Hydatidiform Mole and Choriocarcinoma UK Information and Support Service Forum Index Hydatidiform Mole and Choriocarcinoma UK Information and Support Service
Patient Forum
 

Support given to patients with partial moles

 
Post new topic   Reply to topic    Hydatidiform Mole and Choriocarcinoma UK Information and Support Service Forum Index -> Discussions
View previous topic :: View next topic  
Author Message
Dons



Joined: 26 Feb 2008
Posts: 1

PostPosted: Tue Feb 26, 2008 5:16 pm    Post subject: Support given to patients with partial moles Reply with quote

Hi

Firstly, I would like to sympathise with eveyone who is having to deal with a molar pregnancy and their loss.

I was also diagnosed as having a partial mole. Here's my story so far:

On the 20th Jan 2008 started having a strange feeling as if something was wrong and decided to call my doctor for some advice. I was told not to worry and that I needed to pay the surgery a visit to be referred. I booked an appointment for a week later (the usual wait for an appointment with the GP) . Two days later I started getting a sharp pain to my right side - it wasn't constant but came and went. I also had slight spotting which was dark brown but was told by my doctor on the phone that this was normal.

I decided instead to go to my local hospital (North Middlesex, London) who had a walk-in clinic on the 24th Jan in the afternoon. The nurse (as no doctors were present) took a urine sample and referred me to the EPRC for the next day. I was really worried - I didn't want to believe there could be anything wrong and prayed the baby was okay.

The next day the worst was confirmed and I was told by the sonographer that I had miscarried - all she could see was the empty sac. However, she had a problem with viewing my right ovary and therefore sent me to get a blood test and asked me to return the next day to have another scan. There was no mention of support and I was very upset at that point.

I went to the EPRC again the next morning to me re-scanned by a doctor who still couldn't tell me what was wrong and why I had a pain. Later that evening the pain seemed to get worse and so I went to A&E. After a 5 hour wait I was seen by doctor who siad they would keep me in for observation as they thought it may have been eptopic.

I was referred back to the EPRC for the 3rd time where I was scanned again by a "consultant" and was then told it was molar (hCG 53,000) and that I would need to have a d&c. I was relieved at this point to know what was wrong and by the morning the pain had subsided. I still don't know what the cause of it could have been.

Then the mayhem began......I was kept on a drip for 2 days before the d&c as i was told they couldn't operate due to the emergencies coming in. During this wait I was either beign shufflled to another bed (3 moves) or being told I would be operated on only to be let down over and over again. I was really frustrated my the next day when they told by a doctor that be I would be operated at 1am only to be let down again after waiting up.

The tears then flew....suprisingly this got me a definite d&c for the next morning (26th Jan). I could not believe what I had just been put through but was glad it was over and i could move on. I wish......

A week later on 31st Jan I had another scan as I was experiencing bleeding - I really didn't want to return to the hospital but they had all my records and I therefore didn't have much of a choice. The songrapher told me there was some blood and remnants after the d&c and that she would call a doctor to prescribe me some antibiotics (Augmentin). I took these for a week and after the week was up started getting some horrible cramping near my pelvic area.

I thought that it may have been that the baby was still in my body as the sac was empty- I really had no faith in the doctors after what I had been through at the hospital. I was really terrified. I paid a visit to my doctor who then told me it was colitis which is caused by the antibiotics and gives a sharp pain in the pevic region/lower abdomen. It can make getting up, leg movements, sleeping, etc really uncomfortable.

My follow-up appointment was on 14th Feb 2008 where I had a doctor ask me how I was getting on and if I knew what a molar pregnancy was. I told her what I thought I was from what I had learnt on the internet and asked her if she could tell me any more about what would happen next. She replied that I was now being referred to Charing X Hospital. I asked how long I would have to wait before trying for another baby and was told a year.

I was referred to Charing X after the results confirmed the pregnancy was molar and reveived the blood test kit from them on the 22nd Feb. I was shocked to read it wasn't to follow up the molar pregnancy - it was to follow up in case it was was cancerous. I then tried to book an appointment with my doctor to go over the kit as mentioned on the letter from Charing X...only to be told yet again that I would have to wait to see the doctor. It has been almost a month and I haven't had any monitoring or blood tests - by my GP or by North Middx hospital. I called by doctor to speak to him about the kit i had received and was told that he didn't do blood tests andI sholdtake it elsewhere. I called North Middx Hospital and was referred to their pathology lab only to be sent back to their blood test dept.

By some fluke on the way to the blood test dept I bumped into the gynae consultant dept who had referred me to Charing X who explained that my doctor should be dealing with my test. I also explained to her that felt I wasn't properly followed up and was asked to go in again this Friday.

I just wanted to share my experience as it has been an awful month and I really feel that many doctors do not have enough training to handle a molar pregnancy or the tests that follow. Today's the 26th Feb and it's exactly a month since my d&c and I still don't know whether my hCG levels are dropping. Today, I had some bleeding - bright red like a period and i don't know if that is what it is.

I'm feeling very isolated and confused and feel like i'm being pushed around by the same people who should be supporting me as they are not well informed themselves. Is anybody else going up against brick walls?
Back to top
View user's profile Send private message
tweetypie



Joined: 03 Oct 2007
Posts: 5

PostPosted: Thu Feb 28, 2008 10:01 pm    Post subject: Reply with quote

Hi Dons

OMG, I cannot beleive the way you have been left. Not only is your physical health on the line but also your mental wellbeing. How can your doctor even consider colitis after you have just been for a d&c for a miscarriage and even worse a molar...that to me is not rocket science. I suggest you go back to your, gp and demand to have blood tests done. If its a molar pregancy and some of the cells are still inside you then they can continue to grow and not to try and scare you but the cells can spread to other areas of your body. Pls Pls Pls go back and kick up the biggest fuss you can until you get the treatment you need.

I am british and have been living in NZ for two years........this is my story!

Last May (2007) I found out i was pregant, irregular peiods meant i didnt know my dates so i went for a dating scan and they suspected a molar pregancy. The next day i was taken down for a d&c, bearing in mind that i live in a sleepy hollow called Hawkes bay. Following the d&c i went back to the epc and was told that my pregancy was not molar as the tissue was normal and that i can "get on with life"

If my pregnancy had been molar i would have had weekly blood tests to check my hcg's but because they said it was " normal" i didnt. Four weeks later i started to get a cramping on my left side, but i thought that it was just my period due. But i remember saying to one of my friends that i still felt pregnant. That Night i ended up in A & E very poorly indeed. The Molar that they said it wasn't had continued to grow over the four weeks and had ruptured through my uterine wall. The consequence being that i was rushed to theatre, needed surgery and lsot the use of my left tube.

My Mole was growing in the very top corner of my uterus where it meets the fallopian tube, which is why they didnt remove it on the d&c, which is why they said the d&c was normal!!!

i've had months of chemo, I had two kinds coz the first wasnt shifting it, but it was all mild stuff, so no hair loss or anything. Its now feb and my beta hcgs have been <5 since novenmber. My consultant says we can try again in a year from november. Each passing day is a day closer but im still at a loss for my first pregnancy and also for my lost tube...I always wonder what if and mostly why me.

Pls pls pls go and demand blood tests, this is not the kind of thing that can wait. My thoughs are with you.
Warm Regards
Rach
Back to top
View user's profile Send private message
Display posts from previous:   
Post new topic   Reply to topic    Hydatidiform Mole and Choriocarcinoma UK Information and Support Service Forum Index -> Discussions All times are GMT
Page 1 of 1

 
Jump to:  
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot vote in polls in this forum


Powered by phpBB © 2001, 2005 phpBB Group

Web site designed by Paul Littlefield