Wondering why this site was built?

Following what I thought was a normal miscarriage at 6.5 weeks pregnant I was diagnosed with a complete molar pregnancy in November 2006. Frightened and confused I searched the internet for information on my condition and although I found many references to molar pregnancies, it still didn’t make sense, reassure or comfort me. My initial thought was that I was very ill and that I wouldn’t survive or wouldn’t be able to conceive again. I asked on baby website forums for help and support and there was absolutely nothing. All I wanted to do was talk to someone else who’d had a molar pregnancy in order to reassure me.

My partner gave me the idea of setting up a support network. I thought it would be impossible because sufferers come from all over the UK, Wales and Ireland, even from different continents. Then it dawned on me to set up this website. It’s been hard work. I had to ensure I didn’t scare people but at the same time I wanted to tell women what they are entitled to know and at the same time, reassure them.

I was making contact with some women via an American based website but I could count the amount on two hands. I knew it was time to create a support network for us all and this way I would learn more about my condition along the way.

I began networking and wrote to both the Trophoblastic Disease Treatment Centres in Sheffield and London for funding to help generate the website. I didn’t hear anything for two weeks and then to my surprise Dee Short from London announced she had gained me £1,000 to start my little project. I was ecstatic!

With the help of my work colleague Darren Lewis (Web Designer), Professor Barry Hancock, Jan Everard (Weston Park Hospital) and Dee Short (Charing Cross Hospital); this site was born.

Writing my story, sharing my thoughts and feelings are very therapeutic for me. The molar pregnancy world is a big lonely one so I wanted to get everyone together so that they could learn to understand their own condition/s and share their fears and thoughts.  Further along you will read all about my experience; hopefully you will be able to relate to it. Thank you so much for reading and I hope you will get much support and relief from being part of this website.

My Story so far . . .

I began hCG monitoring in December 2006 with Weston Park Hospital but my first urine test revealed my hormone levels had not decreased from 14,500 following a Medical Evacuation and a D&C. Further scans and tests revealed a further increase in hCG levels to 20,000 and Persistent Gestational Trophoblastic Disease on my lungs. I felt numb and frightened and couldn’t believe any of this was happening to me. One minute I was pregnant, the next I’d had a miscarriage and now this. The thought of cancer kind of summed everything up and I thought I had a long haul ahead of me.

I began methotrexate intramuscular injections the week after and it took 5 months of the stuff to get rid of the disease. It’s a tough ride this Trophoblastic Disease lark. I didn’t feel unwell from the disease but I suffered many side effects from the Chemotherapy. Some days I used to feel so tired and run down I couldn’t leave my flat. As other patients will relate to – your entire life has to revolve around your treatment and this does become tedious and stressfull. I found myself utilising my diary a lot and setting reminders on my mobile phone to take my folinic acid tablets!

Months on from the miscarriage and beyond my due date of 4th June I still can’t help thinking that by now I’d have been cradling my own child in my arms and it makes me sad. I still find myself being jealous of pregnant woman and thinking to myself that certain individuals don’t deserve to be pregnant or I find myself furiously envying their bumps. Yes, it’s a harsh thing to think, but it’s not half as bad as some of the other thoughts that go through my mind! My little green eyed monster has died down but it still pops up every now and then. I use to check baby websites out to see how far on my pregnancy would have been and what the baby would have looked like growing inside me. One day I find myself ok and think I have moved on and then the next day I’m grieving again. I had a complete molar pregnancy and there wasn’t even a baby developing but I thought I was pregnant, my body told me I was so in my mind there was a little baby growing inside me. I had a life in there and now it’s gone.

I take each day at a time. Some days are good then I’ll watch a program about pregnancy and birth and burst into tears or think about the baby plaque I bought from Pontefract General Hospital that is placed in the Forget Me Not Garden. I still sometimes go in and make sure the little teddy is dry in its little plastic sandwich bag! When I found out I was pregnant I bought the tiniest pair of socks and kept them in my handbag for good luck. Luck wasn’t on my side this time but I still have these socks and I’m hoping one day I’ll be able to proudly put them on my new born’s feet.

People underestimate miscarriages. they say things like ‘it was for the best’, ‘it happened for a reason’, ‘it’s natures way of telling you there’s something wrong’, ‘most first pregnancies end in miscarriage’, ‘you can try again’, ‘never mind’, ‘you are young and fit, you’ll get through this’, ‘so and so had a miscarriage but she was 4 months gone; not early like you!’.

Some of the simplest but tactless comments can be heart breaking. I couldn’t fight my corner at the time but mentally argued ‘what reason did it happen?’, ‘I can’t try again’, ‘I’m obviously not healthy because I’ve got PGTD!’ and ‘6.5 weeks or 4 months pregnant, it still hurts, I’ve still lost something that I wanted and planned’.

It’s hard for people to understand and they say things to you because they don’t know what else to say! They don’t mean any harm ‘or at least most of them don’t’, they just want to acknowledge your loss. But, unfortunately with little tact or understanding.

Initially my all clear would have been 1 year but I’ve managed to get away with 6 months! I’m desperate to be a Mum. My maternal instinct has gone into overdrive and all I want to do is pick up a baby or child and love it. Don’t ask me where this came from because before I fell pregnant I had no idea how to interact with babies or children. I felt awkward, but now I love kids and interacting with them makes me crave for my own even more.

The five months during treatment were very hard. There’s the tedious routine of attending hospital for your injections and bloods and believe me the more you have them doesn’t make you used to them, if anything I hate injections more! Hopefully I won’t have much longer to go. I now feel there is light at the end of the tunnel, only a little one but it’s there. I will be monitored for the rest of my life so I’ll never be able to forget about it but I’ve hopefully come through the worst part.

My symptoms

Before Diagnosis
  • Dull ache in both sides of abdomen
  • Flashes of sharp pain on pubic bone and down front of legs
  • Dull back ache
  • Discharge that alternated from brown to pink to white; of a gloopy consistency
  • Heavy Intermittent Bleeding
  • Fatigue
  • Mood swings
  • Sore and swollen breasts
  • Swollen stomach
After D & C and Diagnosis
  • One occasion of spotting
  • Slight abdominal pain
  • Discharge that alternated from brown to pink to white; of a gloopy consistency
  • Severe Fatigue
  • Mood swings
  • Sore and swollen breasts
  • Swollen Stomach
During and in-between Chemotherapy
  • Headaches
  • Nose Bleeds (only on last day of 1st two treatment cycles)
  • Heavy Vaginal Bleeds
  • Dizziness
  • Discharge that alternated from brown to pink to white; of a gloopy consistency
  • Breathlessness and burning sensation in chest
  • Confusion and forgetfulness
  • Cold like symptoms
  • Severe fatigue
  • Sore gums and tongue
  • Bloodshot dry sore eyes or runny sore eyes
  • Brittle hair
  • Mood swings / depression
  • Sore breasts and nipples
  • Abdominal pains (‘ripping’ sensation)
  • Nasal scabs

Why not visit the Molar Pregnancy Support Forum

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