Back to endo life

Hey! It had been so long since I come over this place (basically I wont update if everything went well) yuppp! Well..things went well on my post surgery journey. I was blessed that my life moved on without hot flush, sudden stabbing pain, night sweats, changing clothes like a mad lady. I was happy about my new life, met new friends, explored new places, good food, new job skills, nice colleagues, long distance relationship and home sick on and off. 

Things eventually changed in late of June until I found myself having blood cysts again. (2 cysts on left ovary ) (total=7cm blood cysts which were larger than the previous 6cm cyst) i could remember that i wasn't ready to accept the fact that the endo monster came back so fast and my mind was all about surgery when the radiologist said " hey girl! There were two shadow on the left ovary" 

When i met the doctor, i asked him calmly about my situation and his expression was exactly the same with the expression last year when he found my cyst get larger and had no choice but to go for surgery. I smiled at him and said "so what should we do now?doctor?" (I know it's useless to show my upset face to him) "alright! We can try medication to see how it goes" fyi, i had taken different medication for endo (2 different types of injections plus one type of pill) and now another type of pill. 

I couldn't remember how much pain i had throughout the whole endo journey last year (from diagnosis to recovery) and now i feel like things happened last year repeating again (medication with positive thinking, side effects of medication, going to hospital very often, long hours working, encouragement and love from friends and family, different supplements or treatments recommended by friends or relatives) and somehow i wanted to shout or scream to myself quietly by saying " i'm exhausted!! Really tired of this shit" 

People around me would be so kind to remind me to be positive always. i had been positively to find different ways to cure myself (on diet, websites, books in library, videos, do something i like, trying to think i'm a normal person and forget about the sickness) id been positively for 9 months and now this positive energy needs to continue until the battle lasts. but if you really do research on this endo monster, basically there is no cure for it. 

Anyway i believe i'm strong. I wont let this disease beat me down. No pain no gain. 

I still got so much love from family, bf and friends right:)

Danazol obvious side effects encountered: weight gain, muscle cramps (almost everyday) 

Cheers:)

Love

Jer

Xxx

Post-Surgery Recovery Period (I was hospitalized againn!!!!!)

Hello my dear friends:)) Sorry for not updating much lately. I had my surgery in removing left ovarian cyst in the early of September and I was relieved that the healing of the scar was good! (No pain at all but the appearance is still dark in brownish color) Doctor had prescribed me a cream called Dermatix in order to moisturize, flatten and soften the scar and a small pea size amount was sufficient to cover 6-inch scar. (Due to my laziness and lack of discipline, I don't apply it very often)

Other than having hot flush all the times due to the hormone injection (Somehow I got tired of changing clothes on and off especially my country was summer all year round), things were going great until I realized my immune system was low in terms of visiting doctor three times in a month due to common sickness. I visited doctor in late of September twice due to mild fever, flu and cold. In mid of October I visited doctor due to cough and fever. He prescribed me some medicines without antibiotics (cause I didn't have sore throat) but that time my fever was 37.7. After taking the pills prescribed by doctor, I felt so much better but things started to go so wrong at night. I vomited 5 times (one time in hospital) and I had my fever from 38 to 38.5 to 39.5. So dad sent me to hospital at 3am in the morning. 

Before admitted to hospital, we planned to go for 24 hours clinic for treatment but unfortunately, we couldn't find one. (Seriously?!!!) So we ended up in the same hospital where I had my surgery last month. Lol! (Not again!) Due to high fever, joints and muscles pain, cough,vomiting, I had no choice but to stay overnight for treatment. I had my blood withdrawn to test whether it was dengue and I was then given glucose drip, injections for fever and vomiting. 

The next morning, my fever subsided to 37 then to 36.5 to 36. It was good! No vomiting and no fever yayy! Just that my throat was so dry and metallic taste in my mouth. I had given two medicines (cough mixture and Panadols) three times a day and I didn't have much appetite and didn't eat much. Doctor came to me and say no dengue was found and I had to do another test (a nasal swab to test Influenza) Due to no vomiting, I was not given any injection for it! I thought I could go home that day so I could spend my birthday at home (at least not in the hospital) but doctor didn't allow me and asked me to stay for another night (damnnn, but in order to claim insurance, i need to be hospitalized at least for 24 hours) okayy! Alright! Things didn't turn up so well that I vomited twice in the middle of night (I did remember to make my birthday wish earlier this year before 12am cause I thought of sleeping early but unfortunately I had problems sleeping throughout the night) so yeahh! Happy birthday to Me :D 

The next morning which was my birthday, I was happy to find out that doctor let me discharge and I didn't have any fever. The process of my medical bill payment was so long and I could only discharge at around 2pm. Due to vomiting so much, my throat was completely dry and painful and had the burning sensation at my throat and it was hard to swallow (I vomited at 9am in the morning) and it was really unwell (it got worse than before,what?!) So mum requested to change doctor (we found out that he's neurologist) and we requested to see specialist (ENT) Unfortunately the specialist only came after 5pm so we decided to discharge from hospital and looked for another specialist at clinic. (Thank God we made the right choice cause the doctor was really good! He was so patient and professional) I was really unwell that time due to the soreness at my throat and feeling nausea and also I had high fever again (38) After having his medicine and resting at home, I'm feeling so much better now though there is still metallic taste in my mouth but my cough is getting lesser. Due to having so many medicines lately, my face looks pale, hot flush is getting serious that I can sweat anytime anywhere, and I'm thinner!!! (I'm trying hard to get back my healthy body by having enough of rest, eat clean, drink more water, doing simple exercise and stay positive) 

So..that was my first experience spending my birthday in hospital although it was not a great way to celebrate but sometimes, shits do happen beyond your control and out of your expectation and the only way we could do is to accept and stay strong:) 

Hereby, I really feel sorry for my parents especially my mum for taking care of me in hospital overnight (I pray that my future post is not about hospitalization again) and the unconditional love from them to send me to hospital at midnight. I also wanted to thank for my boyfriend for his understanding (I screwed up his effort to make me happy) and and another best friend (I screwed up her plan as well) 

(Dermatix-advanced scar formula for scar healing)

(One of my favourite masterpiece that I ever colored, that's what I do during free time)

(36 color pencils from faber-castell)

(Glucose drip was given)

(The tube was inserted into my vein)

(I couldn't move around and that was the view to see outside world loll)

(Birthday gift surprise from my parents!!:D yayyyy!)

(I got a pretty pinky hair dryer for my birthday!! Thank you boyfriend)

It is health that is real wealth, and not pieces of gold and silver -Ghandi


Stay healthy, happy and positive loveliess!!



Love,
Jer

Step into the last option list

Sadly, things didn’t work out as what I expected. I had a terrible stabbing pain again that I couldn’t get out of my bed. (Crap! Again!!) I lied on my bed screaming and shouting on and off that I thought I would feel better but the pain didn’t go away. (That lasted for more than one hour). So I went back to visit my gynae (Coincidently that day I was supposed to visit him to have my second month medication on Duphaston). I could see his eyebrow muscles are tensing up and told me that the pain could be caused by liquid leaking from the cyst. (meaning the cyst could be ruptured) The saddest thing was my left ovarian cyst had grown larger into 6+cm and another smaller right ovarian cyst was found. (Oh my Lord! How could this happen to me??!!) Anyway, I was given medical leave and asked to stay on bed for three days and I had to monitor the progress of the pain myself. The hope for the perseverance in improving my condition using medication had shattered into pieces when my gynae told me that I had no choice but to go for surgery (that was the last option he could do for me). I’d spent 8 months to battle with dirty evil endo monster in my ovary and I was confused and sad whether I had made the right choice previously to have surgery right away so I wouldn’t have so much pain with the side effects of injections and pills or I believed that surgery was not an option and I could get better with other alternative treatments. There was once when mum asked me “Do you regret with the choice of not doing surgery way before that” and I said “No regret, mum”. I didn’t have much time to think whether I was right or wrong but was busy preparing myself for surgery. (I remembered my first surgery done in 20 years ago when I was 5 years old)

My surgery date was set on 1^st of September 2015 around 9 am in the morning. The type of surgery that I would be doing was laparotomy (surgical procedure involving larger incision) instead of key hole surgery aka laparoscopy (involving tiny incision and insert tiny instruments and camera to remove tissue). Thus, the recovery would be longer. I had my blood test done by a very friendly nurse and body temperature checked that I had mild fever. I had my bowel preparation to empty my bowels. I had a lovely call from my bestie to cheer me up and I was dressed in surgery suit. So after all the procedures being performed, I was sent to waiting room and waited for half an hour before my surgery started. My parents were not allowed to enter and had no choice but to wait outside. (Poor mama and papaL) I didn’t feel alone as there were two patients next to me.(an old lady and a malay man) I was shivering in cold (FYI my cousin told me that the low temperature was to kill bacteria). There was nurse coming on her way to check my name and other info and another lady came to me and she was an anesthesiologist. After all the torturing waiting, finally it was my turn and I was sent to the operating theatre to be slaughtered. (LOL) I saw my gynae walking towards me and said “Hello! How are you? You will be fine!” and I was under general anesthesia.

I was not sure whether I had any dreams but I felt I was breathless and choking with tears when I was woken up by the anesthesiologist lady and my gynae. (the lady was standing on my left and gynae standing on my right). I felt something punching on my lower abdomen and the pain was actually coming from the wound (OYEA! I forgot I had my surgery) and I was asked to rest for half hour before being sent back to my ward and was questioned with my pain levels and other information. I had three pain killer injections (maximum doses doc could give) due to my pain tolerance was too low. After all the procedures being done and finally I was able to see my parents and rest in the ward.

I stayed for two nights and I had the toughest two nights in my life. I lost a job on the first day of my surgery (I got a job previously so I quitted but due to my surgery the company couldn’t wait for my recovery and I was jobless) It was pretty amusing that a pregnant Indian lady next to my bed cried for so many times due to pain and worries for her baby and her own health condition and me myself cried for so many times due to losing a job that I really looking forward. Anyway, the toughest person ever was my mum (she insisted to sleep with me for two nights and took very good care of me) The worst pain ever that I ever experienced was changing the wound and also had flames stuck somewhere in my throat to cough it out and also laugh.(I tried not to laugh but smile) I was very happy to receive flower and fruit basket from the lovelies and warm regards from family and friends. The left ovarian cyst (also named as chocolate cyst) was finally removed and I saw a round red color egg liked shape (like red meat internal organ) in a plastic bag and that was the evil endo monster, my left ovarian cyst. The right ovarian cyst was very small and the doctor removed it during surgery. Sample of my chocolate cyst was sent for testing and it took about two weeks to know the result.

The second day of my post-surgery, I was given another injection called Lupron 22.5mg and was injected into muscle once every 3 months. (no period for 3 months) This injection used to treat prostate cancer (not only endo) and had some unwanted side effects that I encountered like tiredness or weakness, joint pain, hot flush, nausea, numbness and was quite suffering to have pain at both areas at the same time (my wound and my injection site). I was given pain killers and antibiotics and I was amazed by my appetite that I could eat much that I expected. I was then discharged and given MC for a month and told to follow up two weeks later. My recovery in 2 weeks was good (although I walked like a turtle that myself couldn’t stand of) and the wound was nicely healed. The report shown no malignancy was found and the interpretation from the report shown that it was endometriotic cyst. So!! I’M OFFICIALLY a part of ENDOMETRIOSIS MEMBER from that time onwards (YAY OR NAY, I’m officially yellow sister!) and I was told to follow up 3 months later. I was advised to get pregnant (if I found the right person) as the endo monster could be coming back again in months/years and I was not encouraged to have surgery again. (I don’t want that again!!) Thank God the stitches at my wound could dissolve themselves naturally without removing manually. (Thank God!!!!)

(left ovarian cyst was growing larger and larger..sighh)

(I took a picture before my surgery)

(Look at the evil endo monster ovarian cyst) (6cm)

(Pretty right??!)

(saline drip after my surgery)

(dinner set in the hospital)

(Healthy breakfast on bed during my post-surgery recovery period)

From the journey, I………

• Can feel how suffer it is to go through post-surgery period when having hard time doing everything like walking, sitting, sleeping, bathing (couldn’t imagine how hard it is for an elderly grandma/or pa to encounter surgery)
• Get to know a lady who had same condition with me (same injection as well) and the cyst came back after the injection stopped and it grew bigger every month. She did 6 operations in 10 years. (omy ><) (trying to keep believing that things will work out and be happy)
• Look into 5 misconceptions about endometriosis 
• (a) It's all in your head (go and check if you experienced the symptoms)
• (b) It's contagious (definitely NO!)
• (c) Pregnancy will cure endo (some doctors did ask me to get pregnant asap, maybe it works!)
• (d) Painful periods are normal 
• (e) Hysterectomy will cure endo (there is no cure and endo monsters can develop outside the uterus)

Anyway, here I am, sharing my endo journey with you guys and don't forget to help me check your boobies (for breast cancer awareness) and remember that having severe period pain is NOT NORMAL. Do visit your doctor if necessary :)

Have a nice day!

Love,

Jer 

Endometriosis Treatment

The real treatment started with an injection called Zoladex 3.6mg and initially I thought it was injected at my arm but I was like omgg to know it was injected at my belly. (NOOOOO!! No choice but I had to do it) I was relieved after the injection was done as the pain was not that bad as I expected. (thanks to my doctor, his skill was really good and I guessed his age was around 68-70.)

Zoladex contains goserelin acetate that prevents the production of certain types of hormones in the body. It is used to treat prostate or breast cancers which are sensitive to hormones. It took me quite a long time to take the injection at the pharmacy department as the injection was costly. I was given with Zoladex every 28 days for 3 months (no period for 3 months).There was time when I walked slower than old grandma especially on the first day of treatment due to the needle punching pain from injection site. I also encountered other side effects such as hot flushes, increase sweating, breast enlargement, vaginal dryness, nausea, mood swings, injection site problems. (p.s: I couldn’t believe that I have menopause symptoms at the age of 25+ haha! So please be nice to your mom as she is having hard time alone that no one understands)

So I started Zoladex treatment in March. In April 2015, I had my second treatment and the result for my first injection was alright. (4+cm-5cm) I encountered severe stabbing pain for twice in March and April that I was not able to get out of bed and my life saver was painkiller (PONSTAN). I realized that there were certain food that made these stabbing pain that I assumed such as soymilk, miso soup, natto, milk, cakes. (you know how much I love soymilk and cakes!) In May 2015, I had my third also my last injection and the result for my second injection was alright (4+cm-5cm). It was quite disappointing that my second injection was not working but I didn’t give up on hope. So I went for third jab. In June 2015, the cyst was found to be smaller and flattened (3+cm if not mistaken) and I was blessed and so happy for my perseverance (Do not give up, the beginning is always the hardest)

My period came back and doctor suggested me to undergo oral medication named Duphaston due to my condition was much stable. I started the medication on 26^th of July (stated in my pill reminder) and it was vital to take two tablets a day for 3 months continuously without missing dose. (I had to follow up every month). FYI Duphaston is a synthetic progesterone, used to treat a variety of conditions that are the result of a lack of progesterone including menstrual disorders and endometriosis, transgender hormone therapy and others. (No period again!) The side effects I encountered were nausea, bloating, hot flush and dizziness. It was important not to miss the dose so I installed an app called pill reminder on my phone. I set alarm at 10am and 7pm everyday on phone to remind me but I didn't follow that way (prefer using memory from my brain tissues and cells) 

(Zoladex 3.6mg)

(Largest syringe that I eva seen!) (image taken from instagram)

(Zoladex implat was inserted into the skin of upper stomach) (image taken from instagram)

(my second injection was not working but I didn’t give up on hope)

(HAHA!! That was ME!!) (image taken from instagram)

(Result for my third and last injection was good! yayy!!)

(undergo oral medication treatment named Duphaston, 3 boxes for one month supply) 

(That was my pill reminder on phone reminding me not to miss dose everyday)

(I changed my diet for not consuming foods like chicken and pork, soybean, milk, cold drinks, egg and I had become a pescetarian)  

From the journey, I.......

• Look into endo diet foods to omit like wheat base foods, red meats, dairy, soy foods, additives, refined sugars, preservatives, fried food, alcohol, convenience foods, gluten foods and so many while doctor will say “ You can eat anything you like!”
• Used to ask myself “ why me?!” when I suffered from stabbing pain or side effects from injections and pills but the best thing I can tell is (1.get pain killer or try to bear with the pain 2. Be positive and tough times don’t last 3.if you lived through this horror, then you can take the next thing that comes along)
• Realize that is not easy to deal with when having a partner or family member who suffers from sickness. (Sometimes end up having to cancel plans due to pain, cope with the stress like what to cook for dinner, and many more)
• Finds that endometriosis MAY be auto-immune disease (immune system attacks the body’s own tissues) so is vital to choose the right supplement
• Had negative comments on the hormone treatments that they would mess up my hormone system and suggested me to try alternative ways like using supplement, yoga, tai-chi, herbal medicine and at the same time quit from work.
• Wanted to say to endo monster “ You changed my life and you helped me to stay strong!”
• Again and again, truly appreciate the positive encouragements, love, warm support from my family members, boyfriend and friends.

Have a nice day :)

Love,

Jer

Endo-Living Journey

On 19th January 2015, I was diagnosed with an ovarian cyst at my left ovary (3.59cm) and a breast lump (25.2mm x 5.3mm x 7.6mm) at my left breast. I was asked to have another ultrasound at my breast and the result was multi-lobulated fibroadenoma or fat necrosis. (Ps: To all beautiful ladies out there, please check your boobies regularly for potential signs of breast cancer) I had the most breast exams examined by three physicians in a day. I was also suggested to have surgery to remove ovarian cyst as doctor suspected that it could be malignant.

One week later, I went to another gynae for second opinion and the cyst grew larger than 4cm (less than 5cm) and I had CA125 blood test and the number was high. (Ps: I did some reading that CA125 could be absent when disease was present, or levels could be high when no disease or no malignant disease existed) i was told surgery was not needed with ovarian cyst less than 5cm but follow up monitoring was essential.

In February 2015, my ovarian cyst grew larger than 5cm and that was the time I started to know more about endometriosis. I was assumed to have endometriosis due to dysmenorrhea (painful periods/menstrual cramps) Facts: Endometriosis is a disorder in which tissue that normally lines the uterus grows outside the uterus. The tissue can be found on the ovaries, intestines, lungs, or other part of organs. This disease is very common but little understood disease and it affects one in ten women worldwide. (Ps: I found out that there was no cure and could last for years or be lifelong) My gynae suggested me to either go for oral medication, hormone injections, or excision surgery.

It took so much effort to hide my health problems from my parents as it was not the right time. (Ps: I wanted them to enjoy a wonderful Chinese New Year without worrying and freaking out) but unfortunately they managed to know somehow. My aunt recommended me to go for another doctor in the state she was living at and she was a female gynae. She found out that I had 4-5cm blood cyst (didn't mention about endometriosis) and surprisingly she told me to wait for the cyst to rupture and it would disappear naturally and I rolled my eyes like " Doctor, what if it ruptured and the pain could be terrible and i heard is very risky???!!!" and she said "Dear, if you encountered these symptoms, please do send yourself to emergency department" and my aunty suggested that I could quit my job and rest at home as if asking me to wait for the cyst to rupture and could be recovering after all. I decided to go back home to discuss with my parents. 

In March 2015, I had a terrible stabbing pain which turned out that I couldn't move around and only could stay in my bed. The pain continued for quite a long time and i had no choice but to take breakfast and pain killer in my bed and took emergency leave from work. I had encountered stabbing pain on and off previously (not as serious as this time!) and stabbing pain was one of the common endo symptoms, other than that including nausea, ripping, bloating, cramps, throbbing, tiredness, and others. I used to shout out due to stabbing pain during work (lasted for few secs) and my colleague would be staring at me for few secs and then we went back for work and I found all these pretty amusing. There were days where nothing could make me laugh or smile. Sorry for waffling that much hee! Back to my topic, so i went to see gynae in my hometown with my parents (that was the first time they accompanied me) and the doctor explained them about my condition patiently and we made a decision to go for injection instead of surgery. (Ps: at that time, the doctor said it could work with injection but not guaranteed to shrink the cyst but no harm to try. Plus endo could be returned within 1 or 2 years after surgery and I put the surgery in my last option list)

(That was my breast lump)

(That was my left ovarian cyst)

(Msg between me and my boyfriend after telling him about my health condition)

From the journey, I ….

• Know more about the endometriosis disease through articles, websites, facebook and instagram, not only experiencing the symptoms and pain by myself alone but many people out there are battling the same disease with me and I am not alone. I also find out that March Endometriosis Awareness takes place across the globe during the month of March to raise awareness.
•   Feel that living with an invisible illness is so hard that less people will understand as we don’t look sick at all
• Feel that it is super wrong not to tell my parents about my health condition at the very first place
• Received different suggestions from relatives, family members and friends in overcoming my health conditions like (a. straight away go for surgery b. doctors are commercialize, they diagnose the disease but the only person to overcome all these is myself so no surgery, go for natural alternative and stay happy and positive c. listen to doctor’s suggestion, injection or pills maybe? But not surgery)
•  Thought of having breast cancer and ovarian cancer at the same time (breast lump and ovarian cyst were found in the same day) and overly obsessing in finding information about the cancer symptoms and had my breast check every day. (started to appreciate things and people around me)
• Truly appreciate the positive encouragements from my family members, boyfriend and friends.
• Was having a hard time handling this invisible illness that I had to work a lot (less manpower in my working place) and hiding my health condition in the first two months away from parents.
•   Feel that different doctors have different treatments and opinions. Thus it is vital to make decision only when emotions are calm
•  Realize that when the mind is cluttered with negativity, crying can make us feel better (but not too much) and have to realize that life is a series of ups and downs and we have to focus on solutions and talking to friends and families can be helpful!
• Try to be positive. (pain is real, so is hope)

Have a good day! :D

Love 

Jer

Fighting with Endometriosis

Hello beautiful ladies and gents! I never thought of blogging actually (due to lack of motivation heee!) but I wanted to come up with something about my journey with endometriosis which aims to create awareness of it and also empowers women who have endometriosis that we are not alone.                                        

If anyone of you lovely ladies encountered symptoms like

• painful periods or heavy periods
• pain in the lower abdomen (tummy), pelvis or lower back
• pain during and after sex
• bleeding between periods
• difficulty getting pregnant

Please refer to specialist before it's too late. (Do it for me, for you, for your family and your love one)

(Note: Symptoms of endo can vary from person to person. Some women have no symptoms at all)

So the journey started with this.....

Love ,

Jer