Follow me on the crazy, hopeful, discouraging, funny, and ultimately successful (one way or another) path to parenthood while facing infertility.

Tuesday, November 29, 2016

Traumatizing My Uterus Instead of the Other Way Around

My hysteroscopy consult was interesting. I'm still bleeding, steadily although not heavily, and I am slowly going crazy as a result. A couple of weeks would have been annoying but manageable, but 5+ months? This is so not okay. 

The specialist doesn't think I have the kind of polyps that would cause bleeding, because my uterus is too small on an ultrasound and my polyps of yesteryore are more cervical-y ones, even though they were on the uterus side, and they are a different beast. 

It was recommended that I have the hysteroscopy, but that I also do an endomyometrial resection to fix my woes. Basically, that means removing my lining and the very top layer of muscle to ensure the "root" of the lining is gone. Doesn't that sound pleasant? The pictures on the website look like a fancy medical vegetable peeler is shaving off the entire inside of my uterus. Thank goodness I'll be out for it. 

If I have polyps this will remove them, if I have fibroids this will remove them, and it will prevent both from recurring. It will give me a pretty good chance of being done with my periods forever, without having to lose my whole organ. 

Not going to lie, it does sound a bit extreme and barbaric, even though the process is very high tech and designed with safety and best possible outcomes in mind, and it was invented by the same specialist who will do it next Wednesday on me. 

Positive: I won't have to mess with my hormones again. I can stop the Depo Provera, I don't have to do anything to meddle in my natural (dysfunctional) hormonal state. 

Negative: THAT'S BECAUSE I'M PEELING OFF A PART OF MY BODY. 

Positive: Most women manage to avoid hysterectomy as a result of this procedure.

Negative: While it's not removing my organ, it has the same effect because it basically renders my uterus completely nonfunctional, reproductively. 

This is the one that is causing me some angst. I am hideously infertile, and my chances of a "miracle" pregnancy are about a hundredth of a percent, between the shitty lining and one tube and flighty ovulation and low sperm values. I am on birth control to try to control my cycles (that part's failing mightily) but also to give me peace of mind, to know that I really can't get pregnant...even though that's fairly obvious after so many high-tech attempts that failed. I don't want to live in shady possibility. I don't want to pee on sticks that will always have one line. I don't want to worry about miscarrying because I have all that scarring or because my body just doesn't know how to do this procreation thing. 

But it's one thing to control that aspect and another to destroy it. I will have ZERO chance of getting pregnant, because I am effectively destroying the part of my uterus that makes that possible. 

Even though no pregnancy has been reality for a long(ish) time, the FINALITY of removing my lining is sobering. And a bit depressing. 

I am conflicted. When discussing options (limited since I don't apparently respond to hormonal stuff unless it's estrogen based, and I can't do that because of the whole prothrombin mutation thing) with the specialist, I started to tear up and basically said, "You know, I am not attached to my uterus as a reproductive entity. I just want this freaking bleeding to stop." Cue slow leak waterworks. I don't want to ruin my reproductive system, but in a way it's already ruined. 

My poor uterus. Poked and prodded and reluctant to make nice plush linings, and then scarred up and peeled piecemeal in hysteroscopy "lining refreshings" and endometrial biopsies. Never to carry a baby for more than a couple of weeks. Never to do anything but cause me pain and consternation. But does it deserve to be mutilated? Because that's what this feels like, to an extent. Safely, medically, expertly mutilated, but shaved down to the muscle nonetheless. As the specialist said, "Basically we're going to give you Asherman's on purpose." Well awesome, I'm already at least 1/3 of the way there! 

The endomyometrial resection is NOT ablation. There's no burning of the lining. It's literally removed. Another positive to that is that they send all of the material to a pathology lab, so if there's something in there that wasn't visible, it will be found. But a negative is that my uterus is also going to look like Freddy Krueger's face, all the way instead of partially

The risks are that some of the lining grows back and I get blood trapped in the nooks and crannies of the scarring, with no way to escape. The uterus tries to expel it anyway, and so you get really, really awful cramps until it's removed. That's somewhat rare though, but not super rare -- the rate's 10%. 

So I am scheduled for next week, first to go in and get this crazy thing called a laminara inserted into my cervix. It's a matchstick-sized roll of seaweed, that slowly expands overnight and dilates the cervix so that the instruments can get in there. Which is especially necessary because I've never had a vaginal (or any other kind of) birth, so my cervix is all locked up. This is the second time I've heard this in a few weeks. How awesome. Apparently this dilation is super crampy and can be more uncomfortable than recovery from the actual procedure...so you know, something to look forward to. 

The good news is that they will sedate me for that even though it only takes 3 minutes (take THAT, doctor who wouldn't get me Valium for the SSG/endometrial biopsy!), and then I'm out for the hysteroscopy/resection. Supposedly recovery is 36-48 hours, and this is on Wednesday, so I guess I'm out the rest of the week. I could do the seaweed thing after school on Tuesday, but Wednesday had to be during the day. Although I guess I could teach in the morning...Hmmm. Maybe I'll do that, since I'm teaching The Outsiders and I really enjoy it...I don't want to miss anything. Oh, wait, I'm being sedated Tuesday afternoon. That might not work out. Shoot. 

Anyway, I feel like it's a little extreme, but maybe not. I've run out of options. The specialist said if Depo wasn't working to regulate me, then the IUD that was recommended wouldn't, either. If this doesn't work then I am looking at a subtotal hysterectomy, but I'm not there yet. I did have a  daydream a few weeks ago where I was having a hysterectomy and I decided to throw a "Salute the Ute" party beforehand. Although really, what's there to salute? What has my uterus done for me, pretty much since it started menstruating? NOTHING, that's what. It was irregular and heavy with its periods, and then tamed into some submission when I took the pill for 15 years, but I still had horrid cramps that would drop me to the floor and curl me up like a dead bug. And then it didn't do the function it is literally meant to do, even with all the help medically we availed ourselves of. It refused to get or stay pregnant. 

So really, what do I owe it? I guess I could salute its effort, meager though it was. Also, thanks, uterus, for at least not trying to kill me through all this. I feel a little less guilty about traumatizing you now. 

Although in losing 5% of you to the endomyometrial resection, I am still traumatizing myself. It's hard when faced with writing down and then discussing your extensive gynecological history not to feel the acute and cumulative loss of all the failures and babies that never were. And then to realize that without a shadow of a doubt, nothing will ever grow in my uterus but little invaders. So I guess I don't really feel too bad about removing the part that is fertile ground for everything but babies. 

Such a mixed bag. I'm sorry, uterus. But you should kind of be sorry, too. 

16 comments:

  1. Ugh. I'm sorry Jess. That procedure sounds terrible, I'm not even gonna lie. I'm so sorry it has come down to this. Damn it. So glad you will be knocked out. Maybe you will at least get some good drugs out of it for all your trouble? I hope this works, once and for all.

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    1. Thanks so much. I am pretty upset, actually. It's all sort of cumulative, you know? I am hoping that I can have all the good drugs I want. :) I hope this is the end of everything, without losing the whole organ.

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  2. So sorry that you are in a place where the resection feels like the best, or only option. Being in conflict with your body is a terrible feeling. When it comes to health matters my preference is to be as "hands off" as possible, so I sympathize with your uneasy feelings about removing a part of your uterus. But I have no advice; I can only hope you are at least confident with the medical advice you are getting. Sometimes life just doesn't give us great choices.

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    1. I am really struggling, but when looking at all the choices I'd been presented with when I switched OB/GYNs over a year ago and then the choices presented by the specialist, it's clear I only have two options left unless I just want to bleed forever. The specialist pioneered and invented this procedure, and he has done a zillion of them and is published all over the place, so I feel like he's recommending the best option. Even though the best option sounds awful, but if it "fixes" everything then I guess I will be super happy (after the cervix dilation and the peeling of course). It sucks to make hard decisions regarding my reproductive system ALL THE TIME, even after all the treatment nonsense. Thank you for your thoughts!

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  3. That does sound pretty extreme but maybe it's the best option for you, and it would be a lot better than a hysterectomy down the line (if that's the alternative)... Do you have to get it done so soon though? I was just wondering whether it might help to take a few more weeks to think about it and have time to process your feelings about it all first. Wishing you all the best over the next few weeks

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    1. I actually elected to have it done as soon as possible. I knew something like this was a possibility, I just didn't think we'd go straight to this option. However, what do I need a lining for? The thing for me was to have it all over and done with before Winter Break, so hopefully I can be pain free and fully enjoy our romantic Vermont holiday. I have basically bled my way through all of our recent vacations, with very little reprieve (a few hours here or there), and so I am SO READY TO BE DONE WITH ALL THIS. There's just fallout emotionally I didn't quite expect. A little better today. It's sort of the cumulative effect of the last 7 years, of the damage done through all the attempts to get pregnant and the damage I'm choosing to do in the name of a normal existence. Argh. Thanks for your well wishes, I'll take 'em! I think by the week after I should be in good shape.

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  4. Ugh.

    Well, I'm glad you'll be on the other side soon. And that you get good drugs. And that you'll stop bleeding.

    I'll be thinking of you next week. Sending you and your uterus healing vibes.

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    1. Thanks, the other side would be lovely! In theory, there'll be nothing to bleed anymore, so I will be done for good, unless something goes awry. Thanks for the healing vibes!

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  5. I just want to give you big hugs. You have been through so much, and this all sounds so hard and complicated. Five months is a long time dealing with continual bleeding. While these procedures are not a hysterectomy, it is very much a big deal. It is normal to feel sad to have a piece of you removed, even if you cannot see it. Body integrity is important to people. Even if your body is not playing fair, it is still your body. As you said, the finality of not being able to physically carry a child is a deep loss, one you have experienced several times and soon to be one final time. Feel all the feels. I hope everything goes safely and smoothly for you. Will be thinking of you!

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    1. Oh, thank you, I love hugs. Yeah, the bleeding is annoying physically, but it's nearly demoralizing mentally. Thank you for your thoughtful comment, I really appreciate it! Yes to the loss. Yes, yes. There will be some peace in the finality though, once it's done. I think.

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  6. That procedure is cringe-worthy, but it's also pretty cool that it exists. I get the complicated feelings you're having. I'm so sorry, friend. I'm glad they're finally gonna get this figured out for you.

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    1. It's complicated, right? The procedure is cool and sophisticated yet barbaric sounding (I'm actually not sure which is worse, the seaweed dilation over time or the recovery from the peeling...) but I will be ever so grateful if it fixes everything. "Fixes" is a weird word for it, but man would I love to have a normal existence again. :) Thank you for your thoughts, lady!

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  7. Hi Jess, fingers crossed the endomyometrial resection fixes your woes and sorts you out. I can totally understand your mixed feelings about it. I have a very love/hate relationship (mostly hate) with my own undercarriage. My reproductive organs have done nothing for me but give me pain and discomfort but every time I think it's all about to end (i.e. menopause, no periods) I feel bereft and ripped open - why? I think it's the thought that I got nothing out of it but pain and grief, but I still have to go through all the awful crap that the menopause and ageing brings (sorry, going off-topic a tad). I know this won't put you into menopause as such but I know you're feeling some of that same kind of finality. But anyway, if this op sorts out your bleeding and hormonal problems, it's a good thing. There is a feeling of "ending" in it, so I can imagine it does feel a bit like a hysterectomy in many ways. It throws up so many f*cked up feelings, I can relate to it.
    The laminara that expands overnight and dilates the cervix is something I've never heard of and does indeed sound cramp-inducing; I truly hope that won't be an ordeal. They always warn about these things but sometimes they aren't as bad as you expect so here's hoping.
    Lovely Jess my thoughts will be with you over the next few days!

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  8. Oh boy this sounds terrible. I mean, if it were me I would certainly want to end 5+ months of periods because that would be another level of hell, but this does seem extreme. Hopefully the surgery goes well tomorrow and you aren't in too much pain afterwards. Thinking of you!

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  9. Oh wow, I'm sorry you're having to go through this. I didn't really grieve my uterus when I had my hysterectomy two years ago after months of bleeding, but I was at quite a different stage of life. In fact, I think I remember saying to a doctor or nurse, "good riddance to it, it's never done anything but bring me grief." But I totally understand your feelings about actively ending any possibility, however theoretical, of pregnancy. I hope though that the recovery and the results of the surgery make your life so much easier, and that you feel like a new woman afterwards.

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  10. I haven't read ahead, but I am guessing you are right in the middle of the prep for this procedure (and thanks for clarifying -- my first thought reading the first part of your post was "is this the same as an ablation?" I know several women who have had ablations done and thought they were the greatest thing since sliced bread. Of course, most of them had had all the children they wanted before having it done...). I have heard of laminara; I believe they also use it when inducing labour in some cases -- in fact, I think they were going to use it on ME before I went into labour on my own. Anyway, it's a hard decision to make, but I hope the drugs are good ;) and that the procedure ends the constant bleeding and helps you feel better. (((hugs)))

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