Tidbits about Endometriosis

I have written a great deal about not being able to conceive, and what we have been doing to bring us closer to our dream of having another child.

What we haven't quite talked about is the why. 

The last thing you want to hear from your obgyn is that you have "unexplained" infertility.

Well, for a really long time, that was what we thought. Actually, it still is rather unexplained. I have done test after test and every possible issue such a PCOS ( polycystic ovary syndrome)  or endometriosis have been diagnosed as mild and not likely to affect chances of conceiving.

We have consulted traditional chinese doctors, and they say I am generally ok... Just in need of a little nourishing.

This talk from doctors, using adjectives like "slight" and "little" kills me because it seems like there is nothing they can pinpoint that's causing our agony.

That said, twice,  endometriosis have been brought up. Once was 2 years before J was born. And more recently, just before we started on IVF. 

So, what exactly is endometriosis? 

In the most layman fashion, it is a condition when the tissue that lines our womb / uterus (the endometrium) each month grows outside the womb/uterus causing pain in the pelvis area. 

It can grow in the fallopian tubes, in the ovaries, sometimes (rarely) in other organs. So, when we women get our periods, the tissue in our uterus will be displaced, but these tissue that grows outside often cannot shed in the same way. As time passes, they then become adhesions or scar tissue. 

That's what I experienced. 

Before we conceived J, we found out via a hysterosalpingogram (hsg) that I have a partially blocked right fallopian tube. What followed was a laproscopy that revealed the blockage was due to scar tissue. Our doctor tried to remove as much scar tissue as possible, hoping that will allow my right tube to function for conceiving. 

What are the symptoms of endometriosis? 

There's a whole list of them, and if you scour the web, you will probably find countless resources that tells you the same things such as pelvic pain, painful intercourse, heavy periods etc. 

Here's what I experienced over the years: 

1) Infertility. This is the most obvious and most telling for me, although I do understand that there are ladies who have been able to conceive despite having endometriosis. 

Then, I suppose one's ability to have babies really depends on the severity of their condition. I was probably one of the unlucky ones. The thing is, I can conceive, but they don't make it till implantation and when they do, they run the risk on implanting at the wrong place. That's how I had my ectopic pregnancy in 2013, where the egg grew in my blocked (caused by endometriosis) tube. 

2) Extremely heavy periods. Well, basically I have the type of cycles that uses a lot of ... and i mean A LOT of pads, if you know what I mean. At such times, I would rather curl under my blanket, and lock myself in my room, and not step out of the house at all. 

3) Prolonged Periods When I was much younger, my periods can last over 2 months. Yup...you heard right. 

4) Painful Periods This was only more prevalent in recent years. Possibly an indication of it getting serious? While not proven, I choose to believe so since it I had to have a laproscopy and be on 3 months of hormone therapy, yet, there is no cure for endometriosis. It will return each time we have our periods. 

5) Absent period So sometimes, I get periods for 60 days, then I will miss my periods for another 60 to 90 days.... Can you imagine how difficult it is when we want to try for kids? We never know when's a good time! 

In essence, I have very irregular periods all through my life. Looking back to my pre-marriage and pre-TTC (trying to conceive) periods, these symptoms should have rang the alarm bells. Alas, ignorance got the better of me. 

Ladies... if you are reading this because you worry about having endometriosis, then do have a check if you have any of the my symptoms. Not saying they definitely indicate onset of the disease, but it doesn't hurt to see a doctor. 

Treatments for Endometriosis

I have learnt over the years that there are no absolute cure for endometriosis. Every treatment your doctor prescribe is to alleviate the pain or to slow the growth of these unwanted tissue. And as my obgyn has told me, once I undergo one round of treatment, it is best to try conceiving asap. 

Once again, I am no expert. If you consult Dr Google, you will see the varied ways of dealing with endometriosis that even includes hysterectomy. Well... for me, I had laproscopy a year before I conceived J. 

More recently, I was put on some hormones to mimic menopause to shrink the endometrium tissue. That was over 5 months ago... and we are still waiting for some good news, and of course praying each day our dream will come true. 

We will continue to have faith that the pain is all worth it. 

I hope, to those who also hold onto the same hope, and going through the same pain, you will find this post useful. 

This post is written as part of my IVF Diaries series. Click below for all related posts. 

Disclaimer: I am not a doctor. I am no expert. I am just a victim of this silent disease and want to share my story.