Friday, August 24, 2012

so about that surgery...

[This is Part ??? (not really keeping track of numbers) in my ongoing series of Over-Sharing About Endometriosis/Laparoscopic Surgery. This is possibly of interest to no one except myself, but since I have found other girls' open and thorough blogs to be extremely helpful in my own journey, I do the same in hopes that mine might be found the same. If you're not interested in the status of my lady parts, I won't be offended if you peace out now!]

 So as I mentioned yesterday, I had my post-op follow up appointment with Dr. S on Wednesday afternoon. Immediately following my appointment, Matt had an appointment with Dr. W, the MFI specialist. Depending on how long-winded I get describing MY appointment (because it's all about me, right?!), I may or may not get around to describing Matt's appointment today. It wasn't nearly as interesting, anyway.

 Maybe I should back up and describe my recovery process up until the present, especially since I've been a lazy blogger the last two weeks. Again-- sorry if this is boring, but in addition to being useful to other girls facing an endo lap, there's a good chance (FORESHADOWING) that this won't be my last surgery...so I may find this useful to know in the future. Le sigh.

Surgery was August 3. I was in pretty horrible pain/narcotic painkillers around the clock for about three days. After that, I weaned off the painkillers and onto a regular schedule of Tylenol until maybe Aug. 8. Strangely, I felt quite good on the Monday after surgery (Aug. 6), only to feel WAY WORSE for the rest of the week. From the day of surgery until the following Friday (a full week post-surgery), I basically did not leave the bed/couch other than to go to the bathroom. Pain was fine as long as I wasn't moving around-- shifting positions (from sitting to standing, from sitting to laying down) was the worst part, so once I got settled doing something, I would stay that way for a really long time. After mid-week, I only took Tylenol if the pain got really unbearable, which wasn't often. I was usually fairly uncomfortable, but not like...excruciating or anything. However, I had NO energy, and getting up and attempting to do anything would immediately make me feel sick. So I stayed on the couch. Sleep started getting weird towards the end of the week. I would stay up late (watching Olympics) and then take a long time to fall asleep. Once I fell asleep I was fine, but it may have been 1 or 2 am. It wasn't a problem, though, because I wasn't working, so I could just sleep til noon every day. I didn't nap during the day, but I still got my schedule all off and couldn't fall asleep until really late. 

During the next weekend, I made a few brief trips out with Matt (still wasn't driving). I went to get my nails done, went to church-- a few things like that, and it was exhausting but a nice change of scenery. I went back to work for a half-day of office work (no kids) on Tuesday the 18th. Wednesday and Thursday I worked full days in the office, and Friday I went to my school for the first time (full day). On all of those days, I wasn't in much pain unless I was walking around too much or hunched over at a desk or something for too long. I was SUPER tired after work and would pass out on the couch with a book (NO NAPS) the moment I got home. My sleep was terrible-- I couldn't fall asleep or stay asleep for long most nights. That carried through the weekend, and by then the exhaustion had basically ruined my life. I spent the entire days being stressed out about not-sleeping, plus being exhausted, plus worrying that I might not be able to sleep the NEXT night...plus being exhausted just makes EVERYTHING in life seem worse and hopeless. So it's not a fun place to be. After getting less than 2 hours of sleep Sunday night/Monday morning, I gave up hope of being able to get back to normal sleep without chemical assistance. Since then I've been taking Benadryl at night, which has helped a lot. As far as pain for the last week, there hasn't been much. My incisions (4) hurt if you press on them (duh), and they itch sometimes, but other than that my stomach feels mostly fine. Some occasional aching and bloating, and my bellybutton incision has been a little weird, but all in all...not bad. I'm still taking it pretty easy at work (hiding in my office when I get tired or sore), but other than the tiredness, I'm not having a problem making it through the work day. 

OK also, I started my period on the Friday after surgery-- one week later (and a week and a half early). They had told me that the surgery would make my period completely unpredictable, because the surgery would mess around with the things controlling my hormones and throw my cycle out of whack. They said the only thing predictable about my next period would be that it would be completely unpredictable-- in timing, in length, in...everything. And they were right. It was totally freaky and that's all I'll say about that. 

SO! That brings us to what I was actually planning to talk about-- my post-op follow up appointment. Dr. S had me bring in the pictures he'd printed during surgery (remember when I showed you one of those?) and he spent a long time going through them, describing what they were seeing, what they did, what everything meant. It was very informative and slightly depressing. Basically, I had a lot more endo than he had expected or hoped for. He said I have solid Stage 3 endo (they classify endo in 4 stages, with Stage 4 being the worst/most extreme). He said there was a lot of inflammation and irritation around my ovaries, uterus, and tubes, along with the adhesions that they'd found. My "big daddy" cyst on the left ovary ended up being a corpus luteum cyst, and as though that weren't enough trauma for my poor ovary, there were additional endometriomas growing on the OTHER side of the poor guy. I finally got Dr. S to give me a visual image that I could relate to to understand the size of that cyst: a lemon. It was roughly the size and shape of a lemon. Yikes! I had another, smaller corpus luteum cyst on my other ovary, as well as endometriosis. The left ovary, though, is bearing the brunt of the damage. The Fallopian tube on that side is pretty mangled where it connects to the ovary as a result of the cyst damaging it. The rest of my left tube is in okay shape, but the part where it connects to the ovary is in bad shape. So although he removed the cysts and endometriomas from that ovary, the whole left side is pretty beat up. They're still functioning, but...he doesn't have a lot of hope that that'll be the team that gets us a win, if you know what I mean. So...sad face. BUT, the right side is in much better shape, the tube looks great and had no inflammation or endometriosis, and the ovary is still in great shape, despite the small cysts/endo. So he feels really good about the right side.

Alright. Then we spent some time talking about my itty bitty skinny ol' cervix. I mean-- of all the things to be TOO SKINNY...why not my hips? My thighs? But no, it's my cervix. Whatev. So I mentioned this back in my first post-surgery blog, but he found my cervix to be waaaay too narrow for its own good. In doctor lingo, we call this "uterine cervical stenosis." Yeah, just tuck that tidbit away. So my cervix is super super super way too skinny, and so here's what that means: when you're on your period, your body sheds the uterine lining (including blood and endometrial tissue) that built up and lined your cavity after you ovulated. All of that stuff comes down through the cervix and...ya know, exits the premises. Retrograde menstruation is what happens when some of that stuff doesn't make it down, and instead backs up into the Fallopian tubes and spills out into your uterine cavity. That leaves your immune system to attack and carry off all the tissue and blood that gets where it isn't supposed to be. Dr. S says that all women have some degree of retrograde menstruation-- it's normal, and most women have maybe as much as 5% of their 'stuff' go the wrong way. It's not a lot, so it's not a big deal-- your immune system takes care of cleaning everything up. The problem comes when you have way too MUCH retrograde, which dumps way too much endometrial tissue back where it shouldn't be, and then your immune system is overwhelmed and unable to fight it all. That is what he suspects my problem is. He estimates that because my cervix is so narrow, 55-60% of my 'stuff' is unable to go through it and instead goes backwards and floods my cavity. That leaves all that endometrial tissue just sitting there, and my immune system can't deal with all of it, and so it's causing problems (obviously) and taking root and growing where it shouldn't be. And because there's such a constant (monthly) influx of new tissue and blood, my immune system is fighting a losing battle. The constant fight and stress of that tissue/blood being where it shouldn't be is what causes all of the inflammation and adhesions throughout my cavity. The GOOD news here is that he was able to slightly widen my cervix with the D&C (although it is still quite narrow). This should help some with the retrograde menstruation, although it's only a temporary fix...slowly, the cervix will un-dilate and go back to it's normal size...but for awhile, it should at least help. So that could slow the re-growth of endo. (Semi-relatedly, I asked if this cervical skinniness would potentially make it more difficult for me to have a vaginal birth someday-- would I be able to dilate enough? He said he wasn't really sure, since pregnancy hormones do an awful lot of weird things to make your cervix do things it doesn't normally do, but it would definitely be a possibility. Just something to think about.)

Let's see. So other than that we just looked at all the pictures and talked about what this means for now. Basically, with my endo being as advanced and aggressive as it apparently is, it's just a matter of time until it's back. Right now-- being nice and clean-- would be my best shot at pregnancy. He estimates my chances of getting 'naturally' pregnant right now (NOT TAKING INTO ACCOUNT OUR MFI ISSUES!!!!) to be 2-5% on any given cycle. Doing another cycle of Clomid/IUI would roughly double my chances, putting me at about a 10% chance. Doing IVF would put my odds at around 60-65%. So...not any great odds there, but no worse than it was, I suppose. The more time passes, the more time I give the endo to grow/mangle important organs like ovaries and tubes. I can always have surgery again, but as we've seen with my left ovary and tube-- even removing the cysts/endo can't restore the damage to the organ.  Poor old mangled things. :( The only way to slow the growth of the endo would be to go back on birth control (which basically stops your whole cycle, meaning you're not building up a lining that needs to be shed every month, which means it won't be flooding back where it's not supposed to be going) or Lupron. Oh, and maybe abiding by the Endo Diet could help...but I'm just not sure I'm ready for that level of misery in my life.

So there's not really any big "next steps" for me, other than finishing recovering (another month til I can work out lightly, 2 more weeks til I can submerge in water...I think those were the only notable milestones) and waiting. And hoping. And praying. And having frequent 'monitoring' ultrasounds, and waiting for the pain to come back. Oh, and he prescribed me something to help me sleep...so maybe I will regain my sanity sometime soon.

On the plus side, whereas I used to have fairly bothersome pain for about a week around ovulation (requiring heating pads and Tylenol), this week I was only in pain for about 12 hours! So that's a pretty awesome improvement.

Anyway. Well, this is so extremely long that only the most dedicated/nosy people are probably even reading anymore. I'll wait to talk about Matt's appointment (which wasn't terribly exciting, anyway) until later. I know. Get pumped.

In case you haven't heard quite enough about endo already today, here's an interesting article my RE practice posted a link to on Facebook: What It Really Means to Have Endometriosis. (Note: I have no personal affiliation with Dr. Cook or Vital Health Institute. They just linked to this article.)

Have a happy Friday!

 

12 comments:

  1. Consider me dedicated, because I read the whole thing! I'm sorry to hear that the news wasn't necessarily as good as you hoped, but I'm glad that you have answers! I really like this doc of yours and think you're in good hands. I have always loved the saying that "God is not limited by our circumstances," and that is what I am choosing to believe for you right now... not limited by your endometriosis, your skinny cervix, Matt's MFI stuff, or anything else! Love you!

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  2. I'm not sure if I'm just nosy or dedicated, but this was really informative and I'm still praying for you guys. Thank you for sharing so unselfishly because this is a wealth of information for the next girl. Sometimes it's so hard to find similar experiences to read and you've done a wonderful job documenting your journey. Hugs!

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  3. Also a dedicated reader! Your doctor sounds amazing...it's so reassuring to find someone willing to take the time to sit with you and explain exactly what's going on. I'm looking forward to Matt's boring visit!!!

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  4. I'm glad that the Doctor was so informative because I feel like answers and information - whatever they may be - is key! Which is also why I'm glad you share all of these things with all your readers, too. :) Happy Friday to you, too!

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  5. ughh.

    Damn you endometriosis! Damn you to hell from whence you came!

    That was me cursing your endometriosis. You know...like when Jesus cursed the olive tree for not producing and it withered up and died. Well, not quite the same. But I would like it to have the same effect.

    and I'll pray you start sleeping again. Not sleeping is one thing I can say I truly relate to. It is not fun at all. Hopefully the drugs will get you kick started back to normal too.

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  6. I'm so sorry to hear the extent of the damage done. I'm praying for you, friend. Praying that it doesn't grow back quickly/at all, that the right ovary/tube stay in tip top shape, that your pain is on the way out and will not return. I wish I knew why God was allowing such suffering, but we have to choose to trust Him or else we admit He's not in control. Ugh. Praising in the storm is always the hardest part, but there is usually a magnificent rainbow of promise at the end. Love you!
    P.S. The endo diet looks very similar to what I'm doing, so if you ever needed support - I'm here!

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  7. Praying!!! (And yes, I read the whole thing.) Things ALWAYS look better with some sleep. :)

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  8. Nosy and dedicated! Believing that God can take 10% and make it 100% for you and me both!

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  9. Dedicated reader here :) Sorry I am a few days late - I was without a computer for a while and am trying to catch up! I am glad you got answers, but sorry that some of the new info is frustrating. I am also glad that you have found such a great doctor who really knows his stuff and really seems to care about you! I know the endo diet seems awful and torturous, but I found it empowering. I feel like it is my way of saying, "Hey, endo, you will NOT win!" If it is right for you, you'll know when you are ready to try it (or even just parts of it).

    The retrograde menstruation info is so interesting. It makes total sense as to why I was becoming allergic to, like, everything, before I started changing my diet...I am sure my immune system was just on overload trying to keep up with my endo!

    I'll see if my huge yoga book has any poses for loosening one's cervix!

    I know you are a super researcher like me, so maybe you have read about this, but I am afraid of ever trying Clomid since I have endo. I have read that the hormones it plays on can make endo worse much faster (but I only read that online so I am not sure how true it is!). Although, my doctor seemed to think it might be worth the risk since it would increase the chance of pregnancy in a shorter amount of time.

    I hope that your sleep patterns get back on track soon. I have had a countable number of insomnia filled nights and that was enough to show me how terrible it is! On nights that I cannot fall asleep I almost feel like I am going insane. And then, like you, I get very anxious about if the same thing will happen again the next night. Vicious cycle and it affects every aspect of life!

    Praying that: You can get back to normal sleeping. Your mind and body recover from the stress of surgery. Your endo won't progress as quickly as the doctors say and that all of these hardships will be behind you and Matt soon. Thinking of you and praying for you, Erika!

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  10. Nice Posting! Keep it up!!Main Problems Faced by Women Trying to Conceive! Are you ovulating? It is necessary to know theRIGHT Day, RIGHT Time and RIGHT Way for conception…
    Now it has become very easy to identify the right Day, Time, and WAY. Now you can plan your pregnancy and you can choose your date and time of pregnancy as you like with Ovulation Kit

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  11. Hey Erika. I did read your entire post, and can relate to a lot of it. I'm sorry for your struggle.I wanted to share with you a fact that gave me hope when we were trying to conceive. Healthy couples in their 20's, with no fertility problems, only have a 15-25% chance of conceiving each month. So really, your 10% is pretty decent! Only 5% less than some fertile peeps. Keep the hope alive! xx-Thea

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  12. I'm not sure if I'm nosy or dedicated but I also read the whole thing. Twice. I wanted to post a comment when I first read it but couldn't for some reason -- one of my many distractions, possibly?! -- and then had to re-read it to remember what I wanted to say.

    And what I want to say is this -- it sounds like Dr S is an awesome person to have on your side, I agree about the skinny cervix (why can't it be something else?!), and I am still praying. I'm glad you're getting sleep (and hopefully more now than when you first wrote this post) and that the ovulation time wasn't as painful for as long. Thinking of you...

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