I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

Dont even try to tell me there’s nothing else because I refuse to believe that….

on July 31, 2012

So, I feel somewhat calmer today since yesterdays 5 week post-op Surgeon appointment. I wanted to write last night more than I have ever wanted to write but I knew I couldn’t… I was too angry, to tired, to scared and way to emotional to write about what has consumed my life in every sense of the word…MESH

I have had a feeling for the last 2 weeks the apt would not go well…it stopped me from sleeping at night and when I did sleep it terrorized me with “Night Terrors” and penetrated my body with the raths of panic attacks…it made my mind go crazy during the day and crazy at night. I have been running or trying to run from the mesh now for months and months and I can’t escape it because the mesh has become me or I have become it…I’m not saying it defines me as a person but it does shape and mold my life right now with endless medical appts, new specialists, tests, pills, and fear. When will it ever end, I’m not sure it will and that is not me being pessimistic it is an unfortunate statistical  fact.

I have been advocating and educating for the past few months trying to get the word out about mesh…I have been lecturing women on the dangers and simply asking them to read the different BLOGS out there on the complications of mesh, I have told them to make sure they are INFORMED about MESH BEFORE they elect to have it done. I have never told a person NOT to have the surgery, I have just asked them to do their homework and research and then after all of that, if they choose to go ahead, I know that I done all that I could.

My main concerns going into the apt were basically, “what if there is nothing else” and that is exactly what happened. I was nervous about the drive to the office as it was out of my comfort zone when it comes to driving but I knew I had to just take the bull by the horns and run with it…I’m a big girl now so act like one…that was my thought the whole way there! I ended up being about 2 hours early but funny enough, there is a shopping mall right across the street from my Surgeons office, how freaking convenient is that!!! I decided I would check it out although I knew I would pay for it later as walking is very difficult when you are in pain but I was determined and it paid off, I came out with 4 beautiful skirts!!! Didn’t even try them on, no time for that and anyway the sales lady assured me they were “one size fits all”…I can’t for the life of me figure out how that works but I didn’t care, I bought them anyways, they are pretty and will cheer me up on my yucky days.

So its time to head over to my Surgeons office, butterfly’s in my stomach, a nerve rash on my chest and on the verge of a full-blown panic attack…breath Diane, breath…The Doctor came in and asked how things are, now THAT’S a loaded question! …I tell him all about the problems I am experiencing and he seems surprised and said something to the effect of, “well we had hoped for better than that”. Ya think!!! He asks me whats been happening and I tell him and he  really didn’t say much at the time, there was an odd silence in the room and I didn’t like it one bit. He commented that I was healing well but to still be careful as I am only 5 weeks post op.

I, at this point,  decided it was time to ask my questions and challenge his answers if necessary. You have no idea how much I hate confrontation but when you have been physically and emotionally challenged by MESH, you’ve already lost most of your dignity and ALL of your pride. First question, how much did you get out, he told me the amount and then I challenged him with this question, “So, if the mesh is say 6cm in length (this is purely a guess on my part so don’t take it for anything more than that, I truly don’t know the size of the Mesh device I had implanted) and you got out say 3cm, where is the other 3cm”? Does that not seem like a logical question? I thought it did but I knew the second the question left my mouth and was out there, there was an icy cold feeling in the room. Dr asked me to clarify question, raised eyebrow and a somewhat discerning look on his face which I took to mean, “how dare you challenge me”. Oh well! Shit happens! He said something to the effect of, (and don’t quote me on this) well it is embedded or become apart of your muscles and tissues”. Oh really! So how do we get it out…we dont. Huh? WTF? Why not? he says he did not get the mesh from the Obturator Foramen and will not go back in to get it from there as it is to dangerous, too many blood vessels. It will always be there and will eventually degrade into the surrounding tissue. Ok, this conversation is not going in the direction I wanted it to go. To be clear I said, “So this is it, you removed what you VISIBLY saw but you will not look for more”? and the answer was, “Yes, that’s right, I will not look for it and I will not attempt to get it from the Obturator, I am not skilled enough to attempt that”.  It’s out there now, the one thing I feared the most was just said out loud and not out of my mouth but from the one person I never wanted to hear it from, my surgeon.  

I sat there, mouth open, thoughts scrambled, not sure what to do next…I think I said something to the effect of, “So now what”? My surgeon said he is pretty sure I have nerve damage causing the extreme pain so he has sent a letter to my Dr stating we need to get on board with “pain management” now. Are you saying I need to be on NARCOTICS now? Yes…Oh, but I’m not sure that’s what I want…well, it you want the pain to subside this is what you need to do…hmmmm…not sure what to do with this tidbit of info…I’ve parked it somewhere in the recess’ of my brain for ow to be retrieved at a later date.

So what about the reconstruction surgery we had talked about doing seen as my original problem is now worse than before the THREE bladder surgeries…Surgeon says to me, “we will re-visit that issue in the fall”. It was very apparent at this point that he was finished with the conversation and I was being dismissed. Well, I was not done yet and I sat in that chair and made it very clear I wanted more answers, I was not going to be dismissed until I felt ALL my questions were answered, to my satisfaction. Bottom line is at this point there is nothing more he can do for me other than offer drugs and when the Mesh does migrate again, then we will go back in and take it out. Oh, you think you will huh…well I think MY plans are different, in fact I am DAMN sure they are.

I think back to the day this all started, Dec 2009, and wish I had researched my options more. I am the first person to always say I don’t live with regrets, everything is a “life lesson” and now I had to eat my own words because the MESH WAS and will always be a huge regret in my life. Yes, I can help other women, I can advocate and educate until the cows come home but it will never give me back what I so dearly want, my life, pre-surgery.

I went from having a “routine” operation to a life that is like a maze, you just keep going around in circles never quite knowing where the end is or if there is an end. I feel like I am chasing the elusive “pot of gold” at the end of the rainbow and yet it is not the gold I want, it is just my pre-mesh life.

Do I give up, HELL NO!!!! I am too damn stubborn for that…that is one of my most endearing qualities about myself that I pride myself on, you can knock me down, kick me to the curb,  stomp on me but you will never stop me from fighting, from digging deeper into my soul to *fix* this. That is just who I am and I am more stubborn now than ever before because I have my beautiful Lily to chase around and laugh and play with. Lily is my reason for getting up every morning and fighting through the day, I love her so much and she is such a shinning bright star in my life.

 Am I still mad, you bet I am and interestingly enough it is when I am this outraged that I do my best work! I have already started looking for “new” options…this is not the end, I refuse to live the rest of my life like this, I will not be discarded and tossed aside. I just need to get my wits about me after that apt and then I know I will start researching whats available to me. It will take time and I will get frustrated, angry, sad, tired, but for each of those moments I will look at Lils picture on my table and know that I have to find a way to fight through this so I can be apart of her life as the hands on Nana I have always envisioned I would be and I WILL be that Nana, mark my words….

Out with the MESH Diane and in with the new Diane!

 

 

 


7 responses to “Dont even try to tell me there’s nothing else because I refuse to believe that….

  1. Lynne Marie says:

    Well said. I hope you can find someone to remove the rest of the mesh. Hugs, Lynne

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  2. dawn says:

    Awesome! !!!!!!!! I will follow you! Let’s go on the attack ….

    Like

  3. Betty says:

    I hope you find a good surgeon who will remove this .
    A uro gyn who knows what she or he is doing. On tvt-no.org (site and FB) you can ask for names of better surgeons. Mine was removed completely but for thetabs in Providence RI by a uro gyn surgeon affiliated with Brown Medical School.

    Like

    • Hi Betty!
      I live in Canada and our options with skilled surgeons are very limited here. I am on Facebook and all the mesh related sites but not tvt-NO for personal reasons.
      My surgeon is a uro/gyne so its time to find a new one!! …I have all the resources as Noreen and I founded and administrate the “Medical Mesh Complications Survey” site. Thaks for your input though! Much appreciated….

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    • Hi Betty!
      I live in Canada and our options with skilled surgeons are very limited here. I am on Facebook and all the mesh related sites but not tvt-NO for personal reasons.
      My surgeon is a uro/gyne so its time to find a new one!! …I have all the resources as Noreen and I founded and administrate the “Medical Mesh Complications Survey” site. Thaks for your input though! Much appreciated….I also have my own BLOG page on FB at: Posts from my 3 Blogs for you to enjoy”….

      Like

  4. Susan Stone says:

    I read your blog and have the erie feeling that it is me you are writing about as I feel exactly the same physically and emotionally. I had a 2″x12″ piece of prolene mesh implanted for a POP (2010) and right from the get go I couldn’t live with the discomfort it caused me. Unfortunately I did not have informed consent for this procedure and was not informed of any possible adverse reactions. The regret and anger is undesribable. Just over 5 months later I could not stand it any longer and had it removed. It caused so much pain in the bowel and baldder and following removal I had a new type of pain to deal with. My whole abdomen, from hip to hip and from my waist down has terrible nerve pain and nobody seems to want to get involved. I have had so many problems since both surgeries with little hope of ever returning to “me”. I can truly say “I feel your pain” and like you I have been a positive fighter and some how I will get this resolved. I could go on forever as to the pain, the complications, the lack of medical support, the mistakes and the fustration it has caused in my life. If I can be of any help or support or can answer any questions please do not hesitate to contact me.
    To brighter days,
    Susan

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    • Hi Susan,
      Thank you for your offer… I think we all have these feelings at some point or another during our mesh journey’s. Aside from my BLOG Noreen and I founded and administrate a sire called: Medical Mesh Complications Survey…Please take the time to check it out!! I know one good thing that has come out of this is the wonderful friends I have made along the way! We will fight until we win! my motto: “Today I challenge you to embrace the people in your lives, embrace who and where you are and embrace in the knowledge that you do not walk alone…Our collective voices will be heard…there is power in numbers… ♥ ♥ ♥
      I also have my own FB page called “Posts from my 3 Blogs for you to enjoy” Have a look!

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