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Old 03-28-2009, 07:25 AM   #1
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senoradee1 HB User
Nervous Newbie

Hi all,
I have been lurking for two days and decided to join after reading so many caring and informative post and replies. I'd like to share my concerns with you all and perhaps you can help me.

I have had a history of ovarian cyst and had 2 removed via D&C. Those two were in the span of twelve years. I have very heavy periods except last month It was extremely light, almost non period -like

I was brought to the ER, 5 months ago because I was in a excrutiating pain after being constipated for ten days. I was given a CT scan and treated and released.

The results of my CT scan were given to me. I read the report twice, made an appt. with my gyn and handed him the report. I don't have it with me.

I was also given a transvaginal sonogram and a pelvic sonogram with advice to see my gyn.

This was five months ago. i have been experiencing swelling and a painful abdomen , like a heaviness and sometimes crampy when I am no where near my period. I am constantly urinating. I am constipated and can only go to the bathroom if i take my two tablets of sucralfate a day. I get horrendous backaches in my lower back and in the upper left side of my back. Sleeping is difficult because of the heavy and painful abdomen. I get waves of nausea, dizziness, spotting in between periods and daily discharge sometimes clear, sometimes not.

Words that stuck out from my CT scan report are, bulky uterus, adnexal something, ascites and myotomaus something. I should have written down measurements or at least copied the report before handing it to my gyn but i didnt

My Gyn seems concerned. i was given a pap smear and he felt around inside and repeated that yes, my abdomen is bulky
he took a blood test (CA125?)was concerned and asked about my constipation. he said its not everyday someone has to take meds to go to the bathroom. He was aslo concerned about my blood being 8(I think its supposed to be 13) i am anemic and he asked me if I knew why I am anemic. i don't. His receptionist made an appointment for another pelvic and abdominal sonogram and he wants me to see him again after the test are done.

Everything I've read on the internet for days leads me to cancer.
I have typed in the google search engine, many things, including ;bulky uterus and ascites.

Advice and replies would be greatly appreciated from your wisdom.

Thanks in advance

 
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Old 03-28-2009, 07:44 AM   #2
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victorian HB User
Re: Nervous Newbie

Dear Senora,

How very scary for you!! You are wise to be concerned and to be reading posts and learning, learning - education is the key to making ourselves healthy. Unfortunately, when we are hurt and ill, it is very exhausting to help ourselves learn more.

Please, get yourself to a repected fertility clinic surgeon in your area! These are the best surgeons I have found for truly helping females preserve their insides and staying on top of keeping you healthy and alive. Your local gyn or family doctor is not usually qualified to stay on top of these things. Wait and see is NOT called for in your instance.
Fertility surgeons have all the equipment (sonograms, etc) right there in the office. No waiting.

The dizziness...distended abdomen....could you be bleeding internally? Leak bleeding inside could cause this for you. And the anemia.

Could also be a benign tumor/large growth. I know women who have had basketball sized such things.

Don't panic, just be dedicated and work everyday toward your own healthy recovery. Don't wait for drs who are busy with multitudes of patients. Be your own strong advocate.

Call your gyn and ask for a full copy of all of your medical records, including your initial report back. They can fax a privacy release sheet to you/your office for you to sign and fax back to speed things up. Call the hospital and do the same. Make a binder with all your medical records. Make an apt. with a fertility surgeon. Tell him/her you want to preserve yourself for future children (whether you do or not) Take your binder there and let him/her copy it and return it to you.

Hopefuly someone with same symptoms will write to you. Print their information. Tell your new surgeon/fertility person you suspect you have "this"

Second: how is your health? I strongly believe/know what we put in our bodies comes out some way - and often ways we don't like! Find a local nutritionist (certified) and tell him/her your symptoms and start on a diet/supplement routine. You should always tell your docs/surgeons/pharmacists what supplements etc. you are taking.

Find a medical doctor who is also a homepathic doctor (I have one who is both - the best of both worlds) in addition to my surgeon and my certified nutritionist AND my own studies.

This is your most important job for now: Make Yourself Healthy!!

Let us know what happens! Things will most likely be fine and work out. The body has amazing recovery capabilities. We're here for you!

Victorian

 
Old 03-28-2009, 07:53 AM   #3
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mentalmum08 HB User
Re: Nervous Newbie

Hi nervous newbie,

You dont say how old you are? Not being nosie, and not pretending to know what's going on with you. But you sound just like me before I had my hysterectomy 10/11 years ago. I felt quite a lot of the time that i had been kicked down below with big tacky workmen's boots. Sometimes it was so sore and swollen that i couldn't sit down. I found out that i had endometriosis. I never got to an age where the menopause began because i developed an abnormal smear test, and they gave me an emergency hysterectomy several days later. Suffice to say all my problems just vanished. Why dont you ask your gynie about the possibility of the condition. You seem to be torturing yourself speculating. Take care. Bye

love sandra xxx

 
Old 03-28-2009, 08:02 AM   #4
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senoradee1 HB User
Re: Nervous Newbie

Thanks girls
I like the binder idea. I think I'll run down to staples and get me one. Mental mum I am 45 years old and Victorian I am sterile, I have three children. sorry i should have included that info in my post. My hubbys union medical benefits doesnt make it possible for me to pick and choose docs and so I have to wait and see. I have to say that the receptionist made the appointment for me when initially she gave me the number to call and make it myself but then she called and told me she made it herself for the earliest date possible which is April 10th
The urgency makes me feel like i am being cared for and at the same time scaring the heck out of me.
I also suffer from achalasia and stomach ulcers but just recently had a colonoscopy and an endoscopy and it was my gasto doctor who told me to hurry up and see my gyn

 
Old 03-28-2009, 09:38 AM   #5
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Re: Nervous Newbie

At least there is a sense of urgency from your Drs which is a good thing. If you end up being referred to anyone else, make sure that the Dr. makes the referral ( you had said your choice of Docs is limited by your insurance). Most of the time if its a Dr. referring you to someone you get a faster appt. I know others have had it happen to them and I have now witnessed it personally with medical tests!

Sorry to hear about what you are going through and a lot of what has been posted makes an absolute ton of sense. Since your gastro is the one that said get to your gyn, I'm not going to go into offering the details of my little bout with abdominal issues outside of the fact that I had a double whammy of kidney stones and gall stones at the same time (felt like I was dying!!!). But the CT scan would have indicated this.

April 10th seems so far away when you are in pain - but at least they are trying to get you in as quickly as possible. Do you have the chance to go whenever necessary (i.e. can you take off work). You may want to call back and ask if you can be moved up if there are any cancellations.

 
Old 03-28-2009, 09:40 AM   #6
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Re: Nervous Newbie

I"m sorry you are so uncomfortable. It sounds like the doctors are looking into all possibilities. That is good. Waiting for test results is difficult sometimes.

I don't have much to add. I hope you get some support from here and your doctors are able to find out what is going on so you can feel better soon!

 
Old 03-28-2009, 09:53 AM   #7
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senoradee1 HB User
Re: Nervous Newbie

Thanks for the support gals , this site s amazing
at least now I can know Im not alone and that ther is someone out there i can talk to
Luvbug, I never thought to ask to move up my appt if there is a cancellation . Thanks for the tip. I will call them on Monday. i have been sick almost all my life but I am now trying to become more proactive and learn more about my conditions and not just go by what doctors tell me. After each appointment and test I go on the internet to find out more about it (legit sites of course) and in this way understand "key" words when they are uttered by any specialist. It will either let me know I can relax or it will let me know to keep on my toes
Thanks
I got 2 tips so far

 
Old 03-28-2009, 10:56 AM   #8
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estria HB Userestria HB Userestria HB Userestria HB User
Re: Nervous Newbie

Hello Senoradee,

I would definitely get a copy of those reports so that you can see exactly what they say about your condition. A bulky uterus is most likely due to fibroids and you said that you saw myotomous something so this is likely (this is a type of fibroid that is embedded in the uterine wall rather than sticking out into the uterus). Fibroids are completely benign but they may cause excessive bleeding (not good if you have anaemia) and pain in addition to making you look pregnant if they are very large. Adnexal something may have been adnexal mass perhaps ?, indicating an ovarian cyst or mass (adnexal means ovarian). Ascites is fluid in your abdomen and this may be what is causing you all of the discomfort. You said that they may have done the CA-125 test ? Find out what the result of this was. Anything between 0 and 35 is considered normal. You should also know that this test is not extremely reliable for premenopausal women like ourselves. Sometimes it shows high for completely benign reasons such as menstruation and it can also show normal when stage 1 ovarian cancer is present. You will therefore have to take the result "with a grain of salt" as it may not give the reassurance you require.

The reports will give you an impression of what was seen. The doctor doing the test will give his or her opinion of what they think is on the scans at the end of the report. This is very important as they are now quite good at identifying these things on the scans and ultrasounds. Reading the reports will therefore give you more information and you have a right to have a copy so call your doctor's office and get a copy of these as well as the result of your CA-125 test. This will help to prepare you for your doctor's appointment so that you can ask the right questions. I think that asking to be slotted in in case of a cancellation as has been suggested is an excellent idea. You should also make a list of questions that you want to ask the doctor so that you don't forget when you are in there and you get the necessary reassurance that the ball is rolling to make things better for you. You may want to take a close friend with you to the doctor's because when our emotions are involved we sometimes don't take in everything that the doctor is saying. A second pair of ears sometimes helps. Of course this is not essential and if there is no one you can trust on that level then it is best to go on your own.

I sincerely hope that you get this taken care of very soon.

Estria

 
Old 03-28-2009, 06:56 PM   #9
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senoradee1 HB User
Re: Nervous Newbie

Estria-
what is the difference between a fibroid embedded in the uterine wall instead of sticking out? Is one better than the other? I do have anemia so the bleeding is not good.
Adnexal mass cyst is better than just mass right? Cyst is painful and removable but at least not cancerous.
I said CA-125 because in the abbreviation thread it said to write that instead of blood test. So I'm assuming that it is the standard blood test given by the gyn.
The most troubling of the symptoms is the ascites. I know this is not good. that's the only thing that has me panicked and that it might not just be the average cyst or fibroid. Those are hassles and painful but again, it isn't cancer.
I went out today for a walk and was in exteme pain when I returned home my abdomen was swollen and the upper left side of my back was killing me.
ugh this is just so frustrating maybe when the results and answers come in I will be able to relax.
Thanks for allowing me to vent

 
Old 03-29-2009, 09:14 AM   #10
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Re: Nervous Newbie

Hello Senoradee,

I hope this information will serve to inform you a little better.

The CA-125 blood test is a test that looks for a cancer antigen that is often present when one has ovarian cancer. This antigen is always present in certain quantities but in postmenopausal women in particular, a high count of this antigen can signal ovarian cancer. In premenopausal women this test is extremely unreliable and can be elevated for completely benign reasons like having endometriosis or even being on your period. It can also show normal when there is stage 1 ovarian cancer. Therefore they don't like to perform this test on premenopausal women. They still do though and I have had the test done and will have it done again prior to my surgery (my score was 7 .. anything between 0 and 35 is considered normal). I have a 9 cm simple (fluid filled) ovarian cyst that has sat there for over 18 months and I will have to have it removed at the end of April. They can never tell you 100% that it is not cancer unless they have biopsied it but it is EXTREMELY rare that ovarian cysts are cancerous, especially if they are filled with fluid.

An adnexal cyst or mass can be anything really and this is why it is important for you to get that report and see what the radiologist or doctor who did the test said. This may help put your mind at ease because in these reports the doctors will offer their professional opinion of what it is they are looking at and they are very often correct (their impressions are actually more accurate than the CA-125 test). Ovarian masses can be completely fluid filled, part fluid / part solid or all solid (ie. tumour masses). ALL of these things can be benign and often are in most cases as ovarian cancer is extremely rare, especially in premenopausal women with no family history of the disease. However, if a mass is large and/or contains solid components they will often recommend you have it removed so that you can be 100% sure. Even in my case, that of a fluid filled simple cyst, they are recommending removal mostly because of the cyst's size and the fact that it is growing at a slow rate. If these things get too big they can twist on themselves and cause a lot of pain and tissue death of the ovary.

Yes the ascites are rather troubling but this can be caused by a wide variety of things and all women have a certain amount of liquid in their abdomen. I have seen many posts of women who have ovarian cysts who also have ascites and their conditions were still benign in the end. I even have relatives (sister in law and cousin) who have had ovarian masses removed (my sister in law's was a 12 cm septated cyst and she scored high on the CA-125 ... she had a huge surgical incision thinking it was cancer and of course it was not .. that CA-125 test freaked her out for nothing and it scares me more for that reason than for anything else). Some of the women on these boards have even had complex cysts (solid and liquid) resolve on their own.

In your case, the discomfort you are feeling requires immediate attention and you really need to know what you are dealing with so that you can be on top of the situation and take an active part in your treatment. It really sounds like your doctors are taking things well in hand which is wonderful. I too feel very reassured knowing that my gynecologist is taking my situation seriously and that she always gives me her honest opinion (no sugar coating but reassuring nonetheless).

These ovarian cysts are extremely common, especially in premenopausal women but also in postmenopausal women. They cause a lot of anxiety but most of them are more of a nuisance than anything else.

Oh and you were asking about the fibroids. Fibroids are completely harmless except for the pain and bleeding that they cause. Where they are located (ie. in the uterine wall or inside the uterine cavity) does not really make a difference except that sometimes when they are in the lining of the uterus they may cause more pain as they interfere with uterine contractions and the uterus contracts not in a uniform manner but a little more chaotically, causing more cramping during menstruation. They are called fibroid tumours and this sounds awful but they are nothing to be concerned about unless they are causing you trouble (they can be quite large sometimes). I myself have a fibroid and I am completely unconcerned about it. They see it every time they do the ultrasound and it just sits there quietly. Most women by their forties have fibroids and don't even know it. Some women have lots of trouble with these and have to either have them removed or go through some sort of procedure like the newest one of cutting off the blood supply to the fibroids so that they shrink and die. Keep in mind that fibroids will shrink when you go through menopause (they feed on estrogen).

I hope this has helped to inform you a little better. I sincerely hope that you will get to see your doctor shortly so that you can get on your way to a speedy recovery. Take care of yourself and if you need to talk, feel free to come back. These boards can be very helpful. All the best.

Estria

 
Old 03-31-2009, 04:53 PM   #11
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senoradee1 HB User
Re: Nervous Newbie

So I am right about assuming that the ascites is not a good thing. What if its just a little bit?

 
Old 04-01-2009, 12:12 PM   #12
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Re: Nervous Newbie

Hello,

We all have some fluid in our abdomen and this is usually not visible on an ultrasound. Ascites can be due to many different things, including a ruptured cyst where the fluid from the cyst is released into the abdomen. Usually the body will absorb this fluid in time. All depends upon the amount of fluid in the abdomen. If it is a lot, you need to have this checked and treated (drained) as it will cause great discomfort.

I have read many posts of young women with fluid on their ultrasounds, even larger amounts, who have gone into surgery to remove ovarian cysts and everything was just fine after that. Therefore, it is difficult to know only from the ascites what kind of a problem exists and if it is permanent. Your doctor will know better what course to follow when he actually sees you. Just be sure to list all of your symptoms and all of your questions as this will help you get what you need out of the appointment.

In the meantime, pamper yourself as much as possible and keep your mind occupied with other pursuits rather than worrying about worst case scenarios which will never happen. This is a very negative use of your time and does a lot of harm. I find it helpful at times like these to get out of the house and take an invigorating walk in a park or area I have not visited for a while, or to go and have lunch with a friend, or even go shopping. You really have to force yourself to do this so it is not easy but it is well worth it. Our minds can be quite annoying at times and you have to rise above this and not let your worst fears get the better of you. They are just that, fears not facts. Remember that. Oh and try to stay off the internet. The most basic symptom can be turned into a life threatening illness on the internet and you don't need that kind of reassurance.

Take good care of yourself and let us know what the doctor says.

Estria

 
Old 04-01-2009, 01:20 PM   #13
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Re: Nervous Newbie

I find that listing to "Jessie's Girl" or "Is she really going out with him" while dancing with my dog helps too

 
Old 04-09-2009, 09:17 PM   #14
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senoradee1 HB User
Re: Nervous Newbie

Got a call from my GYN while I was headed for another doc appointment in the city far away from his office and he asked if I could come in right away he had the results of my blood test and wanted to talk to me. Mind you he never calls me

 
Old 04-09-2009, 09:21 PM   #15
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Elizabeth1975 HB User
Re: Nervous Newbie

When can you see him for the results?

 
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