gown & the bed. I felt a clot trying to come out. But it was too huge to exit without gravitational forces. And there was nothing Yoga can do. By now, gynea was alerted and instructions was to go back to labour ward for closer examinations. Knowing the procedure, we were alot more relaxed as Yoga tried to clean me up, she was very assuring. Repeatedly telling me that everything will be alright and baby will be fine. We were relaxed and got wheeled into the labor on the same soiled bed.

Labor ward nurses did a preliminary examination and went out of the curtains to update gynea on what they saw. They returned to me to inform me that they will bring me to a private room for gynea to have a better examination. The room offers more privacy and is better equipped. Not having a clue to what is on their mind, I was delighted that I got the opportunity to be in a private room! During the shift, hubby was waiting near the nurses' station and the conversation that he overheard gave him cold chills down his back! The nurses were certain that the bump that was bulging between my legs was our fetal HEAD! Hence the shift into the delivery suite that was operation-ready!

Once again, gynea entered the room with "What happened?"
Shaking my head, my reply was again, "I don't know, we just returned back to the ward from your clinic and it happened!"
He examined me and pressed some part of my abdomen and I felt the release of the blood clot. Gynea said"I got it out." And gave my hubby a look. Hubby was unable to decipher what does that mean! In his mind.... was that my baby???
I was oblivious to the "speculations" and insisted on knowing how big the clot was. Finally, clinic nurse Ann relented and showed me the size using her hands. I was relieved and commented that its the same size as the one we had when we were home!
Hubby was still in shock, he really thought that we've lost our baby until he burst out, "What is the IT?"
Gynea assured him that its just the blood clot. Did the scan again and baby seems fine.
Went back on Ventolin drip again 20mg/hr.

This time, I was really mindful of how my actions, bed rest can affect my body to keep bleeding. So I decided to lie as flat as possible for as much as possible. I no longer sat up to eat, just eat while lying down, as low as I can. No more messing around, just full dedication to bed rest and nurse my baby.
And things were stable. Happiness is stability.




Sunday, June 16, 2013

We are finally Pregnant!

Yes! We are!

10 years of trying and finally we have received the precious gift of life. We are thankful!!

We survived endometrosis with several surgeries and have been free from the condition for the past 7 years.

However, another condition developed during this time. Adenomyosis.
This one is alot more serious in my opinion than endo. Enlarged uterine walls. From the medical perspective, the only way to resolve it was to operate to physically cut out the enlarged tissues to allow the uterus to remain as "normal" size.

Had a 5 hour surgery to do that 7 years ago along with the removal of my special 3 layer endometrotic cyst in my remaining ovary.

It was an awakening surgery. Made me determined not to get back into the OT again.

Over the years, we sought opinions on conception throughout the world. Did tests, sent reports to several "renowned" doctors who were specialists in fertility. Their reply, to put it curtly:"Forget it."

2 years ago, I sought to lead a healthy life instead. Be contented with what we have. Be healthy in mind, body and spirit. Also helped that I met a lady who was very focused on leading a full life regardless of her situation. Learnt inner strength from her.

Amazing, we were blessed with a baby despite all the odds!

How awesome is our God! He makes all things possible!

I found it hard to believe initially as there was litle changes to the body.

Once 2nd trimester started, my abdomen started to grow and we can see more of our baby. Its just amazing how God allowed all this to happen.

I fell in love with our little baby the first time I met baby! We could see some features like limbs, head and body quite clearly!! Love at first sight! Super cute to witness growth so spontaneously and so rapidly too!

Sunday, March 07, 2010

Trusting God when I don't understand

Its hard to trust someone or something that you cannot quite see can you?

My 1st encounter with Christ was in a very charismatic set up, after the usual ra-ra to get new comers to a corner. I was sat face to face with a firm evangelist. She told me that I can trust Jesus with 101% of my life. If I was on the edge of a cliff, all I need to do is reach out and call out to Christ and He'll be there to save me. She asked me if I was ready to jump off the cliff. I stared at her with disbelief. Christ as my saviour was such a novel concept, I barely knew Him. How can I trust someone whom I do not know with my life?

After a long journey of meeting Christ and journeying in His love, I've come to know Him and the wonders He does for me. I got my baptism without family objections (coming from a gigantic ancestral family of taoism believers, this was a miracle). The enormous sense of love that I've felt during our wedding was phenomena. I was deeply touched by the Holy Spirit. Yes, I can feel Him. And I'm so grateful. Whenever I meet a challenging situation in our marriage, I'll recall that beautiful day when we celebrate our covenant with God as our witness. I am comforted that God is the one in charge, He will turn situations into learning points. He will be the one who decides how our future will be and He will never let us down. And all the toughness of the situation will just melt away.

For those who have been following this blog, I've been challenged medically & physically. We've been trying to have our own child for the past 6 years of our marriage. Yet, only till now then I truly know that I can rely on God's great love and plans for us, for our future, only He knows best what's good for us.

There were many occasions when my rational mind asks "why?"

But its only truly till now that I can let go of my rational mind and trust in God to take care of me. He knows the best for me. And I've learnt to trust God when I don't understand. And still learning.

Thank you God for your love for me. Thank you for loving me despite my ignorance, my foolishness, my stubbornness. Thank you for showing me time and time again how much you love me. Thank you for giving me life's greatest cushions (friends) to me. For with their humanly support, I can be a better person as I learn to be more like Christ. Thank you for building all the learning steps for me. I love you God.


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Sunday, March 07, 2010
Trusting God when I don't understand
by Rick Warren
"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." Proverbs 3:5-6 (NIV)
When the children of Israel were finally set free from Egypt after 400 years of slavery, they started marching out to freedom and the first thing they came to was the Red Sea. There were impassable mountain ranges on two sides of them, the sea in front of them.

Behind them, in hot pursuit, was the Egyptian army because the Pharaoh had changed his mind about letting them go. The path before the Israelites looked like a dead end.

But God knew exactly what He wanted to do. He had not made a mistake. He could see what they could not see. He opened the Red Sea and they walked through to safety. Years later, the Israelites looked back and sang, "Your road led by a pathway through the sea—a pathway no one knew was there!" (Psalm 77:19 LB).

You may be facing a dead end right now—financial, emotional, relational—but God can see a path that you don't know about. If you will trust God and keep on moving in faith, even when you don't see a way, He will make a way.

It will become more understandable as you head down the path he sets before you, but understanding is not a requirement for you to start down the path. Proverbs 4:18 says, "The path of the righteous is like the first gleam of dawn, shining brighter till the full light of day" (NIV). One day you will stand in the full light of eternity and view the big picture. You'll see God's purpose behind the path He specifically chose for you.

What do I do in the meantime? You do what Proverbs 3 says: "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." What does He mean "don't lean on your own understanding"? You don't need to try to figure it out. In truth, you're not going to understand most of the things that happen in your life until you get to heaven.

Be patient. God knows what He's doing. God knows what's best for you. He can see the end result. You can't. All those problems, heartaches, difficulties and delays -- all the things that make you ask "why" -- one day it will all be clear in the light of God's love.

But for now, we're learning to trust God.

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Friday, January 29, 2010

Why am I Bothered?

Different people have different ways of handling different situations.

Some prefer to run away, some prefer to face them head on.

I belong to the latter group, while I seems to be surrounded by people belonging to the former group.

Does it mean that if a nasty experience between two persons never gets mentioned nor brought up again, things can get back to the way they were?

I dun believe so, at least it doesn't work that way for me.

More than 6 months ago, I had a nasty encounter with a used-to-be close friend. It was so nasty because there was nothing I can do to convince him that I had nothing to do with his misunderstanding of me. It was nasty to be misunderstood, to be accused of an action which I never did nor will do. It was nasty because it came from a used-to-be close friend. If it was an acquaintance, perhaps I can understand that that person dun really understand me well enough to know that I can never hurt another person that way. It was terribly nasty because the accusation did not stop at one or two or three messages. It came fast & furious in greater numbers.

After the 2nd nasty sms, I decided to have a neutral response to not spin the relationship any worse than it already was in. I thought that a cooling period was a good idea to let each of us reflect on what could have been mis-interpreted.

But no, that was not enough and the nasty messages kept coming, regardless of how much I try to reconcile. This person was not listening. It became evident that I was not good enough for him as a his friend. Alot of nasty accusations came out to tell me that I'm simply NOT good enough.

So I accepted things that way. Since I cannot convince him that I've not done what he accused me of. And since I've not been a friend to him in his way.

I prayed hard and often, I was prompted by the Holy Spirit to reconcile asap. To trash all the unhappiness away instead of letting them fester. Not wanting to push this person further away, I used a softer approach, I emailed him with very short and precise messages to ask him out for reconciliation at his own time.

Months later, there were still no response from him. So I decided to pluck up my courage to call him. Against all my discomforts, not knowing how the conversation will turn out to be. I wanted to listen to the Holy Spirit to mend this broken bridge. Sadly, this friend's response was, he was not ready to face me one to one. Group ok.

I'm not sure what does this mean. I have never been in this situation before.

Am I that fearful? Ha ha

So months later, in a group-party, I dare not even talk to him one-one because I'm not sure if that constituent facing me alone!
Such awkwardness.

Another few weeks had passed and I decided to organize another group gathering, nope, he did not respond to my 1st invite. Not giving up, I re-send my invitation, this time with a "I dunno if I can make it" reply. Fine. So on that day itself, I had to re-invite again. At least this time, I got a definite "Sorry I'm not coming" reply.

Honest to God, I believed I've tried beyond my comfort zones to close the gap.

But I cannot do this alone.

Why am I so bothered? Because when this person needs help or prayers, he will request for it. Not once but multiple times!

MAN!

I remembered the last time he went on a risky overseas work trip and I was so terribly worried that I prayed so hard till I was shaken in tears. Our church friends was wondering what had happened to me. i was just so worried and wanted him to be protected. That was all.

Thankfully, he returned safely from his trip. During which he said that he felt that he had special protection by the Holy Spirit thanks to the prayers from everyone of us. I said a huge prayer of thanks too upon hearing that. Indeed it was a testimonial of how powerful our prayers can be.

Years later, this friend forgot about the prayers but faulted me for not remembering the dates accurately for his risky assignment.

I was hurt. Very hurt.

I was convinced that when someone don't really like you, they'll pick up the smallest, the most insignificant things about you to be used as bullets against you.

Is there such a need? Between two human beings? Let alone between two believers in God?

Today, after he has made multiple requests for prayers & loaded my inbox with unnecessary information, I am trying to wonder if I'm considered a friend or not.

I feel disgusted to be treated like this, I'm a friend when I'm needed. I'm a nobody or worse a busybody when he needs someone to vent out his frustrations.

This person has created too much negative energy in me. I think it could be time to let him go.

Tuesday, December 08, 2009

Myths & Misconceptions with Endometriosis

Wow, I've learnt something new today!!

I've learnt that the myth about Endometriosis only occurs in women in their 30s or 40s is not true! It was due to the fact that in the olden days before laparoscopy was available, large open surgeries were discouraged amongst younger patients. So they only cut up older women, hence, the belief (with surgical "prove") that Endometriosis only occurs in older women!

After the proliferation of laparoscopy, it became convenient to operate on more women of younger ages, more cases of younger women with Endometriosis were identified. Thus showing another myth that an increased in younger women that were affected by it!

What a double wrong!

For the past 12 years, I thought that my body was older than ME. Because I had a condition that was MEANT for older women.

Aiyah, how wrong I was and even MORE so with the gyneas that tells me so!

SEE, we can never never know everything about our body. Even when its our own. Even when doctors study decades to be specialists, they can never be fully in control of an intricately designed body.

So please do NOT believe 100% of what doctors tell you.

And always always have a 2nd opinion!

more information can be found on the Endometriosis.org website

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Wednesday, October 28, 2009

Getting sensitive or getting numbed?

I cannot figure if the "truth" & facts are finally dawning onto me. Or that I'm still struggling with the "unfairness" of my situation.

There are days when I stopped looking toward building our own family because the chances seems so slim. Its probably easier to strike TOTO first prize then for it to happen.

Then when people asked, teased us about setting up our family. All the emotions of having to tell them surfs to the surface of my emotions. Yes, I still do feel left out. I feel left behind in this world where everyone, almost everyone feels that its natural to set up a family after a few years of marriage. I want to too! I have been wanting that since a young adult before marriage! But it does seems like it wont happen to me.

I feel its soooo unfair, where others take it for granted, while I prayed, worked, spent years with doctors on this and yet, I'm still like on the same spot. Never moved forward a single bit. While others makes it look so easy to just have a family when they want to. *BLEAH*

I feel scared too. I'm scared out of the shit of meself.

I know that God provides. He has provided before and is still providing.

Am I praying for the wrong thing? Or wrong way? Or or or or or or or.....

The million of questions will continue to linger on until we get a clear clear clear clear word from the big guy up there.