Not always blue sky after all...

Although I've decided to tell my story, when I had to write Chapter 6, I have to admit I was haunted by that traumatic part. It wasn't the surgeries, nor the pain... but the ileocolostomy thing which had given me the most horrible memory. When it came to that, I got stuck. I never finished writing it, just yet. I'll get through it and continue writing, but I'd like to take my time.

I'd like to make peace with that part of this journey first.

Well, I guess no matter how optimistic you are, there's always a down time. Guess I'm having it right now. Not always a blue sky, but the clouds will chill the anger and the rain will wash away the fear... (^_~)

Read on >>

Mission Baby: Start!

Exactly 3 months after 2nd surgery. I've had 3 periods (1st painful - 2nd no pain - 3rd a very mild pain), and 3 meetings with the doc. So far so good. Painful period has become and hopefully will forever be history.

Now I'm ready for the main program; a fertility mission. Honestly we've never been seriously trying to make me conceive - I got sick immediately after honeymoon, remember? However, with my disease, we need this program to not waste anymore time. Hurry before it comes back... Find out and treat any other obstacles which might exist as soon as possible.

Pentoxyfilin has been dropped. There are only 2 names listed on this month presciption; Naturol 400iu 2x1 and folic acid 1x1.

The next thing I need to do is HSG (hysterosalpingogram) on the 9th day of my cycle.... so it's still days from now since my next period is expected to come on around June 22. This is an X-ray test to see whether or not I have tubal blockage. And of course, as part of the program, my hubby will have to have a sperm analysis... something which I'm still wondering how the procedure will be like more than my HSG... (^_^)p

So now I'm anxious with the results even long before they're taken... My mind is fully loaded with what ifs.

Scares me like hell, but I have to move on and have no other choice. The road has been taken, where both the length and the end are still mystery... Mission baby has just started... Wish me luck, everyone! (^_~)

Read on >>

Chapter 5: What was taken, What was left

[Warning! This post contains a picture which may not be suitable for general viewing. If you think you are not ready, do NOT read on]

Some splash of black began to appear, voices slipped through my ears. Wake up already? so I thought, oh please, I want more sleep...

I heard some voices told me that the operation was done, or things like that. Saw faces. Then heard a doc told the other doc not to wake me up so early, to let me sleep a bit more... which I immediately agreed in my heart (^_^);

Yeah, I remembered when EKG thing going on before the surgery, I overheard the doc called his senior for some advices, then got "do not wake her up immediately after" as one of them.

So I saw things in black and white, some people talked to me, some noises... I lost track of time, but I heard voices speaking of break fasting so it was afternoon. I think not until the next day was I more aware of my surroundings.

It was an ICU room. No family member allowed to enter, they could only see me through the wide window far on my right. Yeah, I remember I gave them a thumb up just to show them I was okay (^_^);;

What was annoying about being in ICU was the oxygen devices. I had oxygen tube in my throat. That device makes a loud sound when we don't breath. My device made that noise several times even when I thought I breathed. So ICU is a very noisy room. I had that throat oxygen removed, replaced by an oxygen mask. I asked the doc to change it, then I got an oxygen tube - that little tube in the nose, you know... When I asked the nurse to remove it, she refused as she said that every patient in ICU are considered in crisis so no device's removed. The thing is, I'm claustrophobic. When I had those devices I felt like I was trapped in something so I barely control my breath.

There are 2 big things happened to me in that very room.

What was taken from my belly.
I think the tumor (what later on is called endo cyst) is not shown in that pic, though.

First, I was told that a mass of tumor had been taken out of my belly. Together with some part of my intestine and colon. I also figured out that my stomach was flat. Okay, a cause of the pain had gone together with the pain itself... that was the good news.

Second, this was the shocking part. That I had ileocolostomy...

I had no idea what that was, not until the next morning a nurse bathed me. That was the first time I saw it. Something indescribably disgusting on my right belly.

So it was not over yet...

to be continued...

Read on >>

Chapter 4: I Could Finally Sleep

September 14, 2008

Lying in an Emergency Unit bed, I was anxious. Merely because the bed was very hard that I couldn't simply find a good position without feeling a back pain. The pain in my stomach was just enough without anything insufficient to make it worse...

I was about to have surgery. What surgery, I didn't know. Not wise (and please, everybody, do not ever be ignorance to what surgery you are going to have), but I wasn't really capable of thinking nor deciding anything for myself.

A lot of stuff going on that night.

I was put NGT (Naso Gastro Tube) from my nose and fluid which I noticed to be feces rushing out. Catheter in. Intravenous feeding in. No pain killer, the doc there said that a pain killer may affect diagnose or something.

3-position gastro X-ray performed, blood test, urine test, and USG... basically everything needed for operation. About that USG... I'll have another word on that later. The main reason why I HATE and have become very sarcastic to obgyn residents.

I could not sleep, at all. In order to endure such a pain and discomfort, I urged myself to listen closely to another case in that Emergency Room. There was a woman whose ring was stuck causing pain in her finger. That ring should be removed. That case was rather funny, even to me who practically could not take any funny story. The conversations between the docs and the doc to the patient gave me a little smile. Any regular procedure to release that ring had been done, none worked.

To be honest, until now, I'm still curious what happened to her after... (^_^);

September 15, 2008

Morning came, a digestive surgeon arrived and had me checked. Okay, another RT... I think I had countless RTs (^_^)p He was pretty upset due to the fact that I came the previous week with a sign of obstruction (from the previous week X-ray) yet no decent treatment. Now that my condition was ugly for an operation, it worsen the risk. Anyway, there was only one thing in my mind... "Doc, PLEASE PUT ME INTO SLEEP!!"

I was taken to Emergency Operating Room, changed clothes, having EKG first, before then put on the operating table.

Right in front of the operating room area,
you can see how big my stomach was


I needed a last minute EKG,
I'm not sure whether it was before or after

Only remember a nurse tapped my left leg, and told me to pray. And she leaned on my left leg made me feel discomfort and distracted my pray (^_^);

Then everything went totally black. (If someone says that blackness would come bit by bit when anaesthetic in, it's a lie... It's just a sudden blackness and emptiness before you know it)

I could finally sleep...

to be continued...

Read on >>

2 Months After 2nd Surgery - Nice

I've finally decided to stick to my doc, and switch clinic when I have to. Hermina is surely more expensive than Klinik Yasmin, but I can still handle it. My doc did the op, he fully understands my condition, and so far he's done a great job handling my case... so what would I expect more of a doc? (With a little advice from dr. F, thanks doc! :D )

So yesterday I went to RS Hermina mom-&-children hospital. Nice cozy place, indeed.

The bill includes hot coffee/tea and snacks (fried ones, at that time)... but I personally don't think it's a good idea to serve those kinds of food to women with endo (orange/apple juice would be way better :P), so yeah, I didn't take any. Comfortable couch, large flat tv, clean toilet... Okay, so now I can sleep nicer while waiting... (^_^)

Arrived at 2.30 pm, I was number 3. Hmm... so here dr. A's got quite a lot of patients... coz when I called earlier that day, there were already 22 people booked . But of course, first come first serve. No. 3's fine. Only in half an hour, those lovely couches were fully occupied... wow!

After a little of sleep (I think I always fall asleep while waiting for anything :P), it was the moment of truth. My heart's pounding... Am I okay? Am I okay?

After some interviews, a VT, USG... it was then declared that I was so far so good...! My vagina and cervic (where I had rectovaginal endo and adhenomyosis), uterus, both ovaries... looked as good as it should... I was sooo relieved.

I was prescribed another 400mg pentoxyfilline per day. I wasn't given any hormonal drugs, but some vitamins instead... folic acid and Naturol 400iu. It's going to be for one month before my next visit.

Only God knows how I feel every time I have to go see him.

Anxious.

I think that's why I always appeared pale each time I walked in to his room. Pale, cold, ducked. But as soon as he looked at me in a very happy face, I'd started to feel warmer and calmer... it's all good then.

A doc's mood will be immediately transferred to the patient. I remember as clear as a glass his expression when I was about to be operated. Even when he didn't say a thing, I knew that the risk was high, the hope was little... not that I wouldn't survive or sort, but whether or not he could recondition my reproduction organ in order for me to live like a normal woman.

So when his eyes are brighter than the afternoon sky, then I'll know that I am just fine... That hope is still alive...

Read on >>

In The Search For Endocrinologist

Finding a good endocrinologist was not an easy task. Thanks to a digestive surgeon to whom I went in order to have ileocolostomy closure advice, I then found this doc.

I'm pretty pleased with him. I mean, after a series of horrible residents (yeah, on the second thought... why did I even ever bother to go see residents for such illness? hurt me a lot how they treated me) and one gynecologist - who failed to recognize my endo - dr. A quickly discovered my rectovaginal endo and decided a treatment.

I should have scheduled a meeting with him, yet he's too busy for a doc and to make it harder, he now seems to rarely come to the clinic I used to go to - Yasmin. The closest schedule in Yasmin will be this Saturday, which sounds not very promising. The closest to another clinic - Hermina - will be tomorrow.

So now, I'm so confused of what to do next. Should I stick with him, thus go to another clinic... which I suspect a little more expensive than the previous one...? Or, should I just go to Yasmin, and switch doctor?

I need a continuity. And on the top of it, I need to trust a doc. So sticking with my endocrinologist is my first option. But, if he's so hard to go see, maybe I should consider another...

@.@

Read on >>

1st Period After Operation #2

A week after I was back home, I went to meet my endocrinologist. He examined the area he had operated, and he said it was so far so good. He prescribed me with pentoxifylline for 1 month. He told me to come again in one month to see what will happen.

I had my 1st period after the second surgery on April 7. As I've mentioned in the post about my symptoms, I've been free from period pain for about 3 months. So I was shocked that in this period, I felt so much pain.

That was the kind of pain I've never felt before.

It was on the left and right side of my lower abdomen. A heavy pain, really. Constantly in the 1st day. Heavy bleeding in the 1st and 2nd day. Less in the 3rd day.

The 4th day, yet another pain and heavy bleeding. The pain was lessen, though.

Then stopped.

Maybe the heavy bleeding was caused by the drug I was taking. After a little reading, pentoxifylline was meant to be so. But how about the pain?

Tomorrow I'm going to the clinic. And I'm so scared...

Update: The meeting has been canceled, scheduled on next Saturday :(

Read on >>

Chapter 3: A Rushing Week

The week after I went back from the hospital was running like a flash.

I melt down again, was taken to Emergency Unit at Rumah Sakit Cipto Mangunkusumo/RSCM (Cipto Mangunkusumo Hospital), given medicine, sent home. The next day I went to polyclinic at the same hospital, was given YAL, sent home. I was told to have CT scan, however, since the purpose and the urgency of the test were not clearly stated to me... I just couldn't do that. I mean, with such a high price of test, I needed more than just "You better take CT scan, just to make sure"! Daaa...? So I just went home with confusion and disappointment.

None of those medication worked.

I went to an acupuncturist a friend recommended. I was told that I was hexed or something, then he handed me over to his brother who was said to be the one with this expertise. Okay, I know it was pretty insane, but, after seeing many doctors and 2 hospitals with no explanation, what else did I expect? So I happened to try one of his treatment at home, but decided not to continue coz I was too weak to go out to see him... with the fact that my dad wasn't impressed with the idea of hexing thing.

Another try, another failure.

The worst days were yet to come...

Saturday, September 13, 2008. I had not slept for about 2 days. I could not eat at all for the past few days. I began to vomit strange looking brownish green fluid which I suspected to be feces (it was later confirmed). So at that point my stomach was already loaded with feces.

That night, a kyai (spiritualist) a friend recommended was called to come to my house. He did some ritual which actually barely gave an impact. But at that point, anything seemed worth to try.

The next day, nothing improved. My parents and husband asked me to be taken to RSCM again, but I was so skeptical to hospital. I've been there and they gave nothing, I said. To be honest, I was more worried about money, silly me. After RS Harum robbed me, I knew that we were lacked of money. I knew we couldn't afford anymore medical treatment whatsoever.

So I asked my husband to call that kyai once again... I didn't (and don't) know for sure why I did that. Maybe I just wanted him to pray for me... Maybe I just wanted to give up...

But he couldn't come. Everything seemed to shift from then on, I think it was God's hands.

Night fell. I couldn't sleep for everytime I fell asleep for a second the pain immediately woke me up. I was weak, cold, pale. To the point that my family couldn't take it anymore, then they took me to RSCM without me being fully aware.

Sunday 14, I arrived at the Emergency Unit, once again...

to be continued...

Read on >>

Chapter 2: 8 Million For Nothing

The name of the hospital is Rumah Sakit Harum (Harum Hospital), located in Kalimalang, East Jakarta.

My first encounter with hospital.

Entering the Emergency Unit almost midnight, the doctor there first diagnosed me with obstruction which then changed it into gastric pain.

I could not think, I was only craving for anything that could ease the pain. Before I knew it, I was put into a ward.

It was a 3rd class room, a pretty ugly room I must say. My parents wanted to transfer me into a 2nd class room, but the hospital said it was full. Left with no option but staying in that ugly room or moving into 1st class room, my parents decided to take the second option. My husband agreed.

It all turned out that taking me to that hospital was a huge mistake. Not only the price was unbelievably high (yeah coz I had no option for a decent room other than to be put into the 1st class), none of the doctors there ever found out my disease, while I was kept given medication after medication.

The lab tests I took were odd. First day, blood test. Second day, USG. Third day, X-ray. Hey... why didn't they perform all at the same day so they could find out a clue faster? Yet, after a barium X-ray, I was diagnosed with appendicitis.

We began to question and discuss all of these between us.

After a strange "urge" for appendicitis surgery, but mainly a shocking bill, I insisted to go home.

I told the doctor that I felt better, that I could defecate a little... a total lie... so that he would stop giving me medicine and let me go home.

And I went home after throwing away 8 million rupiahs (apprx. US$ 800... considerably quite huge amount of money for room and medication only) for 5 days.

8 Million for nothing.

Yet, I still didn't know what was going on with my body, and the pain remained.

to be continued...

Read on >>

Chapter 1: When The Honeymoon Was Over

I got married in July 2008. It was when the sweet wonderful honeymoon days were over, I got sick... and worse, and worse...

As though my newly built world was falling apart right before my eyes. There were times when I thought I was going to die, for the pain was totally unbearable yet no clue at all of what disease I was carrying.

It started when the abdominal pain which I usually endured during the first 2 days of my period didn't go away even after my period was over. Also did the heavy gas and bloating.

Around mid of August I went to a doctor, and of course I was given medication for gastric pain. I got an acupuncture treatment which gave me a relieve for one day, before the pain appeared again. I went back to the same doctor to tell him that the pain remained, was given another acupuncture which last a few hours. Then again, the pain came back.

I started to feel nausea and vomit. Hardly eat. It was when I realized that I had not gone to the toilet for defecation for a few days. I think I didn't release gas as well.

I became weaker for anything went through my mouth was immediately thrown up. My stomach was getting bigger. With all the pain, I was taken to a nearby hospital.

to be continued...

Read on >>

Operation #1: Summary

I intend to make a story instead of brief one, coz there are a lot things I want to say, so... why not first making a summary of it?

Since I'm not a person with any medical background whatsoever, below summary may not written in good medical terms... rather my words, really (^_^)p Should any mistakes recognized, please do leave a comment. (^_~)

Date in: September 14, 2008 - Date out: September 26, 2008
Date of operation: September 15, 2008

Pre-operation Diagnose: Ileo obstruction, suspect rectal tumor
Post-operation Diagnose: Ileo obstruction, ileocaecal tumor, ileo perforation

Summary:
- Pre-op: no defecation for 2 weeks, vomit, nausea, pain in the whole abdomen, heavy bloating
- Operation: peritonitis, ileo perforation found, ileocecal mass found, mass found between uterus and rectum causing adhesion.

Treatment:
1. Laparotomy exploration
2. Ileocaecal tumor resection
3. Ileum and colon resection
2. Ileocolostomy

Pathological Analysis: +/- 5cm mass matches with external endometriosis

Read on >>

My [Confusing] Endo Symptoms

My period symptoms regarding colon/saecum and rectovaginal endo are rather different from the common endometriosis symptoms. Some doctors even neglected what I was trying to say about my own symptoms, thus I even found a doctor who refused to accept that I had endometriosis even after a pathological analysis just because I didn't have that sort of common symptoms. Yeah, some doctors are just that close-minded.

But recently I found out that my symptoms actually match to what is called gastrointestinal endometriosis symptoms, which I have jotted down in my previous post. It's just that this type of endo is quite rare (I don't know in what circumstances it's called rare, I just repeated what a doctor told me, I've never done any research or found any statistic), thus not many doctors have knowledge about it.

I've tried to recall my memories to list all symptoms I had and am having during menstruation. Here's my list:

1. Early periods:
I had my first menstruation at about 12 years old. In my early periods, in the first year, I had heavy crams and pain in the pelvic. I even fainted in the first 2 or 3 periods. I didn't take pain-killer medicine often. It got lessened through times, though. After the first year, although I can still feel the pain in the first 2 or 3 days, I could still do daily activities... although lying down in bed was always the best... (^_^)p

2. At my 20s:
Then at some point, I think it was when I was in college, the symptoms changed. I felt pain in my upper belly, located 2 fingers above belly button. It felt exactly the same like when you are having a gastric pain.
It only occurred in the first 2-3 days of my period. It didn't go away with any usual pills for gastric pain.

3. The last a couple of years, before Operation #1:
My abdominal pain got worse and worse. Together with heavy gas and bloating, nausea, vomit, low back pain, funny feeling in my rectum (it feels as though you want to go to the toilet to defecate), and fatigue.
They all came together during the first 2 days of my period. The 1st day is worse.
I even often took a day-off from work (The company I was working at has a regulation to let women taking a day off in their 1st day of their period. I was very thankful for that, though it might have made me least popular by taking a day off every month).
Come to really think of it, I think I also had diarrhea and constipation every once and awhile.

4. The last period right before Operation #1:
My abdominal pain didn't disappear even after my period was over. It stayed, got worse. I could not defecate, and I think I could not release gas either.
My stomach was getting bigger and bigger as all defecation and gases were stuck there.
I had a colon obstruction... then I was put into Operation #1.

5. After Operation #1:
October 2008: My abdominal pain, heavy gas and bloating disappeared. But I still felt a low back pain, heavy nausea, and vomit. And there I felt a slightly pelvic pain.
November 2008: The pelvic pain and vomit were gone. Low back pain and nausea remained.
December 2009: Nausea was gone. A slight low back pain.
January-February-March 2009: No symptoms at all. For the first time ever in my life, I was completely free of pain. It felt as though I didn't have a period. I felt so light as a feather.

But did it mean I was free from endo? No.
Because during those months, there were one symptom remained; funny feeling in my rectum. In Feb and March, I had rectal bleeding in the range of few hours before menstruation.

And even though I was completely free of pelvic pain or any kind of pain whatsoever, it was in these moments, an ovarian endo cyst emerged...

Read on >>

The Common & Not-So-Common Endo Symptoms

The most popular symptom of endometriosis is pelvic pain. The doctors I've met, they relied on this one particular symptom alone to determine whether I had endometriosis or not... which most of them ended up with the word "no" when I said I don't have this symptom at the moment. The fact is, there are quite many symptoms related to endometriosis. And what makes it even more complicated is that each woman may have different symptoms, some women even don't have any symptoms at all.

From some reliable sources, I'd like to list down some common and not-so common endo symptoms. They are:


1. The most common symptoms:
- Acute pelvic pain
- Pain before and during menstruation
- Painful intercourse
- Lower back pain
- Heavy and/or irregular menstruation
- Difficulty conceiving (infertility)
- Irregular bowel movements (diarrhea or constipation)
- Irregular vaginal or uterine bleeding
- Fatigue

2. Gastrointestinal endometriosis symptoms:
- Rectal bleeding during menstruation
- Rectal pain
- Increased gas and bloating
- Vomiting
- Nausea
- Abdominal cramping
- Diarrhea
- Constipation
- Tailbone pain

3. Other symptoms for other endo location:
- Urinary tract endo: blood in urine, painful or burning urination, tenderness around the kidneys, urinary frequency, retention or urgency.
- Lung and chest endo: coughing up of blood during mentruation, accumulation of air or gas in the chest cavity, constricting chest pain and/or shoulder pain, collection of blood and/or pulmonary nodule in chest cavity (revealed under testing), shortness of breath.

As you can now see, most people (and doctors) are familiar with Symptoms No. 1 which are directly related to reproductive organs where endo cyst can usually be found. But endo can infiltrate deeper than just reproductive organs therefore the symptoms may differ a bit. Some symptoms can be misled into other illnesses or only can be proven after a surgery for other reason (that is exactly my case here).

And that is how this endo thing becomes a tricky sneaky ghost...

:: Sources, for deeper analysis:
- http://www.endo-resolved.com/
- http://endofound.org/

Read on >>

What Is Endometriosis?

First, you have to bear in mind that endo is a serious illness.

Endo affects all aspects in women's life. From the regular heavy pain to one surgery after another, which cause serious disability in doing daily activities. From the financial collapse due to a series of surgeries and medication, to the fear of infertility issue. These could lead to both physical and mental break down.

So what is Endo actually?

Endometriosis is a condition where tissue similar to the lining of the uterus, which should only be located inside the uterus, is found elsewhere in the body.

That lining of the uterus which is called Endometrium, normally reacts with hormones produced in the body and every month the endometrium builds up with blood cells and other chemicals to prepare for pregnancy. When pregnancy does not occur then the endometrium sheds this blood thus women have a period.

For some women, these endometrium cells somehow find their way to other part of the body, stay there, and react with hormones as well. Each month they break down and bleed, but since they have nowhere to go to leave the body, they stay and grow to become an endo cyst.

It may take months or even years before a serious pain develops. Many women suspect that there is something wrong with her period when they feel that the pain is getting worse and worse.

With time, the disease will grow and begin to do more damage. It then leads to scar tissue formation, adhesions, bowel problems, which affect general health.

Read on >>

Introducing Me & Endometriosis

I was diagnosed with Deep Infiltrating Endometriosis very very late. I was so weak that I was put into the operating room with merely 50% chance of surviving.

In that 1st surgery, an endo cyst had developed in my cecum (the early part of colon) and caused a severe obstruction. I could not defecate for a couple of weeks, could barely eat for several days, could not sleep for a whole 3 days as the pain in my stomach was unbearable. I was badly malnourished and all of my vital signs were ugly.

And there I had my 1st laparotomy in September 2008. I had an ileocolostomy as a result.

I survived that 8-hour operation, and then again, had another laparatomy in March 2009, for an ileocolostomy closure, and a removal of rectovaginal and ovarian endo cysts.

Endometriosis is a very very tricky illness. It might be not as dangerous as cancer but that doesn't lessen the complication. When that endo cyst infiltrates too deep, you simply cannot imagine what can happen to you. When people with endo usually can be put into laparoscopy, I had 2 times of laparotomy instead. When people with certain illness can be 100% cured after surgery, there's no such guarantee in endo cases, which lead us women with endo going through surgery after surgery...

I'll share what happened and happening to me, what I used to know and what I know now, what I did, what I'm doing to overcome this ghost... The ghost which is going to haunt me forever, but sorry ghost, I'm not afraid...

Read on >>

Share Ur Endo Story

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Just leave ur words in the comment box below
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Link Exchange

Link Market - Free Link Exchange, Link Swap and Link Trade Directory
Have you ever tried to exchange links, swap links, or trade links? Was it hard? Use link market instead; - it is easy to use, free and very smart. It will save you hours of work.

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