Fibroid Removal Surgery

elisam511 · January 2017

I am wondering if there is anyone who has had a myomectomy to remove fibroids? I have three fibroids (one intramural and two pedunculated on the outside) and my obgyn thinks the reason for my miscarriage in November was the intramural fibroid. They are about the size of a walnut. Positives and Negatives to having the surgery, experiences, thoughts and opinions are welcomed and appreciated! Thanks and you can watch my fertility journey here: https://www.youtube.com/channel/UCqLRjZ6tkRGcNhJUo5Ehn0g

IfYouCanDreamIt · January 2017

I've had two fibroid removal surgeries, a laparoscopic hysterectomy to remove a large subserosal fibroid and a myomectomy to remove a small intramural fibroid which was discovered after our second IUI. With my first operation I had no choice but to remove it as it was rapidly growing and was the size of a grapefruit when removed. I did the myomectomy surgery as both my GYN and RE believed the position of the fibroid would have caused a miscarriage should I have gotten pregnant. The most frustrating thing with the operation was the delay in TTC, though we got cleared after 3 months.
Any time I go for a scan I dread about hearing about fibroids, but I do not regret about the surgeries and would do it again if needed.
Wishing you the best of luck xo

elisam511 · January 2017

Thank you so much for sharing your story with me! Our plan is to embryo bank with IVF, then once we have enough frozen embryos reserved in a freezer, we will do the surgery and recover swiftly.... after everything is healed and I am cleared to transfer, we will hopefully get pregnant again and we can have our baby! It is definitely frustrating to think of the timeline, and how much you are 'set back' with those stupid fibroids. It hurts even more for me, as I have DOR, so time is NOT on my side... that is why we are doing the embryo banking first, before surgery. Thanks again and how are you doing now? It looks like you are in your third IVF cycle and transferred 3.... any results?

Bharvey10 · January 2017

I had a myomectomy to remove a fibroid that was found at the beginning of our IVF cycle. It got half the size of a orange and my doctor say she wouldn't do a transfer till after it was removed. We went ahead got eggs fertilized them and froze them. While in surgery they discovered one on my cervix as well. The one fibroid that was sitting on my uterus was the size of an orange when they took it out. We are not set to do FET the end of February! Good luck to you!

srh18 · January 2017

@elisam511 I do not have experience with fibroids but I remember you from before and wanted to say sorry for your loss. Best of luck with next steps!

ChocolateIsLife · January 2017

@Elisam511 Sorry you are having to get a myomectomy. I currently still have fibroids, but have had several procedures, including a myomectomy in the past to remove the largest ones that would interfere with a pregnancy. Although my last surgery was pretty traumatic, I will say that it has greatly improved my quality of life, and was worth it. My back does not hurt nearly as much, and I do not have to change my tampon every 30 minutes while on my period

I wish they could have removed all of them, as the ones that they couldn't get to have grown since the surgery, but luckily they aren't interfering with anything at this time. I will say that I wish I would have started prepping with stool softeners before hand and would suggest asking your doc about it. I was sooo constipated afterwards and it was one of the most painful things. Since they had to cut through the muscles in my stomach...that is not an area that you want to be straining in any way. It took me 8 days before I could go to the bathroom. Also, if you get nauseous from anesthesia please tell them before hand so that they can give you something in your drip. Besides that I would say drink a ton of water when you leave the hospital. If I could go back in time to before the surgery, I would sit my husband down and explain to him how invasive surgery paired with opiates on drip can make some people cray cray. I myself was pretty wigged out, and apparently dilaudid makes me an angry lady. So I would warn him and tell him to be extra nice and patient anyways. One thing that my doctor told me was that it would be difficult to find someone willing to perform a vaginal birth after the myomectomy, so I needed to prepare for a cesarean when the time comes. I hope any of this was helpful, but if you have any other questions I am happy to help answer if possible!

IfYouCanDreamIt · January 2017

elisam511 Good luck with embryo banking, that sounds like a good plan! I'm currently on TWW, we transferred three little embryos in a day 3 transfer. Anxiously waiting to find out if we have a sticky bun, will go for beta on Sunday.

elisam511 · February 2017

@ChocolateIsLife THANK YOU so much for sharing your story with me! I appreciate your advice! I haven't had the surgery, and to be honest, and after much consideration, I don't feel that we are ready at this time to do the surgery. I have three, and the biggest is the size of a walnut. None of which are in the uterine cavity. After doing a D&C for the miscarriage, I actually feel that my period cramps are not as severe! We are currently taking an IVF break and will 'try' on our own (and with the help of letrozole) for a couple months. Please keep in touch!

elisam511 · February 2017

@IfYouCanDreamIt how are you doing??

eggplantface · February 2017

I've had two myomectomies. For my first, it was scheduled to be laparoscopic, but when the surgeon got in there she said she couldn't have gotten it out without shredding my uterus, so she switched to open surgery. It was a shock when I woke up!

The first time she removed one fibroid, from the back of the uterus, that was 10cm (grapefruit). I continued to have heavy periods and bad cramps. The recovery wasn't too bad. The painkillers made me sick and lethargic, but I felt better after two weeks and was back in the gym (walking on a treadmill) at 4 weeks. I suffered a setback when the scar tissue from the surgery caused a bowel obstruction that sent me back to the hospital. But after that I felt fine. When I went for an ultrasound to check the location of my IUD they found another fibroid inside my uterus that had been eclipsed by the large one in previous ultrasounds, but it was small (about 2 cm).

Fast forward four years, and I'm TTC #1. We had no luck for 6 months, I'm over 35, so we went to the RE. He did an HSG and saline sonogram and immediately said "You have to have surgery." The HSG and saline sono showed that the small fibroid they found had grown to about 3cm, but the large one on the back had actually grown back! It was about 6cm and taking up much of the uterine cavity. I scheduled another myomectomy, open surgery again. The recovery was not as easy. I took Motrin instead of opioid painkillers because of the previous bowel obstruction (opioids slow down/stop intestinal movement so that allowed the scar tissue to take hold). The Motrin actually worked very well, and I didn't have the nausea and lethargy like I did the first time. It took me a lot longer to stop feeling pain in my abdomen from things like bending over, or even standing up straight. Or standing at all for a long time.

After a couple of months I tried walking on a treadmill at the gym and had such massive pain in my abdomen that night that I didn't go back for another month. Then I had the pain again the next time. And the next. It was around 5 months that I was able to workout without massive pain. At 6 months I went back to my HIIT classes and was OK, if slow, but any lower ab exercises were a no-go--it hurt so much. In fact, it's been 13 months and I still feel strain and pain when I do lower ab exercises. Not "sore" or "building muscle" pain, but "this has been sliced open" pain.

But, on the plus side, removing the small fibroid changed my period completely for the better. I used to have heavy bleeding for two days (fill a super+ tampon an hour), then bleed enough for a tampon for at least two weeks (H loved that...) plus terrible cramps. Now my periods are two, three days at most, minimal cramps (as I sit here waiting for my Advil to kick in on CD1!). I remember telling my doctor about my heavy periods and she didn't seem alarmed, and now I know they had a cause and they're NOT normal, so I advocate for people to get ultrasounds to check for fibroids if they have heavy bleeding and pain, because it shouldn't be happening.

I recommend using MiraLax during recovery because it hurts to bear down in the first few weeks, so easy poops are ideal

Also get a belly-binder (like a velcro-girdle) to hold your abdomen in when you're upright. I had one for my first surgery and it helped me so much with walking and with muscle recovery. I didn't have one this time and my theory is that is why my abs took so long to get back into shape. If you can get away without opioid painkillers like Percocet, do it. And I slept in our guest room for a week because I didn't want to risk H touching my abdomen in his sleep, or the dog moving around and walking on me.

If you have any questions let me know! I'm happy to help. There aren't many young women with fibroids so I like to provide information.

And FWIW, I didn't get pregnant naturally after surgery. We tried for 7 cycles, including two IUIs, but nada. We're starting IVF now. But we also have other factors that are at play.

elisam511 · February 2017

@eggplantface thank you so much for sharing your experiences! I am sorry to hear that you went through so much pain. I am wishing you the best of luck in the next chapter of your journey! Please keep in touch and let us know how you are doing!!!

sarcasticowl · August 2017

@eggplantface We could be twins. I wasted two years going to my GYN looking for help with heavy periods and all she did was try 5 different BCPs. Never once thought to do an u/s to look for anything amiss. And I was 31-33 at the time! From a woman doctor, I was shocked at her lack of interest in really getting to the bottom of my bleeding. I actually was going through ULTRA tampons (the kind you have to order from Amazon - the purple-labeled Tampax) every 40 minutes or so, and nearly passing out in the bathroom. Missing work every month.

I've also had 2 myomectomies and am TTC my first baby with IVF. The first surgery changed my life, just like yours. I was so, so happy I did it. Bleeding went down to completely manageable. It was done robotically, however, and when I first met my RE he said he doesn't believe in robotic surgery because of the need to really get in there and look around and even feel around to not miss any smaller fibroids that could end up growing. He thinks that's why I ended up having more - they were likely there the first time but missed because no one was physically in there to feel them. My second was also a laparoscopy but was done manually.

I hope things are going well with you. I've never found another person who has had multiple myomectomies and is trying IVF, so let's connect if you're okay with it!

STO210 · August 2017

@elisam511 How are things going? Have you had the intramural fibroid removed? I have one as well and my RE suggested it be removed after my first failed transfer in July. They cannot say for sure that it is the reason it failed, so I am reluctant to have the surgery.

Looking for advice from others that have had a robotic myomectomy for intramural fibroids!

sarcasticowl · August 2017

@STO210 Does your doctor do myomectomy without the robot? Both REs at my practice recommend highly AGAINST robotic myomectomy. Which kind of sucked to hear because my first (of 2) was robotic with the DaVinci. They each stated that the likely reason my fibroids returned in less than four years was because of small missed fibroids during the robotic surgery. While I was led to believe at the time that robotic surgery was the best possible solution, I now wish I had gotten a second opinion from REs with more experience so I wouldn't have had to go through it a second time. Not that I want to scare you - everyone's situation is completely different, different locations of fibroids and complicating factors - but do yourself a favor and either get a second opinion or ask about manual laparoscopy with a hysteroscopy. The benefit is that they can come in from outside the uterus as well as within and can ensure all bases are covered and can get a better idea of what is there so nothing gets left behind. As a side note, my recovery with the second (manual) surgery was far better than with the robotic, mainly because I they didn't pump me full of as much air as the robotic (the air is extremely painful until it works its way out of your body). I had an overnight hospital stay with the DaVinci and only a few hours in post-op recovery with the manual. Overall, though, I would always err on the side of removing ANYthing that is in the uterus that doesn't belong there. Pregnancy hormones can cause fibroids to grow and you don't want to take that chance if you do end up succeeding with a transfer.

STO210 · August 2017

That is really good information, thank you so much! I have been researching and it seems a good bit of girls go in for the robotic and come out of the anesthesia only to find they have had a manual due to additional fibroids the doctors did not previously see via ultrasound.

They currently can see two fibroids, one to the left at 2cm and the one on the right that they are most concerned about at 5-6cm.

I have had two REs and both recommended that I have the robotic, but both also said that it may not be necessary. Nobody can say for sure, which is why I am frustrated.

Sorry to hear your transfer was cancelled, when do you think you will be able to try again?

sarcasticowl · August 2017

Hey @STO210 believe me, I know how hard it is to make the decision about what kind of surgery to have. I'm not sure why there is so much push to do robotic, as I don't think the risks for infection are really any worse with having the doctor in the same room as you (did you know they're literally in another room? I was astounded when I heard that). I sometimes wonder if it's because the doctors just like working with a robot and it's more fun for them or something LOL. I wish it was easy to start doing it manually and switch to the robot but I don't think it's possible.

We're going to try again later this month for a transfer. Hopefully this POS uterus will cooperate this time!

eggplantface · August 2017

@sarcasticowl I'm also surprised and happy to meet someone who's had multiple myomectomies! I have a friend who told me about having heavy bleeding and long, painful periods, and I keep encouraging her to go get an ultrasound. I hate that doctors dismiss us like we're just supposed to deal with it!

What does a manual laproscopy entail? Both of my surgeons said the same thing yours did, that feeling the uterus to find the small ones is important to prevent growth. In fact, with the second surgery he HAD to feel for the small one on the inside because it wasn't visible from the outside. But they did their "feeling" through the full incision.

dragonette505 · August 2017

@ eggplantface Multiple myomectomies here too.... First robotic and within no time they were back. Second time got a better doc who did it himself without the little pacman thingy (that's how the first doc described the robotic tool) and so far so good! I had no real symptoms from my fibroids so I was hella surprised to find out I had some

sarcasticowl · August 2017

Hey @eggplantface. By manual laparoscopy I just meant that a doctor was there manipulating the tools and not a robot

I'm glad to hear that other physicians echoed the views of mine in believing that robotic laps miss some small fibroids and polyps! What I wouldn't give to turn back the hands of time to avoid having a second surgery and the recovery/additional scar tissue that went along with it. I am terrified that by having the two surgeries plus the office hysteroscopy that my poor uterus is now too damaged to grow a lining. I guess time will tell.

@dragonette505 Same here. Zero symptoms with the fibroids the second time. When I went off BCP to start TTC, if anything periods were way shorter and lighter than they had been on the pill. It was kind of nice!

dragonette505 · August 2017

@sarcasticowl just want you to know that after my second myomectomy I was still able (tw) to implant, so just know it is possible. I def had to wait 3 months before trying to transfer.

sarcasticowl · August 2017

@dragonette505

Thank you. Any time I hear of success stories, even when there are losses involved, like yours, it gives me hope.

elisam511 · February 2018

Hi! Wanted to update you all: In August of 2017 I ended up having the surgery. I did a 'mini-laparotomy bikini cut incision myomectomy' and the surgeon removed SIX fibroids, and not the 3 my RE originally discovered. I've read a bunch of replies in this board about robotic approach not being as successful because the robot cant feel around and check for any other smaller fibroids..... Anyway, having the surgery was the BEST DECISION I made, and it actually came sort of forcefully to do it. I was very hesitant and would go back and forth about doing the surgery, but decided not to..... I went to the RE to talk about transferring one of our 3 frozen embryos, and she said that a new polyp (or potentially a new fibroid) was brewing IN the uterine cavity where baby would go, so we were not cleared to do transfer. She said she could just snip out that little one easily, but I would still have to go under. I said to myself: if i have to go under, might as well remove ALL those blood suckers, so I did! August 11th 2017 I had the myomectomy and recovered very nicely.... SO NICELY, that we actually got pregnant NATURALLY our very first time we were OK'd to have sex and go about our normal lives. Unfortunately, it was a chemical pregnancy, but at least i knew we COULD GET PREGNANT NATURALLY!!! I did also get a BFP the very next month, and here we are 15 weeks later

oh, and i forgot to mention that the two periods I had after my surgery were a walk in the park compared to what i was dealing with previously. i did not take a SINGLE ibuprofen and i bled for maybe 3.5 days.

Ladies, keep the faith and don't lose hope! If you are struggling with heavy/painful periods due to fibroids, get them out!!!!! What happened with me is a total and complete miracle and I am so thankful to God and the gifted surgeons and doctors who helped me get to where we are today!

I hope everyone is doing well - would love to hear updates!!!! Hoping and praying for all of you to have BFP's and little miracles in your arms soon!!!!

stephanienj · February 2018

@elisam511 . I'm a new member, and just saw this pop up in the recent news feed. I just read your update, and that is AMAZING!!! Congratulations!. I just had a full open Laparotomy Myomectomy on December 15th, bikini cut, but it was much larger than my previous C-section scar. I too had 6 fibroids. 1 was bigger than my fist, another the size of a lemon, and 4 little ones. I was dealing with horrendous periods for years prior. Which I actually saw my Ob/gyn twice for, who said, the first time (august 2016), that it was just normal changes that some women go through in their 30's and 40s. Saw him again a year later (july 2017), after things had even gotten progressively worse, to the point that I would have my period for a full 10 days, with very heavy bleeding for about 6 of them, and then only have a week or two before it would show up again! I had cramps and pain very badly, and I remember 1 month, they were so bad 1 night, I was in tears and couldn't even walk, to the point I almost had my husband take me to the ER, but I figured if I went to the ER for menstrual cramps, they'd just laugh and send me home anyway. The obgyn did an ultrasound, and said I still had just the 2 very small (1-2cm) fibroids that I had had for many years and my only option was birth control. Obviously wanting a baby- birth control was not the answer. I hadn't seen my RE in many years, as we put off fertility treatments on multiple occasions for various reasons but knew we had other issues with ovulation and MFI. So I made an appointment with my RE (9/2017). He was absolutely amazed that my OB/Gyn had missed everything, as they were clear as day on his ultrasound machine. We scheduled surgery, although I did put it off until December when it was more suitable for mine and my family's schedules. My RE was expecting me to be upset when he suggested the surgery, I was actually happy, I knew I wasn't crazy, and I knew something was WRONG! I was glad I listened to my body, only wished I had been more proactive about it sooner. Recovery was a bit more rough than I expected, but my incisions were long, as the size of my fibroids, actually had my uterus to the size as if I was 4 months pregnant. It's been a walk in the park since. I've had 2 cycles, both were what I remember a period used to be, 4-5 days, 1 heavy, and then gone! Life is finally back to normal and not revolving around my heavy never ending periods. We still have to undergo IVF, as my hormone levels show I don't ovulate well, and DH also has severe MFI. We're just starting my first cycle, and I am scheduled for retrieval and transfer in March! Congratulations again and Best wishes!!!

elisam511 · February 2018

@stephanienj I am SO glad to hear that you went through with the myomectomy and your periods are much more manageable now!! It's so crazy, isn't it? I'm hoping and praying you are successful in March!!! Best wishes to you and please keep in touch!!!!

bubblyducks24 · February 2018

@elisam511 I just read this entire thread and I'm so thrilled for you!!!! God is good, and I'm so glad everything is better now. I'll be praying for your journey through pregnancy!!!!!! Again, wow! Beautiful beautiful! Best wishes!

tinjp78 · February 2018

@elisam511 Thank you for sharing us your beautiful update!

elisam511 · February 2018

@bubblyducks24 @tinjp78 THANK YOU SO MUCH!!!! We did our gender reveal recently if you are interested in watching!!!

https://www.youtube.com/watch?v=9aTLWLNg7Jw&t=5s

tinjp78 · February 2018

@elisam511 Wooohooo! Congrats! That was a fun gender reveal game

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