The whatever was still present on today's ultrasound, and it's now obvious that it is contiguous with my endometrium. Instead of being all tucked inside my uterus like it should be, my endometrium appears to literally keep going right through my scar and to expand on the outside of my uterus. Dr. Boss says it's probably either more endometriosis or adenomyosis, and that there's really no good way to distinguish short of laparoscopy or hysterectomy. I'm a long way from ready to discuss the latter, and he doesn't recommend the former at this time.
This is logical enough, I suppose. Adenomyosis requires hysterectomy (or at least removal of a substantial chunk of uterus), but it's less clear-cut for endo. It's in a tricky spot, on the front of my uterus directly behind my bladder, and he is reluctant to go poking in there if it can be managed medically by cutting off the estrogen supply. Reading between the lines, it will probably happen sooner or later, but he wants to try drug approaches first.
Medical options are somewhat limited at the moment because I'm breastfeeding, so BCPs and Lupron and Danazol are all off the menu. I don't have much enthusiasm for them anyway, given the side effects and the limited effectiveness. We know I was hypoestrogenic for at least some of the time the endo was growing anyway, so it's questionable whether artificially-induced hypoestrogenism would help. On the other hand, I had bad periods as a teenager but was fine for all those years of BCP, so the BCP may have held it in check. BCP is easily reversible and has relatively mild side effects, so I'm more okay with that than the other two, after weaning.
The current plan is to do a pain-management approach. The pain has backed off some since I quit bleeding last week, and is mostly manageable at the moment with daily NSAIDs and the odd Percocet right now. We're going to keep doing that until I'm ready to wean or until I am dysfunctional enough to decide to do something about it. After that, we'll see. The simple fact is that we don't know what my natural progression is, and what my "normal" cycle will look like. I had four periods between the girls and Andrew, none of which were really terrible. Since Andrew's birth, things have been so muddled, with the infection and the endo and the lap, that it's just really not clear how things will settle down.
Another lap and/or a hysterectomy is probably in the cards eventually, because this stuff seems to be pretty aggressive. Four months ago, I didn't have endometriosis at all. Six weeks ago, the endometriosis was removed. In the four weeks after that, it appears to have regrown enough to flip my uterus around and escape its boundaries. At this rate, Tokyo better watch out.
Wednesday, January 21, 2009
Friday, January 16, 2009
One problem resolves, two more crop up
The whatever in my cervix was gone on Wednesday's ultrasound, but now there's something outside the uterus, like it's attached to my scar. They don't *think* it's what they were previously seeing in my cervix, but it's possible -- my normally-retroverted uterus has now flipped forward, so everything looks different. Dr. Boss thinks it is probably not an abscess in the absence of an elevated WBC, so I'm to go back on Wednesday and look at it again. Bleeding started again on Sunday but stopped yesterday, so who knows. I'm running a fever at the moment, but I also have a nasty cold that's about to turn into an asthma flare-up, so it could just be that.
Andrew clocked in at a whopping 12 lb 15 oz -- that's a gain of a pound and a half in two weeks, which is pretty impressive. I'm reasonably sure he weighs more now than ever before, and he feels so nice and solid when I pick him up. He's slept better at night the last couple days, although naps are a disaster. Supplementation is down to about 8 oz of formula a day, so the Reglan has made a definite difference.
The cold has sapped the last of my enthusiasm for, well, anything. I'm probably going to have to start on steroids tomorrow, since my peak flows are going rapidly downhill. I do have some on hand now to start whenever I need them, so at least I won't have to go into the urgent-care clinic for a steroid shot. Happily, the kids don't seem to have gotten it, although Andrew's a little stuffy, and they've been just as happy to have a pajamas-and-TV day.
Andrew clocked in at a whopping 12 lb 15 oz -- that's a gain of a pound and a half in two weeks, which is pretty impressive. I'm reasonably sure he weighs more now than ever before, and he feels so nice and solid when I pick him up. He's slept better at night the last couple days, although naps are a disaster. Supplementation is down to about 8 oz of formula a day, so the Reglan has made a definite difference.
The cold has sapped the last of my enthusiasm for, well, anything. I'm probably going to have to start on steroids tomorrow, since my peak flows are going rapidly downhill. I do have some on hand now to start whenever I need them, so at least I won't have to go into the urgent-care clinic for a steroid shot. Happily, the kids don't seem to have gotten it, although Andrew's a little stuffy, and they've been just as happy to have a pajamas-and-TV day.
Friday, January 09, 2009
Progress
I finally got back in to see Dr. Boss this morning for a second opinion. Things look better in there than on Monday, as the free fluid and the fluid in my uterus are gone, but I'm still hurting. The whatever-it-is in my cervix is a little smaller than on Monday, but it's still pretty sizeable. Dr. Boss didn't know what it was today, either. At first he thought it might be a fibroid, but after fiddling with the ultrasound, thought it might be some blood instead, trapped in my cervix. Where it came from, and what it's doing there, are good questions, to which we don't have answers just yet. He allowed that it's possible it could be infection, although with a normal white... and then I interrupted to remind him about how I didn't ever have an elevated white count with the tube-eating infection of doom, and he said, hmmm, yeah, that's a point.
He wants to give this a few days to see which direction it's headed and see me back on Wednesday. At that time, we'll consider doing an endometrial biopsy if I'm still feeling gross. Hysteroscopy's also potentially on the menu, but he's wary of potentially spreading around infection. He doesn't want to do antibiotics right now, because I've had so many rounds that he is worried about antibiotic complications popping up. That seems a fair point to me, especially given how wonderfully they've worked so far. In the meantime, he also gave me some pain medicine, so the waiting will be more comfortable.
As for Andrew, he is doing much better. He was up to 12 lbs 2 oz at his weight check today, for a gain of 10 oz in a week, which is great. He's consistently been taking about 12-14 oz a day, but I can tell that my milk supply has noticeably increased over the last day or so, and he's only had 4 oz so far today. We'll keep doing what we're doing for another week and let him regain some more weight.
Since I had to take him to the pediatrician as part of all this, I wound up being the asshole with the baby at the reproductive endocrinologist. I brought him on Monday too, but there weren't any patients around then. It wasn't crowded today, but there was another patient waiting, and he was in full-on squeal-and-laugh mode. I told her I was sorry, and she said it was OK, but I still felt like a jerk. At least I'll be leaving him at home on Wednesday, since I don't have to take him to see any doctors then.
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My mom just called and said that my records from Dr. Pro had finally gotten scanned into their EMR system, including my op notes and the pathology from the various biopsies taken during my surgery. Dr. Pro told me after the surgery that she thought that the infection had resolved, and that the damage was leftover rather than ongoing. When I spoke to her on Tuesday to ask for my records, she reiterated that viewpoint, that I had not had an active infection at the time of surgery. Guess what the pathology showed in the removed tube?
Chronic salpingitis, that's what. The inflammation wasn't just leftovers -- I forget the exact wording, but basically there was active infection. TOLD YOU SO, says I. That infection survived two rounds of clindamycin, plus the useless amoxicillin. So it's not a stretch to assume that it survived somewhere else (like, say, MY CERVIX, or that left ovary that still hurts like a bitch), and that explains why this latest round of clindamycin didn't fix matters either. I presumably had antibiotics during my surgery (none were hung while I was awake, but I assume I got them), but obviously, they weren't enough or the right kind, or it wouldn't have come back.
Now we wait and see if that changes Dr. Boss's treatment plan.
He wants to give this a few days to see which direction it's headed and see me back on Wednesday. At that time, we'll consider doing an endometrial biopsy if I'm still feeling gross. Hysteroscopy's also potentially on the menu, but he's wary of potentially spreading around infection. He doesn't want to do antibiotics right now, because I've had so many rounds that he is worried about antibiotic complications popping up. That seems a fair point to me, especially given how wonderfully they've worked so far. In the meantime, he also gave me some pain medicine, so the waiting will be more comfortable.
As for Andrew, he is doing much better. He was up to 12 lbs 2 oz at his weight check today, for a gain of 10 oz in a week, which is great. He's consistently been taking about 12-14 oz a day, but I can tell that my milk supply has noticeably increased over the last day or so, and he's only had 4 oz so far today. We'll keep doing what we're doing for another week and let him regain some more weight.
Since I had to take him to the pediatrician as part of all this, I wound up being the asshole with the baby at the reproductive endocrinologist. I brought him on Monday too, but there weren't any patients around then. It wasn't crowded today, but there was another patient waiting, and he was in full-on squeal-and-laugh mode. I told her I was sorry, and she said it was OK, but I still felt like a jerk. At least I'll be leaving him at home on Wednesday, since I don't have to take him to see any doctors then.
--------------------------------------------------------------------
My mom just called and said that my records from Dr. Pro had finally gotten scanned into their EMR system, including my op notes and the pathology from the various biopsies taken during my surgery. Dr. Pro told me after the surgery that she thought that the infection had resolved, and that the damage was leftover rather than ongoing. When I spoke to her on Tuesday to ask for my records, she reiterated that viewpoint, that I had not had an active infection at the time of surgery. Guess what the pathology showed in the removed tube?
Chronic salpingitis, that's what. The inflammation wasn't just leftovers -- I forget the exact wording, but basically there was active infection. TOLD YOU SO, says I. That infection survived two rounds of clindamycin, plus the useless amoxicillin. So it's not a stretch to assume that it survived somewhere else (like, say, MY CERVIX, or that left ovary that still hurts like a bitch), and that explains why this latest round of clindamycin didn't fix matters either. I presumably had antibiotics during my surgery (none were hung while I was awake, but I assume I got them), but obviously, they weren't enough or the right kind, or it wouldn't have come back.
Now we wait and see if that changes Dr. Boss's treatment plan.
Monday, January 05, 2009
More doctors
That's pretty much what today was about, or at least what it was supposed to be about.
I met with the lactation consultant (also a family-practice MD) today, and she was pretty encouraging that I'll be able to work back to full breastfeeding. She put me on Reglan (which I used for hyperemesis with no side effects), which she is hopeful will bring me close to adequate supply levels. Judging by the amount of supplemental formula he's consuming, I'm producing about half of what he needs for maintenance. We've got some weight regain to do, but it's not a dire situation just yet.
Supplementing is a pain, and I don't want to fight that battle forever, but it's worth it in the short term to get my nursing relationship back. I like nursing, and I find it far more convenient for my lifestyle. Being a SAHM, I'm feeding the baby all day anyway, so I might as well do it in a way that doesn't involve preparing bottles. (Well, Katherine is "helping" me feed him, which is really pretty cute but not much actual help.)
Dr. LC agrees with everyone else that the problem is almost certainly rooted in all the physical issues, and that solving those will go a long way to improve the situation too. She also feels that the infection situation has been mishandled, and said that she had been taught to do hospitalization with three different kinds of IV antibiotics for post-cesarean infections. I mean, I knew that, but it was nice to hear someone say it.
After leaving Dr. LC's office, I went to go see my old RE Dr. Boss to get a second opinion about the infection crap. Since my mom is his nurse, it's easy to get an appointment on short notice, and I don't have to explain my entire history to a new doctor. I did not actually get to see him today, as he got caught in surgery while I was having yet another ultrasound, but he's going to review the ultrasound images and call me tomorrow, and possibly have me come back in.
Still, the ultrasound showed some interesting things, even to my untrained eye. I have a 16-mm cyst on my left ovary, which was present on Friday's ultrasound and does not appear to have grown appreciably from the picture I saw then. Something appears to be coating that ovary as well, according to the sonographer, who pointed out a funny bright-white border. I have free fluid in the cul-de-sac, not a lot but some, and I have fluid in my uterine cavity as well. I didn't ask what thickness the lining was, but it looked to be scanty. She said my cervix looked thickened and enlarged, and that she thought she might see something in it. From what I can Google, some of those findings are indicative of infection -- and this is after almost four days of clindamycin, too.
I've got to see what Dr. Boss says tomorrow, and then see what someone wants to do. The political situation is a little unusual in that he was a professor and attending for Dr. Pro's med school and residency, so he may suggest I go back to her and tell her this is what he recommends for treatment. Alternately, he may just decide to treat me himself. I don't much care, as long as someone does something other than give me more damned clindamycin.
I met with the lactation consultant (also a family-practice MD) today, and she was pretty encouraging that I'll be able to work back to full breastfeeding. She put me on Reglan (which I used for hyperemesis with no side effects), which she is hopeful will bring me close to adequate supply levels. Judging by the amount of supplemental formula he's consuming, I'm producing about half of what he needs for maintenance. We've got some weight regain to do, but it's not a dire situation just yet.
Supplementing is a pain, and I don't want to fight that battle forever, but it's worth it in the short term to get my nursing relationship back. I like nursing, and I find it far more convenient for my lifestyle. Being a SAHM, I'm feeding the baby all day anyway, so I might as well do it in a way that doesn't involve preparing bottles. (Well, Katherine is "helping" me feed him, which is really pretty cute but not much actual help.)
Dr. LC agrees with everyone else that the problem is almost certainly rooted in all the physical issues, and that solving those will go a long way to improve the situation too. She also feels that the infection situation has been mishandled, and said that she had been taught to do hospitalization with three different kinds of IV antibiotics for post-cesarean infections. I mean, I knew that, but it was nice to hear someone say it.
After leaving Dr. LC's office, I went to go see my old RE Dr. Boss to get a second opinion about the infection crap. Since my mom is his nurse, it's easy to get an appointment on short notice, and I don't have to explain my entire history to a new doctor. I did not actually get to see him today, as he got caught in surgery while I was having yet another ultrasound, but he's going to review the ultrasound images and call me tomorrow, and possibly have me come back in.
Still, the ultrasound showed some interesting things, even to my untrained eye. I have a 16-mm cyst on my left ovary, which was present on Friday's ultrasound and does not appear to have grown appreciably from the picture I saw then. Something appears to be coating that ovary as well, according to the sonographer, who pointed out a funny bright-white border. I have free fluid in the cul-de-sac, not a lot but some, and I have fluid in my uterine cavity as well. I didn't ask what thickness the lining was, but it looked to be scanty. She said my cervix looked thickened and enlarged, and that she thought she might see something in it. From what I can Google, some of those findings are indicative of infection -- and this is after almost four days of clindamycin, too.
I've got to see what Dr. Boss says tomorrow, and then see what someone wants to do. The political situation is a little unusual in that he was a professor and attending for Dr. Pro's med school and residency, so he may suggest I go back to her and tell her this is what he recommends for treatment. Alternately, he may just decide to treat me himself. I don't much care, as long as someone does something other than give me more damned clindamycin.
Friday, January 02, 2009
My dog died, and the rest of the week hasn't been much better
Short version of today because I'm on Percocet and want a nap:
-- Andrew weighed 11 lb 8 oz at the pediatrician
-- No other reason for concern, so we're calling it a feeding/milk supply issue until proven otherwise
-- I'm to supplement with formula after nursing for now, and will be seeing the LC on Monday to talk about fixing the milk supply problem
-- This morning, he screamed and bit me and spit the nipple out, and I could barely express any milk at all
-- That's first time I've actually seen him be dissatisfied with nursing
-- I'm thinking maybe this is a recent development that's just going downhill fast
-- He chugged 3 oz of formula like a frat boy after a keg party, and has been sound asleep for two hours now
-- I fed my other two children Pop-Tarts in the car for breakfast, making me the official Winner Mother of the Day
-- Ultrasound showed a large cyst (follicular, maybe)? on one ovary
-- Could not get a straight answer about uterine lining. First she said it was "proliferative", i.e. preovulatory, then that it was hard to see because there was "fluid" in there
-- Cervix was blocked with thick mucus, preventing said fluid from coming out
-- This is exactly what happened with my postpartum bleeding, and why my uterus was full of blood
-- How that squares with 2+ weeks of daily heavy bleeding, I'm not sure
-- Removal of said mucus was AWFUL, screaming-thrashing-cursing awful
-- WBC was 5, not indicative of infection, but it wasn't elevated when I had a known infection, either
-- Hematocrit was 35, down from 38 pre-op, so yeah, still anemic despite iron/prenatals
-- Got prescription for more clindamycin. If I'm not better by Monday, we'll reevaluate
-- Reevaluation may include another D&C
-- No pathology results from surgery, still
Did I mention that we lost my oldest dog on Tuesday, in the middle of all this? She was old and quite ill with congestive heart failure, so we knew it was coming. She was getting close to the point where we'd have to put her down, and I'm glad she went peacefully in her sleep before it got too painful, but I still miss her. This week really has been a steaming pile of shit on toast.
-- Andrew weighed 11 lb 8 oz at the pediatrician
-- No other reason for concern, so we're calling it a feeding/milk supply issue until proven otherwise
-- I'm to supplement with formula after nursing for now, and will be seeing the LC on Monday to talk about fixing the milk supply problem
-- This morning, he screamed and bit me and spit the nipple out, and I could barely express any milk at all
-- That's first time I've actually seen him be dissatisfied with nursing
-- I'm thinking maybe this is a recent development that's just going downhill fast
-- He chugged 3 oz of formula like a frat boy after a keg party, and has been sound asleep for two hours now
-- I fed my other two children Pop-Tarts in the car for breakfast, making me the official Winner Mother of the Day
-- Ultrasound showed a large cyst (follicular, maybe)? on one ovary
-- Could not get a straight answer about uterine lining. First she said it was "proliferative", i.e. preovulatory, then that it was hard to see because there was "fluid" in there
-- Cervix was blocked with thick mucus, preventing said fluid from coming out
-- This is exactly what happened with my postpartum bleeding, and why my uterus was full of blood
-- How that squares with 2+ weeks of daily heavy bleeding, I'm not sure
-- Removal of said mucus was AWFUL, screaming-thrashing-cursing awful
-- WBC was 5, not indicative of infection, but it wasn't elevated when I had a known infection, either
-- Hematocrit was 35, down from 38 pre-op, so yeah, still anemic despite iron/prenatals
-- Got prescription for more clindamycin. If I'm not better by Monday, we'll reevaluate
-- Reevaluation may include another D&C
-- No pathology results from surgery, still
Did I mention that we lost my oldest dog on Tuesday, in the middle of all this? She was old and quite ill with congestive heart failure, so we knew it was coming. She was getting close to the point where we'd have to put her down, and I'm glad she went peacefully in her sleep before it got too painful, but I still miss her. This week really has been a steaming pile of shit on toast.
Thursday, January 01, 2009
We interrupt the scheduled whine
I'm most of the way through a long post about how the infection is back (short version: still bleeding, increasing pain, now running low-grade fever, seeing useless doctor on Friday), but I found something else to worry about instead.
Andrew hasn't pooped since Sunday, and I've noticed he hasn't been having a lot of wet diapers either the last few days. I've also been thinking he's looking a little thin the last couple weeks -- his 3-6 month size Christmas outfit was enormous on him. This morning, it finally occurred to me to stand on the scale with him to see how much he weighs.
Eleven pounds. My three-and-a-half-month-old weighs eleven pounds.
He weighed twelve pounds at his two-month checkup, an appropriate weight gain from the 8 lb 4 oz he weighed at two weeks. So not only has he failed to gain any weight in two months, he's lost some. I know scales vary, so we might be off by a pound or so, but it's quite clear that something is amiss.
He's nursing about every two hours during the day, from waking up at 7 to going to bed at 9, but the girls did that too when they started sleeping through the night and had to cram 6-8 feedings into the day. He nurses 6-7 times total, for five to ten minutes, and usually seems content when he's done, although occasionally I have to nurse him on the other side (I usually do one side and swap at each feeding). I nurse him on demand, he latches well, gulps milk, and nurses until he's done. I exclusively nursed twins for a year, so it's not like I have intrinsically low supply or don't understand the mechanics.
I'm suspicious it's a milk supply problem caused by the surgery and the returning infection and the bleeding. I've got to be anemic at this point -- I had barely made it up to the bottom of the normal range pre-surgery, and I've been bleeding for two weeks now. I've also been on naproxen for a while, and given the amount of bruising I've got going on, I suspect my liver is unhappy too. Put that together with the infection and the fever, and it can't be good. I don't *feel* good, so it's really not all that shocking, I suppose.
I'm seeing the doctor tomorrow, and I know she'll do a CBC to check for infection, so I'll see what that has to say. I'm planning on taking Andrew to his pediatrician for a weight check immediately afterward, and after that, I may call the breastfeeding clinic to get the opinion of the LC there.
When midnight struck last night, I told my husband that I hope 2009 is a healthier year for us all, but this is not a promising start.
Andrew hasn't pooped since Sunday, and I've noticed he hasn't been having a lot of wet diapers either the last few days. I've also been thinking he's looking a little thin the last couple weeks -- his 3-6 month size Christmas outfit was enormous on him. This morning, it finally occurred to me to stand on the scale with him to see how much he weighs.
Eleven pounds. My three-and-a-half-month-old weighs eleven pounds.
He weighed twelve pounds at his two-month checkup, an appropriate weight gain from the 8 lb 4 oz he weighed at two weeks. So not only has he failed to gain any weight in two months, he's lost some. I know scales vary, so we might be off by a pound or so, but it's quite clear that something is amiss.
He's nursing about every two hours during the day, from waking up at 7 to going to bed at 9, but the girls did that too when they started sleeping through the night and had to cram 6-8 feedings into the day. He nurses 6-7 times total, for five to ten minutes, and usually seems content when he's done, although occasionally I have to nurse him on the other side (I usually do one side and swap at each feeding). I nurse him on demand, he latches well, gulps milk, and nurses until he's done. I exclusively nursed twins for a year, so it's not like I have intrinsically low supply or don't understand the mechanics.
I'm suspicious it's a milk supply problem caused by the surgery and the returning infection and the bleeding. I've got to be anemic at this point -- I had barely made it up to the bottom of the normal range pre-surgery, and I've been bleeding for two weeks now. I've also been on naproxen for a while, and given the amount of bruising I've got going on, I suspect my liver is unhappy too. Put that together with the infection and the fever, and it can't be good. I don't *feel* good, so it's really not all that shocking, I suppose.
I'm seeing the doctor tomorrow, and I know she'll do a CBC to check for infection, so I'll see what that has to say. I'm planning on taking Andrew to his pediatrician for a weight check immediately afterward, and after that, I may call the breastfeeding clinic to get the opinion of the LC there.
When midnight struck last night, I told my husband that I hope 2009 is a healthier year for us all, but this is not a promising start.
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