Fistula's cont...........

Hello, all!


Well, unfortunately, I have officially joined the fistula club today.

I saw my gyn today and she gave me the news. She will call me tomorrow and let me know when my appt with the uro/gyn is. She kept telling me how sorry she is and all it did was make me so mad I cried! I know you girls know how I feel-I am more mad right now than scared My bacon is FRIED!!!!!(I am scared, too)

I will write more tomorrow with questions for my angel experts. Thank God I have you!

Louise

I see we have a new thread.

Gee, where to start??? I have known for 5 months that I have a cyst on my left ovary, my old dr and I werent seeing eye to eye and I quit seeing him. We were taking the "wait it out" approach with the cyst. I asked on numerous occasions just "how long" it was safe to wait it out? At that point he decided that I would benefit from anti-depressants. He tried to convince me that it was all in my head...I know better. I decided it was time to move on to another dr. I went to another gyn and told him which office I was transferring from....Big Mistake! Before I had ever got to the first appt. with this guy, he had already talked to my old dr and without ever so much as looking at me..gave me a diagnosis and told me that I should continue to wait it out. Turns out that my old dr had told this new guy that my cyst had already resolved itself which according to my last ultrasound records, it still measured 4.9cmX4.2cm NOT including the ovary itsel,f that was JUST the cyst. hmmmmmm? So this guy sent me packing! (and between the two of them..destroyed my faith in dr's)

I am still having quite a bit of pain on my left side but have been so busy going between the GI dr. with colonsoscopies, endoscopies and barium x-rays.. and then the urologist with the urinary problems that I just havent been up to seeing yet another dr! After no relief of ANY of my problems and upon the insistence of one of my close friends I finally packed up my records and went out of state to find a new gyn. Well......let me tell ya!...that was the BEST thing that I have ever done! I went to see him late last week. He was able to feel the cyst via a vaginal exam and is sending me next monday to have an ultrasound to find out what size it is now, I am thinking it is larger because my old dr was not able to feel it.(or so he said) It turns out that alot of my pain is being caused by a femoral hernia that is going to require me to go back in for surgery. My new dr is QUITE certain that my bowel as well as my urinary problems are being caused by the cyst and hernia and once those things are taken care of surgically that I will probably no longer have problems in these other areas. He also feels like my hernia has been caused by my abdominal muscles stretching to accomodate this cyst. What a relief to finally have some answers!!! I go next week to have the US and to see my dr's surgical partner to confirm the diagnosis and for them to come up with a surgical plan and then I go back to my dr on Dec. 2nd to make a surgery date.

One more thing......I have been BEGGING for some help in the hormone department...to no avail, I have all the classic symptoms of lack of testosterone, severe fatigue, no libido whatsoever and low mood, He put me on Estratest (combination estrogen and testosterone) and WHAT a difference, I feel like myself again and have energy to spare. The other dr refused hormones because he said "you have an ovary". New doc says "yeah..you have an ovary but it's almost the size of a tennis ball and therefore obviously not functoning or at least not well".

Sorry for the book but wanted to fill ya'll in on what has been happening with me.

Congratulations Ariel, I know it is wonderful to have all that stuff out AND no leaking
Louise, Im am sorry that you haved joined the club, but you couldnt be in a better place.
Barbara, Im glad to hear that you are doing so well and MaryJulia, as always...Thanks for your never ending thoughtfulness.

Goodnight Ladies................ and 's
Dawn

Good morning all you strong and wonderful women out there!

It's Tues morn and I'm finally posting...it's been hard to get on the computer, it's upstairs and I'm trying to not do the stairs too many times per day, my wonderful 16 yr old has been sick (she was out yesterday and it gave us some time to spend together), and the blasted suprapubic catheter has been giving me a little problem, but it is better now.

The catheter was squirting like a fountain on Sunday. I ran my hand up my belly and it looked just like a little boy's peeing. I called dh and said "take a look at this"! Ofcourse, it was more visual info than he wanted to see, so he just turned and ran. I laughed, but then got upset because I knew this was not right. I called the doctor's office and got my favorite resident, he told me to come in yesterday and I did. They checked everything, put back in the FOLEY INDWELLING CATHETER to make sure my bladder is getting drained completely and told me not to worry so much. I have to go next Monday to see how things are progressing and maybe they will take out the Foley. It was wonderful without it and not so good with it back. I can stand it, though.

AND BEST NEWS - NO LEAKING FROM THAT PLACE!!! What a wonderful feeling. Still lots of messy stuff, but no urine. I'm cautiously optimistic.

ARIEL - I'm am so thrilled for you! I don't know how you hung in there like you did....your trials and tribulations were so much more than mine. I'm so glad we found each other and were able to support each other through this mess. Please take it easy, I think you tend to overdo. I know it's hard, my house keeps getting more and more messy. I'm trying to let it and feel eventually, someone, will pick up something and give the dog a bath.

Anita - I was most stricken by your post. My heart goes to you and my prayers. Barbara's post regarding Mayo is how I feel. My Uro practices out of Emory University Hospital in Atlanta and was recommended by Barbara's doctor in FLA. Best thing that ever happened was me going to the new doctor. Ariel's post was right on also. Get all the info you can. I started a notebook with a calender of dates, all the research info, questions I asked the doctor, my medical bills, all other related material. It made me feel a little more in control of the uncontrollable situation and kept me focused on a timeline.

Everyone else, MaryJulia, Louise (I'm worried about you), Kim, all others I have forgotten to put, God bless you all for your continued support of me. I could not have made it this far without you and the messages. We need to all stick together with this stuff. It is very scary, but like Ariel, Barbara and me, there is light at the end of a long tunnel and the journey is filled with lessons.

Closing for now. Love to all, Joce (Hansolo)

Morning all,

I have done nothing but worry about my surgery. Should I or shouldn't I. I feel like what time I have spent with this dr. that if he did'nt feel like he could do this right now he would say. I may be wrong. But the last time I was in to see him on 10-31 he said he had already started thinking about how to do this and which way would be the best. I don't want him thinking that I doubt him.
Sometimes when a loved one is dying and you know that's what's comming you have time to come to terms with it. It doesn't make it any easier when that time comes but it gives the ones they leave behind some time. Also I think if I reschedule, what if the same thing is still the problem then. You know only God knows when he's ready for someone. Who knows how long he has? Maybe hrs.,days, or months. So unless God steps in and does something I'm going on with it. Maybe he knows what's best is the reason things are still on anyway. All I can do is pray.

Besides all you girls are making me jealous getting better and not leaking. If I had known that this was going to happen I wished I had bought stock in bladder control pads.

Hope everyone is doing ok?


Kim

Good morning!


I just got a call from my gyn. She apologized (again) and told me that she was just calling to see how I was doing. (I told her I've been better!) She said she feels so bad for me, and was thinking about me last night. I know she feels bad, she is a very caring person, but I am just sooo mad at her!

She said she is still waiting on the call from urology, and that she thinks I will be see the gyn oncologists because they have alot of experience in fistula repair. She said i will most likely have a uro-gram sometime in the next couple of days. Did any of you have that test?

What really makes me so angry about this is that I FEEL fine! I actually have had 4 out of the past 6 days almost totally dry. When I was on the exam table yesterday and she inserted the speculum, I felt for the first time the leafing in my vagina-BOY, that was a magic moment! I knew before she even said it that she was going to tell me I had a fistula.

She said she is pretty sere it's on the vag cuff and can be fixed vaginally, but I know they had problems during my hysterectomy with one of my ureters-so I'm not ruling that out.

My dh was so wonderful to me-all I could think of was that the poor man has to go through this with me and it's not fair! I even told him yesterday that I was feeling guilty for having the hysterectomy in the first place-maybe I could've live with the bleeding and pain and not have to put us all through this. Did any of you girls feel guilty?

I am so lucky to have all of you to listen to my rantings! I haven't brought this up to any of my friends yet, they just think I'm having bladder problems. You are a Godsend.

I also was told by my doc that I will not be able to go back to work-I am sooo dreading telling my district manager (who has called me 3 times this week already telling me how happy she is that I will be coming back in 2 weeks!) that I will probably be out at least 2 more months. I will let her know as soon as I talk to the uro guys.

Sorry for the long post-thanks for listening.

Louise

Louise,

I went back to work. I have been working for the last 4mo. It wasn't easy. Had to put up with alot of leaking and changing pads alot. I guess it just depends if you have to or not. I was out of time and would have had to go leave without pay and couldn't do that.

If you can stay at home that's probably the best. And yes I did feel guilty also. I wasn't having that much pain just alot of bleeding. Had to make sure I was at home when my monthly started or I was in trouble. I kept saying I traded one problem for another
But look at the other ladies on this site and how good they are doing now. Keep your head up and things will get better. And remember things like this only happens to the best. Sometimes it's no fun being the best.

Kim

Kim,

Thanks for understanding-it means a lot to me.

I have 24 more weeks of disability I can take-but that doesn't mean my boss is going to be happy with me. This probably means I will get transferred when I do go back to work, which doesn't make me feel too good.

I am trying really hard not to wory about the things I have no control over, but it's my nature to be a worrier! I want to be positive-but it's hard!

Hey, I just got a call from the urologist's office! I have an appt for a cystogram and IVP on Thursday morning. Scared would be a good description of how I'm feeling! Your prayers are appreciated!

Louise

Hey Everybody,

I just got a call after lunch from my dr's nurse and the surgery has been cancelled. So disappointed but I understand. His dad is worse today than yesterday and he asked that all surgery's be cancelled. It has been set up for Dec. 4th. I know I asked for whatever was the best and this must be it. Well one good thing is that I will get to go to the cabin for Thanksgiving. Well everybody take care.


PS How do you get the smilies to go to your post.? Maybe my computer just don't do it. I typed in the names under the pictures because I didn't see any codes and I tried it and couldn't get it to work.

Kim

Morning ladies - it's Joce and I'm feeling a little stronger today. I'm in better spirits so all of you that have pending procedures just know that there are better days ahead of you. That is hard because I know that I was mired in the depths of dispair. The past 3 months have been awful. I'm with you all.

Kimberly - Dec 4 is a great date. I'm sorry that surgery was rescheduled, but hang in there. Hopefully by then things will be more settled with your doctor and you may be in better shape physically!

That week will be a busy week - MaryJulia's stent removal on 12/3, Kim's surgery 12/4, my suprapubic catheter and cystogram on 12/5 (I think?). There will be lots of good news to share.

Louise - the IVP and cystogram are not painful. The only thing with the IVP is a IV in your hand/arm and, even though I haven't had the cystogram yet, Barbara has and made it through with flying colors. My fistula was at the vaginal cuff which is mid-way to the bladder. Vaginal repair is optimal and is much better than an incision. I understand about friends, etc., thinking you just have bladder problems. I have to constantly remind everyone just how serious this is. Don't want to be over-dramatic, but let's give credit where credit is due!!!

I'm staying house bound, no driving, in my gown most of the time, and no housework! The clothes need washing and the floor needs cleaning, but I'm delegating those this weekend to my dh and wonderful daughter. They begrudgingly will do it. Don't get me wrong, they really want to, they just have a funny way of showing it! I love them both.

MaryJulia - I'm starting to have some bladder spasms. I've been lucky and haven't experienced too many, but last night I was in pain, took the ditropan XL and that seemed to ease the spasm. I'm feeling O.K. this morning. Hope you have found relief. B&O sounds like a solution, just keep your hair combed, wouldn't want anyone to think you'd been hanging out in an Opium den!

Anita - are you O.K.? Please post an update.

Dawn - glad you are seeking help elsewhere even though you must go out of state. Dec 2nd will be here soon so you can get that surgery date set!

Regarding the smilies, host Suferbabe (I think) saw my request on how to get them and she graciously put the program onto my screen. She has been wonderful support to us fistula sufferers!

Closing for now. Love and best to all, Joce (aka Hansolo)

To use smilies in your posts.

Go to your "Control Panel" top of page.
Choose "Edit Options" go to (almost) bottom of page and make sure you have chosen "yes" in the "UsevBCode......" box. THis allows you to send and receive smilies.

Also at the bottom of the page where you write your reply message.....make sure you do not have "disable smilies in this post" cheked.

That should do it.
Dawn