I feel your pain! I, too, bleed so many days and it's just clots now most of the time. The older I get the worse it gets and the cramps are like out of a horror movie!!! All I can do is lay down and hope the meds kick in soon. Even the meds do not help any more with the pain most of the time. I've started on the patch to stop my periods, but due to a complicated brain tumor which is hormone related, I am not able to go on anything for very long. I really shouldn't be on the patch. (Micro Adenoma is the name of the brain tumor that I have.) Now after being on the patch for only about three months, I just bleed thru that too. They cannot give me anything stronger for fear that my tumor will begin growing again. We just got that thing under control to where it has begun shrinking a little and has halted in it's tracks. For that, I am very grateful. But if I was to have a hysterectomy, I would have to be given hormones and I can't take hormones with this tumor. I'm in this never ending vicious cycle of live with the pain of the monthly cramping and god-awfull bleeding, or have the ablation and possibly cause more adhesions. I am at my wits end. I've been up a good part of the night worrying about what to do. I've got a call into my doctor about possibly delaying the procedure. My gyno and my endocrinologist have both said that this is the safest method for me because it will stop the excessive bleeding and cramping and will not stimulate the growth of my brain tumor, and they've considered my adhesion history into account.....what to do, what to do??? I feel like crawling up in bed and just crying. I don't understand why we have to suffer like this. I have pain every day from the adhesions and now I don't want to think about getting more adhesions from this. I'm scared! I knew that there are always risks when you do a procedure, but if I just didn't have the tumor, I could go to Germany and have my hyst and the adhesions taken out all in one surgery. Helen has been helping me with tons of good info on the different things about Nova Sure and also the adhesion growth. I guess that I should have told everyone that I suffer from this stupid brain tumor too, but I just didn't see the need to mention it until now. I'm so sorry for going on and on. I don't know what to do and I'm scared to death to do anything. I'm scared about the pain after the procedure....I can't take anymore pain!!! I feel like I would just die if I had to feel any more. Clare forgive me for rambling on and on. I just have so much on my mind and I'm trying to do what's best for my situation but it's so hard. If I make the wrong choice, it's not just me who has to live with it. I'm engaged to be married in June and my sweetie is so kind and gentle. He's the one that has suggested us going to Germany for the surgery....it kills him to see me in pain. And I have to think about him and my little boy that can't even put his arms around my waist without hurting me. It hurts so bad that we have a rule in the house now that if he wants to hug mommy, I have to sit down so that he won't wrap his arms around my tummy and sides. That's terrible! He's only 5! He doesn't understand why mommy has to always go to doctor's appointments. He's in Kindergarten in the afternoon and a lot of my appointment, he has to go with me, if they are before he's in school. He's seen much more than a 5 year old ever should. All he knows is that mommy hurts all the time and he can't hug me on my tummy. Mommy can't eat all of her dinner because mommy's tummy hurts. (He even has tried that before....saying that he's got "mommy" pains and can't finish his peas.) I'm sorry for going on and on. I know many of you ladies suffer with more pain than I. I'm just feeling sorry for myself today. I'm very tired and emotional too today. Some of you have suffered much longer than I. I don't know how you've made it this far. I feel like quitting many times, but you all won't let me and for that I'm grateful!
Hope you are having some comfort and forgive me for rambling on and on and crying on your shoulder. It kind of feels good to get it all out though. Thanks!
A new friend, Tonya
>From: anonymous@medispecialty.com (clareS)
>Reply-To: adhesions@adhesions.org
>To: Multiple recipients of list ADHESIONS
><adhesions@mail.medispecialty.com>
>Subject: Re: NovaSure...Is the NovaSure procedure entirely
>safe???.......for Tonya
>Date: Tue, 21 Jan 2003 17:33:23 -0600
>
>Dear Tonya:
>
>In July 2001 (at least my perimenopausal brain thinks it was then LOL) I
>had a Nova Sure ablation performed here in Toronto, Canada. The
>following is what I know about the procedure and my experience with it:
>
>I had extremely heavy bleeding that was worsening and could not be
>controlled by any meds I tried. It was so bad (sorry for the graphics
>here) that I wore adult diapers instead of sanitary napkins, and some
>months I bled as many as 21 days. My blood ferritin had dropped to a
>level that was very concerning, and although I took supplements and was
>healthy overall, it just kept dropping. This went on for many months
>with different clotting agents tried to slow down the flow, until I
>finally told my gyn he had to do something, and fast. The Nova Sure was
>being tried at the hospital here as a pilot test, and I was scheduled
>for a rush ablation.
>
>Ablation is a treatment for extremely heavy bleeding that can not be
>controlled by the bc pill, or as a second choice by clotting agents. I
>couldn't take the pill as I'd had a DVT, and although the clotting
>agents (yes, I do know how dangerous this was!) did help to a very small
>degree for about an hour at a time, there was no way they'd let me take
>a high enough dose to make a difference.
>
>The Nova Sure is a triangular probe that is inserted into the uterus,
>and then a very high electrical current is discharged, burning virtually
>all of the endometrium away. It only takes a couple of minutes, and
>mine was done as a day surgery. The goal of any ablation is to reduce
>bleeding to a tolerable level.
>
>Technically, my ablation was a wonderful success. I have only spotted
>lightly twice since!! But that's the good news.
>
>What were the pitfalls? Well, later that evening I had such pain you
>would not believe. My hubby wanted to take me to the ER, but I wouldn't
>(couldn't) go. It did subside after about 7 hours or so, but man it was
>a bad few hours. My Dr had given me Naprosyn, and of course the med
>couldn't help the pain I was in. Within a day or two I was fine,
>though. I was not put on the IUD (or any birth control), but I know it
>can be quite dangerous if one was to get pregnant. About two weeks
>after the procedure, I noticed that the adhesion-type pain was a bit
>worse, and it has stayed that way to now.
>
>So, my thoughts? There ae two very important things that any woman
>contemplating an ablation should know.
>1) if you are over 35 yrs old, you MUST have an endometrial biopsy done
>prior to the ablation to rule out cancer as a cause of the abnormal
>bleeding
>2) once the endometrium has been ablated, it is very difficult for
>cancer to be detected, even if it develops after the ablation, so you
>take your chances as to what may happen after having the procedure.
>
>Ablation is a new procedure, with no indepth long term studies
>completed. It is usually only effective for an average of two years,
>and there are mixed opinions on repeating them. The Nova Sure is one of
>the newest tools, and it appears to be one of the most successful. BUT,
>it is so new that no one really knows the true complication rate.
>
>I had to have either the ablation or a hyst, as there was no way I could
>continue the way I was. I couldn't think; I'd fall asleep at a stop
>light; I couldn't climb the stairs without a couple of rests part way
>up. The ablation was the least invasive measure, so that is what I
>chose. Would I do it again? Yes,... if I had to. If I just had heavy
>type bleeding would I do it again? No.
>
>I've had more pain since the procedure, but I had to stop the bleeding
>somehow! I couldn't have it both ways, and I knew I was taking some
>chances, but I felt it was best for me. With both adhesion pain and the
>extreme fatigue, it was almost impossible for me to deal with it all. I
>know this may sound strange to many of you, but the extra pain is just
>that - more of the same that I was already dealing with.
>
>Boy, I'm sorry to be so long winded, but I wanted to give you all the
>info I could think of, so that you were prepared! Tonya, if you are not
>sure about Friday, then explain that to your gyn, and they will
>understand that you may want to schedule it later. As Helen said, it
>really is best to get all the info you can beforehand.
>
>Wishing you pain free moments, hours and days.
>
>Clare
>
>At Tue, 21 Jan 2003, Tonya Fleming wrote:
> >
> >OH, DEAR GOD, HELEN, I DIDN'T KNOW THIS. THANK YOU FOR POINTING THIS OUT
>TO
> >ME. HERE I THOUGHT THAT I WAS DOING WHAT WAS BEST FOR MY SITUATION AND
>NOT
> >DOING "SURGERY" TO REMOVE THE UTERUS AND THINKING THAT THIS WAS SAFE. I
> >HAVE FOUND OUT FROM THE WEB THAT DR. TOM LYONS IS THE INVENTER OF THIS
> >PROCEDURE AND I THINK THAT HE IS A SPONSOR ON THIS SITE? PLEASE, PLEASE
>IF
> >YOU HAVE ANY MORE INFO ON THIS .....LET ME KNOW...URGENT...I AM SUPPOSED
>TO
> >DO IT FRIDAY AND I AM GOING TO BE DIGGING INTO THE WEB RIGHT NOW FOR AS
>MUCH
> >INFO AS POSSIBLE. I'VE ONLY READ A LITTLE ON IT. IT'S SO NEW OUT. WE
>ONLY
> >HAVE TWO DOCTORS IN BOISE, IDAHO THAT ARE EVEN QUALIFIED TO DO IT AND ONE
>OF
> >THEM IS MY GYNO, DR. HODGES. I APPRECIATE YOUR POST TO ME. THANK YOU SO
> >MUCH...I'LL BE RESEARCHING EVERYTHING I CAN GET MY HANDS ON...
> >
> >--
> >TONYA FLEMING
> >
> >>From: "Helen Dynda" <olddad66@runestone.net>
> >>Reply-To: adhesions@adhesions.org
> >>To: Multiple recipients of list ADHESIONS
> >><adhesions@mail.medispecialty.com>
> >>Subject: NovaSure...Is the NovaSure procedure entirely safe???.......for
> >>Tonya
> >>Date: Tue, 21 Jan 2003 13:57:36 -0600
> >>
> >>Dear Tonya,
> >>
> >>I have read that "D&C" (scraping of the womb) procedures - frequently
>done
> >>in the past - are NO longer suggested!! WHY? Because too many women,
>who
> >>had D&C's, had problems with the walls of their uterus becoming adhesed
> >>together!!
> >>
> >>Has your Dr. told you that the walls of your uterus might become adhesed
> >>together following the NovaSure procedure? I have not read any
>information
> >>about NovaSure; but I suggest that you READ, READ, READ as much as
> >>possible about NovaSure!!
> >>
> >>I have the best luck doing research at: http://www.google.com/ . Don't
> >>count on your Dr. being totally honest about the possiblity that the
>walls
> >>of your uterus may become adhesed together!!
> >>
> >>Tonya, you said: "I am going in for a procedure called NovaSure to
> >>"cotterize" the inside of my uterus."
> >>
> >>1.) "cotterize" = cauterize. Mosby's Medical Dictionary gives the
> >>following definition for cautery..."1. a device or agent that scars and
> >>burns the skin, as in the coagulation of tissue by heat or caustic
> >>substances. 2.) a destructive effect produced by a cauterizing agent."
> >>
> >>2.) Based on the definition of cauterize: When the surgeon uses the
> >>NovaSure technique, he/she "burns" the uterine walls. "Burning" will
> >>produce "scarring"....and the scarring may cause the walls of the uterus
>to
> >>stick together!
> >>
> >>The cauterizing will weaken the walls of the uterus!! That's why your
>Dr.
> >>wants to put in an IUD - to make sure you won't become pregnant!! If
>you
> >>were to become pregnant, the walls of your uterus will not nourish an
> >>unexpected fetus...and since the walls of the uterus have been weakened
>by
> >>NovaSure, your uterine walls could rupture.
> >>
> >>DO NOT PROCEED WITH THIS PROCEDURE UNLESS YOU CAN FIND EVIDENCE THAT
> >>NOVASURE IS ENTIRELY SAFE!!
> >>
> >>Helen D.
> >>
> >>~ ~ ~ ~
> >>
> >>From: Tonya Fleming (rainchild_35@hotmail.com) ; Tue Jan 21 09:22:10
>2003
> >>
> >>Mary Lou,
> >>Are all IUDs bad now? I am going in for a procedure called NovaSure to
> >>cotterize the inside of my uterus and then my doctor wants to put in an
>IUD
> >>to make sure I don't get pregnant. (The chances of getting pregnant are
> >>very slim with the NovaSure procedure, but if you do for some reason, it
> >>can be very complicated and will always end in miscarriage or necessary
> >>abortion. The baby wouldn't live anyways and could cause major problems
>for
> >>the woman.) I am concerned about IUDs because my mom had one at age 45
>and
> >>she had horrible cramps and pain from it. But that was over 20 years
>ago.
> >>Are they any better? Just wondering...
> >>
> >>Tonya
> >>
> >
>