Pretty's Surgery: Excision of Endo from pelvic area, bowel, bladder, ovarian endometriomas, rectal area, appendectomy, and endo removed from the back of my uterus (my uterus was filleted open is how she described it).
OK been meaning to post about my surgery, time to get it done:
On oct 13th met my surgeon for the first time. I live in Alaska and found my surgeon in Washington, so although I have worked with her office in arranging everything, this is our first actual meeting. As I expected, Dr. M is very energetic, friendly, and we chat about her Alaska trip of a few years ago where she did visit my town. We talk briefly and then she gives me a pelvic exam, a vaginal ultrasound, and a brief rectal exam. We measure the endometriomas on my ovaries and they are each over 6 cm by 6 cm, one is nearly 8 cm. She sees no issues with my uterus from the US. I describe my tubes, which I've seen during the HSG test I had a few months ago. We talk about areas of pain and she asked specifically about shoulder and hip pain which I had mentioned on my history I wrote for her to read. She was wondering about endo in different areas. I was impressed with her reactions, they were so relevant to the understanding I have of endo and things I've heard and read about it. I described the diet I follow and how I intend to keep my endo in check using the diet and other life changes I've made. We talked a bit about my fertility, and she spent time discussing possibilities and my actual wishes. I confirmed that I would love to preserve fertility and that is a goal. but in the eventuality that one ovary is more viable etc, that I wouldn't object to actually losing both ovaries, if they were beyond help, but that would be my worst case worst scenario. She also carefully went through many eventualities, even down to putting in a stent in a tube if needed, taking my uterus too in the event that both ovaries had to go, and basically any possible outcome. She totally covered all this in a non-judgemental non-threatening way. Totally all about what I wanted. I signed off on all the things we discussed as well. Other impressions of my first visit with this Doc were that her staff are professional, friendly, and kind. Her Assistant, Lindsay, was very competent and thorough but shocked us both by initially greeting me and then going on with her checklist she asked me to confirm that my procedure would be a Hysterectomy! I actually didn't even get mad at her, I was very calm and said No, that's a mistake, I'm having endo removed by the robot! Lindsay the assistant was pretty flustered by that mistake, but didn't over apologize which I always hate but soon got back in her groove and went through the rest of her stuff with me.
On Oct 14th went to St Josephs hospital for pre-admit, just verifying all the instructions and who I am, etc. Took about an hour and a half. It was a nice drive over from Gig Harbor, where the hotel was. I am so glad we are staying over there instead of in Tacoma. It would just make me feel like crap to stay in some dirty downtown hotel. The place we did reserve is quirky, but it has a patio to a big lawn with giant, pine-cone dropping trees that make me feel at home, and it's really more of an apartment complex, sort of run-down, yet homey. Anyhow, it came with pots and pans in the kitchen so we can do our own meals. I've already stocked up on rice milk, popsicles, and fruit.
On October 15th went for daVinci Robot excision of endo, also had appendix out. Went in there at 5:30 am for a 7:30 am surgery. Was told at check in that surgery would be about an hour and a half, with another 3hours total set up and take down of the robot. (Ha!) Met the anesthesiologist who was very nice and had a aussie accent. nurses nice too. very clean looking brand new hospital seems really awesome. They gave hubby a pager and told him he could do his thing, they'd let him know when to come back. Apparently then after I was out, my surgeon came out and told him it would be a lot longer than 3 or 4 hours and that she had his cell number, basically told him to take off if he wanted because it would be a long day waiting. Then she went back in, and when he tried to leave to go eat somewhere, the elderly lady at the desk read him the riot act "you're not going to just LEAVE with your wife in SURGERY" so he did end up spending the whole day there. My surgery was 7 and a half hours long, 6 hours longer than the 'normal' endo excision. This is why I LOVE my surgeon. she could have thrown in the towel there after 3 or 4 hours but she didn't, and she kept both ovaries and tubes, I really doubted that she could, with the amount of endo found there, it was unlikely that I would come out with any fertility at ALL. anyhow I haven't read the report. My surgeon told my husband my endo was EXTREME whatever that means (it means extreme, you ninny) and later told me that I have an unusually high tolerance for pain, which is how it got so very bad in the first place. so yes definitely stage 4 endo and beyond (applause)......
When I woke up I had pain, they gave me the pump and I pumped the heck out of it. had this wierd pain right next to my belly button. Doc told me later that at one spot of my uterus it had grown into the wall, and that she fixed it up and sewed it shut. pretty sure that's where that pain was. was given chicken and rice for dinner which I didn't eat but wouldn't let them throw out either lol. then spent the nite, hubby too on a little chair thing. poor hubby! a lot of vitals checks, a lot of nurses, whatever, get me out of here!
My doctor did have to do so much work to give me the exact result I wanted. I think once she got in there she just really had to decide right away, whether to try to save the whole mess, or just cut it out and be done with it. I am just so blessed that she chose to try to save my ovaries and uterus. It really can't have been easy. In this respect it was so worth it to have made this long journey to a strange doctor. I'm just so pleased that she did it for me. There's really no telling if it will work or not, as far as fertility goes. But the cost and dangers of hysterectomy, without ever being able to produce those complicated hormones, is the real gift as I see it. I just know that my own body should be the producer of any hormones I need. I just feel so strongly that a hysterectomy is the wrong choice for me right now and I'm so glad she didn't give me one, although no one couldhave blamed her. I looked at the pictures she showed me and you could literally not tell one thing from another. All totally coverd and draped and festooned with endo and adhesions, which look like little spider webs in corners, and it's all this odd pinky white color where the things underneath, uterus ovaries tubes intestines appendix should all be different looking texture and color and shape, it's all just covered in this uniform drapery of endo. The strangest thing I've seen. You can't see the edges of what's underneath. That means she did the whole surgery, by robot arms, blind. Jeesh! so totally, totally cool.
On October 16th was released after finally making enough pee to be let out.
October 17-21 just laying around a hotel, my mom was there to hold my hand.
October 21 flew home to AK, almost postponed the trip, glad now I came home as felt much better just being closer to home.
then October 23rd got all the way home, to my husband and my dogs. So happy! still woozy and taking the dilaudid (mostly out of fear of pain rather than actual pain I think)
Today October 28th off all painkillers, a little concerned havent had my period yet. but up walking around doing housework, etc. feeling more like myself than ages. Waiting for my body to start my period. Have been told that we have about
*3 months to TTC so I'm anxiously awaiting that AF and reading TCOYF like it's the Bible.
*amending this: we were told NOT to TTC for at least 3 months.
Recovery has been ok, my main concern was those ovaries, just freaking myself out about the whole high pain tolerance thing, and also worrying too much about basically everything including going back to work, TTC, taking better care of hubby who has been really trying hard to care for me (not his strong suit) and getting on with my life in the meantime. Also now family members and friends are doing thier own research on endo, so now have to deal with them as they realize 1) how painful it is and 2) it does come back, anyhow this has been very hard for me to take, almost like they are grieveing me and I'm still here, dammit! that's a side of a chronic illness that's been very hard for me, is when you have to deal with other people's feelings about it. I'd much rather not talk about it thank you very much!
Anyhow I think this is already the most like my best case scenario, and I'm super glad to still have my ovaries and tubes. I'm going to take some good advice and just let my body do it's thing here for a couple more days. I do have an email in to my surgeon with a couple of questions so I'll update this after I hear from her. Posting this in the hopes it can help someone else facing the same thing, I know I was all in knots trying to plan what would happen, so hopefully it's going to help somebody...
OK as of
October 31st, today, I'm all up in the air again. I've gone from feeling like I'm a hundred percent healed, with energy and some kind of strength, to the bottom fallling out, leaving me with not enough energy to even freak out. Almost feel like a panic attack but too weak to pull it off. I'm using this post to keep track, because I'm really really not myself. Am thinking that I possibly bit off a bit more than I can chew with this surgery and with what I asked the surgeon to do, bless her. Anyhow strange and troubled times for my body. I realized that I can't feel when I have to pee, for some reason, probably pelvic muscles still spasming, or something. Hoping to feel more healing, asked for another week off today. My goal is to modify this post more often so I can check it later. Terrible memory!
OK, Today is
November 2nd. I've gone back to taking pain pills, sort of methodically, because although I don't have a lot of what I would call pain, I definitely am starting to recognize that the extreme tension in my pelvis is a pain response so even if I don't say 'ouch' I do have to look at it as real pain. Ok. So that said, today I got up, peed, could feel very specifically each of my new ovaries, could feel before I peed the pressure against my uterus. Then took my vitamins, had a smoothie, and took 1 tramadol, 1 800 ibu for inflammation, 2mg dilaudid, and the permethrin with that, plus 2 stool softeners, my omega oils, and had a emergen-c blue (b vits). I can see by my body's reaction that the pain meds do relax a whole lot of that pelvic tension, so that's good. it's been a decent day. I didn't push myself at all, walked a total of probably 100 steps, and the fatigue/pain 'crash' I've been running into lately is not happening today. I feel calm, organized, and relaxed. Really trying to feed my body whatever it needs so it can build good ovarian tissue. I am working on welcoming my ovaries to my clean, safe body, to produce the hormones my body needs, and possibly or possibly not ovulate me an egg to make a baby. I am working on just accepting my ovaries as friendly hormone producing entities that may not ever produce an egg for procreation. Thats' an issue for another day
.
Today is
November 4th, and I think the last 4 days of just focusing on healing, staying quiet at home, and putting the best healthiest foods in my body is really starting to show. I have also continued pain pills in moderation, because I can see the relaxation if not feel a difference in pain... I still do feel occasional sharper pains in the abdomen but I think it's either digestive or just plain constipation as opposed to endo pain. I do feel a little tenderness still in the pelvic area where my surgery was. I'm not feeling my ovaries individually like a few short days ago, so that soreness is definitely getting better, and I want to say it is all in relation to the activity I do in a day. Days like the last few where my activity is super limited, I don't feel like I'm recovering from surgery. Pretty sure though if I go and try to do a whole lot tomorrow, the aching and exhaustion would still come on pretty quick. But I feel good enough to go back to work next week, which I really need to do. Even if it's shorter days for a week or two. I can't stand sitting at home! It has been nice though to be able to do this healing step in my path.
November 7th. Have been staying really inactive that's the only way to describe my sloth like behavior. W has been really good about carrying things here and there and even assisted with the long-overdue trip to the laundromat. Continuing the dilaudid and permethrin except only once per day. Seems to keep me more relaxed. Honestly can't feel much different with the prescription for vaginal cream. It's amitryptiline 2 % baclofen 2 % and baclofen is a muscle relaxer and an antispastic agent. I have had amitryptiline before, as an antidepressant years ago. Anyhow this cream finally arrived by mail. I had to buy a yeast infection kit to get the plastic applicators so that I can inject this cream into my vagina.... Anyhow most of the cream seems to squirt out as soon as I stick it in there. I really can't see much difference but I'll give it a try for a couple weeks at least go through the motions and see what happens. We've got 2 more months before we're allowed to TTC so I'll try anything to help my muscles un-spasm down there.... So yeah this healing is really coming along, I do feel much much better and not nearly as sore. But definitely learned my lesson on over-doing it and that's what I'll remember. LOL I remember not two weeks ago just coming unglued after literally about 20 minutes of activity. I'm up to about 40 minutes of 'activity' a day now, doing the dishes, picking up around the house. Yesterday I folded our laundry at the laundromat. Today not much yet, taking it slow. I am going back to work tomorrow, and will just be very sedentary. My office is upstairs so I'm going to set a limit of 2 or 3 trips up and down stairs a day my first week back. Theres no reason I can't go home too, if I get worn out, and my boss is very very compassionate... I am lucky in that I am very good at what I do, so I should be able to get the work that's essential done each day in a couple hours or so. Anyhow, I just feel really lucky to have this time off for healing and so lucky to have found this position. It's sad but true that there are few jobs in my small town that actually offer health insurance so my husband and I were very lucky this year in that our health issues came on suddenly, just after benefits began
so I can never doubt my luck. Except for getting endo of course
but still only can fight it with a good attitude.... thanks for reading this, hope it can help someone else plan.
November 16th - Last day and a half been to two doc appts, an ultrasound and urine culture.... Had hard stabbing pain and inflamed ache on upper left side (right below ribcage, down to ovary area...) went to Doctor hoping for some kind of idea if it's related to my surgery, if it's endo returning, or what. No UTI found, no free fluid in abdomen, so seems to just be my re-built ovaries kicking into gear. Took my first pain pill in a week, felt ok. Trying to get back to no pain pills is a killer. Seems to be the consensus that the sharp and stabbing pain is my ovary, and the aching inflamed pain unknown. Hoping it is ovulatory pain so I can get my period in 2 weeks, and see how THAT goes. Frustrated with stupid dumb useless endo today!