You are not alone

Once again another email this morning reminds me to keep this blog from disappearing into the blog archives.  If I can help one woman, it is worth the effort of writing.

This woman is like many.  Young!  At age forty, she cannot live normally any more because of constant pain.  She cannot have sex like a young woman should because of constant pain.  She is sad and feels helpless and angry about her situation and wishes she had found my blog before she had bladder sling surgery in February of this year 2011.  Sadly, she didn’t, but if she did, she could have asked questions of her doctor and demanded answers or walked away.

If you find this blog before surgery, contact me and I will listen to you and let you make your own decision whether to go through with it.  I am not here to tell you what to do, only to listen and help.  If you find this blog and you are going through your own Hell because of having this surgery, contact me so that I can keep trying to get the word out that we are NOT few and far between as mesh companies would like us to believe.  We are many, battling on through a fog of pain and sadness.

If you have to have surgery for another reason such as hysterectomy, rectocele or other prolapse, you will probably be told of this surgery at the same time.  Please don’t do this surgery as an add on.  Many of us have done it including me.  I needed rectocele surgery and all of a sudden found myself having bladder sling surgery at the same time.  You can have the surgery you need and leave bladder sling surgery alone.   Now I wish I could take this surgery back and just had rectocele repair done, and I am not alone.

So far three women have contacted me before they had the surgery and were shocked at what could happen to them.  None were told of these complications.  No woman who has contacted me since I began this blog has ever said that she was told that complications could arise that would be devastating to her living a normal life, free of pain.  I wasn’t either.

I have said before that this surgery is like playing Russian Roulette.  None of knows who will get the bullet.  If you have just found this blog and are feeling sad and lonely because of how it has changed your life for the worse, contact me and I will be here for you.  Sometimes just typing it out on a keyboard releases some of the pain and anger.  I can’t do a lot other than hand out advise, people to contact and listen to you, but I am here.  I care.

8 Comments

  1. adrianne mcgowan

    on monday aug 15th i went to see the urologist because i was concerned with my coughing and sneezing leakage and am going to get a total hysterectomy and was wondering if i needed to get that fixed too ?
    the urologist said to me if i wanted the urgency/frequency fixed or the leakage with the coughing and sneezing? which bothered me more ? he did a pelvic exam . iam 601/2 y.o. he said i would need a bladder sling for the incontinence and for the urgency frequency would be treated by medications with side effects as blurry vision constipation etc. i left there not knowing if i really needed it or if it was an elective ? or did have prolapse ? on tv i noticed some warnings…about transvaginal mesh and bladder slings…has got me worried if i need to not have this done and just use a pad for my sometimes leakage ? i was worried with the total hysterectomy everyhing would drop and have no support ? would a bladder sling help that ? can you help to advise me ? to do only the total hysterectomy and not the bladder sling ? do i need some sort of support to hold the bladder up or something else ? iam not sure if i ought to do this for the little leakage i have ? i think i need to know more answers if i do have prolapse or not ? now or after my total hysterectomy ???? i saw july 2011 fda warned about the mesh and bladder slings ?? is this true ? what other side effects and internal injuries should i be aware of ? having second thoughts about the up lift of the bladder sling? thank you ! hope to get an reply from you .

    Reply
    1. lavalinda

      Every time I hear from a woman who hasn’t had this surgery done as yet, I am gratified. This because I spend so much more time on the phone crying with those like me who found out too late. I now hold nothing back. I will yell, or scream “Don’t do it”. There are so many variations of side affects according to how your body will react. Even those women who think it was the greatest thing they ever did, find out later, even years later something has gone wrong. I just talked to someone who had it done in 2006. All seemed good until recently when the mesh began giving her pain and it is coming through her vagina. Now she is scared and belongs to the same club as the rest of us who are victims. Not a club we wanted to join. Go to see someone who will offer alternatives to slings. Research, research, research. Don’t just trust doctors. They are often persueded by money from mesh manufacturers. You are worth more than a life of pain. Check out my vdeo on the blog I wrote in July 2011. Mesh can take your dreams away. You will see that I am now a shadow of the woman I once was. I have a long fight to get well. Do what you have to do to fix your real problems. A little pee is nothing in comparrison with a life of pain. Pads are cheap and won’t leave you crying.

      Reply
      1. 41 and scared

        I’m curious if you’ve heard from more women. I’m 41 and had a hysterectomy at age 25. At that time, the dr never told me about bladder issues I would have later on. It wasn’t by choice, I just wish I would have known this was going to happen. My bladder has dropped and tilted, causing incontinence, but in the last two months, I have constant pain and spasms that feel like labor pains. Now I’m told I need the bladder hammock surgery. I didn’t question it and scheduled an appt with the surgeon that will be next week. I was going to have it done ASAP, but now have questions and concerns. I’m hoping they’ve improved the procedure?!? So I won’t have this constant pain. I’m now frightened after reading the blogs!

        Reply
        1. lavalinda

          You DO NOT have to have this kind of sling in you. No they do not tell you about other choices and the reason is they do not know how to do a bladder repair without using a mesh sling. There are a few doctors who do any more. These days they are all trained to open a packet. Dr Raz at UCLA does it and Milkos and Moore does it using laparascopic surgery. Use key words to help your search for a doctor. The procedure is called the Burch Procedure which uses stitches to hold the bladder up and I know women who had this done 40 years ago. You can also have a sling made using your own fascia. Get in touch with Dr Raz office and ask. Never let them tell you that the new slings on the market are better and do not have complications. I was told that when I had mine in March 2010. http://www.miklosandmoore.com/lap_proc3.php Also look up the HERS Foundation which is an organization dedicated to helping women be sure they need surgery because of the problem of falling organs. They should know of doctors who do this. The lady who runs it always answers emails and they have a FB page.

          Reply
  2. Patricia

    Hello, I had an hysterectomy in March this year 2012. I was not told that they did anything but the hysterectomy. I am having pain just like my freind who had the sling. I asked my surgeon if she put any mesh or something in me because I can feel something but she said no she did not. I lost my job and insurance so I can not go to another doctor. I would like to know how I could tell for sure. I have pain in my side toward the back and I am having trouble with my bowels which I never had before. Also when I have to urinate sometimes I have to move to one side or the other in order to let it flow. It feels strange when my bladder is full. I know something is wrong but she says nothing else was done. My stomach was cut from my naval to my pubic line for the hysterectomy. I healed really good but I am feeling pain in the area of my badder and on my right side at my pelvic bone or maybe a muscle. I am in pain everyday. Thank you, God Bless You and hope to hear from you soon,

    Reply
    1. lavalinda

      The sure way you will know is to go to the hospital records department and ask to see you operative report and your nursing notes. If you do not have money, then tell them you do not and cannot purchase them, but you need to check these records. I wrote a blog about where to look on these notes and I will send you the link via email. Doctors do not keep these records but the hospital must by law. You do need to know this for sure.

      Reply
    2. lavalinda

      The blog I wrote is in the archives titled Report to the FDA, on January 14th 2011. It will give you where to look for the sling name and number. If you have any problem please contact me again. I care very much.

      Reply
  3. Squirrel

    I had the bladder sling surgery on 4/4/13. Wish I would have seen this blog before and maybe done a little more research instead of just listening to my doctors. In October of 2012 I had a hysterectomy and my leaking became horrible as did my pain. The pain they can’t figure out but the leaking was quickly diagnosed and determined to be repairable with the sling. Well since the surgery I was back in the hospital with fever and extremely sick but nothing was wrong (until three days later when I couldn’t breath and began a course of antibiotics for a respiratory infection they said I didn’t have (thank Goodness I never finish a full course and hoard them)). Having weird feelings such as not having to pee, burning and stinging when I do pee, and bladder spasms. Plus not to mention the feeling as if I am not peeing enough. Not to mention a severe stabbing pain when I turn a certain way and cough. Now I know it is early on but I was basically doing cartwheels two days after my hysterectomy so tell me why when they cut something out I felt so much better. Now I feel run down, nauseaus, and of course the pain (which is gonna have to be tolerated cause the pain meds are really making things worse). Granted shouldn’t be self-medicating myself with antibiotics but when the dang hospital sends you home with a fever fluctuating between 100 and 102 days after having surgery with severe pain, difficulty breathing, and nausea what are you to do. At this point I am just wishing I could have taken it back and not done it (wishing they would just go back in and take it right out cause honestly I don’t think my body is accepting it). Also, to add to my issues now I am getting a Yeast infection…Yep this whole experience would have been much better had more talk been given about it.

    Reply

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