….is the most frustrating thing I have heard this year. And mind you, I deal with frustration on a daily basis, what ELSE could be worst, I told myself.
Well, that was until my fertility doctor told me I had polycystic ovarian syndrome or fondly known as PCOS.
But what frustrated me wasn’t the fact I finally knew the cause of our infertility, it was the fact that it took this long to find out.
I’ve been wanting to talk about infertility for so long but I was always afraid of how things would be, how people would react and what would our friends and family think. I started TTC-ing (trying to conceive) many years ago – and I wanted so much to tell this story in a different setting: one with a BFP (big fat positive) on a HPT (home pregnancy test) from an IUI (Intrauterine insemination). But it seems like that kind of story has to wait for another day.
I was 22 when I got married and by the time I was 23, we were not getting pregnant. I was getting a little worried and seriously wanted to go for a check-up to see if everything was ok. Yes, perhaps it’s not my ‘rezeki’ as most of you with 2-5 children would say; and yes, perhaps it’s just Qadar Allah. But I am not Virgin Mary, the mother of Jesus, so I needed to know if I was ever going to have children the human way. If I don’t have any effort on my side, where would a child come from? Thin air?
Sometime in 2013, we visited Umra for some fertility tests. Zoom to 2017, I am back with fertility tests and I find out an entirely different story altogether – which is what frustrates me the most. Let me get into details:
In 2012, I went for a pap-test and pelvic ultrasound at BP Healthcare. Now, if you are sexually active, it is VERY IMPORTANT to go for a pap-test on an annual basis. Early detection and prevention is always better than cure so many things can be detected early with a pap-test and ultrasound.
Now in 2012, my ultrasound results came back clean – EXCEPT for one impression: bilateral mild polycystic ovarian.
If you were to Goggle what Polycystic Ovarian is, PCOS would pop up and the biggest word that would scare the shitballs out of you is ‘CYST’. Now, no one would ever want to have cysts anywhere in their bodies (coz it could also mean the big-C) and back then I was quite concern about this ‘cystic’ thing I might have in my body. But here’s the thing: my periods were regular, on the dot 90% of the time, I was slim and I had no random body hair growing excessively. Was is possible that I had PCOS?
Sometime in 2012, we went to Umra (Shah Alam) after hearing about the hospital from some people. I went for a consultation with the gynae and started a string of fertility tests and procedures which took a couple of months.
During my consultation, I was very sure I brought my concern of PCOS to the gynae. And Frustration No.1 was that she told me I was young (23-24 years old) and PCOS was the last thing I should be concern about. Okayy, you are the pro – I’ll just listen to you. So I continued with blood tests and some scans: for hormone checks and uterus and everything was fine (contrary to popular believes, you don’t necessary have a ‘rahim jatuh’ as a lot of masseuse like to tell you and the gynae could tell you that your womb is in fine position or not). My blood test indicated that hormones were normal and I was ovulating.
I started with a round of Clomid/Clomiphene Day 2-5 of my menstrual cycle, followed by a HCG shot (also known as the ‘trigger’ ovulation shot) and you are given a recommended date to have intercourse. I did three round of the above Clomid cycle, got BFNs (big fat negative) before I was referred to Umra’s fertility specialist.
The fertility specialist recommended me to do the HSG test to identify if my fallopian tubes were blocked. This was probably the most uncomfortable and painful of all the tests done. I truly suffered this one – the pain was like a severe version of PMS cramping which I don’t usually suffer on a regular cycle. Results: No blocked tubes. Yay.
Then the husband had to send in a sample of his sperm and we found out we had some issues with motility (swimming) and morphology (shape).
Contrary to popular believe, a healthy man MAY NOT have children all his life as fertility in men starts decreasing after 40.
At that point, the specialist suggested we did a round of IUI as there wasn’t a need for IVF given our condition. So, the husband was put on some supplements to improve his sperm (easy as that…) and I was back on Clomids and injections. It was March 2014.
I remember clearly how uncomfortable it was. I had one FSH injection and before the IUI procedure, I found out my ovaries are over stimulated, a condition called OHSS or ovarian hyper stimulation syndrome. I was bloated for a week.
At that time, doctor wanted to abandon IUI altogether as too many follicles (eggs) could lead to multiple pregnancies (not that I minded hahaha) and move to IVF instead. But cost was a huge factor so we agreed to just carry on with an IUI. Naturally, that did not work out as you can see. During that cycle, I was also given Duphaston to help thicken my uterine lining. When pregnancy did not occur, my period was heavy so I was told to take a break for a while to regulate my menstrual cycle again before trying out for another round.
We did not continue with another cycle.
At that point, I was not only frustrated it did not work out with a pregnancy (all that money, pain and time spent), I was also annoyed at my husband. Not only was he quite reluctant to go on with more fertility treatments, I was really annoyed at some lifestyle changes he could have made: taking those sperm-happy supplements, reducing caffeine – those kinds of thing, coupled with lots of disappointment and stress on my side.
STRESS – the hardest thing to avoid when trying to get pregnant.
In December 2014, I went back to the clinic with plans to try again and was going to go on another round of Clomid when we decided to look around for adoption. January 10th 2015, Daniel was born.
You could say our TTC plans halted when we had Daniel. Despite still not practicing any forms of birth-control (no pills, no rubber), I still did not get pregnant.
In January 2017, I was chosen as one of the talents for a commercial shoot for Metro IVF Klang. Which, in my opinion, was God-sent. (Thank you Purple Perfect Studio!). Before the day of shooting, I studied some information on Metro IVF and found out that they have high success rates for IVF and IUI – FIRST TRIAL. I was really determined in finding out more and coincidently, they had a forum on infertility right after the shoot and they had arranged for me to get a place (I was supposed to register earlier but I got in at the last minute all thanks to Liza!).
Of course it was kinda hard to convince the husband to come with me, but he did eventually and I was really glad we attended. That is because #1. They gave us a free fertility test at the centre AND #2. There was so much information first hand from Metro’s doctors. It was the best decision I made, attending that forum.
(#3: I let go of my plans to further my studies to spend on this instead of my doctorate… 😦 )
At the forum, we had presentations from Dr. Tee, Dr. Mohan and Dr. Prakash. I was fond of Dr.Tee as we did the commercial shoot with him, but the husband really liked Dr.Mohan as he had great presentation skills! We decided to go on with Dr. Mohan.
So, our initial consultation and FREE tests was with Dr. Mohan. With a few background check and sperm sample given (they have rooms specially for this haha!) we proceeded with a transvaginal scan for me (not an ultrasound, take note).
This was the first indication of a possibility that my follicles were not growing. It was hardly even convincing – the fact that I had PLENTY of follicles was something to be thankful about – 12-14 on each side AND YET none were at the right size that would trigger ovulation naturally. I was told to come back on the second day of my following menstrual cycle to scan again (as I was on Day 21 at that time) and take a blood test to check my hormones.
First Major Information I found out after relating my experience in 2013 to Dr.Mohan – blood test alone is not enough to determine if one is was ovulating or not. BUMMER. Second Major Information: there were more major issues with the sperm that we possibly know of.
The husband’s sperm test came back great, albeit the low numbers and % of perfect shaped tadpoles, so nothing major like IVF was needed (Way to go, sayang!!).
We learnt that:
- there were % of morphology that determines which treatment. Anything below 2-3% would need IVF to help.
- There were classes of sperm in terms of motility – A, B, C, D. You only want two of that groups, the other two stays at the entrance of your uterus and the other swims in the uterus and stops. You’d want the Olympic swimmers who cannot wait to get through the tubes to the egg.
- Metro has their own in-house embryologist who runs comprehensive tests pertaining to fertility – as opposed to hospitals who send it out to the labs who only runs general tests.
After discussing with Dr. Mohan, we decided to go for another round of IUI. I was started on FSH injections much earlier this time until Day 9, where I am scheduled to come in for an injection.
Today is Day 9. We found out today that NONE of my follicles responded to the injections.
And that was when he told me clearly about PCOS. Now, I might have heard him mention it before this, I’m not too sure. But I heard the term P-C-O-S so clear today I felt like God had forsaken me on the spot.
Today’s scan, I had 4-5 follicles prominent on the scan but it was all about 5mm. A good size follicle is supposed to be between 18-25mm.
Then doctor said: “5mm follicles are supposed to be like those on Day 2 of your cycle. I’m sorry Mishael, but I don’t think we can continue with IUI this month. Otherwise, I would need to give you maybe 10 injections. ”
I could associate that news to equal the heartbreak of a miscarriage. It took me a lot not to burst out in frustrated tears in front of Daniel and my mother (the husband is currently in Lumut for tennis).
He then explained other possibilities – IVF. The entire time in my head (nasib baik boleh multi-think) I was remembering my pap-test in 2012 and what the doctor at Umra told me. My frustrations doubled.
WHY did no one else think that the possibility of PCOS is something that should be looked into? When I got back and checked my report from 2012, I was so upset I couldn’t wait for my parents to leave for Melaka because I needed to have a good cry.
In 2012, my report said:
“Multiple follicles of small size are seen along the rim of the ovaries. Suggestive of mild polycystic ovaries bilaterally.”
And I totally took the doctor’s words: I was young and I did not need to worry about it.
And why did I not push further into it! I am so frustrated with myself! It just didn’t add up at all that time – my period was regular, blood tests were fine, no excessive body or facial hair. And all this time I was thinking it wasn’t working out because of timing, stress and the husband! (corry cayang!)
But reading about PCOS today, it says:
“Polycystic ovary syndrome (PCOS), also known as polycystic ovarian syndrome, is a common health problem caused by an imbalance of reproductive hormones. The hormonal imbalance creates problems in the ovaries. The ovaries make the egg that is released each month as part of a healthy menstrual cycle. With PCOS, the egg may not develop as it should or it may not be released during ovulation as it should be.”
It was only after I went to Metro IVF that I found out so many new information that could have changed our plans if we were to know about PCOS earlier. My period was not heavy – 1-3 days heavy and 3-4 days light brownish discharge. And it was at Metro that I found out that follicles and uterine lining grows together. If you don’t ovulate, your uterine lining would not grow thicker (to prepare for implantation) thus, could be an indication of a light period. My cervical mucus was fine (contrary to some believes here in Malaysia, your CM is an indication of where you are in your menstrual cycle, so ‘keputihan’ is not a bad thing unless it is greenish, thick or smelly). Even after reading on infertility for years, there were still things we don’t know!
HOW CAN WE NOT KNOW?! And I wished if we could have known earlier, we could have done something about it. But 3-4 years later, I am 28 (husband is 44) and we have to not only try to get pregnant again, but we have to address this condition upfront.
I’ve been eating better, taking supplements and any possible superfood related to fertility, I took goats milk with kurma for over a month now. My weight has not been improving at all (tell-tale symptom of PCOS) and all this while it was an after effect of taking Clomid – for me atleast.
I am pretty upset. I can’t even explain how I feel exactly – apart from frustration, there is an indescribable feeling I can’t seem to find a word to put it to!
I am urging anyone who knows anything about PCOS to please share your knowledge and experience (if not prayers) with me. It can be embarrassing to talk about, when you see friends and family churning out babies like nobody’s business, but it is from experienced stories like yours that help other people like me go through infertility. So I’m starting with my story. If you have yours, share a link or your story below or you can email me at firstname.lastname@example.org.