Fibroids - Part 2

Here is an update to my earlier post about the fibroids/hysterectomy.

I have finally decided to move forward with the hysterectomy. I’ve spent some time researching the process on line and also looking into the costs and stuff. My insurance website has a calculator for predicting out-of-pocket expenses on normal procedures. When I looked up hysterectomies it told me my out of pocket would be over $13,000! Luckily my gyno had given me the procedure code for the hysterectomy so I was able to call my insurance company and ask them the real price. I did confirm with my insurance that the surgery is covered 80% after my deductibles. I have already met my deductible with all the Dr visits I’ve had so far this year. So my out of pocket will be about $1500 in the end. Much better than $13,000!! So I figured it’s time to get it scheduled.

Last week I called my gynecologists office to see about getting a surgery date for the abdominal hysterectomy. I ended up speaking to her nurse and I was able to ask her a couple more questions about recovery time and such. Then she started telling me about another surgeon she works for who is an expert at minimally invasive surgery (laparoscopic or “robotic” surgery). She recommended I speak with him in case he could do it laparoscopic-ally for me. So while I thought that was weird to be referred away from the nice lady gyno I had talked to, I ended up making an appointment with him for a second opinion. I figured if I can get a laparoscopic removal the incisions would be tiny and less scarring, less scar tissue, and faster recovery time – over the abdominal surgery which is a lot like a c-section. I met with him on Friday and he checked me out. He was really nice and wanted to talk to me about my “options” for having children. He said there were procedures I could consider if I still wanted a chance to have my own children. But just like the other gyno, the reality of me having children right now is slim to none, not just because of the fibroids, or my age, but because I am not in a relationship or trying to be a single mom right now. His options are the same as what I have heard before: Basically, try and remove the fibroids which "could" give me a 1-3 year window with which to have a child. Removal is a similar surgery to a hysterectomy, and it would remove large fibroids that are visible. However, I could have many other fibroids in there that could start growing too. Typically the ultrasound doesn't show the fibroids that are less than 1-2cm and my Dr has past history that shows when a woman has 5 showing on the ultrasound, there could be as many as 10-20 more that are too small to measure on the ultrasound. So even if the large fibroids are removed and the window is potentially opened up for a couple years, there will be more fibroids growing and causing the same problems for me. This would result in needing to have the hysterectomy anyway. The other problem is my age and eggs. He said that without "help" a woman over 40 is not going to be very successful conceiving a healthy child. It can be done - but that is a whole other process with infertility treatments, invitro, etc. So conceiving a child would be half the battle, the other half would be whether a child could grow inside a damaged (scar tissue) uterus with more fibroids growing and feeding off the blood (nutrients) that are meant for baby. The chances of miscarriage are high. I have come to the realization that I want kids and family, but I don't necessarily need to birth a child of my own. I will be ok with adoption or welcoming other children that come into my life.

This is always a difficult conversation for me to have so of course there were some tears. But the end result is that, I need to have the hysterectomy, especially after the disgusting period I just recently had (am still having!). What he wants to do is try and shrink my uterus as much as possible before the surgery. He does this with multiple shots of Depot Lupron. This drug temporarily stops the hormone production of estrogen which causes the fibroids to shrink. As the fibroids shrink, so does my uterus. A normal uterus is 70-80 ccs. He says mine is 700 cc’s making it 10 times larger than normal. Ugh! So the only way to safely remove my big ole uterus is to try and shrink it first and then he goes in laparoscopic ally to chop it up into pieces, the pieces will come out thru my vagina. Talk about TMI, huh?! Oh, and the “BEST” part is… this drug will put me into menopause so I should expect hot flashes, night sweats, dizziness, loss of sexual desire and all the other lovely side effects of menopause. But hey, he is the expert right? He should know the best route. So I agreed and actually got on his surgery calendar. First off, I need to immediately go off birth control. Then come in for a biopsy. He needs to make sure that I am NOT pre-cancerous anywhere. He gave me a prescription for some meds that I need to shove up my vagina before the biopsy. This is supposed to help soften my cervix area – but said it will lead to major cramping. Lovely!

Then after the biopsy results indicate that I am not pre-cancerous, we can move forward with the shots of Depot Lupron. The first shot will induce a period again (even though I am just ending my current one). But the 2nd shot should eliminate any further periods. He would like me to get one shot a month for 4 months. That would put my surgery into Nov/Dec and that is our really busy time of the year. I asked him if there was any way we could get it done before summer ends (as summer is predictably slow for us) so it would give me more time to recover. So he is fast tracking the process for me. We are hoping to get 3 shots in between next week and Aug 24th – which is my surgery date. I will go in a week before surgery and he will check me out to make sure I’ve had enough shrinkage to allow the surgery to happen. This surgery would take approx 4 hours and he would probably go thru 3 or 4 cutting tools! He recommends that I take 2 solid weeks off work for recovery. I should be on pain meds for 3 days after but I could be ok to drive on the 4th day. But he wants me to not work and to walk instead. He has a whole walking therapy that he wants me to do in my time off. This helps the body recover more quickly?

I went home and cried some more. Like I’ve told you I am highly emotional! My high school friends, Jill and Ken (and Kristen) were actually at my house already because they were staying the night with me and we were going to Brenna’s wedding. (Yes, my high school friend Stephanie’s oldest daughter got married! She is 22 now. She just graduated pre-med from WSU and is headed to LA for medical school this fall.) Jill was very comforting as she has been dealing for years with endometriosis, cysts and even had a fibroid too. She never did get a hysterectomy, as she has been able to manager her pain and discomfort with a progesterone cream that she uses daily. Never the less, it was good to talk to her. I quickly changed and freshened up and we were off to the wedding. It was a really nice time. The wedding was held in Robinswood Park near Bellevue Community College. It’s a beautiful park and it has a main house on it that the gals got ready in. Luckily the rains held off and it was a nice outdoor ceremony.

******
Back to the hysterectomy, I have been doing some research on the "shot" that he wants to give me. Depot Lupron seems like a nasty drug and the side effects are much worse than I thought. Yes, the Dr told me I would basically go into menopause and have hot flashes and night sweats, but he didn't really say anything about the other side effects that I've been reading about. Migraines, depression, weight gain, acne and suicidal tendencies are just some of the fabulous prizes behind door number 1?! Some women have experienced long lasting side effects even after going off the shot: thyroid issues, weight issues, sweat gland issues. Some women report that 4-5 months of the shot didn't even shrink their fibroids at all? And the shot is apparently really expensive so I need to do some research on that. It doesn't seem like it's worth it all - just to avoid a big scar and longer healing time?

I called the nurse and talked to her about this. She said she hasn’t seen these other bad side effects in their patients. Of course. But I feel very determined about NOT taking the shot and not putting my body thru menopause. If that means I have to have an abdominal hysterectomy then so be it. I mean, it seems like I’d go thru 3 months of emotional and physical hell – just to have a lesser scar and 2 weeks less healing time. To be honest, it seems like trying to shrink my uterus is only helping the surgeon have an easier time in surgery – it’s not really doing anything for me. So that is how I feel. The nurse said I should keep my Wed appoint for the biopsy and I could bring up all my concerns with Dr. Rothblatt then. So I did.

I am not going to lie... Medically, yesterday was the worst experience of my life so far. Thank god Staci went with me and was able to drive me. My appointment was at 2PM. I had gotten a prescription for a drug that I was supposed to take four hours before the biopsy. The drug was called Misoprostol and it comes in a tablet form. Yet, you shove them up your vagina with your finger? Weird. An hour after shoving the meds up my vagina, I had the worst cramps of my life. By the time Staci got here I had thrown up, had diarrhea, and had soaked all my clothes and hair in sweat. I was miserable and there was no way I could have gotten to the clinic by myself. Once there, I was told my surgeon was held up in an emergency surgery so I had to wait. I basically laid down on a window seat in the fetal position. After half hour, they gave me an exam room to wait in. I tossed and turned on that exam table trying to get comfortable. I had to run to the restroom every ten minutes because I needed to pee – but couldn’t. It was EXACTLY like the time in Ellensburg when I apparently passed a kidney stone! The nurse came in and asked if I wanted to try and get the tablets out of my vagina to ease the pain. I tried to go in the bathroom and stick my finger up there but the tablets had dissolved (duh!) and all I could get was some crumbly residue. So the nurse gave me a pain killer shot in the butt - which didn't help. I had chills and was sweating. I had a blanket over me and a puke bag at my side. I was a mess. Finally my Doc came in after 2 hours. He apologized but had been called into an emergency surgery that couldn’t be helped. He said he would give me a few minutes to undress and come back in. I said “stop – don’t go anywhere!” I totally undressed right in front of him and said “Get to it”! I didn’t want to wait any longer. I told him I checked my pride at the door already. I didn’t care about formalities any longer. You should have seen me. My hair was like a mad woman, I was moaning and groaning, and barking orders. Staci wished she had a camera! She had never seen me in such a state. He opened me up and immediately used a numbing agent on my cervix and uterus. This didn’t stop the pain. Then he washed out the remaining medicine tablet residue before he started the biopsy. The end result is that he couldn't even get a biopsy because my fibroids are so big they were in the way. Argh!??

He said he wasn’t going to make me go thru this again. He thinks he got enough of the “area” cells to see if there are any malignancies or cancer cells. He said “well now you know what labor pains feel like!” Nice. I told him that I was definitely NOT going to use the Lupron drug. I asked him to be honest with me and if he didn’t think he could do the laparoscopic surgery without shrinking my uterus, I was fine with an abdominal surgery. He said he could do it. He agreed that he would try it laparoscopic-ally and if worst case scenario happened, he could cut me open and do the abdominal. He set me up with some vicodin and I was able to go home. Even the vicodin didn’t help. I think my body repels pain meds. It’s not fair!! The cramping meds finally wore down and I was feeling better by 7PM. I went to bed at 11 and still had some cramps though – 12 hours later!! Today, I need to call his office and get on his surgery schedule for a new date. I want to do this as soon as possible and since I don’t need to wait until August 24th now, I am hoping to get it done in July.

I now know what the Misoprostol drug is commonly used for. It is to induce labor, or induce abortion. AND “other” gynecological uses like to soften the cervix to allow for “interuterine devices”. That would probably be the long-ass speculum and q-tips to scrape? Uh, if I would have known about the all day cramps and pain, I would have told him to just stick the speculum up there drug free, take your biopsy, and if I complain you can punch me in the gut several times. THAT would have been less painful than the 12 hours of contractractions I went thru!

Whew! That about sums up the last week. I am still waiting for a call back from my surgeon's scheduler. When she calls me I will have a better date for the surgery. I don't need to wait until August now, so hopefully I can get in July.

Thank you Staci for going with me and getting me thru the day. I wouldn't have made it without you! Thank you Jodi for coming by to check on me, and bring me food and sweets! I appreciate you both so much!