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Finally Diagnosis-It was a tumor Finally Diagnosis-It was a tumor

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  #1  
Unread 10-03-2003, 05:36 PM
Finally Diagnosis-It was a tumor

Hi all, I see a lot of new names on here, I am a member from as far back as 3/2000, when I had my hyst....for anyone who remembers me or any roadsters like me, I just wanted to say Hi...I am sure many of the people I remember has moved on or gotten better..thank goodness....

I felt like I needed to come back and tell my tale....My troubles started in 1999 with bladder pain....resulted in hyst...had more problems, bladder, bowel.....I had every test under the sun....I had a MRI in 2001, because low back was bothering me, near tailbone....I was then diagnosed with a tarlov cyst in my spine at the S1 level.....well, I was told by a NS that these things are not the problems that one might think and never never have anyone operate....so i put it out of my mind....and went on....

Fast forward to Jan. 03....had to take medical leave because buttock and low back pain was horrible...and never got to go back to work....more doctors, specialists and tests....to no avail....

I had a knot in my back which I found out was a lipoma...a fatty tumor just at the place where our dimples are in the low back...that was in 04/03.....well...I also kept having a nagging feeling and wondered if the radiologist that diagnosed the tarlov cyst could have mistaken that for the lipoma I had removed.....So after seeing my second pain mgmt dr. I decided to call the hospital and talk to the radiologist and just ask...I figured it wouldn't hurt to ask him if he had known I had a lipoma, would it have changed the diagnosis on the MRI...

When he called me back after the nurse filled him in...he looked at my MRI ...and he told me that after looking at it ...now...in 2003.....it did not look like a cyst now...but a tumor...now keep in mind, this was the same MRI film he looked at when he diagnosed me with a cyst....which no one could help me with in over 2 yrs.....because well, cysts just don't hurt ..so they say...

Well, he said you must get another MRI but with contrast this time....and sure enough, it is a tumor....on the S1....

What I had been blaming on hysterectomy complications very likely was this tumor all along....the bladder, the horrible constipation problems I suffered......and all the horrible back and buttock pain......and this went mis-diagnosed for over 2 yrs....

I am writing this to let you all know....please second guess your doctors.....ask for an MRI of your abdomen or spine....and make sure the facility is a good one, with good equipment.....ask if they can use a contrast dye right from the get go.....I don't know why they don't use contrast anyway....because they certainly are not going to do another MRI if there is a question of what it is....they didn't in my case....I had to wait over 2 yrs for it......and then, get another reading from another radiologist if you have to....or better yet....ask the radiologist himself...after your dr has been given the diagnosis, to go over the film with you....all the dr's I had gone to with my film in the last 2 yrs did not know how to read them....they were going by the report.....which said I had a "cyst"......Now I want to tell you...I had 2 MRI's in the last two years....both without contrast....the contrast was only ordered two weeks ago to diagnose the tumor.......

I know a lot of you are suffering with side pain, back pain, bladder pain and bowel problems......all these things can be tied in with this tumor....a tumor which can be removed..by the way....and will be.....I have talked to two neurosurgeons and may consult a third....but the bottom line....had this been removed 2 yrs ago....and diagnosed properly...I would still have a job and my life would not have suffered so much...it has wrecked my marriage basically....and I have experienced things that I would have rather never gone through....spent thousands of dollars.....I feel my instincts were a blessing to me...and I know that prayer and faith led me to the point I am now....

Never give up looking for an answer.....I was told by a pain mgmt dr to give up looking for an answer to my pain...she told me to go to a psychiatrist so that I could learn to just live with it....she also told me once when I tried to show her my MRI report....that the report was just a piece of paper....she was not interested....this is the kind of medical treatment I have received in the last two years.....I have been verbally abused by some of my dr's....and to think.....all because of a mistake....carelessness on the part of a man who diagnoses life and death illnesses....a very scary thought....

I wanted to share this with those of you who are giving up on ever finding an end to this road.....it took me from 1999 to now....but it can happen....but don't always rely on a dr to do it....like I said...second guess...go with your instincts....never give up.....BJ
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  #2  
Unread 10-03-2003, 07:59 PM
Finally Diagnosis-It was a tumor

Wow! Thanks for sharing this. So many of us are traveling the same road that you have been down already and it helps to know that sometimes that elusive answer does come. I can relate so much to that nagging feeling that there must be something causing the pain and then vascilating to maybe I am just "psycho" and I should be able to control the pain or somehow make it go away. I go from feeling depressed and hopeless to intense anger that I always stuff which only intensifies the pain. I have continued to pray that the Lord would direct the doctor's to the cause but thus far my heart felt prayer has not been answered. I know that it is also a process of elimination and that the squeaky wheel gets the oil, but at who's expense? Thanks again.
  #3  
Unread 10-04-2003, 09:34 AM
Finally Diagnosis-It was a tumor

Dear BJ,

I am so glad that you finally may have found the answer to your problems. I hope the surgery goes well and you are on the off-ramp soon.

I had an MRI misread in the past too. I was told it was normal even though there were dark areas all over the front of my uterus on the MRI pictures. It turned out to be Adenomyosis causing a large dark blue area (cyanotic) on the front of my uterus that was horribly painful all the time.... (I know this from the conscious pain mapping I had about 9 months later).

I had seen the MRI results as the tech had shown them to me because she had never seen that before... she had mentioned to me (even though she wasn't supposed to) that maybe it was the cause of my pain (which did turn out to be true)... However, apparently the radiologist was not trained to recognize that type of image in the uterine wall.... so instead of writing something like "there are dark areas on the front of the uterus that could indicate something... etc."... He just wrote that the MRI was normal.

That result from the MRI caused me much doubt in myself. I did think I was crazy! WHen I went to see the pelvic pain specialist 9 months later I told my husband that I was totally prepared for him to tell me I had a psychological problem (even though I didn't think I did). That was when I had the pelvic pain mapping and it was such a relief to find out what was causing the pain and that it was REAL.

Please keep us posted, BJ. Many s and much strength on you journey.

Sarah
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  #4  
Unread 10-05-2003, 07:59 AM
Finally Diagnosis-It was a tumor

Of course I remember you BJ. I pop in every once in awhile to see what is going on.

Great post. It is posts like this that make this website so great. Very informative and encouraging.
  #5  
Unread 10-06-2003, 05:02 PM
Finally Diagnosis-It was a tumor

Hey BJ, great to see another "old timer" around on the board, long time no see!!

I am so glad you thought to ask that radiologist about this, it's been my experience again and again in the last 4yrs that unless we ask, we suffer, and I too have suffered verbal abuse and worse at the hands of my dr's over the last few years and I think it's just shameful that we have to try to keep our wits about us, and try to persevere, while we're the ones that are suffering!

Now at least you can move forward and have this removed and hopefully be free of your symptoms for the past 4yrs.....we have to stay on top of things don't we!

Hang in there and please let us know how you are doing we'll be anxious to hear how things go when they remove the tumour for you and we'll all be rootin' for ya!
  #6  
Unread 10-06-2003, 08:23 PM
Finally Diagnosis-It was a tumor

Yes Gidge it is very frustrating that we have to educate ourselves with information that we gather from various sources....when we expect to get expert information when we go to a professional.....

I have found if I do not have information to form questions, I will get nothing..absolutely no voluntary information whatsoever....when did this kind of medical dispensing happen? What did our parents and their parents before them do when they went to the dr? there was no internet....there were no up-to-date magazine articles that went into as much detail as many of the women's magazines go into today.....yet, I never heard any of my older relatives ever complaining about a dr not being able to find the problems......

You know, I am about as fair as the next person...I don't expect to get everything I need from one dr, i know we have to seek specialists, but to have to do your own research on the internet and then go to the dr's about it? that is getting to be too much....In April, I had to find out on my own that I had a lipoma in my low back....several doctors that I asked what the lump on my back that was moving around was told me it was a part of my hip bone.....I knew it shouldn't move around so much....so it was I who had to search to find info on it...and then flail in the dark, and go to my PC and say..."Could this knot be a lipoma, or fatty tumor?".....that is when I had it removed...thinking that was the source of the horrible pain I had .....

And that by the way is why I called the radiologist....several weeks ago, was to ask about the lipoma vs the cyst he had diagnosed in 2001......that is when I discovered that instead of a cyst it is a tumor.....which is a lot harder to remove than the lipoma was....and I am terrified at times if I think about all that can go wrong......but at the same time, I feel blessed that I now know what the "real source" of pain is....and it can be removed....and then, I may have a chance for some relief....

As far as my hyst goes....I believe that much of the bladder pain I was experiencing as well as the bowel problems were also related to this tumor......had they discovered it in 99...I may never have had the hyst.....and we all know the complications hysts can bring on.....the biggest problem I have now that I know what can and cannot be related to it, is vaginal dryness.....I had tried the premarin vag cream for a while.....but now I am a little afraid to use it, because I am not so sure that using that didn't promote this tumor from getting larger.......this my uneducated theory.....so now I am in search of another type of treatment for dryness.....

I have thought about many of you on here and wondered how some of the people I remember were doing.....and this was the first place I thought of when I found out what was going on finally.....I just wanted to say....Do not give up on yourself or ever looking for a way to make life better.....if that means a med that agrees with you better then so be it....not everyone is going to find a magic cure....but many will find some answers to deal with a vexing medical issue....by just finding the right dr's....and they are out there.....

When I think of some of the things that I had used in the last few years to just feel better.....and some of the things the dr's told me, I could write a book.....I had been going to a horrible pain mgmt dr in the last year or so that would get very angry at me if I even hinted that I was looking for some kind of explanation for what was happening to me and the worsening of my symptoms.....she will be one that I make a complaint on when this is over....I used to leave her office in tears and feeling totally hopeless.....the only reason I didn't switch was because of my HMO at the time.....but had just found another dr right before I found out about the latest developments.....

so that is why I also say....search for a better dr...they are out there...when I think that I stuck it out with this woman just because I didn't think I could do any better and then to find this other pain mgmt dr that would have treated my pain more aggressively....I could just cry...thinking I gave her so much money to basically verbally abuse me....

I hope that any of you who are not satisfied with things, will move on until you are......Gidge I know the situation in Canada may not provide you an opportunity to move around like you would like....and my HMO was the same way.....I no longer have that....but I also have a little more confidence in myself now.....and feel I can speak up for myself more freely now.....

Ladies just remember to use your good judgement and instincts.....and search out competent dr's...they are out there....I know you're probably saying "where"? like I used to do.....it took asking around and around and around....

I will keep you posted and please keep me posted on what is going on....I know Gidge you have really had some hard times with doctors.....you should write a book also.....take care..BJ
  #7  
Unread 10-07-2003, 09:42 AM
Finally Diagnosis-It was a tumor

You are so right BJ and I think you are remarkable for persevering through the pain and lousy doctors , and thank god you did or where would you be today?

I know what you mean about going in with the right questions, last time I saw the Uro I took a list of questions and literally went through them and got them all answered because the last appt she left me totally confused....it's just amazing that we can keep our wits about us when we're feeling so awful to actually advocate for ourselves!!

I have thought time and time again since my hyst that there needs to be something in place for people who are sick and not getting the help they deserve either because there dr has decided to give up on them (that happened to me) or they are just bad dr's I guess......thank god for hystersisters without it I don't know where alot of us would be right now without the support!

BJ, I hope someone takes this thread and of yours and marks it as special, because that's what it is, you took the time to come here and think of us, to show us what can happen if you don't stay diligent and informed, and that things can work out in the end!

I'm sure I'm not the only one that's proud to call you a hystersister, please keep us posted on your progress!! 's!!!
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