Question on Fibroid removal recovery - 7.5 months ago

Hi All,

I had several fibroid removed in November 2013. It was a 4 hour surgery with the robot. I had 5 incisions. 1 in th belly button, then 2 on ether side of the belly button. They are aboouot 1.5 inched. And if you were to connect the dots they would make and rainbow shape, or a frown. I call them my "surgery cuts"

My question is this - my surgery cuts have been sensitive ever since. The pain is worse on some days better on others, but its always there. I hurts when the cat (skinny fella at 6 lbs - so not a chunky monkey) "makes bread" on my stomach. I jump a mile and kick him off of me. It hurts to do any kind of yoga where "massage" the internal organs - I just cant do it.

Right now my computer in the the chaise. I tried to type this message with my knees on the floor and my body laying the the chaise, but that quickly ended.

Also, going to the gym aggravates them as well. They hurt really bad after a run.

I hate touching them. In the shower, I was around them. They are really uncomfortable.

Is this normal? How long does it take for the surgery cuts to feel ok? They are not infected, they look fine. I do not have any scarring issues (where they get puffy, etc).

The worst part is that they couldnt get all of my fibroids in one surgery, so I have to do another, but I am scared. I was scared the first time, but since I do not feel like my cut are healing ok, i am even more scared.

I'd talk to your surgeon. I had an open myomectomy less than three months ago - 5 inch incision and generally feels fine. I still have some internal tenderness, but it's getting a lot better and my incision itself generally doesn't hurt at all.

Did they say why they didn't switch to open myomectomy when they found they couldn't get all the fibroids with the robot? Will your next one be open so that they can be sure to get them all?

Thanks for your reply. I will make an appointment to see the surgeon.

The reason they didnt switch was becuase it was planned that it needed to be split into to sessions. I have so many fibroids, they cant remove them all. I would have uterus left if they did. And the ones the need to remove the second time need to be done vaginally.

Ugh. I am once bitten, twice shy about get them removed.

Then the ones that they cant get will grow and need to be removed eventually. Or, I will need a hysterectomy at some point. Thinking about this gives me anxiety.

Ah, I see. How many do you have? I just had 28 removed in May. Unless you have hundreds, they should be able to get them all through open myomectomy.

Really? 28? How big were your 28?

I dont know how many I have exactly. The way it was described to me was that basically my whole uterus is filled with fibroids. He remove 3 large ones with the robot, then there are a few internally he needs to remove vaginally. The rest are so small that if he removed them, i would have a uterus with a bunch of holes like swiss cheese.

Not sure it matters at this point bc I am too scared to do it again. Not because my cuts hurt now. That is secondary. In fact, I feel much better since the 3 large ones were removed. But I was so scared. I really honestly thought they were wheeling me to my death when the wheeled me to the ER. I cant do it again. I am so afraid I am going to die. I think I might have traumatized. And coming out of it, my mom told me that the first thing I said was "Im surprised they didnt kill me".

Yep, 28! And most were a surprise. At my last ultrasound (Jan '14), she saw three that were about 9cm and one that was about 4cm. I did two months of lupron to shrink them, and the biggest ones shrunk to about 7cm. She said that at the time of removal, the 28 fibroids ranged from grape to orange size.

I wonder if a second opinion is order for you. I've read that if you're told your uterus would be like swiss cheese, you're getting incorrect information. http://www.fibroidsecondopinion.com/...-swiss-cheese/

Most of my fibroids were in the uterine muscle, and my surgeon certainly didn't say it was left with holes - she said that when she was done it looked so much more normal than before!

Do you know what part traumatized you? I have medical ptsd and when I first found out about needing to move forward with surgery, I was POSITIVE that it would retraumatize me. However, I worked very closely with my surgeon to make the surgery and hospital stay safe for me, and it actually turned into an extremely healing and empowering experience.

If I decide I am brave enough to take care of it, Ill get a second opinion.

I think the part that really upset me was that I was FREAKING out for hours the day of the surgery - from the moment I arrived until they took me to the OR. They gave me nothing to calm my nerves. I appear calm even when I am totally panicking so I don't think anyone believed me. I was panicking because I honestly thought I was going to die. I was waitning counting to down my time... my hours left... my minutes left. Then when they wheeled me to the OR my whole body went numb because I just knew I was going to die. Then they let me sit in the operating room (which is a totally freaky scene in and of itself) while they were setting up. I told them again I was freaking out and they told me the anesthesiologist was at lunch. They said they would find him. When he finally showed up, he was behind me so I didnt see him immediately, but i looked up at my IV and saw him putting something in my IV and I totally freaked out. I grabbed a nurses hand and told her I dont do drugs and I was scared. And that was the last thing I remember.

Then when I was waking up I guess I was surprised that I was alive.

I might consider the procedure where the block the blood supply with sand, but that scares me too. When I say I don't take drugs - its bc I am scared of them. It includes drugs from a doctor. So lupron is off the table.

I guess the good that came out of the experience. Is that I swore that if I were lucky enough to survive, I would never smoke another cigarette. And I haven't. Its been nearly 8 months.

Ivy - I think a lot of people are afraid of dying in surgery so you are not alone. I personally am not afraid of dying but scared to death of Post Operative Cognitive disorder - one of the things doctors don't warn you about with any type of anesthesia. It is taboo to talk about and some doctors don't believe it happens. But my grandfather had this happen to him in the worst way possible. Some people have minor issues like forgetfulness that eventually goes away while some people like my grandfather had 100% dimensia when he finished his surgery and was never himself again. So personally I would prefer to die in the OR than to come out of surgery like him.

I was recently supposed to have kidney stone surgery and whimped out because of this and a few other reasons (e.g., didn't trust the doctor). But in this case I feel that my gut was strongly telling me not to do it, so I decided to wait and honestly my gut was right. I passed my kidney stone naturally with no problems 2 weeks later. Listen to your gut and follow what it tells you to do but also weigh the information you have. I did both which is part of the reason I didn't trust the doctor. And I am very happy with my decision. Now I have to figure out what I am going to do to treat my fibroids.

	Quote:
Originally Posted by Bef-99 Ivy - I think a lot of people are afraid of dying in surgery so you are not alone. I personally am not afraid of dying but scared to death of Post Operative Cognitive disorder - one of the things doctors don't warn you about with any type of anesthesia. It is taboo to talk about and some doctors don't believe it happens. But my grandfather had this happen to him in the worst way possible. Some people have minor issues like forgetfulness that eventually goes away while some people like my grandfather had 100% dimensia when he finished his surgery and was never himself again. So personally I would prefer to die in the OR than to come out of surgery like him. I was recently supposed to have kidney stone surgery and whimped out because of this and a few other reasons (e.g., didn't trust the doctor). But in this case I feel that my gut was strongly telling me not to do it, so I decided to wait and honestly my gut was right. I passed my kidney stone naturally with no problems 2 weeks later. Listen to your gut and follow what it tells you to do but also weigh the information you have. I did both which is part of the reason I didn't trust the doctor. And I am very happy with my decision. Now I have to figure out what I am going to do to treat my fibroids.

I am afraid to die. Big time. I don't know which I would prefer but I am sorry that happened to you grandfather.

Surgical awareness would be another horrible thing to experience. My uncle who is an anesthesiologist experienced awareness
During one of his surgeries. I could not imagine being aware and not being able to do anything about it. It makes me shudder to think about.



Good luck choosing what to do about the fibroids. It's not easy bc all options aren't that pleasant, imo.

Ivy,

No offense, but it sounds like you had a horrible surgical team! Not to say that their technical skill was horrible, but they sounded very callous.

I had TERROR - both of abuse and fear of dying under anesthesia. I survived a life-threatening illness as a young adult, and ever since I've had a feeling of being on "borrowed time;" I went through a phase leading up to surgery where I really felt like that would be it. That my time would be up on the operating table.

I did a lot of work in therapy leading up to surgery to help process my feelings and also separate them from facts. For example, you write, "I just knew I was going to die." But, the reality is that you didn't know it because it didn't happen. It felt like it was a certainty at the time AND obviously it wasn't because here you are.

A good surgeon and surgical team will help you manage the anxiety and will support you through it. My surgeon gave me a prescription for ativan to alleviate anxiety for the week leading up to surgery. I even took one the morning of surgery, so I already had something in my system when I got there. I'm very scared of stronger sedatives because I didn't want to have anmesia, and my anesthesiologist - who was with me BEFORE the O.R. - completely respected my request and didn't give me anything stronger. (Though she would have if I wanted it.) My surgeon, anesthesiologist, and nurse anesthetist all walked to the O.R. with me.

I was only in the O.R. for a minute or less before being asleep. I don't remember seeing any scary tools or lights - just my surgeon's reassuring face. My surgeon requested that nurse from the children's hospital bring me a teddy bear in pre-op and the last things that I remember are looking at my surgeon and saying, "Will you make sure my teddy bear makes it to recovery with me?" She smiled and said she would. Then I asked my anesthesiologist if I should start my music (on headphones) and she said to go ahead. I started my music, and then I was asleep. I was also TERRIFIED of anesthesia awareness, but I had none at all, and my surgery was four hours long. I went to sleep and woke up when it was all over.

A good surgeon and surgical team will listen to you, take you seriously, and respond appropriately to your fears and concerns. I got to know my surgeon quite well prior to surgery so that I could know that she was the kind of provider who would keep me safe - and she REALLY went out of her way to do so. And, because I met with her multiple times leading up to surgery, I felt very safe with her, and that made the whole experience feel safer. Not only did she listen to my fears and concerns, but she made sure that everyone else did. Nothing happened without my consent the whole time I was in the hospital - no one put anything in my IV without informing me, no one touched me without asking me, etc. I felt extremely in control the whole time. And I knew that my surgeon would be in control when I was unconscious and I trusted her to keep me safe, which she did.

In addition to creating safety plans with my surgeon and being open with her about my fears, deading up to surgery, I used a visualization program called Successful Surgery to help with my anxiety - it even includes music to listen to during surgery. I also worked with my therapist to process the trauma (we did emdr) and work through my fear of anesthesia, anesthesia awareness, dying, etc. And my surgeon also set up a pre-op for me with an anesthesiologist so that we could talk through those fears specifically. Quite honestly, we do things every single day that are FAR more dangerous than being under anesthesia. I tried to remind myself of that a lot as well.

When you have the right support and the right surgical team, it can actually be an incredibly empowering experience.

It sounds like some of your fears really can be harmful to your health - have you ever thought about seeing a counselor to help with that?