Myomectomies and Musicians (long)

I am so thankful that HysterSisters is here...I have done quite a bit of research on fibroids and alternatives to hysterectomies, but this is the only place I've found with detailed information.

I am new to HysterSisters and don't know if I really quailify to be a member. (I have chosen to have an abdominal myomectomy, but my doctor reserves the option of hysterectomy as a life-saving procedure during surgery.)

Two years ago, I went to my doctor because of headaches. My BCPs were altered because of my age. I started to have heavier periods, so I requested to return to my previous dosage after a year. The bleeding continued to get heavier and longer, even though I was on birth control. In March of this year, the real hemorrhaging began towards the end of each period. It was very frightening. My doctor gave me a referral to gyn., and in May I had an endometrial biopsy, a thyroid test, and an ultrasound. My gyn found a single "golf-ball" sized fibroid. He felt putting me on continuous BCPs would solve the problem of the bleeding. (We also had a little disagreement about Premarin prior to the discovery of the fibroid.)

For five glorious months I had no period at all. Given my career (military musician with lots of concert and ceremonial work wearing white), this was a dream come true!

In October, I departed on a seven week concert tour. On day two, I started spotting. On day six, the hemorrhaging began, even though I was on continuous BCPs. After 10 days (and no help from my gyn long distance), it tapered away, only to return with a vengeance at the beginning of week five. It started with a hemorrhage while I was warming up on stage (luckily I was prepared). By the end of the week, the blood loss was so great, I went to a gyn on the road that put me on methergine and sent me home.

I found a new gyn (you have no idea how hard this is in the military world - wives of servicemen take precedence over active duty women), and after a whole battery of tests, I was told my options were TAH or TVH since I was 42 and done having children, and my submucosal fibroid was now a "lemon" and has a polyp attached to it.

When I requested a myomectomy, I was given a doom and gloom story about how dangerous it was, etc., and how I didn't need my uterus any more. I requested another doctor and was actually passed UP to a staff gyn (instead of a resident - active duty women usually get the residents) who said a myomectomy would be fine - it was just an "unusual" request, given my age and family status.

I am now on continuous BCPs, estrace, and naproxen. This was supposed to "control" the bleeding, but I continue to spot, have the occasional small "hemorrhage", have constant light cramping. I am mildly anemic and feel tired most of the time.

So, I have a myomectomy scheduled for the 26th of January. I was wondering if there are any others out there who have chosen this route? Should I expect a similar recovery to that of an hysterectomy?

Also, are there any other performing musicians out there that can tell me how soon they resumed practicing? Playing a wind instrument takes an incredible amount of breath support and abdominal strength.

I came to this site with zillions of questions. The vast majority have been answered just from reading all the different threads and posts. I'm sure I have more, but I'm not even sure what I should be asking!

I thought I was alone in my "bloody" nightmare, but after finding HysterSisters, I know I'm not alone any more!

Sousette

Hi there, and welcome!

I'm glad you were able to find a GYN who could do the myomectomy for you. I would ask the surgeon how many he or she has performed, and whether a laparoscopic approach might be possible. That would cut (considerably) the recovery time for you, and involve less abdominal "trauma" than an abdominal approach.

Are you taking iron supplements for the anemia? It's really hard to come up with "air" (I'm a singer, so I know this first-hand ) when you're anemic, and the continuing anemia would slow down recovery as well.

It's also possible that you're dealing with more than just the fibroid; we've had ladies (look especially at BethAC's posts) who had myomectomies where more than just the fibroid was found -- and they did go on to hysterectomies. Adenomyosis (which is where the endometrial tissue has actually infiltrated the uterine wall -- tricky to diagnose at best) could also be part of the reason for all the bleeding. Unfortunately, the only "cure" for adeno is the hyst, but in the course of the myomectomy, they may be able to "see" whether adeno is present. I'd certainly ask about that as you follow your path to the upcoming myomectomy. If you take a look at our Resource forum, you'll find a number of resources about fibroids, myomectomy, and adeno to provide you with further information.

Good luck with all this. I hope you are able to get relief with the least surgery possible, so you can get back to your work and your music ASAP!

and happy holidays!

Audrey

Hi Sousette,

I had a laparoscopic myomectomy at age 45 for removal of two fibroids ... one was the size of a golf ball and the other was the size of my gyn's fist (his description) and it was sitting on the back of my uterus and pressing on my colon. Ouch! At the time, I did not want to have a hyst, so after reading and evaluating all my options (which included a hyst, Uterine Atery Embolization, Lupron, bc pills) I chose the lap myomectomy. Luckily, my gyn never suggested this was unusual at my age!

The surgery was performed on an outpatient basis and I had two small incisions - one at the navel and one at the pubic hair line. I only missed one week of work (basically an office job, pretty sedentary). Unfortunately, my gyn discovered stage 4 endometriosis during the surgery and it turns out that was causing most of my problems, rather than the fibroids. I ended up having a hyst about 6 months later and they found a few more small fibroids, the endo, and the pathology report also showed that I had adenomyosis. As (((Audrey))) has mentioned, adeno is very hard to diagnose and many ladies don't even know that they have it until after their hysts when the pathology report comes back. But adeno sure can contribute to all the bleeding and clotting that you are describing.

If you have an abdominal myomectomy, your recovery should be very similar to that of an abdominal hyst. Lap surgery is a much shorter and easier recovery ... my hyst was abdominal and the recovery took much longer. I went back to work at about 7 weeks post op, but didn't feel like I was back to full strength for many months.

Keep asking questions and we'll do our best to provide support, whatever you decide. I truly hope the myomectomy will solve your bleeding problem. I don't regret my decision to try that option ... if fibroids had been my only problem I think I would have been very pleased with the result.

Sending hugs your way.

Beth

Just about to have my second abdominal myomectomy. I had one three years ago and now have a tennis ball size fibroid sitting on my colon than I need to have out again. I debated for a long time on if it was just wiser to have a hysterectomy since I seem to be so good at growing fibroids - 5 last time at least 2 this time. I'm 40 and haven't had children - haven't played my saxaphone for quite a few years now, so can't help you with that.

I'm having a myomectomy again because the surgery just wasn't as bad as I'd thought. I wasn't prepared to give up my ovaries as the doctor wanted me to do with my sister having ovarian cancer if I went the hysterectomy route. I just wasn't prepared to go that far and in my heart of hearts don't want to get rid of my uterus just in case. My doctor and I ended up agreeing that while hysterectomy may be the smartest choice, its not the best one for me right now. He did want to do a frozen section on the ugliest fibroid as he does have some concerns about it this go 'round and I gave him permission to take everything if it looks bad (second surgery shortly thereafter would've been my choice).

Last time and in preparation for this one, I read this site a lot for suggestions. The surgeries (and unfortunately the preparation!) are so similar that I found this site very helpful. Most ladies don't have recurrent problematic fibroids so quickly, but I realize that I'm virtually assuring myself a repeat trip to the OR for a hysterectomy eventually with menopause still so far away. That's ok. I'm not ready now and more than one doctor thinks it needs to come out now.

I hate to hear that active duty military women aren't given preference over the military wives. Actually I think BOTH groups deserve GREAT care. Sure wish the best for you! I remember as a high school band member meeting a military band member at a summer camp. I decided at the time that he had the coolest job - still sounds like you have a great job to me!

Thank you so much for your prompt replies! I think I need to read up on adeno a little more - none of the doctors have even brought it up...they all seem fairly certain the fibroid and companion polyp are the cause.

Audrey - yes, I'm taking my vitamins with iron and trying to include iron-rich foods in my daily diet. I can always tell when I haven't had enough!

I just love this site! I spend so much time reading all the posts - there is such a wealth of information. I plan on printing the lists of questions for pre-op visits and other preparation oriented lists.

Sousette