Wham Bam You Need Surgery - Are my reservations valid? (Large Fibroids)

I'm new here, and still in the shock-and-awe phase. I knew I had fibroids, but they didn't really affect me much. Frequent and heavy periods (imagine the elevator doors opening in The Shining), big 'ol belly and all that, but otherwise few symptoms. My last gyn visit wasn't great - they were running behind, forgot to schedule my ultrasound then it was "Hysterectomy time - give us a call. Byee!"
So I had a consultation with a surgeon and, while she was very informative and patient and answered all my questions, I find myself with even more now, including a whole flood of reservations. I don't know if my doubts about my doctor and the procedure are valid or if I just have a chip on my shoulder about doctors (which I do, absolutely). I plan to seek a second opinion, but it's hard to get in to see anyone and I have a few deal-breakers (refuse to go to University hospital, complicated work schedule). I know these are all probably normal feelings, but I don't have anyone to talk to about them. The hubs is great and supportive, but of course knows nothing about my plumbing problems.
Doc seemed reluctant to discuss any alternatives to abdominal/vertical incision. My uterus is huge (22-24 weeks), but it seemed as though it was just going to be this way and that's that.
I already have Frankenstein-Crotch due to childhood surgery on kidneys, and the vain part of me would rather not carve up the area any further. No options like daVinci, laparoscopy, etc. Scheduling the procedure has been hard because apparently the doc wants another surgeon to assist - is it that bad and complicated, or is she not that good a surgeon? And when I was explaining work schedule to the surgery-schedule-lady, she kindly suggested I might be able to return to work when I need to be there, which would be 3 weeks post-surgery (if I had a sit-down job for example). I'm sure surgery-schedule-lady isn't an idiot, but should she be giving that kind of advice? It just rubbed me the wrong way.
It bothers me that I'm not knowledgeable enough to trust my own judgement right now. The more research I do, the more confused I get. Does anyone have any advice for me?

Hi SkepticalGal to HysterSisters!

I am so glad you found this site.

Your feelings, fears, emotions and anxieties are completely normal. This is one tough surgery to face and digest. You should seek alternate opinions on your condition, as you may have other options. You have a right to be skeptical - and you should be just that. This is your health and it is your decision. Having a hysterectomy is MAJOR SURGERY. You have to weigh the pros and cons against your current health condition.

Here are articles that may provide information:
5 Reasons to Seek a Second Opinion
Do I Need a Second Opinion for My Hysterectomy?
Uterine Fibroids Basics
5 Surprising Facts about Fibroids

You are also welcome to peruse our library on Uterine Fibroids Articles

We have many women on this site who also have experience with fibroids and this surgery and with the alternate options. Hopefully one will see this post and respond.

:hyshugs:

Oh man! So sorry about all this! I have never had fibroids i am an endometriosis sufferer and the hysterectomy saved me! But your situation is different than mine. I saw a doctor for pelvic pain, she had me do a phone appointment with a more educated gyno, then she sent me to a specialist because she said my condition was too complicated. So finally I found a womens surgical center and saw a specialist that specializes in womens health and does many many hysterectomies and she said I needed to have surgery and I trusted her and now I am recovering and in way less pain than before my surgery! I would try to seek out a specialist.

Your reservations are normal as far as I'm concerned. A second opinion is a good idea. The only reason that I chose not to get one was that my surgeon was my mother's surgeon/oncologist so I trusted his opinion.

I had a large fibroid uterus as well and my surgeon gave vertical incision as my only option . Though I didn't know until the day of surgery he had an assistant so that's probably standard.

Even though I was comfortable with my surgeon I had reservations up until they wheeled me into the OR but that was because surgery is scary😱but I was very anemic, had difficulty urinating and was sick of bleeding constantly so I really had no other choice.

Best wishes

I would politely tell the surgery-schedule-lady that she should stick to her scheduling job, and leave the medical advice to the doctors. As for your surgery type, regardless of what your surgeon is recommending, he cannot do anything without your consent; if he's reluctant to discuss alternatives to a vertical abdominal incision, then I suggest telling him that you will not consent to that until you get a second opinion, preferably from an OB/GYN who specializes in treating fibroids, like the one who did my surgery. Most surgeons don't have the specialized training for laparoscopic surgery, and might not recognize that this alternative may be feasible in some cases, so they'll default to recommending a vertical abdominal incision simply because that's what they know best. My fibroid-filled uterus was the size of a 22 week pregnancy; I had 2 monthly shots of Lupron, which shrank it to 16 weeks, and I was able to have my surgery done laparoscopically. My surgeon had originally planned to do an LAVH, but I pushed for a supracervical approach, because my research indicated that a vaginal approach would not be feasible, because I'd never had children, so I ended up having an LSH, where my uterus was removed through one of the laparoscopic incisions. I also had reservations right up until I was brought into the operating room, but I quickly came to realize that it was the right decision, starting from my first night home, when I slept right through, without a grapefruit sized fibroid sitting on top of my bladder waking me up at 3 AM; once you're freed from those frequent, heavy periods, I'm sure you'll feel a lot better Getting a second opinion from a fibroid specialist can help you to sort out your options, so you can decide on what's best for your individual situation. Wishing you all the best for whatever you decide!

I hear your concerns.

Each person is different, but my story is similar. The main difference is that my doctor and everyone in his office was AMAZING. Patient, helpful, understanding. He did my endometrial ablation more than a decade earlier, and I had been relatively symptom-free for most of those years.

My experience was about as easy as you can get with regard to the actual procedure and doctor. TAH with a horizontal incision.

Rely on the support you get here. Ask lots of questions (which it sounds like you do), maybe call the library and see if the reference librarian can help you find other providers to inquire about care options and specifically your incision concerns.

If you’re like me, once your body heals, you’ll wonder why you didn’t do it sooner. I wish the best for you.

Christine, TAH 6/28/19

	Quote:
Originally Posted by SkepticalGal I'm new here, and still in the shock-and-awe phase. I knew I had fibroids, but they didn't really affect me much. Frequent and heavy periods (imagine the elevator doors opening in The Shining), big 'ol belly and all that, but otherwise few symptoms. My last gyn visit wasn't great - they were running behind, forgot to schedule my ultrasound then it was "Hysterectomy time - give us a call. Byee!" So I had a consultation with a surgeon and, while she was very informative and patient and answered all my questions, I find myself with even more now, including a whole flood of reservations. I don't know if my doubts about my doctor and the procedure are valid or if I just have a chip on my shoulder about doctors (which I do, absolutely). I plan to seek a second opinion, but it's hard to get in to see anyone and I have a few deal-breakers (refuse to go to University hospital, complicated work schedule). I know these are all probably normal feelings, but I don't have anyone to talk to about them. The hubs is great and supportive, but of course knows nothing about my plumbing problems. Doc seemed reluctant to discuss any alternatives to abdominal/vertical incision. My uterus is huge (22-24 weeks), but it seemed as though it was just going to be this way and that's that. I already have Frankenstein-Crotch due to childhood surgery on kidneys, and the vain part of me would rather not carve up the area any further. No options like daVinci, laparoscopy, etc. Scheduling the procedure has been hard because apparently the doc wants another surgeon to assist - is it that bad and complicated, or is she not that good a surgeon? And when I was explaining work schedule to the surgery-schedule-lady, she kindly suggested I might be able to return to work when I need to be there, which would be 3 weeks post-surgery (if I had a sit-down job for example). I'm sure surgery-schedule-lady isn't an idiot, but should she be giving that kind of advice? It just rubbed me the wrong way. It bothers me that I'm not knowledgeable enough to trust my own judgement right now. The more research I do, the more confused I get. Does anyone have any advice for me?

I had a huge fibroid as well and had a TAH with a 7in vertical incision. Surgery and recovery went well, no complications or set backs. It is MAJOR surgery but I am glad I had it done as I had heavy bleeding 3-4 days a month and had to take iron supplements to not be anemic. I also had to pee constantly from everything pressing on my bladder. I took the iron for a few months after surgery to get my levels back where they should be. I no longer have to pee all the time, my bladder is much happier.

I have a physical job so I was off 6 weeks. At 3 weeks I probably could have worked from home on a laptop for a few hours a day if that's what my job entailed but I would not have gone into an office. Everyone heals differently and at their own pace so there is no telling what you will feel like at 3 weeks until you get there. Also you will most likely have lifting/pushing/pulling restrictions until at least 6 weeks.

Thanks to you (and everyone) for the kind replies, but this - your answer - turns out to be the one for me. After a rough 48 hours of struggling with my intuition, research, and doubts, I reached out to an old friend from HS who happens to be an excellent gynecologist. Within the day she had put me in touch with a colleague who is a fibroid specialist willing to see me this week. He seemed to think I have options - anywhere from embolization to the lupron treatments, and seemed pretty confident that if I wasn't a candidate for other treatments, then laparoscopy was a definite option. HS friend also diplomatically implied that my doc (whom she knows) was not too far out of school, and probably wanted someone more experienced to assist. I can't help but wonder why I wasn't assigned to the more experienced doc in the first place? Anyway, I feel like the weight of the world has been lifted off my abdomen. The result might be the same, but even the tiniest possibility of options has lifted my spirits. I will be seeing nice new doc (who called me on a Sunday!) this week, I hope. Hope! It's a great thing.

Hi SkepticalGal -

I am glad you are seeing another doctor who is providing options and is experienced. That is great news.

Let us know the results of your visit.

Excellent idea to go see someone that is a referral. I do dadded for a year whether to get a TAH or whether to try different options. Every 3 months of continual bleeding and more research I came to the conclusion that the only permanent way to relieve myself from this problem was hysterectomy. Recovery was a full 7 weeks but I have not really looked back. I can pee normal, bowel movements much easier, lean and bend forward, bloating gone and heartburn a lot less. It was all well worth it for me, but everyone is very different and unique. Get as much reliable information and then try to work through that at your own pace before making a solid decision. Good Luck!