I need surgery for my fibroid(s) - - **Update**

wanderlust508

I got the lovely email from the NP this AM informing me that unfortunately I'm not pregnant.  Obviously I already knew that (given my 3 day wine binge the last few days!).  But the more pressing issue for me was getting the ultrasound appointment with my RE to measure the size of the fibroids.  My abdomen became more bloated than it's ever been this cyle.  I questioned whether it was due to OHSS or growth of my fibroids.

Well I got my answer today.  Saw my RE who did a quick ultrasound and determined that my fibroid now measures at about 8x9 cm (between the size of an orange and grapefruit).  He felt my abdomen and said "Wow, yes ...you have a very signficant abdominal mass." (Ya think?!).  He immediately said he would put in the surgical consult for me to be seen in the near future and get this laparoscopically removed.  He only saw 1 fibroid which confused me because I thought I had 2 ...but I guess the surgeon will see if there are any others when they go in there with the scope.  

I have mixed feelings.  On the one hand, I'm SO relieved that this thing is finally coming out (hurray!).  I really look forward to not constantly feeling bloated ...that really sucks.  And with a fibroid of that size, it has to be impacting my ability to conceive (I would think) ....so it's a really good thing it will be coming out.  Other positives are that the RE said my recovery time to return to work after surgery shouldn't be more than a week or so (I thought it'd be at least 2 weeks) and he doesn't think I would have to delay TTC after by more than 3 months (I had previously thought it would be 6 months).  On the other hand, I'm just kinda pissed at myself for not pushing to have this done sooner.  I had felt before for at least the last 6 months that "something isn't right" and that maybe I should advocated harder for myself.  2 months ago I had a saline U/S which didn't measure the size of the fibroid but just checked to see if it was invading the uterine cavity.  Based on the results of that, this SAME RE recommended I not get surgery and do 3-4 more cycles of IUI.  Now he's changing his tune.  To be fair though, it does feel like the fibroids grew very quickly and (I'm convinced) had a lot to do with Clomid which I've read can cause the fibroids to grow (although my RE's insist that isn't the case).  Also, the laparoscopic and less invasive procedure to remove fibroids has come under fire recently by the FDA which is calling for a ban on the practice.  Recently several cases of leiomyosarcoma (a deadly uterine cancer) have been found AFTER the laparoscopic procedure was done.  Presumably because the fibroids unknowingly contain some malignant cells (which then spread throughout the body when they are ground up to be removed laparoscopically).  The chances of this happening are about 1/350 which to me is not an insignificant risk.  Logically I know that my chances are low (no family history of gynecological cancers, and I'm pretty young).  But the possibility is still scary.  My RE's thoughts on it were that he thought my risk was even lower than 1/350 given my age ...."maybe 1/500" he said.  BUT of course he added the caveat that the risk was still not zero ....and that this sort of thing is always considered insignificant until it happens to you.  So basically this is a decision I have to make on my own in the end.  Here's a couple links to the news article explaining the most recent concerns about laparoscopic surgery for fibroids in case anyone is interested.

https://www.webmd.com/women/uterine-fibroids/news/20140712/fda-advisers-weigh-risks-of-procedure-for-removal-of-uterine-fibroids

https://www.washingtonpost.com/national/health-science/new-evidence-backs-fda-warning-about-device-to-remove-fibroids/2014/07/22/04b11662-11bc-11e4-8936-26932bcfd6ed_story.html

I'm inclined to just go with the laparoscopic procedure.  I really think it will be fine.  But I still get a little anxious thinking of that SMALL possibility.  Overall I'm looking foward to hearing from the surgeon and going from there.  FINALLY a plan for the fibroids that doesn't involve just leaving them alone and seeing what happens.  

BethKate2

I don't have any experience with fibroids, but I can imagine the mixed emotions you're having right now: excitement about getting it out, regret for not doing it sooner, nerves about the surgery.

Best of luck as you move forward with this new plan!

shirleymaeby

GL with the surgery and FX it all goes smoothly.  I have no experience with fibroids but it sounds like it sucks, so hugs for you.  

catlover790

I don't have experience with fibroids but I'm glad that you will be able to have them taken out. I'm sorry that you have to deal with that. It does sound like you had some positive news too about not being out of work or ttc for too long, so I'm happy for you for those things. Good luck! 

wanderlust508

Thanks for the support ladies!

@Rumbera28‌ - Thanks! I hope you don't mind, I may be asking you some myomectomy related questions as I gear up for surgery. I guess the question that I have now -Did you feel different right away after surgery? How was the fibroid affecting your life before .... and do you feel like it completely improved after surgery? Hope that makes sense!

wanderlust508

Rumbera28 said:

EastBayBride508 said:

Thanks for the support ladies! @Rumbera28‌ - Thanks! I hope you don't mind, I may be asking you some myomectomy related questions as I gear up for surgery. I guess the question that I have now -Did you feel different right away after surgery? How was the fibroid affecting your life before .... and do you feel like it completely improved after surgery? Hope that makes sense!

No problem!

Yes, after surgery my stomach was flat for the first time in years, for starters.  I thought that I just had a natural pot belly and worked out like crazy without results.   I used to pee every 20 minutes because my ute was retroverted, twice it's size and laying on my bladder.  Sex in certain positions was just impossible.  I had constant bloating and very heavy periods.   Not to mention a slew of fertility problems because of it (read my siggy).  Sorry to be graphic but orgasm is light years better now also.


Recovery was very quick for me -- I have four little scars and that's it.  My sister had the abdominal myo and felt like crap for months after.   I was up and around in about 2 weeks, able to work out for real in about a month.

Woo hoo!!!  I'm all for better orgasms - I hope that'll be the case for me!    As for your pre-surgery fibroid related symptoms - I can identify with all of them except the painful heavy periods.  My periods are actually pretty light surprisingly.  I think that's why the docs have been saying no to surgery for me for so long now.  But ugh, I have the constant pressure on my bladder (worse at certain times of month ...usually at the end of my cycle) - and at those same times, sex would get so painful (I would have to tell my DH to stop in the middle).  I just want this thing done and over with.  I can't wait!!!

jencity9

I had a robotic myomectomy as well just about a year ago and was so happy with how it all turned out. I had much of the same experience as Rumbera.

My RE was able to feel my fibroid from the outside as well. I think it is possible that as fibroids grow they sort of grow into one bigger one because that seemed to happen to me. Ultimately they removed 5 fibroids (going into surgery they thought it was just 3). Let me know if you have any questions!

Pintobean39

No experience but good luck with surgery.

BunnyBerry

Sorry for your BFN.

So glad you finally got answers to your abdomen issue! The decision about lap or open it a big one, and I'm sorry you have to make it. My mom had a football-sized uterine fibroid removed in one piece, and they found a precancerous layer in the middle of it, but she was also in her 40s. The doctor expected to find that because her fibroid had grown much faster than anyone anticipated. I wonder if you could ask your RE if the growth rate of your fibroid has any bearing on your risk factors?

It's awesome that the recovery and wait to TTC is much shorter than you thought! Good luck with whatever you choose.

Hpearl

I recently had the power morcellation procedure to remove submucosal fibroid, that was much smaller than yours,  but basically growing just inside my cervix.    

I had doctors fighting,  mixed opinions, and finally just had to do a gut check.  I found a surgeon that I felt comfortable with, and pressed to move forward and have the procedure. 

The risks are scary as heck.  The latest FDA recommendations came out right at the same time I was booking my surgery.   I can certainly understand your concerns!

It is different for everyone,  so just follow your heart!  For me,   I have such a much better quality of life now.   I don't have to pee every 15 minutes any more,  (TMI), but I can poop without feeling like I am tearing up inside, and I actually enjoy sex now!     

If you are like I was,  you may not even realize how much you are affected by the fibroid.   I feel a TON better now,  and even if this dosn't help me get pregnant,  I know that I can live happier life. 

My recovery went fairly well.  Felt better after about a week,   only took three days off of work before I could go back. 

I hope this helps!  Please do not hesitate to PM me if you have any questions at all!  

wanderlust508

Thank you ladies so much for your support and kind words!  It made me feel so much less alone and scared during this process.  It's hard when I don't know what to expect.

A big thanks to those of you who have been through lap myomectomy (or any other surgical procedure) and shared your experience with me!  It made me feel a lot more comfortable moving forward with my decision to do laparoscopic instead of the open abdominal myomectomy.  I really think the benefits outweight the risk for me.  

I just wanted to update on where I am now.  Over the weekend we were in San Diego for a wedding.  I was feeling more and more bloated over the weekend.  I got Spanx to wear under my dress but still felt very uncomfortable in my own skin.  I found myself covering up with a cardigan as much as I could.  I ended up talking to my DH's best friend's wife at the wedding.  She has been dealing with fibroids too.  She isn't even seeing an RE yet because her fibroids are so bad that she is doubled over in pain every time AF starts and she is impacted by her fibroids far worse than mine.  She wants to TTC but she needs to deal with her fibroids first.  I told her I was getting surgery.  She told me that she's seen multiple Dr's and they've all said that because of the location of her fibroid, she can't get surgery.  She would have to get a full hysterectomy to remove it (which sounds crazy to me! ...but that's what they told her).  Anyways, it put it in perspective for me a bit ....at least my fibroid (although it's large) is in a place where it can be easily removed and the RE thinks I shouldn't have to take a break from TTC for too long.  I have to be grateful for that at least.

Then yesterday, I got an email from the surgeon who will be doing my myomectomy.  She said she wanted to get an MRI done for me so she could a better look at the fibroids.  And that her surgery scheduler would be calling me shortly to schedule my surgery and a pre-operative consult so she could meet with me before surgery.  It made me feel really good that within 2 days of seeing the RE and making the decision to move forward with surgery, I got an email from the specialist (on a SUNDAY!).  I responded thanking her for reaching out.  I expressed frustration about how much the fibroids were affecting my quality of life and how eager I was to get them out.  I asked her a couple questions about my surgery.  She responded right away, answered my questions and said "No worries.  We will be getting those fibroids out very soon and get you feeling better."  I haven't even met her yet and I already just really like her and have a good feeling  

ETA:  AF just started for me today ....hoping I get the call from the surgery scheduler soon and get this show on the road ASAP!  I'm ready to be rid of these pesky fibroids!  

TTCBabyJ

That is really great news. Although my fibroids were fairly new when they were discovered it was great to have them removed. When my RE told me they can compromise the blood flow to uterus she had me sold. Good luck with your impending surgery!

wanderlust508

Thanks @Rumbera28!  Yes, I asked her if she'd gotten other opinions ...she said that she's been to 4 different specialists and they've all told her that she is not a good surgery candidate.  I'm so frustrated for her!  Also, the different specialists are not in agreement about whether it even is a fibroid.  Some think it's adenomyosis (https://www.fibroidsecondopinion.com/adenomyosis/).  

As for me, I now have a surgery date for lap myomectomy!  It will be Fri Aug 29th.  Impatient me is disappointed that I have to wait 4 WHOLE weeks for this thing to be done ...but practically speaking, I know it's probably better that I have more time to prepare, understand and get all my questions answered.  And I'm sure most people have to schedule their elective surgeries at least 1 month in advance - - I'm just anxious to get it done NOW!    

@Rumbera28 - 2 myomectomy related questions for you if you don't mind.  What did you need in terms of pain control after the surgery (anti-inflammatories like Motrin ...or something stronger like Norco or Percocet?).  Also, did they give you any travel restrictions afterwards?  I currently have a trip booked to go out of town to Phoenix for my niece's 1st birthday party.  It's only a 1.5 hour flight to Phoenix from here and it will be exactly 1 week after the surgery date.  Do you think that would be too soon for me to travel?  I know it's different for everyone but just wanted an opinion!  I could definitely cancel on that trip if I have to.  But I just don't really know what to expect after surgery.  

wanderlust508

***child mentioned***

@Rumbera28 - Thanks for the info!  I would not have thought to take a stool softener so I appreciate that advice.  Yeah, I'm thinking I'll probably have to cancel on the Phoenix trip.  The flight is exactly 1 week after surgery ....may be too soon!  It will be for a 1st bday party for DH's sister's baby ....I don't want him to miss it so he can probably just go without me.  I'll be a week out after surgery so I should be fine spending the weekend alone I'm thinking.  The Dr said that she'll write me out of work for 2 weeks.  

wanderlust508

@Fighersince83 - I never thought about that!  I don't think Femara is part of their normal protocol (they usually do Clomid and then just move on to injectable Menopur if Clomid isn't working).  I was planning to insist on doing Menopur when I'm ready to resume treatment after surgery.  But I'll look into Femara too.  Thanks!