Myomectomy #2 or Hysterectomy?

Had an open myomectomy, vertical incision, in May 2006. Uterus had swollen to size of 22-wk pregnancy. Surgeon insisted on Lupron injections for 3 months prior to surgery to reduce chances of hemorrhaging. Don't know if it really made a difference, but she said it did. It was a terrible drug for me, had first migraines ever on it, night sweats, tired all of the time, and lost quality of my teeth (and probably other bones). Used to be extremely athletic, but exercise wore me out completely.

Surgeon removed 8 fibroids, grapefruit and orange-sized. I am sure she is brilliant, everyone says she is best, but she is abrupt and has no bedside manner, difficult to talk to. Recovery was tough, allergic to morphine, and most narcotics caused uncontrollable nausea, so opted to recover cold turkey with Advil. Husband not very helpful at all.

Struggled with recovery, swelling and pain. Saw a physical therapist for 25 weeks to try to help. It definitely helped some but have never been 100%. I still have stabbing pain in the area where the largest fibroid was. Sex is limited, starts okay but gets so painful that I can't stand it. I mourn the loss of what used to be great. Swelling comes and goes, belly changes 5 inches in diameter in a few hours when at worst. Finally saw a GI Dr who diagnosed IBS and put me on 10mg Baclofen. It is a wonderful management tool for swelling, would highly recommend if anyone has similar problems.

Fast forward to 2008, and fibroids are back. Still small, but now penetrating endometrial lining, so I have a heavy "period" for 3 wks at a time, and if lucky 6-9 days off before it starts again. Trying oral contraceptive to control bleeding, and it helps maybe 20%, from extremely heavy to heavy.

Surgeon wants to do another myomectomy but says it will only buy me some time (maybe 2 yrs) and that 3rd surgery must be a hysterectomy. Ob/Gyn (love him...he is kind and listens) says he will do a hysterectomy now if I want, says there are only good reasons to do it, except for fertility of course. Married 3 yrs, no children, always thought I would, hard to accept...EXCEPT that I don't think I can handle another myomectomy and recovery, especially if I know I have a huge chance of needing hysterectomy later anyway.

Worse, husband now has breast cancer and undergoing chemotherapy. Children have not been a major issue (he has two of his own already), but I don't like the idea of giving up entirely. But we figured that the earliest we can be fertile and try is 1.5 yrs from now, and it's possible he won't be fertile again.

So...I have the myomectomy scheduled, but I don't feel good about it. Anyone had great success with Myo #2? I am strongly leaning towards having a hysterectomy to end the pain and bleeding. I think hysterectomy is the right decision, but I don't have the strength to make the call. Anyone else had hyster after myo? Can you compare the recoveries?

Thanks.

Hi Rheqnut.

I also had fibroids so I can understand some of what you are going through. Fibroids are not fun!!

A few years back, my younger sister had an abdominal myomectomy for a grapefruit sized fibroid. She just had a LSH, a less invasive hyst, last year for returning fibroids and she told me the recovery time was easier with her hyst then it was with her myomectomy. My sister and I both had a LSH.

Also, with your current fibroid size, possibly you are a good candidate for a less invasive hyst such as a LAVH, a TVH, a LSH or the newer DaVinci Robotic??? In my case, I decided to go ahead with my LSH since I had a ~window of opportunity~ with my fibroid size. Both my Drs felt if I had done a wait-and-see with my fibroids, they would have kept growing and I would have only been a candidate for an abdominal hyst.

I might suggest you go to the *Hysterectomy Checkpoints* link at the top of the web site. Click on it..and go to the *Pre-op* link..and click and scroll down. There are questions to ask the Dr. if you are contemplating a hyst and it also goes over the different types of hysts.

In the end..just do what is *best* for you.

Sending best wishes~

Mary

I just wanted to post an update...hindsight is 20/20! I chose the hysterectomy, and I am SO GLAD I DID!! I am 11 days post-op today, and I am a new person. Recovering from the open abdominal hysterectomy is not easy, but it is a PIECE OF CAKE compared to recovering from the open myomectomy 2 yrs ago. There is no, painful, swollen uterus with hundreds of stitches to deal with. Nothing. Oh, there's pain, but it feels like productive, healing pain.

Even better, the surgeon said I absolutely made the right decision. There was so much scar tissue from the myomectomy that as my uterus was swelling with new fibroids, it was smashing the bowel against my back, causing even more pain. The ovaries had nowhere to go so were stuck in the same scar tissue and wrapped around the bowel. The laproscopic myomectomy that the other surgeon recommended would have been impossible. She might have attempted it, but it would have become an open abdominal myomectomy, as she never would have done a TAH, and I would have ended up doing a TAH in the future. The surgeon said that should I have become pregnant, it would have been extremely dangerous, life-threatening. The extent of the scar tissue was not visible on ultrasound, so no one knew. Except that I had been suffering for over a year, and now I am free of it and feeling SO much better!! I feel like my old self, minus 5 or 6 years. Hooray!

Moral of the story: Listen to your body. Another myomectomy may not be a good thing. A TAH is not the end of the world, but just the beginning...

So glad to hear you are recovering well and are happy with your decision!

Something you said struck me… I hadn’t thought about it before. Although it’s not scheduled yet (have a surgical consult with a gyn onc tomorrow), my gyn is recommending a TAH with BSO (vertical incision). I was getting really worried about how it would be since I had such an awful time recovering from my abdominal myomectomy in 2002 (horizontal incision). Probably should have had the TAH then, but we were hoping to try again to have kids (no dice in that department). Like you, I struggled with a lot of pain issues, etc. after the myomectomy…and my uterus continues to be a fibroid garden… they’re back…lol.

Makes total sense that recovering from a TAH may actually not be near as bad since there would be lots less stitches (I had fibroids everywhere too, including in the wall of the uterus). I have tons of adhesions too… so many that when I had an exploratory laparoscopy in 2003 for severe pelvic pain they had to stop since everything was such a mess. Anyways, thanks so much for updating us on your situation and sharing your experience. I’m hopeful that you will have a smooth recovery and am feeling a little more at ease pondering that recovery from a TAH may actually not be worse than the myomectomy.

Question – do you know if they took any special approach in removing your adhesions (scar tissue)? What about anything to prevent any future scar tissue it following this surgery?

Take Care!

~ Lisa :-)

Lisa, My surgeon said that he put some sort of film over ?? (I'll have to ask) ?? the areas with stitches and ovaries, I think, to help prevent future adhesions and extensive scarring. Maybe it will work. I hope so! I didn't have any laproscopy like you, but I told the surgeon ahead of time that I was concerned that there were a bunch of adhesions, and he said no problem, that he had dealt with a bunch in other surgeries. It's my understanding that he removed a lot of scar tissue with the uterus, that he was afraid for awhile that he might have to remove the right ovary because it was encased in scar tissue that he was trying to remove, but he managed to separate it. I am positive that the scarring/adhesions were the cause of severe pain. All of that bad feeling is gone now. It's wonderful.

Sorry to hear that your fibroids are back. I know how devastated I was when mine reappeared. As I said, I am only on day 11 post TAH, but it already night and day different for this recovery. I have some swelling and pain, but frankly, it is easily more tolerable than the pelvic pain that I've been enduring, and it is nothing compared to the myomectomy recovery. Certainly not a holiday, but easy in comparison.

Also, I had a vertical incision for the myomectomy and a horizontal incision for the TAH. Honestly, the vertical incision was not a problem. My surgeon originally told me he might have to do a vertical incision for the TAH, that he wouldn't know for sure until I was under and he could feel better without causing me pain...and I didn't hesitate in saying that I'd take vertical again if he needed. Turns out I got horizontal, and perhaps it is easier, but I think the incision direction factors in less than 10% of the total recovery experience. Not a big deal. Hard for me to say that it factors at all because the internal pain/healing for the myomectomy was so much greater than what I experienced for the incision that it just didn't matter. I tend to scar easily, and the vertical incision has healed well with only minor discoloration. Hardly noticeable, and probably no one but me would notice. It's only my experience, but perhaps that helps you.

Best wishes in your journey through this. My decision was really tortured, and this site helped a lot. In hindsight, if I would have known that I would feel this good afterward, I think I would have RUN straight to the surgeon, months ago. Hope this helps you!

~Rhonda

Oh...one other thing... the myomectomy took 3.5 hours in surgery, plus pre-op and recovery, and I suffered effects of anaesthesia until the next day (nausea, vomiting, too weak/sick to sit up or stand up). The TAH including the adhesions/scar tissue removal took 90 minutes in surgery, especially because when the surgeon saw that I was an especially bad case, he called another surgeon in to help. Now, I admit that I was high as a kite (singing with the TV commercials, lol) but I was sitting up and talking 4 hours later. Since you know your case is bad already, you might talk with your surgeon about that and see if there needs to be some backup.

Thanks for sharing more of your experience rheqnut! It is very helpful. Sorry you’ve been through all this! The decision process has been really hard for me too, but I feel it’s the right thing for me to do.

Today I met with the gyn onc who will be doing the surgery (my gyn may also be assisting)…I feel very comfortable and confident with him. Based on all my factors and test results, he concurs with my gyn that TAH with BSO is the definitely way to go for me…while he said that everything we know to be going on is more than enough to cause all these issues, we also discussed the possibility that I could also have adenomyosis (won’t know until the surgery). Hopefully no cancer in there, but he’s the guy to handle it if there is. He’ll also be doing extensive adhesion removal and like your doc, will be using film… in my case Seprafilm to help prevent future adhesions.

In addition to all that, he also wants to do a panniculectomy at the same time. While many may refer to this as a “tummy tuck”, it does differ from abdominoplasty in that it is only to remove the excess fat “apron” and skin without any abdominal muscle tightening. His recommendation to do this is to make access to the uterus easier and to reduce potential healing complications…I’m all for that, but what gets me really excited is the opportunity to get rid of my drooping belly and extra skin (although I’ve toned up and lost 40lbs this past year, I’m still somewhat overweight, and it seems that’s where I keep it all). While he said has done hundreds of panniculectomies in conjuction with various gyn surgeries, he did ask me if I would prefer to have a plastic surgeon do a panniculectomy/abdominoplasty. However, that is cost prohibitive for me at this point and I wasn’t even considering it, although I know many women do it when they have a hyst. Note - if he does the panniculectomy part or all of it may be covered by my insurance since the purpose is to aid in the TAH/BSO/Adhesion surgery and not for cosmetic reasons…but even if insurance won’t cover it, I could handle his fee).

We were talking about so much I’m a little confused about the incisions, but I believe I might end up with a combo horizontal/vertical. With everything he wants to do, he said I’d probably be 3 to 5 days in the hospital. We’re in the process of hashing out all the details and the schedule (he wants medical clearance from my regular doc, they also want to get everything approved with the insurance, etc.)… but right now looks like probably sometime in September.

May sound funny, but I am so relieved since I had my consult with him and I feel that I am in very good hands. While I’m not looking forward to the surgery and long recovery, I’m definitely looking forward to putting a end to all the pain, etc. and am totally psyched about the bonus of removing my abdominal fat/excess skin… woo hoo!

~ Lisa

Take as many days as they allow for you to be in the hospital...don't rush anything! I've seen another post on this site about hysterectomy with tummy tuck...you might want to surf through that to see if there's any information you can use. Best of luck with your surgery! ~Rhonda

Dear Sistas,

For those of you who had a hysterectomy instead of a 2nd myomectomy, is there a reason why some of you choose an "Abdominal" Hysterectomy instead of a "Laproscopic" Hysterectomy?

I had an abdominal myomectomy and due to adhesion/scar tissue complications, I think I want a Laproscopic Hysterectomy to get rid of the fibroid/scar tissue problems once and for all. I don't want another abdominal surgery as this will probably scar-me-up again.

Thanks for sharing!

Jcmm

Hi Jcmm...

Haven’t had my hyst yet, and would love to do it via laporoscopy. However, based on the amount of adhesions found during an exploratory lap I had in 2003 (so many they stopped the procedure early), my current fibroids and possibility for other issues, the various docs I’ve consulted with say that I have to go abdominal - it's the concern over proper access to everything. I’m thinking it’s probably based on each person’s individual situation and I’d recommend getting at least one other surgeon's opinion to see if they concur with what method would be best in your case. Also ask if they will be doing anything to help prevent future adhesions (technique, film, etc.). And be sure to heed doc's instructions while you recover - I did too much too soon after my myo, which may have added to the extreme amount of adhesions that developed...body needs time to heal. I know I'm going to take it easy this time around! Just my 2 cents ;-) Good luck!