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Old 02-10-2006, 06:47 AM   #1
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anah HB User
So many things wrong, (this is long guys)

Hi, I have been reading on this site and almost didn't register to post, I am so used to having things wrong and not knowing what the problem is.......seems the doctors I go to just put me on more medicine and send me home, don't really listen. I was hoping someone here would tell me what they think. I dont' mean to write my life history, just alot is going on and if anyone is experiencing or has experience any of this I wanted to hear from you.

I am 40 yrs. old, have 3 kids. I have been having health problems for a while, in my 20's and 30's it was mostly problems with constipation and bloating, almost every time I ate. About a year after I had my third child, I started having these 'attacks' of pain, the first one was after my husband and I had intercourse. It started out as a cramping feeling on my left side and went around to my lower back, like when I am on my period, then went down the inside of my thigh, down to my ankle. I could not MOVE the pain was so horrible. Nothing has hurt that bad since I had natural child birth. It lasted about 30 minutes, then just went away. It has been happening maybe once every month, maybe not for 3 months, then maybe for 3 days in a row and lasts anywhere from 30 mintes to and hour and half. It feels like my uterus is squeezing, like contractions, and there is intense pressure on my rectum. I cannot explain the pain. Sometimes the pressure is so bad on my rectum I actually go to the bathroom and have a bowel movement. The last week, I haven't had any "full" attacks, but everyday I have had that ache in my lower left side and down my left leg. It has been with me most of the day all day.

I have bloating and can't wear my jeans, never know when its going to happen. My dr. says I have IBS because it happens most of the time when I eat, but sometimes when I dont' eat anything. I am usually constipated, but when I'm on my period I have loose bowels and more frequent. Sometimes for no reason I have diarreah.

I am anemic and have horribly heavy periods, large clots, etc. I had to have a blood transfusion last year because my hemoglobin was at 7. I wish I hadn't done that, I worry about contracting aids even with the screening they have now. I am tired constantly, feel run down and my eyes burn all the time. I feel so sluggish mentally, and depressed. Its hard to get anything done and I need a nap almost every day, but usually don't get one. My husband works overseas and is gone for 4 weeks at a time, we have a small ranch and alot of work needs to be done, and of course kids and sports and homework, etc.

I had a colonoscopy last year when I was in the hospital for a blood transfusion, they found 10 polyps and took them off. I felt like that was alot. They also did a DNC because they said the lining of my uterus was extremely thick, endoplasia or something like that is what they called it. Doctor told me it would help my periods be lighter for awhile until it grew back. They were lighter for about 6 months and then became heavy again. Now he is wanting me to have a hysterectomy.

I also have to take shots of B12, the doctor said that my stomach lining will not absorb it in food or vitamins. I had one shot everyday for a month, then once a week and now once a month. He said it would help with my fatique, but it doesn't seem to.

I asked my doctor for a CA-125 test when I read about the symptoms of ovarian cancer, the bloating and being mistaken so much for IBS concerns me. He said that he wouldn't do one because they were not helpful and were misleading, hardly ever accurate. I have gained about 20 lbs. in the last year, and I eat a healthy diet and am doing something all the time. My stomach feels "heavy". I used to could eat very light for 3 or 4 days if I felt like I was gaining weight, and my stomach would feel flatter and I'd lose a few lbs. Now, nothing makes my stomach feel flat and I never feel "light".

I am so tired of going to doctors and so many things being wrong with me. My husband is tired of hearing how tired I am and how bad I feel, and I just want to know what is wrong with me. Since this has been going on for more than 7 years, could it be ovarian cancer or would something serious have happened to me after this amount of time?

If you read all of this, thanks. Sorry its so long.
Anah

 
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Old 02-10-2006, 08:07 AM   #2
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karen32 HB User
Re: So many things wrong, (this is long guys)

Anah, I can't understand why your doctor would not give you a ca125 test when you have symptoms that are found in ovca! Yes, the tests are notorius for being inaccurate, however, your symptoms MUST be explored. As much as you'll groan to hear this, I think you need to find a new doctor. (I have been down that road, and believe me, I know how hard it was for me to find a doc that I was comfortable with, but tell yourself this...I need a doctor who will respect me as a person AND as a patient). Has you had your uterine lining measured lately? Was it a gyne that did this, or just your regular doctor. Perhaps you could ask for a referral to a gyne, if your current doc is not one.

I remember going to one doc and I was wanting a referral to a different gynecologist from the one I had been seeing (we need referrals here). She told me no. I told her that I was not leaving until I had an appointment with the new gynecologist (and provided her with the name and number of a doctor I'd found). I wasn't rude about it, I just sat there calmy and stated such. She got a little cranky and said "well, I can't refer you for no reason", and I said "I am on a follow up protocol that is dictated by the provincial cancer agency. I think that is a good enough reason". She begrudingly gave me the referral, and I never went to her again.

My example is to illustrate how you might request the ca 125...just tell him calmly you are not leaving until he agrees to do the test. Write out a list of your symptoms, compare them with ovca symptoms and hand them to him and ask him why he will not explore this? Tell him you've done alot of research about ovca, and know that many early cases get brushed off as ibs or other problems, when no exploration of ovca is done. Take a close friend or your husband to your appointment with you to help you with this.

I hope this helps a little, and that you get an answer as to what is causing all your pain soon. Perhaps you might want to consider seeing a counselor to help you come up with a plan of action on how to deal with the medical community. That is what I did and it was amazingly wonderful. Let me know how you're doing.

Karen

 
Old 02-10-2006, 09:01 AM   #3
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anah HB User
Re: So many things wrong, (this is long guys)

Thanks for your reply Karen. I am very disappointed with my doctor, especially after going to so many that I simply wouldn't go back to. This doctor was the first one that ran tests, like finding the B12 problem and the anemia. So, he is listening to my "symptoms" and treating them - I am on Nexium for my constant indigestion (He told me I was getting addicted to Gaviscon) and it seems to help the nausea too, Zelnorm for my IBS, B12 injections, prescription iron tablets for my anemia, daily Metamucil for constipation (I am constipated anyway, and the iron pills make it worse) and Celexa for my constant anxiety! He doesn't really know why I get dizzy at times, but my blood pressure is always low so that may be it, it is usally somewhere around 95/60 or something like that, the top number is rarely over 100, it was 120/90 when I was in the hospital getting my blood transfusion. I was very upset and agitated, my husband had to stay with the kids as home and I was alone and scared. I had asked him about my thyroid, because I was so tired and had started gaining weight for no reason, he ran that test and said it was borderline but in normal range.

So I feel like he is treating the symptoms but that I may have an underlying problem that is causing all the symptoms. My husband gets irritated when I start going to new doctors, thinks I'm wasting my time. Not that he doesn't care, I just think that after hearing my "aches and pains" for so long he thinks "enough already" and wants me to just take my medicine and do the best I can with it.

I know you are right. I am going to try and find a different doctor. But to answer you question, yes it was my gyno that performed the DNC and handled all that. I don't know how thick the lining was. Does thick uterine lining have anything to do with OC or is that just with Uterine Cancer?

Anah

 
Old 02-11-2006, 02:08 PM   #4
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imoan HB User
Re: So many things wrong, (this is long guys)

Hi Anah,
7 years is a long time for any symptoms. Yours seem to be changing from one to another as time passes. Having had Ovarian Cancer 2 years ago, my best recommendation is to seek a GYN Oncologist. I'm not implying that it is cancer. Only that they look at your systems in a very different way than all the other doctors. Some of your symptoms do sound right for Ov Ca but you should see the experts. Find one in your area & make an appt. Do not worry about comments. It's your LIFE. I hope you'll fell better soon. Feel free to ask any questions. Imoan

 
Old 02-11-2006, 07:50 PM   #5
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pams37 HB User
Re: So many things wrong, (this is long guys)

Helllo Anah.man ohhh man.Seems like you and I are both going through the same things.Except I have only expereinced this since Sept.Right after I got off birth control pilll.The doctors keeep tellling me that I should just get back on birth control pilll.But I hate being mooody(it get's me so moody and hungry)I could never ever lose weight on pill.Unless I starve my-self.
Here I willl telll you my story:
Ok in March/05 I decided to get off pilll becuase I was so tired of being cranky and mooody and biggg.I wanted to try and lose weight.So when I got offf it I weighed 175(for a 5 foot 1 frame)I'm used to weighing 140 pounds(before I had my gorgeous children)who now are 7 and 4.
So for 7 years I have beeen big.Anyways by July I noticed I nooo longer crave foods(or I could go without eating and not start shaking)BUt in June I went to my doctors becuase I had a reallly bad burn(from Florida)I was constantly out in the sun alll day(from like 6am-12am)ohh yeah.My kids could be out alll day.This went on for like 2 weeks.Then finally when we got on the plane to go back to Canada I noticed both my arms had plaques alll over both arms(like it loooked really bad)Plus I'm the type that noo matter what I put on my skin I just can not tan(I burn)so I went to my doctor and he said I basically got sun posoning.Welll guess what
That's when I have beeen visiting the doctors ever since that darn burn(some-times I wonder if it is skin cancer)I don't know.Plus since that burn I am never out-side much.But yet alll over my body I now have the beauty marks(I guess that's what they calll it)it's alll over my body.But it does not looook different or odd looking(the way the say it should look if cancer)But do you think it would come on you when you are inside a lottt.To me it seems weird how this alll happens to me right after the bad burn.Ohh plus it did not really heal either.I have I guess you could say plaques alll over both arms(smalll little ones though)Hard to explain.
So in July I felt bloated and when I would eat(take a bite)I would just put the food down.Then in Aug(now it gets weird)I felt like little cysts(or could you say little tumors)alll over my abdomen(around my uterus)Even the doctor felt it.He felt this big bump(you could feeel the little circle)it feeels like a cyst.He felt it moving and looked a bit scared.He said ok you need a pap test done(but pap test said nothing is wrong)GO FIGURE.
I needed ultrasound done too.They found fat cells in Liver.
Ok so for Aug-Oct. I felt this thing(cyst,tumor)don't know.But I felt it alll over my abdomen.I could even push it offf my ribs(weird ehhh)but where ever it landed it hurt reallly bad.Then by Nov I could not feel it any-more but now I have pains in ribs and around the liver.
Ok so from JUly-Oct I lost 30 pounds.But my stomach(abdomen)stilll loooked really fat.I think it's just water I lost.Nutrients your body needs to live.I went to get blood test done 2 weeks ago(at the hospital)and they sent it to my doctor(he finally beleives some-thing is not right with me)my nutrients are very very low now.My Potassium and all the other nutrients you need is going right through me when I go to the washroom.You know when you check your blood and it says range.I'm right at the lower range.If it says you should be at 50-150 I am at 51.But I used to be like close to higher numbers.Now alll my blood work looks pretty bad.I constantly peee.But I also think it's cortisol that my body is lettting too much out.I think I'm elevated.
I know it's my hormones that are alll going crazy.But they do say that if you have tumor then it could go into your adrenal glands(I think that's what's happening)
Plus all the symptoms I have for hormones started alll in Sept(same time)I had pimples alll over my face(bigg pimples)the last time I ever had that was in the 90's.
Then I had greasy and itchy hair.Every-day I need to wash it(or it loooks really gross)and my gland groin for nooo reason keeps getting bigger(they say that's part of hormones being elevated or going crazzy.)plus I also have an infection down there that nooo meds work and they just don't know what it is.Welll some-times doctor will send it to the lab(takes a sample of dishcharge)but either they say they don't recognize it or in Dec they said Pus cells(so I think it might be the Lymphs)This discharge does not hurt(thank godddd)but it has a very bad odor.
But I think I might have (have you heard of)Cushing's disease.I have all the symptoms.
Here they are:
Symptoms vary, but most people have upper body obesity, rounded face, increased fat around the neck, and thinning arms and legs. Children tend to be obese with slowed growth rates.


Other symptoms appear in the skin, which becomes fragile and thin. It bruises easily and heals poorly. Purplish pink stretch marks may appear on the abdomen, thighs, buttocks, arms and breasts. The bones are weakened, and routine activities such as bending, lifting or rising from a chair may lead to backaches, rib and spinal column fractures.


Most people have severe fatigue, weak muscles, high blood pressure and high blood sugar. Irritability, anxiety and depression are common.


Women usually have excess hair growth on their faces, necks, chests, abdomens, and thighs. Their menstrual periods may become irregular or stop. Men have decreased fertility with diminished or absent desire for sex.

Yes those are alll the stuff I have and going through.This Thurs I go and see a doctor who deals with Hormones.(I can't remeember what you call them)
But my doctor phoned her last week and she's taking me within a weeek.He said it usually takes a month to get in.But I think he told her about my blood work and what I'm going through.
He also thinks I'm going crazzy.My whole family does.They don't bleeive me the pain I'm in and they think because ultrasound can't find any-thing welll then you are okkk.
But one more thing.I did not telll you.
When alll this was happening,in Sept they did ultrasound on my uterus.You know what they found.
They found my uterus made of nabothian cysts(from cervical gland.)
Plus 6mm of thickness(Uterus)
So they are alll telling me it's nothing.But I keep telling every-one that when they say you have cysts(and if you are in so much darn pain)welll then are'nt they supposed to loook into it.Some how I think some-one is screwing me up.
Ok I willl end this long letter.
But I know what you are going through.Noo one beleives me and thinks I'm craazzy and just depressed.But they will see that I'm right and they are alll wrong.
So I'm hoping this doctor willl check my hormones and then action willl finally start
Thanks for listening and GOOD LUCK.
Do not give up ok.Keep bugging them and who cares what they think.It's our body and they don't know what we are going through.
See ya.
Pamela

 
Old 02-12-2006, 09:03 AM   #6
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anah HB User
Re: So many things wrong, (this is long guys)

Imoan - Thanks for your reply. I also think I have many symptoms of OC. So scary to think about possibly having, but, if it IS OC I don't have a chance if nothing is done. Its not that my problems are changing or growing, some of them are more pronounced at this point. But they have always been there. I know I was anemic when I was pregnant with my last child, but didn't realize I was "chronically anemic" as my dr. calls it. Don't you have to have a dr.'s referral to go to any GYN Oncologist? I know I tried to make an appt. with an endocrinologist, and their office wouldn't make an appt. with me unless I was referred. My regular dr. wouldn't refer me because my thyroid tests had came back borderline, but in the "normal" range. So I don't think he would refer me to an oncologist when he thinks treating my symptoms with medicatin is all I need. (sigh)

Pam, so sorry you are going through so much. Its frustrating, isnt' it? And for me, the anxiety over "not knowing" and everyone just brushing you off makes it even worse...................if you feel you have Cushings and have all the symptoms, what does your dr. say? Those symptoms seem pretty obvious to me. And yes, normally when you have cysts they want to put you on hormones to shrink the cysts, or if they are large and don't shrink with hormone therapy they usually want to surgically remove them. Dr.'s also normally want to find out if the cysts are fluid filled or not. Maybe you need a to go to a new Gyno??? As for your uterine lining measuring 6mm, from reading I have learned that if your uterine lineing measures more than 5mm there is a concern for uterine cancer............now thats just what I've read, dont' want to scare you. But you do need to fine out about that.

Also, I have a recurrent yeast infection, no odor really, just thick white discharge. My dr. gives me the one time pill, forget whats its called...........or I just get the over the counter. But it always comes back. I haven't been on antibiotics and don't know why I keep getting it. My gyno had me tested for sugar diabetes because he said that is a warning sign for many women who have sugar diabetes, they keep getting a yeast infection..........but the test said I was fine. So, back to square one.
Does anyone know if a recurrent yeast infection has anything to do with OC, or is that totally not connected?

Anah

 
Old 02-12-2006, 12:25 PM   #7
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pams37 HB User
Re: So many things wrong, (this is long guys)

Hello Anah,
Since 1990 I have had yeast infections,bladder infections and some-times Kidnney infections.But I can not use cream(for yeast infections)or the ovals you can buy and do 1-7 day treatments.If I do use them,then within 1 hr I have to sit in the bath tub and take it out of me(can you bleeive this)you know some-thing,some how I think I damaged the cells in my groin area.Ok when I was I guess in my early 20's I used to always(for 2-3 years)use powder that has talc.I always always used that powder and then I guess within 1 week I would get a yeast infection.Plus I used soap inside me and pads that had deodarant(nice smell)on pad.Now I realized how bad alll those things actually are for me.So now I use nothing.But now I tooo have to use the pill(for yeast)you swallow.It's called Diflucan(that's what I use)a lot better then using creams for like 2-5 days.
Actuallly I have not seen a gyn yet.I have a new family doctor(since Nov)my old doctor left in Sept and he hired a lady to take over and she has done a crapppy job.In Sept I asked her if I could go see a gyn(for infection in groin that wont go away)she said nooo becuase you are ok and you just can't go there.So then in Dec I asked my new doctor and he said noo problem.But can you beleive I can not get in until April.So looks like I willl see the hormone(doctor)before the gyn.
You said your doctor wont send you to a doctor who checks hormones(my new doctor did not really want to send me either)I think he was getting upset that I had alll these problems but ultrasound and blood work would say every-thing is perfect(except fatty liver)ohh but when he would do my blood test(every month)he checks my GGTP(it's always elevated)and Cholestrol(it's always at 6)since 1990 though.Plus my Trigerclyde(I think it's spelt like that)that's also elevated.So every month I get them checked and those are elevated and he can not understand whyy.So anyways in Feb I finally realized this could alllll be do to my Hormones.Ohhh also I have what you call abdominal Striae(stretch marks)that came Oct to Dec now it's going down my legs too now.That tooo is a sign of Cushings Disease.But my mother keeps telling me that stretch marks are normal and if you telll the doctors they might laugh.But I know this is not normal.I know it's to do with Cortisol(elevated)Plus they say you really only get these marks if you are pregnant.Whooo knows.But I know these marks were not on me before this alll happened.It slowly slowly started coming and now it's up to my belly button and now it's on my thighs and going down my thighs.All I know is when I look at my-self in the mirror I get so upset and depressed.I look different but nooo one else notices it.
Yes I tooo have anxiety and depression becuase I'm sick of my family and doctor telling me to stop complaining and you should not be in that much pain.Ultrasound can not see any-thing so it's alll in your head(ohh yeah they willl alll see)
But within the week of doctor phoning the lady who checks hormones(she wants to see me this Thurs)I'm so happy.In one week I got in.he told me don't be surprised if it takes a month to get in(he thinks I'm just depressed and need a life)
get this.Last month he told me stoppp going on internet and looking things up.Instead why don't you learn to make a pie or do some-thing with your young kids.
They don't understand hey I do but it does not take the darn pain away.Some-times I wish it was just depression.Then you could just snappp out of it and that's that.
But noo this pain wont go away.
Ok thanks for the reply back and take care.
I wish you luck tooo.I will keep you updated and let you know what happened.
Have a beautiful week.
Love Pamela

 
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