How much more do I really need to say about this? For myself, a lot. For the average reader - probably already too much. But since this blog is for me, guess who wins. :)
FYI, this really isn't important and if you don't want to read any or all of it, I don't blame you.. This is actually more, like I said, a reminder for myself in the future as well as the easiest way for me to articulate and process what I really think. Seems like the buildup makes it troubling or urgent or something like that and it's really none of the above. T
Last week I said endometriosis sucks. Was that a news flash for anyone? I think not.
I talked to my cousin (an ob/gyn), or rather, we had a series of emails we exchanged, and she told me that endo usually does end up worse for the person after a pregnancy. It's funny, pregnancy gives relief. But that relief usually turns into endo coming back better than ever. Not sure how. I mean, if endo is the uterine lining getting into other places in the abdominal cavity because of (normally) retro-grade flow during your period, well, how the hell can it do that when you're friggin pregnant?
See, here's why this is helpful to me. Typing that out, the answer occurred to me. When you are pregnant, instead of the uterine lining sloughing off 14 days after you've ovulated, the uterine lining continues to grow to create a warm cuddly environment for the fetus. So all those endo spots I used to have were allowed to grow a gazillion times more because of all that extra progesterone my body made/used for such a long time.
Ok. So. More pregnancies will therefore mean even worse endo, my cousin tells me.
Damn.
Not all women with endo have retro-grade flow, by the way. Wanna know what retro-grade flow is? Instead of the uterine lining that's being sloughed off and discarded via menses traveling out of the cervix and then down through the vagina as is normal, in a woman like me, some (or all) of the menses travels out through the fallopian tubes making it's way into the pelvic/abdominal cavity. Some can even flow into the ovaries.
Now the endo I've always had has grown to a size that is remarkable because it was allowed to grow so much during pregnancy.
Whooppee!
I have two solutions.
- Take hormones, either through BC pills or otherwise, to stop the endo from growing. All the various hormones I can take will shut down baby-making, albeit temporarily.
- Have a partial or full hysterectomy. For mild cases, partial hysterectomies are usually sufficient. And keeping the ovaries allows the body to still manufacture hormones as needed. A full hysterectomy is for moderate to severe cases and HRT may be needed afterwards. Either option, of course, shuts down baby making, permanently.
Hmmm. I aint done having kids. Neither is Husby.
Damn.
What's the alternative then? Pain control.
Ugh.
Well, of course, now we get to aggravate this further by saying we don't know when we can get Lori pregnant again. Pregnancy gives temporary relief. Yeah, so it'll probably come back again worse afterwards. It doesn't come back at all until Lori gets her period back and the typical estrogen/progesterone cycle gets back to full force. For the entire time I was breast-feeding I did not get my period at all. But I was only able to breastfeed/pump for about four months because, as is par for the course, for me, things didn't work right or well and breastfeeding proved to be causing other problems.
What I know now - those other problems are something I'd rather deal with over this. So I can push through longer next time if that will help.
We don't know if there will be one more pregnancy or two.
We are reading now that Husby "may" have to take radioactive iodine to ensure all of the thyroid "cancer" cells are killed off. There's a whole 'nother blog - whether this is really cancer or not. For now I'll say it seems there is debate in the medical field about whether this is truly cancer or whether it should be called cancer. In all other cancers, the tumors are made up of cancer cells, something we all have, cancer cells, that is. But in a "healthy" person, our immune system knows to not let those cancer cells run amuck. In a tumor, a malignant one, to be precise, those cells multiply and regenerate and mutate causing problems. Well, in thyroid "cancer", these aren't cancer cells, these are thyroid cells. They are thyroid cells that refuse to die and they are clustered together in a nodule that continues to grow. It's why this is "so beatable". And to make it incredibly beatable, the nicest thing about it is thyroid cells, as a matter of course, want iodine to create T3 and T4. Thyroid cells are the only cells in the body that want thyroid, although I guess some salivary glands also want iodine, but it's not "needed" for salivary glands. Because iodine is so specific to the thyroid, they can use radioactive iodine to go after any remaining thyroid cells that might be around after the thyroid is removed. The various chemos do not know the difference between cancer cells and healthy cells, which is why chemo makes people sick. Anywho...radioactive iodine could make Husby infertile. Doesn't usually cause problems for women, but it's not uncommon for it to cause problems for men.
Well. Damn. If we want two more pregnancies, which is going to make my endo that much worse, they say, then we'd better get busy.
We are thinking and hoping that we can get me pregnant before anything gets started with Husby. That gives me 9 months of relief. And morning sickness is something I'd gladly take over this pain. Morning sickness sucks and all - but it didn't shut me down like this pain does.
We can bank some sperm in case Husby does wind up with issues and we decide we want that third pregnancy.
But the endo. The endo getting worse. The endo even staying the same. That just sucks.
My endo is everywhere. It's not just outside or even inside the ovaries. It's on my colon. Endo, as a matter of course, creates adhesions. So the endo on my colon has adhesions. Adhesions cause organs to stick together. The colon is an organ that likes to move around depending on what it's up to. But the colon sticking together makes it less likely to move which means pain as things move around in there. I have endo up by my stomach, on my lungs, by my liver. It is everywhere. All these organs it's attached to like to move and adjust and settle and shuffle and I have endo and it's associated adhesions trying to lock everything into place. And the endo keeps growing.
But yeah...this aint cancer. I have a fix at the end of the baby-making. Of course, that fix fails for as much as 40% of women, they say. It seems shutting down progesterone production is the fix. But what happens when you've had a hysterectomy and the endo is still causing problems. Well, apparently endo cells can mimic the cells of the organs the endo has attached itself to. So I've got to pray that my doc gets every last spot of endo zapped with the laser. I'm gonna guess if he doesn't, and I'll know by the pain that still exists, that means more surgery. Yay.
I'm so all over the place. I'm not learning much, either.
I think one of the things I now know is that my problem was never my appendix, it was endo. My problem was never my gallbladder, it was endo. When my problem arose the third time I knew without a doubt that whatever it is that's going on, it's directly attached to ovulating. Given that ovulation is the point in time that you switch from estrogen dominance to progesterone dominance, that makes sense, since progesterone is what causes the uterine lining to grow. The uterine lining doesn't care whether it's inside the uterus or whether it's on the pancreas. My appendix problem "started" exactly when I ovulated. The first ovulation since having the twins.
That surgery was exploratory. So it was justifiable and warranted. They removed the appendix to be pro-active. Oddly, the pathology peeps said the appendix was bad. My surgeon, on the other hand, swears it wasn't. I believe him, now. They removed the appendix but they also cleaned up adhesions and endo. And that was how the endo was diagnosed. Endo does not typically show up on imaging, ultrasound, MRI, CT, etc. Doesn't show. Typically, they need to go in to see it. And most women don't have it that bad that exploratory surgery is needed.
So then, a month later, new pain. It was pinned down to the gallbladder. I worked exclusively with the general surgeon who removed my appendix. I had no stones on a CT and nothing questionable on ultrasound. He ordered a HIDA scan which showed my gallbladder to be over-active. The pathology peeps, the same ones who said my healthy appearing appendix was diseased, then said I had stones, or rather microcrystals. Would microcrystals ever have caused a problem? Who knows. But the pain I was complaining of that caused my surgeon to order the HIDA scan is still there. I now think I should have been working with my ob/gyn, too.
Why? Because endo LOVES scar tissue. So having another surgery gave the endo more fuel.
A month later, new pain again. This time, I did take it to my ob/gyn. He said "hurry up and get pregnant". Is it pancreatitis, this time, I wondered? He said who cares if it is. More surgery is going to make it worse, surgery isn't the answer for pancreatitis, pain control is, so here's some pain control for the endo. In the meantime, lets see a GI to make sure he agrees. But my ob/gyn asked me to do something. He asked me to not tell the GI what we knew from the gyn side of things.
I like my GI. He's a smart guy and for a GI he's pretty normal. He put it all together. I didn't tell him that my pain always kicks off with ovulation and that I then stay in pain until I'm done with my period. Nope, he figured that out himself. And he said the same thing. He thinks the endo has gotten itself into nooks and crannies of the colon and intestines. And more surgery is going to make it worse.
I don't think I needed my gallbladder removed. The good news is, having it removed has not caused me any grief in the typical sense of gallbladder removal. Some people wind up with incessant diarrhea as their bodies figure out to let the liver do all the work. I haven't missed a beat there. It just hasn't relieved pain. As my FIL said, speaking of his own case, it's hard to find a surgeon that doesn't recommend surgery.
I don't think I can do anything without checking with my ob/gyn first. I asked him after the miscarriage if he could be my PCP and he said no, too busy. And that makes sense. But I swear, everything ever wrong with me always ties to my reproductive system. And he is amazing.
I struggled with him when I was pregnant. He is one of those docs that believes you can't know anything about your own body. He's seen enough pregnancies to know x, y, and z, and I'd better keep my opinions to myself and just learn from him. I struggled with that like crazy. I wanted an open conversation, not a "I'm the doctor and you're the patient" type of exchange. But by the end of the pregnancy he seemed to have found a respect for me and I'd settled in to just let things be. I went so far as trying to find a new doc during the pregnancy, at 5 months, because his antics were driving me buggy. But in the end, I settled myself down. And that respect he found for me...it ultimately did lead to open conversation.
I will never forget him walking into an appt with Husby and I somewhere around the beginning of the eight month and saying "what do you guys drink in the morning, you're always so happy?" We'd been there for 2 hours already and he was running behind. I started all my appts at the end of the pregnancy with a non-stress test and then had an ultrasound every other week. That particular day, the boys would not behave for the non-stress test, which meant I was going to have to do it again, our ultrasound tech had been double booked, and our doc was running late. Most people in that situation would have been irritated and grumpy. But there we were, still smiling and just going with the flow. His nurse, the non-stress test nurse, our ultrasound tech - a friend, and our doc were all just baffled that we were still happy.
We said things like why be not happy? We were there for a great reason, things were going well, everyone involved truly wanted to help, and at the end of the day, being irritated, stressed or grumpy wasn't going to fix it and was actually just going to make it worse.
But it was because of things like that which allowed my doc to start to have a conversation with us instead of just tell me "my way or the highway". And I'm glad I stuck it out with him. Had I switched to a new doc, when this whole problem with the endo arose back in March, someone that didn't know me so well would have said I was making shite up. So many of the docs I dealt with when I was admitted for pain did have that attitude. Other docs in my doc's practice have that attitude if I have to call on a weekend, for example, and talk to the on-call about something. My doc has been going to bat for me through this, something that wouldn't have happened if we hadn't built up the rapport we did through that pregnancy.
I think the hardest part of this endo is not knowing how much worse it's going to get before it can get better. What if it is affecting fertility now? We got pregnant so easily and quickly with the twins. If we can do that again, I can be pregnant by the end of this month. And that would be good, Husby and I think. Me pregnant and therefore relieved of pain, even if just temporarily. Me out of pain can help Husby more! Even with morning sickness and the low energy that comes with the first trimester. I'd be better for helping Husby in that state than the state I'm in.
I literally have days where if one of the boys cries in the middle of the night I cannot drag myself out of bed to go to him. I am beyond exhausted 100% of the time that I am dealing with this pain. One symptom of endo is hypothyroidism. I'm pretty sure that's me right now. I have no energy whatsoever. Do you know how devastating it is to not be able to muster up an ounce of energy to help my baby boys? Yes, Husby gets up with them and he knows in an instant whether I'm up and can handle it or whether I need him to take it. And when he needs to take it, he just does. But I hate that I have to do that to them. It's not like that every night. It directly ties into how much pain I've dealt with in the past 24 hours. In the 1.5 weeks I get pain free, it's not an issue - and to make up for what Husby gets forced on him, I try to handle it ALL in that pain-free window. But it certainly doesn't cause warm fuzzy feelings for me about my mothering abilities when I simply cannot do it.
I think the low energy of the first trimester is better than what I feel right now. When I was pregnant with the miscarriage and with the twins I swung to hyperthyroidism. It was a weird hyper - my TSH was absurdly low and that was somehow stimulating proper T3 and T4 production. But it was hyper and compared to right now - I felt good. That was first trimester. My second and third trimester with the twins I actually felt good. I never feel good, right now.
It is hard to muscle through days when you don't feel good. Everyone knows that. But when it's day after day after day, it gets harder by that much more. And when it comes to how well you can take care of your babies, it gets that much harder psychologically.
If pregnancy gives me relief, there's 9 months. If we have a girl(s) with the next pregnancy, won't do a third.
I interrupt the regularly scheduled program to bring you this...
So I want twins again. I have been saying that pretty much all along. Twin girls would be ideal, but a boy and a girl would work, too. I've also been saying that Husby is scared to death of another set of twins. Well, we talked awhile ago and he's embracing the idea, too. Literally to the point that I think if we go in for our first ultrasound and hear it's a singleton, we are both going to be disappointed. But it gets better. Not only is Husby onboard with wanting twins again...his dad told him over the weekend "Son, I really hope you guys have twins again." Husby asked why and his dad told him because we are good parents and we can handle it and he loves the idea of having that many more grandkids to spoil. How cool is that.
Back to regularly scheduled programming.
So if we don't have a girl, there'd be a third attempt.
Ok. Assume we do the same spacing. I have to be prepared for breastfeeding to not work again in spite of my claims I'll stick with it as I'll take those problems over this pain. If it unfolds identically to this time, that's 4 more months, on top of the 9 pregnant, of relief. And then 5 months of pain. Doesn't sound too bad when you're talking about months and not days, eh?
Maybe it's a good thing we can't "remember" pain.
Anyway. If we have the third pregnancy. I'd be 40. They won't do the hysterectomy at the same time as the c-section. I'd have to heal and be finished breastfeeding before they'd do that. I don't know what I think about that. Rough. And yet not. I believe the hysterectomy is going to have to be open. Given that I have endo in far off places, I believe I'm gonna get lucky. Ha. Not.
I'm 36 right now. Close to 37, but still 36. So 3+ years to go. If we do a second and third pregnancy. That could potentially mean 18 months of relief in that 3 years. Plus minimum of 4 for breastfeeding. Times 2. 8 months or relief in that 3 years. 18+8 is 26 out of 36 months. We'll say 3.5 years to have a concrete number for coping. 26 out of 42 months.
And this is assuming we get pregnant right as we say 'we want to'.
I hope fertility hasn't become an issue with this.
And how will Husby's stuff factor into this? Will he end up infertile? Will we need to draw on the frozen sample? Yes, I want a girl that much. Yes, I am that scared I will never have a girl.
Wow. To go from making twins quickly and efficiently to worrying that I am already having fertility issues and that Husby might wind up with fertility issues. Just wow.
This blog really isn't at all what I thought it was going to be. Odd. If you read it all, I'm sorry. If you read any of it, I'm sorry. It really is just for me to remember as I get further down the road. I want to look back when I'm 42 and feeling great and start to wonder what all the fuss about endo was and know that I did the right thing by having a full hysterectomy after having all our kids. I want to know that premature menopause was worth it. Today, feeling like I do, barely being able to do what I have to do let alone what I want to do, I am ready for that hysterectomy but I can't today because today I want babies more. At some point that sentence won't be true. I hope it is after we are done having babies. And I hope we have no issues having them. Endo has me that scared....
I'm sorry you're going through all this right now. I have no fantastic words of wisdom or advice...just support. ((HUGS))
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