Newbie -- Is this the right board for me? Myomectomy advice needed

maceecole42 · December 2014

I have been TTC for over a year now, went to the doctor in July 2014. He scheduled me for ultrasound, HSG and bloodwork. Doc found a 10 cm fibroid on my uterus that I now have to have removed. I am having an open myomectomy on 12/10/14 and am kind of freaking out. Doc says there could be scaring that may make it harder to conceive or may close my Fallopian tubes (which were proved to be open when I got the HSG after an HOUR of the doctor fishing around with a metal catheter to try to get to my cervix beyond the fibroid). Has anyone had a myomectomy? If so what can I expect for recovery? If this is not a place for me, which board would you suggest? Thanks!

maceecole42 · December 2014

Thanks for the tip! It's ten cm, about the size of a cantaloupe. I believe it's in the uterine wall on the backside of my uterus. My doctor didn't really discuss much about where it was, not that I thought to ask which makes me sound like a total airhead. I do know it's not on a stem or anything and it's on the outside, my uterus is also 10 cm due to the fibroid.

SND1231 · December 2014

Sorry no advice, but wanted to say welcome. Good luck with your surgery!

wanderlust508 · December 2014

Hi, I was just doing a quick check in on 3T and clicked on your post right away when I saw "myomectomy advice needed". I just had a robotic myomectomy (like @Rumbera28) on 11/21. And I believe a couple others have had the surgery as well. So you're definitely in the right place!

I'm gonna 2nd what Rumbera said that it's VERY important to find out whether your fibroid is submucosal (protruding into the inside of the uterus), subserosal (on the outside wall of the uterus) or intramural (within the wall of the uterus). Usually the submucosal fibroids are the ones that are more worrisome because they can interfere with implantation of an embryo or contribute to early MC. I had 2 fibroids that were subserosal (found in 2011). I was told for a long time that I didn't need surgery for them. Then suddenly after 3 rounds of fertility treatment earlier this year they more than doubled in size!! And the Dr's changed their tune and told me I needed surgery. What followed was a really frustrating, confusing and emotional journey for me.

I want to share the short version of my story with you in hopes that it will be helpful for you. When I got an MRI done in August, my largest fibroid was 13x15cm. I was shocked! The first Dr that I was lined up with was supposed to complete my surgery laparoscopically on 8/29. But after she saw how large the fibroid was, she told me that she would most likely have to do an open myomectomy AND that it would most likely require a vertical incision from my navel to my pubic bone. I was freaked out and so emotional after my appointment with her. Thank God for my DH and his support during that time. Luckily someone I worked with (a physician herself) advised me to seek a 2nd opinion from her friend/colleague who almost exclusively did myomectomy surgeries. I got in touch with that Dr (who was nice enough to talk to me and look at my chart even though she was on Maternity leave and not seeing patients at the time). She told me she thought my surgery should NOT require an open myomectomy and that she was happy to refer me to her other colleague who would most likely agree with her that my surgery could be done laparoscopically. She referred me to Dr Y who was awesome. She put me on a medication called Lupron for 2 months to shrink my fibroids to a more manageable size in preparation for surgery. Unfortunately Dr Y got injured and was unable to do my surgery (which was scheduled for 11/5). But luckily the stars aligned and within a week of getting the devastating news that my surgery date with Dr Y was cancelled, I got referred to another great surgeon, Dr O. My robotic myomectomy was completed with him on 11/21. It took about 5 hours. I was in a lot of pain the 1st night ....but after that it has been pretty manageable. And I'm amazed by how great the recovery has been. I saw Dr O for my post-surgery appointment yesterday and he was pleased with how well I'm healing. He cleared me to do some aerobic walking (and start a light jog early next week) and said it was fine for me to be back at my normal level of activity by late next week (yoga, pilates, running) as long as I'm tolerating it. And I can start TTC at the end of Feb (3 months after surgery).

If it is at all possible with your health coverage, I strongly recommend you get a 2nd opinion!! If I had gone with the 1st Dr who was supposed to do my surgery, I would have had an open myomectomy with a vertical incision and most likely that recovery would have been a LOT more painful than this one has been. I cannot say enough how happy I am that I was able to undergo the robotic myomectomy. Your fibroid is not even as big as mine was before I got set up with Dr Y .....so I really really hope a different Dr could give you some better news about your surgery options. Feel free to PM me anytime! I'm happy to answer any more questions. Good luck.

mshandlebar · December 2014

Welcome! I also don't have any advice, but I am wishing you the best of luck for tomorrow!

jencity9 · December 2014

I am chiming in a little late.. I hope the surgery went well! I had a robotic myomectomy last year and it went well. I'm very happy I did the surgery (though I am still not pregnant yet). Let us know how it went and if you have any questions about recovery.

maceecole42 · December 2014

Thank you all so much! The surgery went well and my doctor said he was really happy with it. It was on the outside but also protruding into the wall, not through though. He said he didn't have to cut near the tubes so it is unlikely scar tissue will close them. I have VA medical insurance so they do everything the cheapest way possible, ie no robots lol. That being said, my doctor is phenomenal and he just left his private practice to work in the VA to make care there better (from the nurse at the women's clinic not my doc) I had a good experience at the hospital, walking around the next day and eating fine. I got released Friday morning at 9. I got hydrocodone that morning but have only been taking ibuprofen since, thankfully I am not really in much pain at all. My incision is longer than I thought (doc said it would be 3 inches, ended up about 6) but it's not really that bad because they only had to glue it together so no staples. Yay! I will have to have c-sections for any future children but they will just use the same incision site so I'm not too concerned about it.
I am mostly being so detailed because if anyone tries to find info about this kind of thing, I hope my story will help

I will say that the most pain I have been in was coughing, gas pains and the dreaded first post-op BM. If there was one single thing I wish I had known it would be how terrible that was. If I could go back I would only eating fruits and veggies and drink water the entire day before and every day up to that point. And take stool softeners immediately upon returning home.
My doctor said I have to wait at least 3 months before trying to conceive unless I'm cleared by him before that. I have an appt Dec 23 for a checkup. Does anyone remember their first post-op checkup and what it was about? Wondering if I will learn anything.new about the condition of my uterus or just make sure I'm not having complications related to surgery.

wanderlust508 · December 2014

I'm so glad to hear that your surgery went well!! I had my post op appointment about 2 weeks after surgery .... it was pretty brief. My Dr looked at my incisions and made sure they looked good and were healing well. Also, I didn't really get to talk to him right after my surgery (he spoke with my family because I was still groggy and coming off the anesthesia ...and I went home a few hours after surgery ended). So my post op appointment was my chance to discuss with him how everything went. I was also told to wait til 3 months after surgery to TTC.

Good luck as you continue to heal! Hope you will hang out here and become part of the community

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Newbie -- Is this the right board for me? Myomectomy advice needed

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