Revenge of the Uterus - Part 2

Let's take a quick detour into the current rabbit hole I am in. We will get back to the the follow up on the polyp and what happened, in another post.  

So the biopsy from the surgery last month came clean, it ruled out any presence of a cancerous or pre-cancerous growth. That's great news. It was the best we were hoping for. However, that led us to the question of - then what is causing the excessive bleeding? The one in the running is adenomyosis. I phrase it that way because I have seen a whole spectrum - hyperplasia, no hyperplasia, polyp, no polyp, adenomyosis. 

What is adenomyosis? Simply put, it is when the cells from the endometrium (inner layer of the uterus) grow in the myometrium (the middle, muscular layer). The myometrium is the muscle that contracts during childbirth and also during menstrual cramps. The endometrial cells are supposed to stay there, but when one has adeno, they end up growing outside and into the muscular layer. 

So, what? Adeno is associated with heavy bleeding, painful periods (sharp knife-like pelvic pain), and also a bulky uterus. Adenomyosis belly is a thing, with people having adeno looking 3months to 6 months pregnant when they are, in reality, not pregnant. There are other fun symptoms like pain during sex, severe menstrual cramping, abdominal pressure and bloating. I don't experience all of the symptoms - in fact I only experience heavy bleeding, and the knife-like stabbing pain for a brief minute. However, there is hope yet. Apparently the symptoms get progressively worse - yay! (Not.)

What causes adeno is not abundantly clear. It seems highly correlated with middle age (40+), multiple pregnancies, and any uterine surgeries. I processed it as the more activity that goes on in the uterus, the higher the chances. I have had two pregnancies that I carried through to term, both of which were delivered through caesarean section, and I have had three separate D&C with hysteroscopy and a fourth office hysteroscopy. So, in the quest for finding out what is going on, we might have inadvertently set off the adeno. In addition to these correlating factors, the usual factors - hormonal imbalance, PCOS, obesity - tend to also play a role. 

Do we know for sure what I have is adeno? We don't, to be entirely honest. The only definitive way to diagnose adeno is through a biopsy post a hysterectomy. So if and when the uterus is removed, it can be analyzed and then we say "a-ha! that was adenomyosis, this is what was going on!" How fun! How did I know, then? I had a second ultrasound last March, during which adenomyosis was suggested by the radiologist. 

I am trying to make sense of why it is so hard to diagnose if it can be identified on an ultrasound. I did some digging around, and here's what I found. It's not easy to spot on an ultrasound (it's better in a transvaginal ultrasound than an abdominal ultrasound), and only experienced radiologists do spot them. However, radiologists are not specifically looking for them, so if it was diagnosed, it was probably right. 

The next question - ok now that we know (or think) it is adeno, what is the cure, what should one do about it? Here comes the punch in the gut - there is no known cure - no pills, no procedures, no hormones, no diet, no lifestyle changes, no exercise. The one true cure to this is hysterectomy, complete removal of the uterus. The other option is to live with it until you hit menopause. A true choice between the devil and the deep sea. 

Now this is all there is on the public domain - all that is truly researched and expert-agreed-upon views. It is saddening how little we know. If you read the above four paragraphs, that is the sum total of all that experts know. That we don't know what causes it, it is debilitating, and that there is no cure. For something that affects one in 500 women (not too common but not too rare either), it's quite shocking how under-researched this condition is. 

In an effort to better understand this monster, know what to expect and see if there is anything I can do to manage the condition, I joined a few online forums on Reddit and Facebook for people with adeno. The experiences they share are quite the horror story in the making. I learnt that there is term for the sudden increased bleeding - it's called flooding, and it is common.  Things they collectively seem to agree upon are that ER visits are usually useless, iron and B12 supplementation are a must, iron transfusion is fairly common, and doctors including OBGYN are typically clueless on what to be done. Most people on the forums seem to lean towards hysterectomy.

Reading those are a "count your blessings, Vidya, you have it a lot better" moment. Along with that, the other predominant emotions are despair and anger. Despair that there isn't light at the end of the tunnel, and the women who suffer through this condition are by far left to fend for themselves with very little "expert" guidance. Anger that there is so much in common among people who are living the life, and yet they don't make it to the collective common knowledge, and while we are no closer to understanding this condition, we are not even trying.