Waiting until April, 2013: Giant Fibroid, Lupron, then Myomectomy.

[PixieQ]

April 2013 seems so far away, but we will have to wait to try until then. I don't even know where to begin. My husband and I have been TTC for over a year now, and we recently found out that I have a giant fibroid (17cm) that essentially fills my whole pelvis up to my belly button. It has to come out, and I am going to have a myomectomy at Brigham & Women's in Boston. But before I can even have the myomectomy, I have to be on Lupron for 4 months to shrink the fibroid. Then I have to wait 6 months after the surgery to try to conceive.

I wish I didn't have to wait so long, but honestly I am just glad to have answers about why it's been so difficult. I didn't want to be closing in on 40 when I had my first child, but it's looking like that will be the case.

 

[meandrod]

I've been trying to conceive over a year. Miscarried in December and then again in May. My OB recommended my fibroids be removed. I got a second opinion at a fertility clinic. They went through all of the testing and everything came back normal. I do have fibroids, but they are all outside of my uterus so the fertility clinic said fertility should'nt be affected. Well since everything came back normal, I am back to where I started. I guess I will have the myomectomy next week. My OB wants to also see if I have endometriosis. So we'll see. This is all so frustrating. I plan to try atleast 3 mths after the myomectomy. The fertility clinic said the best results are found in people who try earlier due to the formation of scar tissue after the myomectomy.

 

[BabyBean14]

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[PixieQ]

Thank you both for your responses, meandrod and Kismet. It is frustrating, especially when friends all around me are getting pregnant left and right! But I am very thankful to have answers. I am going to try to post on the progress of the lupron and the myomectomy, mainly so that others can read about my experience if they are ever researching this particular subject.

 

[BabyBean14]

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[PixieQ]

So, just a quick update on the Lupron in case anyone is ever searching for this in the future: So far it has been no big deal. I'm about 3 weeks past my first shot and I have had some fatigue, a few hot flashes and some joint soreness, but nothing unbearable. The bonus is that this stuff seems to really be working to shrink my fibroid! 3 weeks ago the top of my fibroid was above my belly button, and now it is below it. My belly is visibly smaller. I'm impressed.

 

[BabyBean14]

I'm glad it's working!

 

[PixieQ]

Thank you Kismet!

 

[CRizzo]

I am so glad I found someone else somewhat in the same boat. I don't have one as big as yours, but I do have 2 8cm fibroids. One taking over my uterine cavity and the other is outside, on top of my uterus and is pedunculated (on a stalk).

I suffered a miscarriage at 9 weeks back in May and was devastated because I did an IUI at a fertility clinic and they went ahead with the IUI anyway even though they knew about these fibroids. I had to go in for a D&C after an ER visit for extreme pain resulted in a ultrasound showing no heartbeat.

After the D&C my OB suggested a MRI to see where they were exactly. Then she told me about the Lupron for 3 months then a Myomectomy.

I am currently a week and a half into my Lupron shot and have had alot of fatigue, some joint pain and funny enough, I am breaking out like I am a teenager again! Have you noticed any other side effects?

Fingers crossed that your fibroid decreases in size even more and you can get to baby making that much faster!

 

[PGS]

I am so relieved to find out fibroids is a common thing. I have an 8.5 cm fibroid outside the cavity wall and I am advised Myomectomy to get pregnant. I am bit confused as to should I go for the surgery right now or not? I am 30 and we havent really started trying for baby. So I am a bit confused that should I go the surgery now as the size of the fibroid is large and its just outside the cavity wall or atleast try to get pregnant and if nothing happens then go for the surgery? Just too confused

 

[PixieQ]

Quick update for anyone else searching for this same topic: I've been on Lupron for over three months and it has not done anything to shrink my fibroid. The dimensions are the exact same as they were before I tried the Lupron. Now, I don't want to scare others away from using Lupron if your doctor recommends it, but in my case it didn't do one thing to shrink the fibroid and I had hot flashes, night sweats, memory loss (ex. forgot where my car was parked and had to walk 5 floors of a parking garage to find it, which is unheard of for me), months of sleep deprivation (thanks to the night sweats) and while my periods stopped at times, at one point I had a period for a month. What I'm saying is: It's not a miracle drug. And I didn't want to go on it, but my Dr. insisted he wouldn't do the myomectomy without it, so I did it, and it didn't make a damn bit of difference. I guess what I'm saying is: don't be afraid to say no to your doctor. I wish I had. Now I've had to wait 4 months for my myomectomy for no good reason. So I'm scheduled for surgery for early October. I'll post more about that experience when it happens.

 

[PixieQ]

I am so relieved to find out fibroids is a common thing. I have an 8.5 cm fibroid outside the cavity wall and I am advised Myomectomy to get pregnant. I am bit confused as to should I go for the surgery right now or not? I am 30 and we havent really started trying for baby. So I am a bit confused that should I go the surgery now as the size of the fibroid is large and its just outside the cavity wall or atleast try to get pregnant and if nothing happens then go for the surgery? Just too confused

PGS, I would go to an OB/GYN who has some knowledge about fibroids. My general practitioner didn't know anything about them except that they were "harmless," so I would definitely go to someone who knows more about whether this will impact your ability to get pregnant and to carry a baby to term.

 

[PixieQ]

CRizzo, I posted above about my side effects. I will post more about the surgery after I have recovered. Best of luck to you!

I am so glad I found someone else somewhat in the same boat. I don't have one as big as yours, but I do have 2 8cm fibroids. One taking over my uterine cavity and the other is outside, on top of my uterus and is pedunculated (on a stalk).

I suffered a miscarriage at 9 weeks back in May and was devastated because I did an IUI at a fertility clinic and they went ahead with the IUI anyway even though they knew about these fibroids. I had to go in for a D&C after an ER visit for extreme pain resulted in a ultrasound showing no heartbeat.

After the D&C my OB suggested a MRI to see where they were exactly. Then she told me about the Lupron for 3 months then a Myomectomy.

I am currently a week and a half into my Lupron shot and have had alot of fatigue, some joint pain and funny enough, I am breaking out like I am a teenager again! Have you noticed any other side effects?

Fingers crossed that your fibroid decreases in size even more and you can get to baby making that much faster!

 

[BabyBean14]

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[PixieQ]

Thank you once again, Kismet. The surgery went well. I went in on Oct. 2nd and I have been recovering since then with lots of support. Once again, for those wondering, here is a bit of detail about that experience:

My doctor advised that I do a mild bowel prep prior to the surgery. I arrived at the hospital in the morning hungry and dehydrated, but this went away as soon as they hooked me up to an IV and gave me fluids. I felt that the staff at Brigham & Womens were all very professional, including my doc, the anesthesiologist, the nurses, etc.

The surgery was about 3 hours long. I don't remember much, obviously, but I learned that I had one big fibroid and two small ones and they removed them all. I lost a lot of blood, but they did not have to do a transfusion. Because I don't live locally, I stayed overnight at the hospital after the surgery, and I was grateful for that. It would have been a very uncomfortable drive home. I was on pain meds for the first two days, but I'm down to just ibuprofen now and lots of rest. I will have to wait 6 months before ttc. I have 5 port sites where there is surgical tape and there is some bruising but the pain has not been anything unbearable at all. If anyone is thinking that their large fibroid might be getting in the way of TTC, I highly recommend this surgery. Dr. Gargiulo was great.

 

[BabyBean14]

Whew! I'm so glad the surgery went smoothly! I hope you recuperate very quickly.

 

[PixieQ]

I just wanted to post a quick update in case anyone else is researching giant fibroids, myomectomy, robotic-assisted laparoscopic surgery, pregnancy after myomectomy or anything related to that.

I fully recovered from the surgery and then we started TTC. After 6 months of trying we consulted a reproductive endocrinologist because it seemed that nothing was happening. We went through some diagnostic procedures and found a blocked tube and diminished ovarian reserve, as well as some issues on DH's side (low count/motility/morph). We tried one round of IUI with Clomid in Oct. of 2013, and then made up our minds to try mini-ivf in Jan. 2014. Before that could happen we got a BFP on our own.

I am currently 29 weeks pregnant. So pregnancy after myomectomy is possible! Even if you have other issues (which we obviously do) it is possible. And due to the size and location of the fibroid, I will be having a c-section at 37 or 38 weeks, but that is a small price to pay for having a wonderful dream come true!

 

[Eleanor ace]

Congratulations on your pregnancy, that is wonderful news

 

[BabyBean14]

Fantastic! Thanks for the update!