two years post op today and still struggling

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Originally Posted by Moonbeam3 Hi Laurel, I am so glad to hear from you and I'm you got to get away on mini vacation. The road trip does sound uncomfortable, but YOU made it! yeah!!! Are you feeling any better? I was given two NEW names of urologist NOT urogyno, apparently my insurance doesn't cover this type of specialist. Which really bites, I had my hopes up to this one specific hospital in my area. Which is a teaching hospital who specialize in "BOTCHED SURGERIES, GONE BAD"! LOL Gotta laugh, or ill cry all day. But anyway, I don't want a urologist, I need a specialist (urogyno), but during all my research I did find out a claus under my insurance, that if I'm not receiving the proper care of seeing the proper doctors to treat a specific problem, I can change HMO during the year, without it being open enrollment. So now I have to call the insurance company and talk to them and explain my case, which they really should be very aware of because I've been hospitalized for surgeries and procedures 7 seven times in the last year alone. My profile with them is probably 1,000 pages or something. But that does give me another direction to go. I am NOT going to just sit by and accept whatever they give me, that is what has gotten me into this awful situation. I'm going to get what I need!!!! One way or another! I'm still battling a kidney infection and I too swell so bad at the end of the day, especially this week during our VBS at church, I was actually having to wear sweat pants and big long tshirts, so I didn't look so pregnant. I even had a girl I go to church with RUB my belly, like I was pregnant, she meant no harm in it at all, she was trying to "feel my pain", but it made me feel very uncomfortable and I didn't say anything to her, because I didn't want her to feel uncomfortable. Everyone at my Church knows what I've gone through and what I am still going through. Wonderful group of women, who pray for me constantly. But this site is where I vent the most because I know that everyone who I actually speak with has had same symptoms as I do. You sisters understand and REALLY feel my pain. We just can't give up or give in..... there will be a day when we are all pain free and living somewhat of normal lives. I know it in my heart. This is not something I CHOSE to go through, this is something that just happened and I am going to try my hardest to stay positive and keep moving forward. Sounds like I'm trying to convince myself? LOL Well I am. I'll keep posting when I find out anything new. Please let me know how you are feeling too...And anyone else who is reading also..... Lots of Love to my SISTERS!!!! Christy

Hi Christy,

Wow. I can't believe all the surgeries that you have had in the last year. Were they all because of the botched one? that is just terrible. Have you had any luck with the insurance companies and finding a urogyn. Insurance companies really bother me. They take control of your health and then you can't get to the dr or treatments that you really need. I can't tell you how many times that has happened to me. It is totally unfair. I really need to find a uro/gyn also. I go to a regular urologist and I like her but I don't think that she is doing what I really need. This fallen bladder is horrible as well as the rectocele and they both really needs surgery but she refuses to do so until the constipation resolves. I think it is time for me to seek another opinion. One thing I failed to do before my hysterectomy. I won't make that mistake again. I am the same as you, it is important to keep a sense of humor in your life otherwise you would just cry all the time. I have started doing yoga again because I have been so stressed out with everything. It helps to relax me some. I have to go to a headache specialist on Tues because since the hysterectomy I have been suffering with terrible migraines. I don't know if the headaches have anything to do with the menopause. But I was on a migraine med that just wasn't helping so this headache specialist does botox treatments that are supposed to help. I sure hope they help. So between the bladder issues and bloating, IBS migraines and fibromyalgia I'm about having as much fun as you are. lol but the one good thing about the surgery is that I have met so many great women (like yourself). Let me know how you are doing, and all of the other sisters out there too.

Big HUGS to all the sisters reading here!!!!

Laurel

I think my IC has decided to rear its ugly head again. I am having spasms big time and hard time emptying my bladder. Just moved so have new urologist. I know what you mean about missing the old you. I do too. Especially today. I now have fibromyalgia since the surgery. I have to keep repeating it will improve. Hopefully today or tomorrow.

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Originally Posted by lsavril Hi Christy, Wow. I can't believe all the surgeries that you have had in the last year. Were they all because of the botched one? that is just terrible. Have you had any luck with the insurance companies and finding a urogyn. Insurance companies really bother me. They take control of your health and then you can't get to the dr or treatments that you really need. I can't tell you how many times that has happened to me. It is totally unfair. I really need to find a uro/gyn also. I go to a regular urologist and I like her but I don't think that she is doing what I really need. This fallen bladder is horrible as well as the rectocele and they both really needs surgery but she refuses to do so until the constipation resolves. I think it is time for me to seek another opinion. One thing I failed to do before my hysterectomy. I won't make that mistake again. I am the same as you, it is important to keep a sense of humor in your life otherwise you would just cry all the time. I have started doing yoga again because I have been so stressed out with everything. It helps to relax me some. I have to go to a headache specialist on Tues because since the hysterectomy I have been suffering with terrible migraines. I don't know if the headaches have anything to do with the menopause. But I was on a migraine med that just wasn't helping so this headache specialist does botox treatments that are supposed to help. I sure hope they help. So between the bladder issues and bloating, IBS migraines and fibromyalgia I'm about having as much fun as you are. lol but the one good thing about the surgery is that I have met so many great women (like yourself). Let me know how you are doing, and all of the other sisters out there too. Big HUGS to all the sisters reading here!!!! Laurel

Hey Laurel,
Yes all of this has been from ONE botched hysterectomy, which was supposed to be very routine and easy....BUT five hours after first surgery, my family was notified that my bladder was lacerated during surgery (two inch laceration), which was done vaginally, but due to laceration had to finish abdominally...there was not a urologist at the hospital and he (gyno) said he couldn't reach one by phone and so he had to try and repair it.... He did do his best, but his BEST wasn't good enough and over a year later and 3 surgeries later, I'm still leaking urine out of my vagina....

I know that this has happened for a reason, one that I have yet to understand, but I too have met some awesome women, who have given a complete and total stranger compassion, support and so much encouragement. I feel so blessed at times, I'm overwhelmed!

I am dealing with insurance and not getting anywhere, this is such a slow process, but I probably need this time to regroup emotionally and physically...I mean to prepare for the fourth surgery is frightening. To know what is already ahead of me is depressing. I had so prayed that this last one, was "THE ONE" but I have to keep reminding myself that in the "BIG" picture of things, I will eventually get fixed, this isn't happening in my time.

I haven't tried yoga, please let me know how it is working for you..I am at the point of trying anything to relieve stress and pain. My kids want to do so much this summer, go to the beach, water parks and picnics, hiking, things we used to do all the time. They are wonderful children but they are at the point where they are making comments like "I hate that Doctor" and I have to correct them and tell them, that God has his hand on us and this has happened for a reason, that this is HIS will and we shouldn't hate anyone.....It's just so sad that I'm really not the only one who is going through this, this has affected my family too. And that breaks my heart!

thank you for listening to me and I couldn't make it through this without my sisters! Just knowing that I'm being heard is uplifting. I am sorry you are having to deal with migraines with all the other issues you got going on. WOW, my heart goes out to you!! Do you take any pain meds?

I'll keep you posted on what I find out about the insurance and I'm trying to live as normal of a life as I can. I take my pain meds and grin and bear it for now.

Hugs and Love to you all.....
Christy

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Originally Posted by zenyatta5 I think my IC has decided to rear its ugly head again. I am having spasms big time and hard time emptying my bladder. Just moved so have new urologist. I know what you mean about missing the old you. I do too. Especially today. I now have fibromyalgia since the surgery. I have to keep repeating it will improve. Hopefully today or tomorrow.

I have the same problem not emptying my bladder. Did you have that before. I did. But now it is much worse. My Dr. Taught me how to self cath. I haven' it as of yet because I am afraid of infection. I do take a medicine called bethanechol to help empty. It helps a little. I too developed fibromyalgia after my hysterectomy. I wonder if there is a connection. Do you take anything for it. I took a few meds but. couldn't't tolerate them. I hope you feel better. Hugs

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Originally Posted by Moonbeam3 Hey Laurel, Yes all of this has been from ONE botched hysterectomy, which was supposed to be very routine and easy....BUT five hours after first surgery, my family was notified that my bladder was lacerated during surgery (two inch laceration), which was done vaginally, but due to laceration had to finish abdominally...there was not a urologist at the hospital and he (gyno) said he couldn't reach one by phone and so he had to try and repair it.... He did do his best, but his BEST wasn't good enough and over a year later and 3 surgeries later, I'm still leaking urine out of my vagina.... I know that this has happened for a reason, one that I have yet to understand, but I too have met some awesome women, who have given a complete and total stranger compassion, support and so much encouragement. I feel so blessed at times, I'm overwhelmed! I am dealing with insurance and not getting anywhere, this is such a slow process, but I probably need this time to regroup emotionally and physically...I mean to prepare for the fourth surgery is frightening. To know what is already ahead of me is depressing. I had so prayed that this last one, was "THE ONE" but I have to keep reminding myself that in the "BIG" picture of things, I will eventually get fixed, this isn't happening in my time. I haven't tried yoga, please let me know how it is working for you..I am at the point of trying anything to relieve stress and pain. My kids want to do so much this summer, go to the beach, water parks and picnics, hiking, things we used to do all the time. They are wonderful children but they are at the point where they are making comments like "I hate that Doctor" and I have to correct them and tell them, that God has his hand on us and this has happened for a reason, that this is HIS will and we shouldn't hate anyone.....It's just so sad that I'm really not the only one who is going through this, this has affected my family too. And that breaks my heart! thank you for listening to me and I couldn't make it through this without my sisters! Just knowing that I'm being heard is uplifting. I am sorry you are having to deal with migraines with all the other issues you got going on. WOW, my heart goes out to you!! Do you take any pain meds? I'll keep you posted on what I find out about the insurance and I'm trying to live as normal of a life as I can. I take my pain meds and grin and bear it for now. Hugs and Love to you all..... Christy

I am so sorry that your hysterectomy had such complications. I have heard of women having their bladders lacerated during the surgery. I think it should be mandatory that their is a urologist present during a hysterectomy in case a problem arises. There was one present during my surgery because they put these illuminating stents in my ureters to try to prevent nicking the bladder and ureters. So the urologist had to put the stents in. But of course I did get infections because of the stents but it is much better than a laceration. You poor thing.

I am a truly believer that everything happens for a reason even if we don't know why.

My surgery has affected my whole family to. Everything from intimacy to doing things with your children. It is hard for me to sit in a car for too long and I am not supposed to go in pools and the ocean because of constant bladder infections. And your kids just want their Mommy back the way you used to be. I always feel bad for my kids too. I just can't do everything that I used to. But I did do my best on my vacation. I was determined to do what I could for my children.

I went to the headache specialist today and he said I am a candidate for the botox treatments. so I go on July 19th for that of course as long as the insurance approves it. I have <> but they can be tough on approving things sometimes. So we will see what happens.

The yoga does help some with my stress. Especially some parts of it is meditative. It is worth a try. At this point to feel any better would be nice.

Let me know what is going on with your insurance and I hope you feel better . I am always here to listen anytime.

Big big Hugs to you.

Laurel

I didn't have problems emptying before the surgery. this is a recent problem. And believe me, it is not one I like!! I wonder if my doc nicking my bladder is part of the problem. He said it was minor so I forgot about it. I will never know. Funny how one post can bring back memories. I tried yoga and unfortunately, also made it where I couldn't even walk. And this is really hard in all ways. I feel some days like I am so emotionally spent. I know it has led to other problems. I am really struggling with the bladder thing though.

Ladies I really feel what you going through. In each post are things I totally relate to and am dealing with myself. It is very difficult dealing with these terrible issues and so much pain and it's almost a year post op. This surgery effects every aspect of my life also, intimacy, work, and family life. I regret this decision every day and wish I had listened to my inner voice which screamed at me not to do this
Still trying to stay positive and be a good mom/girlfriend/ daughter so my family doesn't look back and remember me being sick all the time. And I do have hope that one day it will get better.

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Originally Posted by sugarandspice Ladies I really feel what you going through. In each post are things I totally relate to and am dealing with myself. It is very difficult dealing with these terrible issues and so much pain and it's almost a year post op. This surgery effects every aspect of my life also, intimacy, work, and family life. I regret this decision every day and wish I had listened to my inner voice which screamed at me not to do this Still trying to stay positive and be a good mom/girlfriend/ daughter so my family doesn't look back and remember me being sick all the time. And I do have hope that one day it will get better.

OMG!! I did the same thing. My inner voice was telling me not to do the surgery and I almost backed out the day of the surgery. I get so angry at myself sometimes for not listening to that inner voice. It is like the saying goes " listen to your gut instinct ".

I think trying to have a positive outlook is all we can do right now for our loved ones and ourselves. Even though it is at times very difficult to do.

The women on this site really help me to stay positive and focused. Thank you sugar and spice and all of the other hyster sisters.

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Originally Posted by zenyatta5 I didn't have problems emptying before the surgery. this is a recent problem. And believe me, it is not one I like!! I wonder if my doc nicking my bladder is part of the problem. He said it was minor so I forgot about it. I will never know. Funny how one post can bring back memories. I tried yoga and unfortunately, also made it where I couldn't even walk. And this is really hard in all ways. I feel some days like I am so emotionally spent. I know it has led to other problems. I am really struggling with the bladder thing though.

I am sorry for your pain and suffering with your bladder problems. I know first hand how horrible it can be. Did your dr. ever mention medication to help your bladder empty? the not knowing what caused the problem is so frustrating. I really hope that you feel better soon. I am here to listen anytime.

The doc said that the Ic is causing my muscles to be so tight that they can't relax and empty. Kind of like carpal tunnel where your muscles tighten up. So she wants me to do a device called the Interstim. I have been on the fence about this but this week has been really bad.
I have had times I regret this surgery but it can't be undone. I was beating myself up over this. Just going nuts thinking how could I do something so stupid? But now I am coming to terms with this and am going to be positive. I hate having to see docs where others don't have to. But if I don't I end up in the hospital. Not really a choice so I learn to enjoy my drives to see my docs. Either that or go nuts.