Welcome to the second instalment in the “and me” series! Featuring myself and my range of rare medical conditions. Ok, I actually have just the two CIDP and Molar Pregnancy.
Well, I don’t have Molar Pregnancy, there is no having of Molar Pregnancy. But I am undergoing follow up for a Molar Pregnancy, and I know a lot of people don’t really understand what that actually means so here I am, blogging about it.
Chris and I decided to add to our family last summer, sure I’d been having a few strange little twitches in my leg but we obviously had no idea of what was about to happen, otherwise we wouldn’t have been contemplating trying for another baby.
When I say try, that’s not really the correct wording. We’re fortunate to be extremely fertile. The question is always whether the pregnancy will actually stick.
I discovered I was pregnant on August 29th, the same day I was diagnosed with having Guillain Barre Syndrome, and had all the usual doubts and fears, but an early private scan showed the teeny tiny beginnings of a baby, i.e. a blob measuring a week behind but with a clear strong heartbeat.
I’ve never had a miscarriage that followed a positive scan so I figured we were free and clear and concentrated on getting better i.e. re-learning to walk etc.
Unfortunately in this case I had definitely counted my chickens before they’d hatched. Literally. A scan at what would have been 10 weeks showed an embryo sans heartbeat. There was to be no third chicken.
Since my body is not always eager to admit it’s failings and reluctant to let go of doomed pregnancies I had to have my miscarriage medically induced.
You’d think that would be the worst of it, right? So did I. Until 3 weeks later after celebrating Toby’s birthday at Legoland, we came home to a huge thick envelope in the mail.
The histology results from the miscarriage were back and the findings were consistent with what is known as a Partial Hydatidiform Mole.
Fortunately I’d heard of the condition before, through work, otherwise I’d have been even more shocked and bewildered than I actually was.
In simple terms it means that at conception, two sperm fertilised the same egg. This should never happen, as eggs are supposed to form a protective barrier preventing a second sperm from gaining entry. So there was a glitch with my egg, and two lucky sperm got in. Unfortunately this meant that right from the beginning the pregnancy was not viable, and by viable I mean, could never have resulted in a live healthy baby at the end of it.
From the start there was an extra set of chromosomes- 69 instead of 46 (known as a triploidy). That extra genetic material causes the pregnancy to progress abnormally with the placenta outgrowing the baby. Partial molar pregnancy is a type of Gestational Trophoblastic Tumour. Usually the condition is diagnosed at scan and the recommended treatment is an ERPC, which is surgical removal of all the pregnancy tissue. There is a risk that if any material is left behind it can embed in the uterus and develop into what is known as an invasive mole. Untreated this can lead to Choriocarcinoma.
Obviously I wasn’t diagnosed as having had a Partial Molar until weeks after my medically managed miscarriage, and not having had an ERPC at the time, meant I was at slightly increased risk of there having been some pregnancy tissue left behind. The idea of there being this random genetic material burrowing into my uterus and possibly becoming cancerous was pretty terrifying and I definitely struggled with the diagnosis more than I did with being told I had Guillain Barre, or being told I had miscarried, or even a couple of weeks later having my GBS diagnosis changed to one of CIDP. The molar was the hardest to swallow because it seemed so fucking unfair.
All we’d wanted was another child, how had it gone so wrong that I was now being sent pamphlets about Chemotherapy?!
Fortunately, all my stress and worry and research into whether or not I would lose my hair on Methotrexate proved to be unfounded. I have been monitored via regular urine and blood samples (I send a test tube of pee to Sheffield through the post every fortnight!) in order to check that my HCG levels are reducing. In simple terms HCG is the “Pregnancy Hormone”, so were it increasing, or even just sticking fast, then it might indicate that there was some tumour remaining and I would need further treatment. My levels started low and have continued to fall. My most recent level was 0.02. There really isn’t much more NOT PREGNANT IN ANY WAY SHAPE OR FORM! you can get!
So it’s all been pretty straightforward and next month (as of the 12th of April) I will reach the 6 Month Post Miscarriage marker and no longer need follow-up. Although were I ever to get pregnant again (regardless of at what point in the future, or the outcome of the pregnancy) I would need follow up afterwards, as it is always possible that the pregnancy hormone can “reactivate” the mole. Which sounds so sci-fi, I know.
I will finally be able to get life insurance (something I have been turned down for, due to there having been an increased chance of a cancer diagnosis these past 5 months) which will be a relief.
It also means that as of next month we will be given the “all clear” to try again, should we want to.
1 in 600 pregnancies is a Molar Pregnancy. Having already had one the risk increases to 1 in 100. Which is still pretty good odds of everything being perfectly fine, and in fact most women do go on to have successful pregnancies and healthy babies following a molar diagnosis.
Of course most women do not also have a diagnosis of another rare and under-researched condition, like CIDP. And that, is a whole other post in itself.