# molar pregnancy...help



## star thistle (Jul 11, 2007)

yesterday i had an ultrasound, and was diagnosed with a molar pregnancy. i would be 12 weeks today, measuring 20+ weeks (so the cysts are pretty sizable). i have an in-depth ultrasound on tuesday and a surgical consult on wednesday. i feel like i am floundering in a murky bog of depression, anxiety, and so many questions. i don't know where to turn and because of the rarity of the loss, there aren't may mamas who have been there, done that. the midwife who did the ultrasound said in 20 years and 2000 births i am the first she has seen with the severity and progression of the disease. awesome. i feel really alone and scared.

can anybody give me any information on the process of removal and recovery from the inevitable d & c that must occur. i have been googling and not finding any info on the process especially in relation to molar pregnancy (or any support groups, forums etc for that matter). i just don't know what to do. should i look for an ob more experienced in molar pregnancy or just let my local doc do the procedure? are there any questions i should ask the surgeon? it is more advisable to go under general anesthesia or local? i know that it is super important that they remove every bit of tissue since there is a chance of it turning into cancer, an idea that really freaks me out. and i know there is something i am missing that i need to think of and i am worried that i won't know what it is. also how can they possibly remove cysts the size of a melon through a hole the size of a pencil???

hopefully by the time i have my surgical consult on wednesday, i will have sorted out all the variables and have the outcomes under control a bit. until then i am really in need of some support or advice or anything really.

warmly,
becky


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## claireb (Apr 7, 2009)

No advice because I have no experience with what you're going through but wanted to let you know I read your post and am thinking about you. Loss is hard enough without the added component of fear.









So sorry mama.


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## lesliesara63 (Dec 18, 2004)

I am so sorry. Hopefully someone else here has been through this. I just know that it is important to do whatever follow up blood work they recommend.


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## Blanca78 (Jul 26, 2009)

Hi StarThistle,
I am so terribly sorry. I know firsthand the shock and fear that accompany this diagnosis--my molar pregnancy was discovered at an 8-week ultrasound last December. I want to tell you, you WILL get through this. I had my D&C two days later, and while I know everyone's experience is different, the relief I felt at being able to move on following the surgery was major. I know you are probably just reeling and still figuring everything out, but you WILL come out of this. My hcg numbers dropped quickly. My husband and I waited the prescribed six months, and got pregnant again our second month trying. I could not belief the relief and amazement I felt to learn this is a normal, healthy pregnancy, but that has been the experience of the majority of the women I know who have had the molar diagnosis. I would suggest you check out the molar pregnancy board at babycenter.com, as there is a ton of information and support there.
http://community.babycenter.com/grou...r_pregnancies?

Please feel free to pm me if you want to know more about my experience and what you might expect in the months to come. For me, I know my first overwhelming feelings were of fear and shock, followed by sadness; but once I learned more about the condition, had the surgery, and had the chance to ask my doctor questions, things got a lot easier and less weird, and I felt I could move forward. With knowledge came a reduction in fear.

As for the D&C, in my experience it was not so bad. The surgery itself was not painful. The hardest part of the recovery had to do with the general anesthesia, not the surgery itself--my neck and shoulders were very stiff/sore for a couple days (like I had the flu) and I was pretty exhausted for the next week. I got my period back about five weeks later.

Waiting to TTC again was very difficult, but we stuck to doctor's orders (not every one does) and in a way I think it was good to give myself that distance.

There is another person on MDC who had a molar pregnancy, but I will let her get in touch with you if she likes.

ETA: According to my doctor, if the cells return, yes it may require (mild) chemo, but that is NOT cancer--cancer can result but it is exceedlingly rare. Do you know if you are diagnosed with a partial or complete mole? That makes a difference in the likelihood of the cells returning.

Like I said, I'm happy to share more of my personal experience with you--I've done a lot of research over the past few months.


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## cappuccinosmom (Dec 28, 2003)

I'm so sorry.


















I can imagine how scary this is for you. When I went in for an u/s after not finding the heartbeat, and I saw that big mass on the screen, I knew something was very wrong, even though the doctor had to come in and give me a name for it.







Mine was 10-11 wks at ultrasound, and 13 wks by the time of the D&C.

Here is one article on molar pregnancy--how it happens and prognisis when it does metastasize.

Quote:

i just don't know what to do. should i look for an ob more experienced in molar pregnancy or just let my local doc do the procedure? are there any questions i should ask the surgeon? it is more advisable to go under general anesthesia or local?
Molar pregnancy is so rare I don't know that many doctors would have had the opportunity to become particularly experienced in them. If your local OB is a good one, and confident about the surgery, I would just go with them.

From my experience, if I ever have to go the D&C route again, I'll just ask for general anaesthesia upfront. In your case, they may just advise it first, because of how advanced things are.

Quote:

i know that it is super important that they remove every bit of tissue since there is a chance of it turning into cancer, an idea that really freaks me out.
The cancer thing is scary. But actual chances of it moving to cancer are 1-2%. And your doctor will be following your health (by bloodwork) aggressively for at least a year, so if you are in that 1-2%, they will catch it and deal with it quickly.

Quote:

and i know there is something i am missing that i need to think of and i am worried that i won't know what it is. also how can they possibly remove cysts the size of a melon through a hole the size of a pencil???
This is the detailed part, some may not want to read it....

They will artificially dilate your cervix to widen the opening. Whatever solids there are in your uterus will likely come out in pieces if they are too large to pass through your cervix whole.


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## Blanca78 (Jul 26, 2009)

Quote:


Originally Posted by *cappuccinosmom* 
And your doctor will be following your health (by bloodwork) aggressively for at least a year, so if you are in that 1-2%, they will catch it and deal with it quickly.

I would just say it's not necessarily a year--that's an older guideline but a lot of doctors are doing six months from negative now. Some are even saying three months from negative (. Six seems to be the standard from the people I've encountered, but of course it all depends on the doctor and I think how long it takes to reach negative and whether chemo is needed. Drs. Goldstein and Berkowitz at the New England Trophoblastic Disease Center are leaders in the field and their latest recommendation appears to be three months from negative. I believe it's Dr. Goldstein who will respond to emailed questions.
http://www.brighamandwomens.org/bwhc...se-center.aspx


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## momtoonewabun (Feb 21, 2010)

I don't think I've ever posted on this site before but since I've suffered a molar pregnancy in the past I thought I would give you the short version of what I went through. My first pregnancy was when I was 19. I always knew there was somthing wrong but I couldn't get the doctors to listen to me. I had all the symptoms... brown spotting, 25 week belly at only 10 weeks, so sick I couldn't keep even a mouthful of water down. Laying in bed I couldn't move a muscle without throwing up. I was finally diagnosed as having a molar pregnancy at 13 weeks. I had a d&c a few days later (I was put to sleep). 2 blood tests and 2 weeks later we discovered it was still growing. The day after we got those results I got a call from the cancer clinic for an appointment for my first chemotherapy treatment. It was very stubbern, it took 7 treatments over the course of 4 months for my hcg to drop to below 5. I stayed 2 days at the hospital each time I went because they had to monitor my ph levesl. After my hcg dropped below 5, I went for blood tests every 2 weeks for 6 months to make sure it wasn't growing back and then once a month for another 6. This was almost 6 years ago now. I have had 3 pregnancies since then, a boy who is almost 4, a miscarriage at 10 weeks and another baby boy who was born this summer.

I hope you don't have to go through what I went through. I hope the d&c works for you. My only advice is to take it easy, don't stress about anything and get lots of rest. I'm sorry you're going through this.


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## 5gifts (Nov 16, 2005)

Its been 7 years ago- that I had a molar. I had 4 kids before & I knew it was wrong at 11weeks with the brown bleeding & sooo sick. I couldn't get anyone to take me seriously & do scan for 2 weeks. I turned out fine & was preg the next year with a similar due date....and just now had another.

About going under - I had a d&c 16 years ago after a m/c. My oldest was 18mths & nursing. I hurt so bad after - every muscle in my body, even my face. With the molar - I mentioned that. They said it was a reaction to the muscle relax. to intubulate. They actually gave me a couple of options. Put brain to sleep or do a twighlight sed with a spinal block. I don't really remember.


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## star thistle (Jul 11, 2007)

thanks mamas. for the hugs, advice, and experience. thanks for sharing









i am feeling slightly better depression-wise. it is so good to hear that other women have gotten through it and can be positive about the future. physically, i am as sick as ever and actually had some brown bleeding upon waking for the first time. i had a very rough night as my newly 2 year old ds insists on nursing as much as possible throughout the night. any idea if this is a situation in which i must wean? i would hate to lose that aspect of our relationship, but nursing though this pregnancy has been such a struggle.

5gifts--is it standard procedure to intubate when under general anesthesia? i know that going under completely carries it's own set of risks.

blanca78--thanks for the links, they are scary and overwhelming, but it is such a relief to hear some hard facts on outcomes, stats, etc. and thanks for the board link, i have a lot of research to do...if you have a chance, feel free to send me any and all links you have, i really do feel knowledge is power and the more i know the stronger i will be.

at this point, i am ok with not having another child but i am only 29, so i imagine that may change. i would rather just clear my mind of any hope for the future and accept that it may never happen again. our first son was stillborn at 39 weeks, we have endured multiple miscarriages, and are so blessed to have my beautiful son with us now. we have had a rough go of it as far as reproduction. the thought of suffering through a repeat molar pregnancy is so daunting, i feel like have lost a vital part of myself in the last 2 months (since the extreme illness, vomiting and exhaustion kicked in). i have lost 12 pounds (down to 123) in that time and i feel like i have a life-sucking disease. it is impossible for me to walk up and down the stairs without my pulse skyrocketing to 140+. all i want to do is sleep the day away. in light of how awful my health has been for the past 2 months, i am so excited that i will find relief when the surgery is over.

i would love to know how it felt for any of you after the surgery. is it something i will bounce back from in days, weeks? i know i am anemic and that i quite possibly have a thyroid problem. will these things resolve by themselves after the procedure or are they long-lasting? is there anything i can do to prepare myself or my body? should i anticipate needing full time assistance with my son?

i really appreciate all the help you mamas have given me. it means the world to me that i can find comfort and solace from you and garner strength from your victories. thanks so much, really.

warmly,
becky


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## Blanca78 (Jul 26, 2009)

Starthistle--I will send you some links when I have the chance. The babycenter board has an FAQ that has quite a few helpful links/articles, too.

Keep in mind that the chances of a repeat molar are exceedlingly low. It does happen very occasional but on the level that most doctors have never even seen it. As my doctor put it to me, yes your risk goes up, but the risk was so low in the first place that the repeat risk is also very low. You won't get hit by lightning twice.

HUGE hugs.





















I was fortunate not to have many symptoms and catch mine early, so I imagine all the health difficulties that typically go along w/a molar pregnancy must be very taxing. As I said before, I didn't feel the d&c was too bad, and save for the first couple days when I was very sore from the anesthesia and had some cramping from my uterus going down, recovery wasn't bad--mostly just tired.


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## 5gifts (Nov 16, 2005)

I *think* they have to intubulate when they put you all the way under. I had the spinal block with the molar. My chiro said always best not to put the brain all the way to sleep. He adjusted me afterwards & I was 'out' in the spot they did it. I was so sick too at 11 weeks. Couldn't walk up the stairs the day I went to the 1st doctor....and they sent me away, dehydrated even, after taking blood & patting me on the back saying'sorry hon, there's nothing we can do if you're misscarring.' Of course I was an absolute hormonal/emotional mess)

I started taking red rasberry leaf and drinking liquid chlorophil. I think both of those would be good for you both before & after. RRL tones the uterus & chlorophil builds the blood - and its good in just plain water...minty. Though I'm sure it doesn't sound good to you right now! I felt just fine right after - I hope you do too.

I was nursing an 18mt old during the molar as well. He continued to nurse till he was 5! Nursed right through my preg the next year & tandumed for 2 more years. All my others have stopped nursing a few mths into a next preg. With both my d&c the kids were right there with me waiting to get taken back & my nurslings nursed even while they put an iv in. I tried to go as many hours as I could before I nursed them afterwards, but its ok to nurse. Both times friends brought meals. Really helped, because of delays we were at the hosp ALL. DAY. with 4 kids & just snacks.


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## momtoonewabun (Feb 21, 2010)

I don't remember much about after my d&c. I do remember that I woke up in tears and the nurses couldn't calm me down. I was very weak. I couldn't leave the hospital on my own 2 feet. It got a little bit better when I got home and rested but I was still super weak and it lasted for a couple months. I'm guessing I felt so terrible due to the fact that the d&c didn't take care of it. Chances are you'll bounce back quickly. Of all the stories of molar pregnancies I've run across on the internet, not one of them has had as bad a time of it as I had. I'm sure there are women who have had it as bad and worse than I but I think it's even more rare than having a molar pregnancy in the first place. It might be a good idea to line up help with your son just in case you need it.


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## cappuccinosmom (Dec 28, 2003)

Just to encourage you, repeats of molar pregnancies are rare. There wispy evidence that it's more common in certain ethnic groups and geographies, but by and large there isn't an environmental or genetic cause known. So having had one doesn't mean you're going to have another.

As to the illness, I so sympathize. The illness with molar pregnancy was just horrible. That's because the mole causes your hcg hormones to skyrocket. Mine numbers were 400,000+ at one point. That's where the nausea comes from. If you are going to be waiting a few more days before this is dealt with, you might want to consider something like Unisom to help ease the sickness. Start with a half dose though, the full one knocked me right out.


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## baby3in2011 (May 27, 2010)

oh, im so sorry to hear this







i had a partial molar pregnancy in january this year. the babycenter link blanca sent you is where i went and it was good to have support of those who have been through it. it was devistating to learn of the pmp, for my d&c i just had a spinal, "going under" is not something i was comfortable with and my dr. respected that. if i remember correctly my hcg levels dropped to negative in about a month, but it's different for everyone. i'm sorry you have to go through this, but you aren't alone you can also feel free to pm me if you need to talk.


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## star thistle (Jul 11, 2007)

i just wanted to update on my condition, and let all you wonderful mamas know what i'm going through.

i had my in-depth ultrasound on tuesday and a surgical consult on wednesday. it has been a rough week so far. we found a doctor that has had experience in molar pregnancies and done a lot of d&c's in his career. it was a good thing we found him too, because once my local ob/gyn (the one who attended my first son's birth) saw the ultrasound results, his office called to let me know he was uncomfortable doing the procedure and was going to refer me to another doctor/practice. the ultrasound showed a 15x15x10 cm growth (i personally think this is conservative, as i am measuring 22 weeks+). there was also multiple cysts on both of my ovaries, a complete molar pregnancy. it is inconclusive if the mole is invasive, but the report did note that they could not see my uterus (either it was overtaken by the tissue or severely displaced by it).

my husband and i traveled 1.5 hours to meet and consult the ob who will be doing the surgery. he was very warm, knowledgeable and came highly recommended. and although he seemed confident that everything would be ok, we was very explicit about the risks and possibilities that i would be dealing with. he immediately got me in to draw blood and have a baseline chest xray. he outlined the surgery and the risks. i will be going under general anesthesia. because my womb will essentially an open wound during the surgery, i may lose blood and there was a 50/50 chance of needing a blood transfusion. he let me know there was a possibility of puncturing my uterus or my uterus fusing together after he removes the tissue. obviously he let me know that there is an inherent risk of dying during the surgery due to general anesthesia and hemorrhage. and he also wanted me to be aware that he would do his very best to preserve my uterus in spite of my lack of desire to get pregnant again. there is a 20% chance of needing chemo and because of the size of the growth, he said it was nearly impossible to remove all the matter during the d&c, i must pass whatever is left on my own. he was very thorough and aside from the scary possibilities, somehow made me feel relaxed and confident.

i also received the results of my blood work and chest xray. my hcg level was 2.3 million (normal singleton pregnancy is in the 100,000's). i am hyperthyroid. my blood levels are good for surgery and my chest xray was clear.

my surgery is scheduled for 9 am tomorrow, so if anybody wants to think good thoughts or send good vibes, i would really appreciate it. my main goal is to get out alive and with my uterus intact. it would be really great if once the surgery was done my hcg would immediately go to 0. that's me being optimistic.

thanks for reading and for the support, it means the world to me.

love and light,
becky


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## Blanca78 (Jul 26, 2009)

Becky, I'm so sorry. That sounds incredibly scary. I'm glad you have a good doctor you trust and like--it sounds like you are in good hands.

I remember when my doctor went over all the risks of the surgery (hemorrhage, uterine puncture, etc.) I was absolutely terrified--even more so than with the molar diagnosis, almost. Just remember they HAVE to tell you that stuff, but the chances of any of it happening are pretty low. Surgery is just all around scary, but there is every odd you will come out just fine.

In any case, I am thinking of you and sending all the good vibes and thoughts I can. Please update here if you get the chance after your surgery--thinking of you.


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## javilu (Oct 20, 2007)

You are in my thoughts and prayers!!


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## mesa (Aug 19, 2006)

I had a pmp 3 years ago. Mine, however, wasn't diagnosed until after my D&C and the pathology report came back. In my case, it took about 4 months for my levels to return to normal, and I had a few bizarre bleeding episodes during that time, but eventually all returned to normal and I conceived and had my beautiful daughter soon after. I'm now pregnant with my 4th (and last) baby, due next week. I can't recommend the MP board at babycenter enough, they were very important in my recovery, and the support over there is amazing. Your case sounds incredibly involved, and it must be so scary for you and your husband. I'm not sure if you've completed your surgery yet, I'm on the other side of the world, but I'll think of you anyway. I will pray that your recovery is quick and uneventful


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## baby3in2011 (May 27, 2010)

you're in my thoughts, it seems you have a good doctor taking good care of you.


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## cappuccinosmom (Dec 28, 2003)

Wow.







That sounds so scary. I'm glad you found someone who is a specialist. It sounds like you got hit with the worst of worse possibilities. I'm so sorry.


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## happyhippimama (Apr 11, 2007)

any update?


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