Molar and Partial Molar Pregnancy Support Group

[Mummy2Corban]

So for me my bleeding started off like a period but about 10 days after it got heavy and every time I stood Id pass clots and flood my pads. Nights 11,12 and 13 is when I was having contraction pains, bleeding heavy heavy and passing clots..... I think my body was trying to get rid of the mass I had itself. Are you flooding pads lovely? If you've a scan tomorrow hopefully that will tell you what's going on. I never went to a meeting there. I did email Dr seckle a few times with questions. Sorry I can't help with that bit hun. When I had my 10 days there the nurses were great so maybe if you have questions it might be a good idea??? Xxx

 

[Mummy2Corban]

Hope the scan goes well today rachie xxx

 

[dan-o]

Rachie, mine was very heavy and painful with large clots for a few weeks. Then it was on and off floods without warning soaking my clothes right down to spotting and light bleeding. I had my ERPC in March and started my chemo in June when the bleeding was getting out of hand and my hcg rising again.. so it went on for some time!
You definitely won't be going through what I did tho, you are getting proper care from the start. I'm so glad, I wouldn't want anyone to go through what I did! I didn't even get a referral to CX until about 8 weeks post ERPC! X

Keeping all crossed your scan is clear and hcg zooming down! xx

 

[jacky b]

Rachie, I hope your scan goes well. I remember the first week I had loads of contractions and heavy bleeding (plus some clots) but then it all slowed down to spotting for next week. I hope it eases for you. Thinking of you hun xx

My 2 kidies are doing heaps better. I took them both to the doctors and its like just being there was enough to make them start feeling better. Had a much nicer day today (nights are not good still but its a start). Just a random virus which there seems to be lots going around at the moment. Raph ate heaps today after eating very little for the last week so hopefully that means he might slow down breastfeeding so I can get a break.

Dano, a week left until first milestone down!

Hope you are all well xx

 

[rachieroo]

Jacky glad they are better.

Dan o not long to go now has the bleeding stayed away?

Of course my scan didn't go well, dh is calling it our ongoing saga. More tissue left behind so they want to do another evac. Hopefully will be in the morning as we have a weekend booked in chester (a Christmas present off mil) so I want it done before then so I can go, it's keeping us going the thought of having a weekend away from all the crap. The next step after this will be chemo but she is confident this will be the last time. I'm so worried about dh. He's not coping well and suffers with a little depression anyway so I'm hoping it doesn't make it worse. I feel so sad xxx

 

[Mummy2Corban]

Ahhhh rachie! It always feels like one thing after the other! I'm sorry you need another but at least there on the case and hopefully keeps you from having chemo. So hope you make your weekend away too! It's very much needed. I'm sorry to hear about DH too. Sending massive hugs out to you my lovely! I'm hoping this d&c will be the end so you can really get on the path of healing xxx

 

[dan-o]

Ugh, rachie, what a nightmare for you hopefully you will be ok to go xx have you had any further hcg results yet?

Yes bleeding has amazingly stayed away, scan and shots to mature baby's lungs next week

Jackb, so pleased you babies are feeling a bit better now. Thank goodness he's still bfing, awful when they are ill like that and refusing to eat. Xx

 

[Mummy2Corban]

Dano what awesome news! And great news to your scan and shots next week. Xxx

 

[Sarahmcdoug]

I'm so happy to find a group of women who have gone through having a partial molar pregnancy. It feels so isolating sometimes because it's such a rare occurrence. Today I had my 6 month post D&C follow up appointment with my midwifery group. All along I have been told by two different midwives that I needed to wait to ttc 3 cycles after my betas hit below 1. They have stayed at less than 1 since early December, 8 weeks after the procedure, so we decided to start trying again this past month. It's been 4 cycles since then. Well, today my follow up appointment was with a different midwife and she told me I had to wait to ttc until July, a full 6 months after my betas were normal. I was stunned because it was the first I had heard that we had to wait 6 months and was so confused that I left without telling her I could be pregnant now based on what the other midwives told us. I came home and called them after I gathered my wits and am still waiting for a call back. Did any of you receive conflicting information about how long to ttc? I know the reasons they recommend waiting but There seems to be a lot of disagreement between 3 and 6 months after a partial molar. It's a little disconcerting that there is disagreement within the midwifery group. Did any of you get pregnant before the 6 months were up? Was anyone else told they only had to wait 3 cycles?

 

[Sarahmcdoug]

I'm so happy to find a group of women who have gone through having a partial molar pregnancy. It feels so isolating sometimes because it's such a rare occurrence. Today I had my 6 month post D&C follow up appointment with my midwifery group. All along I have been told by two different midwives that I needed to wait to ttc 3 cycles after my betas hit below 1. They have stayed at less than 1 since early December, 8 weeks after the procedure, so we decided to start trying again this past month. It's been 4 cycles since then. Well, today my follow up appointment was with a different midwife and she told me I had to wait to ttc until July, a full 6 months after my betas were normal. I was stunned because it was the first I had heard that we had to wait 6 months and was so confused that I left without telling her I could be pregnant now based on what the other midwives told us. I came home and called them after I gathered my wits and am still waiting for a call back. Did any of you receive conflicting information about how long to ttc? I know the reasons they recommend waiting but There seems to be a lot of disagreement between 3 and 6 months after a partial molar. It's a little disconcerting that there is disagreement within the midwifery group. Did any of you get pregnant before the 6 months were up? Was anyone else told they only had to wait 3 cycles?

 

[Sarahmcdoug]

Btw my betas were still below as of 2 weeks ago.

 

[ihave5boys]

Sorry sarah i had complete.

Rach so sorry you going through this praying for you still.

Afm- hormones hit like a tornado today. Work fast food as a manager cried for over 2 hours there. Just sucks big time. I guss my employees and costumers will have to get used to seeing me cry for awhile.

Vicki

 

[ihave5boys]

Man symptoms really hitting me like a ton of bricks this morning after being awake for over an hour wentband got sick of course all dry with phlem cause i didnt eat and ow feeling very queesy. And still cried on and off last night trying to get sleep.

Vicki

Good luck today rach.

 

[jacky b]

Rach, sending the biggest hugs hun! All the best for the final procedure. May this prove to be it for you and you can be on the road to all being over. Thinking of you and praying it goes well.

Wonderful news Dano that its next week for scan and shots. And even better the bleed has stopped. Thinking of you x

Sarah, sorry you had to find our group. But great news on negatives! I think the wait time is very dependent on where you are. I had a pmp in early 2012. I had my d&c in mid Jan, my levels dropped to negative in 6-7 weeks and then got pregnant with my daughter in late April (found out start of May). I think I had 2 monthly negatives. My specialist wanted me to have 3monthly negative results so I almost made it. Because it had taken 18 months to fall with the pmp we didn't expect it to happen quickly. My daughter is a happy healthy 2 year old

 

[rachieroo]

Soo... I was sent home!! The Dr's weren't happy about doing a third evac, neither was I so they spoke to charing cross who told them not to do the procedure and to monitor my hcg. If my hcg drops then they won't need to do anything but obviously if it rises it's up to charing cross what happens next. I rang charing cross myself when I got home. she said they shouldn't have done the second evac with my levels being as high as they were. She said my results will be ready tomorrow and they will ring me to let me know what's going in. I asked the next step if they aren't lower ( since the tissue measured bigger than last time it's not looking great) and she said I would go up to be assessed but that it will depend on the results tomorrow. so what I am to expect from chemo because I don't feel positive that it is going to get better on its own since my track record hasn't been great so far. Will dh be able to stay with me? What happens? I would rather prepare for the worst than not be prepared at all. Xx

 

[dan-o]

Ahh rachie, what a nightmare you poor thing

My experince: we drove up to london, spoke with Dr savage, they did a chest X-ray, detailed pelvic ultrasound, lots of bloods. Then went back in to see Dr savage again who explained my care plan, which was starting on low risk chemo first. I didn't need an MRI/ct scan as my chest X-ray was clear. In my case a D&C wasn't best option as there was risk of haemorrhage. I was admitted to the oncology ward. Hubby sent home to devon. I stayed there on my own the whole time. On my ward there was another molar lady opposite me and two other cancer patients. There was one other molar lady I saw while up there also.
Had a shot of chemo that day, then antidote next day, shot, antidote and so on for a week. They also give eye drops and mouthwash which stops you getting ulcers. Had to stay in bed as I was bleeding a lot. My hcg dropped really quick after the first round and my bleeding got better, so I was allowed home after that, and took my chemo with me to arrange with a community nurse. Community nurse couldn't do my chemo, so she trained me to do the shots myself. It was no bother. Had a week off (when I passed the retained mass) then a week on for a further 3 rounds of chemo once my hcg was 2<. Had bloods twice a week and full blood counts. Once the chemo was done and CX were happy I went back up for another ultrasound and got the all clear from Dr savage to start regular follow up. This has gradually spaced out as the years have gone by, I'm now on 6 monthly for life. Sounds awful but it honestly wasn't, the worst part was the heatwave at the time!! Chemo was like having a hangover really. My cycle returned once I stopped chemo. Started TTC once it was out of my system. I've had 10 of my 12 pregnancies since the chemo, two of which are my rainbow boys, and hopefully boy #3 cooking, so it hasn't stopped me having babies!!

Fingers crossed for you hun, maybe you can avoid the chemo if your levels come down on their own? I know how overwhelming this all is right now. Ask anything you want

 

[dan-o]

Btw my betas were still below as of 2 weeks ago.

Hi Sarah, so sorry for your loss hun and the added complication of molar
If your levels came down and stayed down, then you are in the absolute lowest risk category for cells growing back. If it were me and I was being honest with myself , I would probably just TTC xxx

 

[ihave5boys]

Aww rach so sorry. praying for you. It seams like i am hearing more of these stores with the partials i had no sign of having a molar except tge one little area dr talked anout tgat wsnt that big on my u/s. And he was shocked it was comolete he said he would have been less shocked if it was partial but still shocked. Anyways so sorry again for you rach.

Vicki

 

[ihave5boys]

Another blood test in mprning.

Vicki

 

[Mummy2Corban]

Rachie I'm sorry lovely! My course of chemo was the same as danos. Had X-rays and scans and because of the bleeding I was bed rest. DH and Corban stayed at one of my relatives near by so they could come and visit me. I had nausea and was tired with my treatment.

Hopefully your levels have gone down and you won't need treatment. Got all crossed chick xxx