‘In denial about molar pregnancy’ by anon
Today, I’d like to publish a post on the subject of molar pregnancy. It comes following an email I received from a lady over 40 who has recently experienced it. The lady wishes to remain anonymous, which is fine by me, but has agreed to me telling her story here in case it helps someone else. Please see her story below:
I fell pregnant at the beginning of January at 40. It was to be my first baby and I was delighted, but scared. Sadly six weeks later, I endured an early miscarriage.
During those six weeks I attended my GP surgery as I had a severe lack of pregnancy symptoms. I didn’t feel sick and I wasn’t feeling any twinges like I thought I would. I just felt like something was wrong so I asked for my blood hCG level to be checked. I was told that it might cause me more worry than good as hCG levels can fluctuate, so it was best just to wait until I was further along in the pregnancy before starting any testing.
At around six weeks’ pregnant I started bleeding at home and I assumed the worst. After 24 hours, the bleeding became heavier and I had little doubt it was a miscarriage. I had very little pain with it though. Other than bleeding, I had no other symptoms. My blood pressure was OK and I still didn’t feel sick. Part of me felt lucky for that, but guilty for feeling that way too.
I attended hospital but once I got there I lost the pregnancy which was sent off to the pathology lab for analysis. I also had an internal examination and was told that everything had cleared up as my cervix was starting to close up again.
I left the hospital feeling shocked, but in otherwise good health. I had no other health complaints at all. The doctor advised me to take a pregnancy test in three weeks and if it was negative, her words were that everything would be fine.
I took the pregnancy test exactly three weeks later and it was negative. I was happy that things had returned to normal quickly as my husband and I planned to resume trying for a baby quickly given our ages.
We then went on holiday for a couple of weeks before things took a turn for the worst. I got home and opened the mail to find a letter from the hospital telling me that the pathology report suggested I may have had a hydatidiform pregnancy and I must see a consultant in a few weeks’ time.
I immediately Googled everything as I had no idea what one was, but the symptoms didn’t match up. It also suggested that this only happened to 1 in 1,000 women. Could I really have been that unlucky?
I put it to the back of my mind and left it another week before calling to try and talk to the consultant. I was told by her secretary that my results had shown a highly suspicious risk of a partial molar pregnancy. Again I couldn’t believe this didn’t come without symptoms. I said to her “highly suspicious, so it’s not confirmed as a yes it was or no it wasn’t then?”
I took another pregnancy test and it was also negative. I couldn’t understand what was going on as everything I’d read suggested that my hCG levels would be high and the pregnancy test would have been positive if it had been a molar. I was so confused.
After another Google search I was beside myself reading about the big C and how it could develop as a result of a molar pregnancy. It affected me so badly that I called the hospital to ask if I could see someone urgently for more information.
I explained to the consultant that I’d had two negative pregnancy tests and asked if she would check my Beta hCG level. She took three blood samples and told me to call back that night for the results. She also booked me in for a transvaginal scan.
My results that came back were hCG showing less than 1 and the two others were normal too. I couldn’t understand how they could be normal given what I’d read online. I had no sickness, no symptoms and my blood pressure was normal too.
Part of me felt like I was in denial, but then part of me wondered if the pathology report could have been wrong or mixed up with someone else. I started my period a few days later and everything seemed OK.
No sickness, no symptoms, so could it have been a partial molar pregnancy? And did I need to go through six months of agonising ‘what-if’ tests to check for cancer? Unlike miscarriage itself, I didn’t feel like I had anyone who had been through it to talk to.
The websites were full of people with molar pregnancies and partial molars, but I couldn’t find anyone without any issues…making me doubt the pathology result even more.
My biggest issue was that I was 40. I wanted a first baby so much and I knew the risks in older pregnancy went up a lot after 40. I didn’t want to wait another six months before we could start trying again. I also felt like I was in limbo with the big C hanging over me. I really needed some answers, but I couldn’t find them online.
I turned to the Miscarriage Association helpline and they did listen to my concerns sympathetically, but I didn’t get any answers. I then turned to a specialist hospital and spoke to a nurse who dealt with this kind of thing day in, day out. She helped me put things into perspective.
I hope I can now help other ladies understand it too as a result of what I was told.
What is a molar or partial molar pregnancy?
Molar pregnancy (also called hydatidiform mole) is a rare pregnancy complication. In healthy pregnancies, an embryo (baby) develops when a sperm fertilises an egg and the genetic material from each combines to produce a baby which has half of its genes from each parent. A molar pregnancy is abnormal from the very moment of conception as a result of an imbalance in the number of chromosomes supplied from the mother and the father.
There are two types – complete mole and partial mole
Complete moles usually occur when a single sperm fertilises an ’empty’ egg which has no genetic material inside, and then divides to give the fertilised egg a normal number of chromosomes, all of which have come from the father. Complete moles can also occur when two sperm fertilise an ’empty’ egg.
Partial moles occur when two sperm fertilise a normal egg and the developing pregnancy then has three sets of chromosomes or more. In a partial mole, there are usually some early signs of development of a fetus on an ultrasound, but it is always abnormal and cannot develop into a baby.
What happens if a molar or partial mole is suspected?
If your doctor suspects that you may have had a molar or partial molar pregnancy, you will have a blood test which measures the amount of the pregnancy hormone human chorionic gonadotrophin (HCG). If the levels are high, it may raise the suspicion that you have a molar or partial molar pregnancy. Usually, the levels of this hormone are much higher than would be expected in a healthy pregnancy. A molar pregnancy is sometimes not found until after a miscarriage occurs.
What happens if a molar pregnancy is suspected?
The preferred treatment for complete molar pregnancy is an operation to take away the pregnancy tissue from your uterus (womb). Medication may be used to soften the cervix (neck of the womb) prior to your operation. You will usually need a general anaesthetic for this type of operation. During this time, the cervix is stretched slightly ad a suction device is used to remove all of the abnormally formed tissue from inside your uterus.
Can a molar pregnancy survive?
Sadly, as there is no baby present in a complete mole, these pregnancies cannot survive and cannot lead to the birth of a baby. In a partial mole, there may be a fetus visible on scan, but it is not developing properly and cannot survive.
Why do I need to be sure if I have had a molar pregnancy?
In a small number of cases, the cells persist after the pregnancy has been removed. This increases the chances of you needing further treatment. There is also a small risk that if medications are used to induce miscarriage in molar pregnancies, some of the abnormal cells may pass into your bloodstream.
It is important to be sure if you have had a molar pregnancy or not as there is a small risk that some of the abnormal cells may persist or develop into more severe forms of Gestational Trophoblastic Disease (GTD).
Overall the risk of needing further treatment is about 1 in 7 (15%) after a complete molar pregnancy and 1 in 200 (0.5%) after a partial molar pregnancy. There is no way of predicting immediately whether you will or won’t need further treatment.
What follow-up will I have?
In the UK all women who have had a molar pregnancy are asked if their details can be registered with a specialist centre so that their treatment can be coordinated and provided by doctors who are experts in this field. These centres are in hospitals in London, Sheffield and Dundee.
After registering with a specialist centre, you will be followed up for up to six months. Follow-up involves measuring the pregnancy hormone (hCG), either in blood or urine samples. The specialist centre will post you the kit you need but you will have your blood test done at the GP surgery or local hospital. If you are asked to give a urine sample, written information will be given about how to do this. If your hCG level is falling, then the number of abnormal cells in the uterus is also falling and no further treatment is needed.
Length of follow-up depends on your individual needs. If your levels of hCG return to normal within 56 days, then you will usually be asked to provide blood and urine samples for up to six months.
For more information, visit http://www.molarpregnancy.co.uk/info.html
I was told that I should still register and that I’d be checked for a period of four weeks, rather than six months since my levels were already normal. I was also told that there was no chance of them rising again since they were less than 1, so there was no disease in my body.