Adding my two cents to the mega mesh mess surrounding transvaginal mesh complications…

Never Forget

Going to UCLA...

It has been almost three years since I had mesh implanted in me for SUI.  It has been just over two years since I had full mesh removal with Dr. Raz at UCLA in January 2013.  And, it’s almost one year, now, since my hip surgery in Feb 2014.    It’s almost hard to believe.  As I’ve said in my last update, I’m doing pretty well, all things considered.  Lately, I’ve been feeling a little nostalgic, and wanted to reflect on just how far I’ve come.  Now that I’m getting around better, it’s almost hard to believe everything… to remember.   Not that I could ever really forget… but, sometimes, it can seem like an old dream and it all gets a little hazy.  That goes for those around me as well.  I find they tend to think I was only out of commission for a few months.  Ha.  I wish.  “How soon we forget”, right?  And, I don’t want to forget… not really.

So, I went through some old messages…  and, found these….  some of them were public posts on my Facebook, some were in private emails, and some in a private journal.  I thought I’d gather them on one post here, sort of see the journey in a different light, and share.  I apologize upfront for the length of this post – feel free to ignore me.  I also should warn that there may be some, shall we say, colorful language here and there.  Again, if that offends you – feel free to ignore me =) :

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2012-08-06 –   I wrote:

Ten years ago, when my father died- I remember feeling like my world stopped.  Everyone just went about their normal lives, talking about normal things… asking me normal questions…  but I felt like screaming, “what is wrong with you?!?  Don’t you realize what has happened here?  NOTHING will ever be “normal” again!”  Nothing they were saying or complaining about seemed to matter.   I felt like everything should change for everyone, but it doesn’t.  Life goes on.  As it should.

I’m not sure how long I was stuck in a funk back then…  but I remember that for a while, nothing did really matter… or at least not the “normal” things that most think matter.   I guess, the old cliche is true… how, when something really bad happens, it makes you realize what really is important in life.  For me,  it made me realize just how little that really is.  I mean, there is just….  so….  much…. bullshit! 

Which, I realize is rather condescending.  Who am I to tell anyone else what matters, and what doesn’t.  Depending on who you are, where you are, and what you are  – little things can and do matter…  and sometimes, we will make sure they do, won’t we?  Eventually, the little things started mattering more and more to me again too.   Maybe too much…

Now it’s my own health situation making me feel like life is just breaking down again…like everything is just falling apart along with myself.   This is a new one on me.  I never had the luxury of being handicapped before.  Maybe it’s another wake up call…  but, right now I’m having a hard time appreciating anything really.   Right now, nothing seems fair.  Nothing seems okay.  I’m trying to deal with and accept my new limitations and just figure out how I will get by the next several months.  I try not to think about what might happen if there is permanent damage.  I can’t think about that – and yet, here I am contemplating the “what ifs” anyway.  With so much up in the air, it does makes it harder.  “Hurry up and wait”  to go see the next specialist.

What really gets me is  that I feel like all of this was avoidable, which makes me angry.  Yeah, I’m pissed off .  The more I learn and research everything, the more pissed off I get.   I know it’s senseless to be bitter, and to think, “why me?”… but, I think it anyway.  Why am I one of the lucky ones to have these kinds or “rare” problems (or maybe not so rare according to the FDA?).  Why didn’t I know of these warnings before I had surgery?  Why me???  Thanks to the internet I am learning I’m not alone… and while it’s nice to know I’m not alone…  and talk to others who can understand… it also just makes me more sick to know how many are going through this senseless suffering.

My 10 year old told me the other day that he doesn’t like me like this.  

He wasn’t trying to be mean…  just honest.  Well, I can relate.  I don’t like me like this either!  I feel like I’m turning into everything I don’t want to be.  I feel like I’m the anti-me or something!?

I don’t want to be like this.

 

2012-09-11 – I wrote:

So, hit a nice new low today… This morning, my son called… said he forgot his homework asked if I could bring it to the school within the hour. I told him ok, but after I hung up the phone reality set in.

I was just trying to get myself up and ready for work when he called, and wasn’t getting anywhere fast. I was actually debating on if I could/should/would make it into the office today because I am feeling so incredibly sore. My back started hurting yesterday on top of my leg that’s been hurting non-stop for months. I pictured his high school, and the big parking lot and huge steps that lead up to the front door.

I recalled there was a looooooong ramp that went up one side… that might be doable, I thought.  I wondered, if there was any handicap parking near that? I wondered if there might be someone who could run out to my car and meet me? I’m sure the office staff just love that. I could ask, I guess. Did I want to ask? No.   I wondered if I could just manage to walk that distance even with the ramp because even with the crutch and pain meds, I can’t walk far before it hurts so bad I feel like I’m going to collapse and/or cry. I figured, even if I could make it, walking in and out would probably put me out of commission for the rest of the day if not longer.

In the end, I wound up calling my husband who was already at his shop, where he’s been working 24/7 lately trying to provide for our family AND make sure we can afford my traveling across the country for surgery in the not-so-near-enough future. He had to leave work… come home… get the homework… take it to our son (who’s going to get a nice lecture when he gets home about being more prepared and how NEXT time he can just get an F).

I then proceeded to have a mini melt-down of sorts. Now, I do not consider myself a weak person, at least I never did before recently – but now, well? Now, I’m not myself. I hardly recognize myself. I HATE this. When did I become so freaking weak and useless?? I feel like an invalid. I’m 46 and I can’t freaking walk my son’s homework up some steps and into his school if I need to…. WTF? =(

I’m sorry… I know so many are struggling even more than I am… I just really need to vent. Sometimes, I still can’t believe this is happening to me… and so many others for that matter. It’s insane!

 

2012-11-27 – I wrote:

I am a sorry mess.  I’m learning I need to quit making plans.  I have always tried to “do what I say, and say what I mean”…  but, lately, this doesn’t work for me.  I will mean things when I say them  –  but, then, when it comes down to it, I just can’t make myself do 1/2 the things I think I should be able to do anymore…  because I’m physically just not able to… and I hate being like that… like this… but, it happens more and more lately….

So, I guess I need to accept this is how I am right now… handicapped. There, I said it.  I’m handicapped, and there’s nothing I can do about it right now. Hopefully, it will be better in the future – I am lucky to be going to the best for surgery in the near future…  so, I have high hopes I will be better.  Like really high hopes… and I know I’m lucky to have that…  but right now?   – life is a guessing game each day for me…   and I’m not fucking Kreskin.  I can’t know how I will be tomorrow… and, I’m sick of apologizing all the time when I fall short.  It’s like adding injury to insult.  Like a double slap in the face.  First, is when I realize I can’t do whatever it was I thought I could/would do.  Then, the second is when I feel like I’m letting someone down.

Lately I say “I’m sorry” a lot.  Like, A LOT.  Sorry I didn’t get this done, or that done… Sorry I can’t make it to this meeting… or to that event…   Sorry I’m such a pain in the ass… Sorry I’m such a downer… Sorry I’m a crappy Mom…. Wife… Friend.  Now, I’m sorry for being so sorry! WTF?  I am dealing with all this crap – my whole life feels like it’s upside down –  and then I feel guilty all the time on top of it?!  Ugh. It’s not right.  So, I decided I’m gonna try real hard to STOP apologizing for myself.

 

2012 -12-05 – I wrote (and it was all I wrote at that time):

I’m just so very sick and tired, of being sick and tired.

 

2013-01-03  – I wrote:

I’m officially mesh-free! I guess it wasn’t exactly easy, but Dr Raz was able to remove the whole sling. Had to scrape part of my bone, but he got it. He is an amazing doctor. Everyone here at UCLA has been very nice. I’m in a room for the night… Sore, hooked up to a bunch of wires, but feeling a bit better now. its been a long day for Kevin & I. They says it will take a few weeks before leg pain & all starts feeling better, but at least I’m moving in the right direction. To say I’m relieved is an understatement. Hopefully I will be discharged tomorrow, & will then be at hotel. Thank you with all my heart for all the prayers & well wishes. I’m a lucky woman!

This man saved my life!  He did what others told me was not possible.  I have so much respect and admiration for him.

This man saved my life! He did what others told me was not possible. I have so much respect and admiration for him.

(notes/pics from UCLA trip here: https://www.facebook.com/media/set/?set=a.304027056398512.1073741830.299505896850628&type=3)

 

2013-01-0 –  I wrote to a friend:

“How are you? I haven’t been feeling so good, which I know is to be expected but ugh. Still just so happy mesh is out. I started bawling after my surgery & after Dr. Raz showed me the mesh…which actually made my hubby tear up too & that is something you don’t see every day. Just tears of relief.. I know you know… I’m going back to see Dr. Raz this morning & hopefully get catheter out. I hate it. I will keep you posted, & want to thank you again for sharing so much from your own journey. It helped me so much!”

 

My husband has been my rock through all this. The mesh complications I suffer from also greatly impacted my family. My husband and boys have really had to step up to the plate, and they have. I can't thank all my family and friends enough for all the support.

2013-01-09 – I posted this pic

of my husband and I in the Tiverton at UCLA before we headed back to NY after my surgery.  I had more than one person make comments like this one that my sister-in-law wrote:

“Your brother was right (again) it looks like the weight of the world has been lifted off both your faces <3”

She was right, I did feel like the weight of the world had been lifted.  Many will never know this feeling.   But, I hope that the ones who need to, find a way to.

 

 2013-07 – I wrote:

I am looking for more information on water walking classes. I am currently in Physical Therapy, and have been for a few months. I heard about the water walking and think it might be something beneficial for me. 

A little background on my injuries… I am currently recovering from some pretty major surgery last January 2013, where I had full transvaginal mesh removal surgery at UCLA.  This was because I started having major complications immediately after the mesh was implanted in Feb 2012. My pain basically was in my hip/groin/thigh and then my leg/knee area. Before mesh removal, I could barely walk or sit, and was getting worse and worse. I went to many doctors before making the hard decision to travel all the way to CA for mesh removal at UCLA.

Since mesh removal surgery in January, I have been doing much better than I was, however, it was pretty major surgery and has not been an easy recovery. I was out of work for months… but, finally returned about a month ago. I am still having difficulty walking, but at least I can sit and am no longer in pain 24/7. The pathology report from the mesh removal surgery showed that the mesh was eroding/cutting through my obturator and abductor muscles, had adhered to my pelvic bone (where they scraped it off), and I was having FBR (Foreign Body Response) to it, causing inflammation and pain.   At this point, I’ve been doing PT and Chiropractic treatments, but am still having pain when trying to walk and need a cane or crutch. I am not sure if I have any permanent damage yet but am hoping that I can keep improving, even if slowly.  I am thinking the water walking might be something I could do, though, and helpful.

 

2013-10-21   – I wrote:

 I’m finding that when you really do have a sob story to tell, and you really are miserable and in need of company…  especially if it’s not a minor issue but something a little more, shall we say…. “chronic”, for example?  Well then, guess what?  NOBODY wants to hear it.  Not really.

Sure,  some really do care.  Some.  Very few, really. For them, I’m eternally grateful… and sorry that they have to go through this with me as well…  I am.   I know I’m fortunate to have people in my life who really do care – but, lets face it, this IS hard and they must get sick and tired of me being sick and tired too.  I try not to burden them too much… but, I feel like I do anyway… so, I will try harder.

Still, most folks  can only do it for so long  before they want you to cheer the hell up, and/or shut the fuck up.  Sure some can withstand more woe than others, but eventually even the dearest of friends & family will have had all they can stands, and they can’t stands no more! (You have to say that in your best Popeye voice). 

This shit has been going on too long already.  I’m sick and tired of  being sick and tired too!  I want to act like I’m fine as much as you want me to.  I’d rather BE fine, but, believe me – I would settle for just appearing to be fine.  Sometimes, I try it..  I try it a lot, actually.   I will smile, and say, “I’m good!”and try to mean it.  But, it’s not easy folks… ’cause (newsflash!) – I’m not.  Even if I can refrain from saying, “ow ow oww”… usually, my limp and cane will ultimately give me away anyway…  *sigh*

I don’t really blame them.   Hell, I don’t even want to hear me sometimes.    I guess I’m pretty much finding out who my friends are, as well as what their limits are.  Like I said, I don’t blame then.  Not really.  I’m not much fun lately.  I know that.  Try as I may to “keep up” with my old self – it’ ain’t working.  I’m actually amazed that more of my friends /family haven’t already dropped out of the picture.  And while I was surprised at first when some of them did disappear or just didn’t seem to “get” it  – ?…well, now I get it.  And I’m not mad.  I don’t like it –  but i get it.   Plus, it makes me appreciate my family and the ones who really have been there for me, so much more.

It’s going on two years since all this crap started.  What should have been a minor surgery, turned into major problems and within months I could hardly walk.  It’s going on one year since I had a different corrective surgery that I thought would fix me up.  It was kind of a big deal… had to go to a specialist across the country and wound up being out of work for months.  It wasn’t easy, but I thought I did what I had to do, and that if I did that, I’d get better.  Well, I got better, but not all the way better.

Turns out, I have some problems that will require yet another surgery.   It’s gonna be a long next few months… but, what the hell? I’ve already been dealing with this crap for 21 months.  What’s a few more, right? Right.  Then, hopefully, I can chalk these last few years up as the “sick and tired” years…  or the years of discovery.

I know that’s not the end of the world.  I know it could be much, MUCH, worse.  I know I’m so lucky I’m not as bad as I was a year ago at this time… and, that there’s an end in sight.   I hope!  Forgive me if I have trust issues now of the whole healthcare industry.   I am 100% positive there are others out there who have it much worse….  and they would think what I’m going through is a walk in the park…  and probably would tell me to quit my belly-aching and that I should just shut the fuck up.  And, I probably should.  So, I will.   Or, I will at least really try to.

Live and learn… Live and learn.

 

2014-05-28- I wrote:

I am doing much better since having full mesh removal in Jan 2013, and then a total left hip replacement this past Feb. 2014 (yeah, needing more major surgery wasn’t cool… but also wasn’t really an option & so far recovery from that seems to be going well).  I’m 3 months out from the hip replacement now.  Still doing PT for both my hip, and pelvic floor…  and also going to the gym 2-3 times a week, and then to work.   I went back to work full time about a month ago.

It is not easy.  I’m exhausted most days by the end of the day. It does still hurt to walk, and to do a lot of things still – but I’m fighting thru the pain and doing what I can.  I’m mostly just thankful I’m even able to be doing what I’m doing! A few months ago, and for a couple years before that, it simply wasn’t possible no matter how hard I tried or cried. I could NOT walk without support.  Even with support I couldn’t go too far.   Not to mention all the other pains and issues.  There was no “sucking it up” and just pushing through the pain back then.  And, that was a tough pill to swallow.  When you suddenly realize you are no longer independent, and you have to start saying “I can’t….  ” more and more?  Well, it sucks.  That much I know.  I was out of work for several months… needed a cane or crutch for a few years….  missed a lot of my kids and family events… felt like a burden, etc.  No, it has not been a fun couple of years.  BUT, at least I finally feel like I’m through the worst of it.  I’m making progress. And, that feels great.

So, yes, I’m still limping, but nothing like before.   I’m FINALLY walking without a cane or crutch for the first time in over 2 years (since just after the TOT mesh was put in for SUI).  That alone is HUGE.   So, yeah, just to be walking again without the cane or crutch? Even if it hurts and/or I’m still limping?  Very cool.

Truthfully, I don’t know if I’ll ever get back to where I was before mesh.  Maybe. Maybe not.  I like to think positive, and have it in my head I’ll be fine.  However, I know that many, if not most who have mesh complications do not escape without some kind of permanent or further complications. I know that. And, it sucks.   I’m well aware that reality sometimes does suck, and that this may be reality…  but, I’m not giving up hope. I feel like I have a good chance… better than most… to keep getting better.  This pushes me to keep trying to do things. It also makes me feel a bit guilty…

My heart just goes out to all the ones still suffering so terribly because of mesh… so much worse than myself.   All you have to do is read a couple of the comments other women have left on this blog, or other blogs, or in the support groups – and you will see just how severe, life-altering, and devastating mesh complications are, and how long-term as well.   So, I know, all too well, that I’m very lucky.  Lucky I could get to UCLA and Dr. Raz.  Lucky I was able to get a full mesh removal only 11 months after it was implanted, rather than enduring multiple partial surgeries and many years worth of resulting complications.   Lucky that even though I needed more major surgery for my hip, at least it was something doable, and that it’s now done.  And, even though I’m not back to where I want to be… or where I was before mesh… I also know I’m lucky to even be where I’m at now.  All things considered… I know things could be so much worse. Sometimes, it’s hard to share positives, when you know how many are not doing well at all. I hope some find hope when I do share positives… and still feel safe to share their stories, the good, the bad, and the ugly as well.

 

2014-12-31 I wrote:

Happy New Year.  I hope you have a safe and happy New Year’s Eve tonight, and I hope 2015 brings more JOY than pain your way!

2014 was not without its downfalls for me.  Losing my Mom unexpectedly the end of January was the worst. Having major hip surgery right after that in Feb was also not much fun… But, 2014 also came bearing some hefty gifts. Hope. Appreciation. Happiness. Health. I may not be exactly where I want to be, but I am back on my feet again, literally, after over 2.5 years of using a crutch. So yeah, there’s that. All in all, I have SO much to be thankful for… And, I am. Very.

I am so thankful for all my friends and family for all the support and love. Especially my own husband and our boys. They are the heart of my world, and I love them with all my heart. I also don’t know where I’d be without my brothers, my extended family (on both sides) and my closest friends. I seriously have some of THE best people in my corner.  Then there are all my online friends, and distant friends and relatives that may be far away, but were always there for me when I needed them nonetheless. Including some of you. Thank you. Honestly.

Now, I am looking forward to 2015. This will be the first year in a few years that I am NOT gearing up for any surgery (YAY!!). My oldest son will be graduating high-school and starting the next chapter of his life (Exciting!) We have a vacation planned this summer with family and friends (Can’t wait!). And whatever else life throws at us.

BRING IT ON 2015!!

 

I know this was long.  If anyone actually read it – thanks for “listening”.  I’m doing it more of a reference for myself than anything, I think.  Of course, there was more to all this.  Much more.  You can check the posts I’ve made here under “My Updates“, if you like, for a little more info – but, there’s no real way of capturing it all.   I do hope this post helps a little – helps me to remember, stay positive, and maybe helps others to find help and hope as well.

I leave you with this video, that I feel sums up a lot as well…

Witness, by Daughtry

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10 Responses »

  1. Thank you for sharing! Strange thing, as I read your story, so many times I thought to my self I didn’t write this, but it sure sounds like I did. So happy you are doing better! I will be flying to have Dr Raz remove mine on February 9 th. Reading you story helps me realize maybe God willing I can get better.
    Sincerely, Tambrea

    Like

  2. Oh Deb
    I absolutely love this!! … ❤
    Thank you for being such an inspiration to all of us Mesh injured people all over the world.
    Warrior Woman! … One of my Super-Heroes! – I am so glad to call you friend!

    Like

  3. YOU give ME HOPE… I’ve read all your posts.. I’m so glad you are doing better!! I’m a nervous wreck right now.. I fly out of Nashville tomorrow to see Dr.Raz Tuesday at 2. I want my life back so bad.. my husband,my kids,my friends, my family want ME back too.. Thank you for sharing.. i wake up and go to bed reading about Sling Mesh Erosion Complications.. thank you again.

    Like

    • Beth – thank you for that. =) Much appreciated. I am so glad you are going to see Dr. Raz! I hope your consult goes well. It’s all so much to do and take in. I know how overwhelming everything is. If anything here helps – I’m so glad. Take care and keep me posted. =)

      Like

  4. I am a little concerned about Dr. Raz’s age because you know we don’t live forever & in order for me to pull everything together to make that journey could take a year or two.

    Like

    • Joyce – I know. That is a concern… only because when he is no longer an option, we are going to lose a huge asset for mesh-injured women everywhere. I can vouch for the fact that in spite of his age, he was still going VERY strong when I had my surgery. He was right on top of everything, and very involved. I even overheard one of the nurses say he was like the energizer bunny. Still, I wouldn’t wait longer than you have to. It will take a few months, at least, just from the time of consult until surgery. I had to wait about 5 months – so, at least make the appointment, if you can.

      Many women are having good luck with Dr. Veronikis in St. Louis too – and getting in sooner. He may be another option for you. I also hope more doctors who really know how to remove the mesh in the tricky areas and do non-mesh repairs will step up to the plate.

      Like

  5. Deb, thank you for sharing. You are an excellent writer. Did the mesh or mesh removal surgery ruin your hip? I’m wondering if the mesh caused the hip replacement. I, sadly, had two partial removals and still have the mesh in both hip bones. I keep wondering if I should see if Dr Raz could get it out of bones. I was told by my doc that cutting into bone would be too invasive. I will be anxious to know if the mesh removal surgery and mesh caused the replacement.

    Like

    • Mary – Yes, it’s all related. All of my pain stemmed from my obturator muscle, which is right over your hip joint. Turned out, I had damaged obturator/abductor muscles and chronic FBR and inflammation, etc. – all right in that area – from the mesh. I also had NO history, pain or any hip problems before the mesh was implanted. TOT slings, especially, are known for causing hip/leg pain. (Check out this article: http://www.laborie.com/articles/complications-of-synthetic-mid-urethral-slings). There is a thing called “post-traumatic arthritis” as well (http://my.clevelandclinic.org/health/diseases_conditions/hic_Arthritis/hic-post-traumatic-arthritis) that makes perfect sense. Dr. Raz said he had women coming in all the time in wheel chairs, walkers, and canes, but, getting other/specialist doctors to agree is not always so easy. Most of them are all so compartmentalized, and do not understand mesh, and/or don’t want to get involved… It’s sad. But some do get it. As one doctor said to me, “Did you have ANY problems walking, or with pain, or take any pain meds, before mesh? No? And this all started right after TOT mesh implant? Yes? Hmmmmm… well, then, how can it NOT be related?”. I was like, “Thank you!”. I tell you what – I am VERY glad I got the mesh out BEFORE the hip replacement. I worry the hip surgery would have caused infections or not healed correctly if I still had FBR and everything going on from the mesh…

      Also, regarding the “too invasive”… Most docs do say that about removing mesh unless they are only getting the “easy to get at” parts. See my post: https://meshmenot.wordpress.com/2014/11/23/partial-vs-full-mesh-removal-surgery/

      I would at least go for a consult if I were you about getting more mesh removed. So many women thing their doctor removed most or all of it, and then find they did not.

      Like

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