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Monday, February 11, 2013

If you're squeamish don't read this. I warned you.

I've been quieter than normal on this blog the last 4 plus months. I haven't totally discussed why. I'm not sure many people noticed, other than my husband and mother:)

The reason why is kind of embarrassing. It's not something that is pleasant to talk about. But I'm going to today.

As you all know, I have had six kids. That many children can wreak havoc on the bodies of some women. For me, the first 5 seemed to be no big deal-aside from some postpartum depression, which is a whole other post. Recovery was great, everything still worked afterwards.

Then Nora came along. Sweet, beautiful, wonderful Nora. Who was worth every minute of all of it. Who I would repeat it all for.


That said, I noticed things I hadn't noticed before. Like how sneezing with a full bladder was a bad idea. Like how running with a bladder, not a full one, just a bladder, was a bad idea. How coughing was a bad idea, laughing too hard a bad idea, waiting too long to pee, a bad idea....

You get the point.

Then I started noticing that it didn't matter what I did, that Poise pads were my present and future.

I then had a friend who decided enough was enough, being in a similar situation to myself, and she went and had bladder sling surgery.

This surgery involves placing a tiny mesh sling under the urethra in order to support it and keep it from opening when it shouldn't. *ahem*

Her surgery was successful. And then I talked to another friend who had it done and hers was successful.

I decided that was enough research (stupid, stupid, stupid) and so I went to the doctor of one of the friends and said, "Hey, I want this done too."

My first concern should have been that he didn't say,"What else have you tried?"

I had tried a zillion kegels (squeezing of the muscles, down there, to strengthen everything.) which worked with my other kids, but did nothing this time.

So he put me through a number of humiliating tests, which I won't talk about, if you want to know, google it.

All to discover that yes, I was a candidate for the surgery, so lets schedule it. Woohoo I thought.

The morning of September 12th came along. I woke up early and immediately had a bad feeling. A feeling that I should cancel the surgery. Let me just say, DON'T BE AFRAID TO LISTEN TO THOSE FEELINGS!!!

But I just brushed it off as nervousness. I thought, my surgery is in 2 hours, I can't cancel anyway. I should have called.

The doctor told me that my recovery would be a few days. So I was completely unprepared for the fact that I could barely walk. Not necessarily from anything "down there" but because my legs hurt so bad. I knew that they would make an incision in the crease of my legs in order to thread the piece of mesh through.

What I didn't know is that they take hooks of some type and move your tendons out of the way in order to get that mesh in. So that explained why I felt like I'd been forced into the splits, or why I felt like someone had popped my legs off and then forced them back on again. Like a Barbie Doll.

At first it hurt to sit down. A lot. I figured that was normal. At first it hurt to let the water from the shower touch any part of where I had surgery. I thought that was normal.

Then as three weeks went by, 4 weeks, and I still couldn't sit on a hard chair, I began to wonder if that was normal. It didn't seem normal that I felt like I was being stabbed with something from the inside every time I sat down or squeezed those muscles.  It didn't seem normal that every time I wiped after going pee that it hurt me.

It also didn't seem normal that I felt so traumatized. I have had two surgeries previous to this. One pretty invasive, the other foot surgery. And I did not wake up feeling so emotionally distraught.

I felt so awful in fact, that I refused to go see my doctor for my 6 week follow up. I thought I would have a break down if I had to look at him. I'm not saying he did anything that warranted this, I just couldn't see him.

In fact it took me until 2 1/2 months post op to work up the courage. And I brought Jeff with me.

I then had to tell the doctor about the stabbing pain on the inside right of my nethers. I then had to also tell him that nothing could touch me in the clitoral area (sorry everyone, but it's the truth) without it hurting. Yeah, intimacy? Well I learned real quickly what an amazing man I'm married to. I knew that already, but this just added to the list of his great qualities.

First of all, the doc got very pale. And he very nicely said that he had never had anyone come in with those symptoms.

Great. I was alone.

Then he proceeded to do an exam that felt like he was digging for gold, and from that exam he declared that it felt like the mesh had slipped.

His solution was for me to go a few more months to see if the pain got better and then he could possibly take it out.

At this point I just wanted to run out of his office. I can't even write about this without crying.

So I went home discouraged. Very discouraged. I felt very depressed and things like blogging seemed to not matter very much.

Then I started researching this surgery. And boy oh boy. There are lawsuits against the makers of this mesh. There is blog after blog sharing similar and worse stories than mine.

The worst part is that doctors are still doing this surgery. Even with all the problems. I feel lucky that my problems started immediately. Some women have had health problems for years and have only begun to realize it was all connected to the mesh surgery they had 15 years ago.

They used to do this surgery using your own tissue. But the recovery was longer, and well, we are a drive through nation. Heaven forbid we have to recover longer. No, lets just place a foreign object that can erode through your vaginal wall or tie itself up in your nerves causing clitoral pain.

After all this research I also learned that a urologist can only remove part of the mesh. The end pieces can only be removed by an orthopedic surgeon because it is so much more complicated to get those little pieces that are embedded out.

I also realized that I never wanted that previous doctor touching me ever again. I don't even think it was his fault, but mentally and physically I associate him with the beginning of my troubles. And it's my body, I get to decide who operates on it.

So I found some ladies, yes ladies, who only deal with urology and urogynocology. Just women. No men.

I went and told my doctor all my problems. She also told me she hadn't heard of my specific symptoms. But after a lot more thorough question and answer period, an exam including an ultrasound, she told me that she thought removing it would be the best option. That my nerves were obviously fired up and she though she couldn't be positive that the mesh was the cause of the pain when I sat, it seemed like the likely culprit.

She was up front and told me she couldn't remove all of it, that it would require an orthopedic surgeon's help. But that if just removing it didn't solve it all, we could go back in and remove the rest.

So this last Tuesday, I went into surgery again. This time I had no bad feelings the morning of. And believe me, I was listening this time.

So far recovery has been much better. Partly because she does not have to hold back the tendons of my legs with metal hooks to remove the mesh. Thank goodness.

While I was waking up, she went to the waiting room and showed Jeff pictures of the whole process. She said that the side where I was experiencing pain was red and raw. Which to me, screams the beginnings of erosion.

Because despite waiting a few months like the last doc suggested, the pain had started to get worse, not better. Because the mesh was digging into my flesh on a daily basis.

Right now it still hurts to sit down, but that's because I was cut open and then sewn back up again only 6 days ago.

The jury is still out as to whether the sitting pain and clitoral pain will be gone. Because everything hurts right now. And I have learned about something called Post-operative fatigue. Basically it is normal, but for me it makes me need about 10 hours of sleep at night, plus a nap. I experienced this last time as well as this time. It sucks, but again, I have the most amazing and patient husband ever. I really do. Nothing shows a man's true nature better than when you are in need. He has put the kids to bed every night. He has told me to go to bed when I couldn't keep my eyes open at 8. He has scolded me for doing too much and said, "Just tell me what to do and I will do it for you!"

So that helps a ton.

And I am hopeful that this surgery did the trick. Of course, there is also the lovely fact that since the mesh has been removed, that the job it was good at-helping me not pee my pants-is most likely done. I can't tell yet because of post-operative other stuff. But I knew that going into it. And I'd rather wear a pad the rest of my life than have it hurt when I sit down.

And bonus, since this surgery will cause us to meet our 1000 dollar deductible(yay us), there is nothing stopping  me from getting the last bits removed by an orthopedic surgeon if need be.

Well, there is one thing that might postpone it at least. We're moving!!!

We're listing our house tomorrow, and when it sells, we are moving to Ellensburg.

The timing of having my house ready for pictures tomorrow is unfortunate since I am not supposed to lift more than 5 pounds or vacuum for the next few weeks.

But, we didn't plan this. When I scheduled my surgery, we didn't know we were moving yet.

So wish me luck today as I attempt to clean and ready my house without being able to lift anything, while taking Vicodin, AND most likely needing a nap.

And I will tell you all more about what led to the sudden decision to change our entire lives tomorrow. After the pictures have been taken.

Oh and one more thing. Please don't have this surgery. I know there are people who it has been successful for. But do a bit of research, and you will see that statistically the chances are that you could be in the same boat as me. And let me tell you, I wish I could get off this boat-drop anchor and run.

********************************Update*****************************************
After the surgery to remove the mesh, my pain did not get better. So my next option was something called vaginal physical therapy. Didn't know that was a thing? Yeah, neither did I. But apparently there are angels on earth who do this work. It was uncomfortable both emotionally and physically for me and I had to ask someone to help watch my kids for 2 months worth of appointments but it helped tremendously. But add it to the list of things I wish to never repeat. And add to it to the list of strange, previously unknown things that I'm extremely grateful for. Also, 3 years later, I still have some pain. Not sure if it will ever go away and if this is my new normal. But at least its better.

14 comments:

  1. Yikes Amy! i am so sorry. Thanks for sharing. You may have saved someone else's life. Ellensburg...can't wait to hear why but I can understand why. I love that place.

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    1. I know, Ellensburg is pretty awesome. Just laid back, which is what we are craving.

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  2. Um, what????

    Holy cow, what a couple of months you've had! I'm so sorry to hear about your surgery complications; I researched the same surgery and even had some of the prep work done (can you say bladder study? Most humiliating experience of my life!) but I ended up not doing it. Now I know why. Yikes.

    And back to the burg? Sa-weet!! I too can't wait to hear all the details on that.

    Hope you're resting and feeling back to your old self again SOON!

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    1. Seriously, could they possibly make the process worse for us? The lady who conducted my tests was as nice as can be. But the whirring of an electric commode measuring how much I leaked is something I hope to never experience again as long as I live! And since I have already gone through it twice, I'm pretty sure I'm done!

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  3. So sorry for you! Praying for healing from surgery and from that root bladder problem.

    Also, I have a cousin in Ellensburg! Let me know if you want an intro. She is specialist with the education dept (might be useful). :) Also, more incentive for us to visit since you will both be in the same place. Can't wait to hear why.

    Hugs!

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    1. That would be awesome if we got to see you guys! It's crazy, we have another friend from Utah who has a brother in Ellensburg. Small world.

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  4. Thank you for sharing your story. Baby #5 has wrecked havoc on my body (a prolapse) and while I'm still hoping time will help things, I had been wondering about surgery. Now I know that surgery is not something I want to explore. My doctor did mention using a pessiary. Maybe that's something you can try?

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    1. I have heard of a pessiary. I will have to look into it. Thanks for the suggestion!

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  5. whaaaaaaaaaaaaaaaaaaaa!

    ugh! ellensburg? horrible!

    can't wait to hear all about it, and i'm so sorry about all of the stuff going on lately. when i saw you in october i never would have known you were having so much troubles.....and we sat in those horrible mc'd's seats too!

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    1. Oh Tiff, I love you!!! Moving to E-burg means I can be more like you and have chickens, land, and happiness:)

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  6. I am so sorry to hear about everything that has been going on. I have had bladder problems my entire life. I have had to wear a pad since they first came out when I was in the 4th grade. Back then all the had was the diapers! (It didn't make me the most popular kid) I have thought several times about getting the surgery. I now know that I will NEVER be getting this surgery. I live with the pad and go into a panic when I am starting to get low. LOL

    Thank you for sharing your story. You may have just saved me a tremendous amount of pain.

    I'm not too far from Ellensburg.

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    1. Oh I'm so glad that my story helped you. That's why I finally shared it. I know people who have had success with it, but I feel they are the lucky ones now.

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  7. SO sorry Amy. I swear. Is being a mother fair? Really? I have a friend who says, with each baby we should get skinnier, more toned and better boobs. Seems fair to me! Sheesh!. I have to stop what I'm doing and cross my legs every time I sneeze, cough, laugh, jacks or run. I hate it! So sorry to hear about the bad experience. I hope recovery finds you soon. I, for one, and thrilled you'll be heading back to the Burg. Can't wait to see you there! Love you.

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  8. OH Amy, how terrible!! I am so sorry this all happened to you! Quick recovery coming your way :)

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