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187799 tn?1219609573

Doc Appt. Tomorrow (4/23)

Just wanted to ask you all to think of me tomorrow and hope that I get some answers.  I'm having another tvu and consult with the doc. This has been an awful weekend with increased symptoms from my cysts, fibroids, adenomyosis, etc.  I have such severe cramping, backaches, fatigue, and the blood in my urine is quite noticeable now. I also have been having alot of discharge (white) for the past several days. As I have no one that cares to listen to me, my depression is at an all-time high (or low, should I say). I'm going alone to this appt. as the last time I went in January the doc decided to take a wait and see approach and that gave my husband ammo to just rant about how I'm a hypochondriac and just like his mother, blah, blah. I don't need that kind of "support" at this appt. I just feel so alone, so please say a prayer that I find some answers and get on a road to physical and mental health for my children's sake.  As always, you are ALL in my thoughts and prayers. Best........
15 Responses
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167426 tn?1254086235
You are not alone, look around you, there is the battalion marching along side of you, you are showing great strength just by following through on this.  God also is walking with you,  holding you fast in his arms.  You are being very brave and smart to get some answers regardless of what others are saying.  We will all be here for you, all along the way.
Helpful - 0
187799 tn?1219609573
I'm crying just reading your post to me.  Thank you so much; you have no idea how much your words mean to me (well, you probably do).  My very best to you and your daughter during this most difficult time for you.  God is also with you.  Thank you again.
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Avatar universal
I will also be thinking about you and say a prayer that you get the answers you need . We are all with you and know what you are going through . Take heart , you are not alone . God bless , take care - Silver
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196469 tn?1365387975
Be strong and press your Dr for answers  - you deserve better!!!
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16702 tn?1234090645
When I went to get the results of my test, I had no idea what to expect and left the dx's office not understanding my sickness. Thanks to Dr. Goodman SimplyStar and other members of this forum, I quickly learned about my sickness and I realized that I had to ask questions.  I would like to suggest you make a list of questions that you want to ask and put it right on the table in front of the doctor.  Then if need be, go down your list and ask each question and write down the answers.  This will help you feel a bit prepared and more in control.
You need answers to all the pain and disconfort you have been experiencing and I truly wish that  you get answers on Monday.  I will send you energy.
Kimchi
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Avatar universal
Hi There! I am sorry to hear about your situation! For your dr's appt, make a list. Leave space between the questions to write in the answers. Writing things down gives everyone a chance to think about both the Q and the actual answer. Ask about "the plan" or a probable timeline, pain management, surgery, and for copies of your tests. Tell how you are supporting your path to better health, and ask if there are other things you can do.

Since, at this time your hubby is not a supportive part of your illness, you need to feel and be organized and on top of things. At home, set up a file with your Q list, copies of tests, prescriptions, fact sheets and research. In it, have a master sheet with the dates of your appointments, the nature of them (who requested, their purpose, results/plan etc). Have another small notebook in it, where each day you write how your day was and symptoms you had/did not have etc, if you took time off work, meds you took, when your periods are etc. regarding your tests, always make a copy - if you have to go to the emergency, bring along the latest results to give to them; it speeds things up. This is not being a hypochondriac.

Your depression is an important topic to discuss too. If you are not comfortable talking about it w/ your doc, then think about if your doc is right for you. Trust your instincts. If your concerns are dismissed, just repeat the answers aloud before you write it down. EG,
Q. My stress is at an all-time high. I am in too much pain to do my regular sports - soccer, yoga, running, gym - which are major part of how I balance my life. What do you suggest I do?
A. You'll just have to wait.
Be assertive, be yourself, be honest.

I am  familiar with the cyst but not your other conditions. When my complex hemorragic cyst was discovered following two painful rupture epsiodes last September, it was 6-7cm. My family doc (a teaching family practice affiliated w/ a women's hospital) took a wait and see approach, w/ ultrasounds each month. That was probably the best way to have a wait and see approach, but it's weakness was that the wait and see went on for too long while the ultrasounds showed the cyst was growing not shrinking. Up til December, I had 5 mini-rupture episodes. Those meant I had to take time off work, and since some of them happened w/in hours after exercise I severely limited exercising too. I was also in the middle of a difficult separation, and limitations around my physical outlets was very hard on me. After the December episode, when the cyst had grown to 9cm, I made yet another appointment and said I am not leaving here without a decisive plan. I asked for a referral to a gynecologist, which they agreed to immediately. It took kind of a while to set up the appt, but the gyn agreed w/ me 100% that surgery was the answer to this problem, and now that 12cm sucker it is out.

You are your best advocate. With a good and comapssionate doc, you will be in the best possible position.
Helpful - 0
187799 tn?1219609573
Thank you all for the wonderful words and support. I will make my list and I will demand answers; I must do that. Although I still, in the back of my mind, think I'm imagining all of this - that is very dumb, I know.

I am so very angry at my husband right now for he is the only person I have that should be walking with me (besides God) and he is not at all - golfing today! I guess it drives me nuts that he just goes about his everyday life with absolutely no regard for what I am going through physically and very much mentally as well. I've pretty much shut down my social life for the past several months (almost a year now really) because of feeling ill, fatigued or both. He just continues to be out there and that hurts me to no end. Because of whatever is going on with me, I have no energy, no motivation, and don't care at all to be in social situations. Can I ask if anyone else felt this way with the gyno issues and/or ovca, but before anything was dx'd?  This is another facet of me that has totally changed.

I feel that I've basically upset his idea of what the "perfect" wife should be (that's how I feel anyway). Hey, I can't stand feeling like this at all, who does? But he doesn't get it. When/if he does ask what's wrong, there is so much wrong that I just mess up my thoughts and don't communicate very well to him. We've tried counseling in the past for other issues, but he doesn't like it.  Oh, well if I can just get through to tomorrow without going insane, hopefully I'll get what I need from the doc and go from there.  

Sorry to babble, just feeling very alone right now.  Thank you, thank you all again for your kind words and I'll let you know what happens.

Elizabeth
Helpful - 0
167426 tn?1254086235
The journal is a very good thing to keep, Leslee has kept one from day 1, takes it with her to all appts,  writes down her Q&A there also. Her Onoco even asked to borrow it one week end and is now telling his pts to  do it.  The Onoco clinic is even going to print up a journal now for all the chemo pts to keep up daily.  Had to laugh at being compared to your MIL, my hubby tried that a couple of times, so I told him to go back home if he thought mama was better.  He never left.
Helpful - 0
187799 tn?1219609573
I was posting while you two were posting to me.

TOTJ:  Thank you very much for the great suggestions - will the gyno/onco really listen that much to my babble about being depressed, etc.?  I've just never felt comfortable pouring out my emotions to an MD like that.  Actually I did to my regular gyno last year when this all started. He listend to me and then told me it was all stress related. That's the last time I saw him.  I'll try it, though tomorrow - thank you!  I'm sure I'll break down though.

SimplyStar:  Thank you also for your journal suggestions as well.  Alot of times, I'll just sit down and write a letter of my emotions and that makes me feel a wee bit better sometimes. I know your daughter will make it through with her strength and a Mom like you - she has to!  I've also tried that with my husband; he stays, but sometimes I'd really like him to go, like now.  Don't get me wrong, though.  We've been married 18 years and been through some rocky times, but we have always been committed to our marriage completely.  We just don't communicate very well.  My husband is not an emotional type person and I am very much so.  He  had problems with polyps several years ago and he really thought he had cancer - it was close. He totally broke down and cried and I couldn't believe it.  What did I do? I consoled him, held him, called him and didn't leave his side until the path came back negative. It's just that my issues have been going on for so long - almost a year - that he's tired of it I think.  In additionk, throughout the years, I've had alot of medical issues I've gone through - cone biopsy, complex cysts already removed a few years ago, pregnancies, mastoiditis, and the never-ending anxiety and depression issues for which I don't have a very good handle on right now.

Ok, enough about me...... Thank you all, again, for your wonderful support; you have made me feel not so alone today. Now I'm gonna go out and soak up some vitamin D for a few.  Thanks again...
Elizabeth
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Avatar universal
Hello there....you are getting lots of great suggestions....what I did is go out and purchase the loudest colored file folder I could find....that way I could find it when I needed it....that file remains on my bookshelf to this day and is easily located!  That file went with me to every appt....whether it was to my gyn or oncologist....to treatments.....to get my port flushed.....I asked for and got a copy of every blood test, every ultrasound, every exam , all my pathology....and all of this is kept in my folder.....I have taken notes and written tid-bits of info all over this folder....I stapled business cards from my surgeon, oncologist , gyn....etc. to it.....everything is right there in one place.  In a way this folder is my autobiography for this stage of my life....sort of symbolic.....I have now put it on the shelf.  I know it's there...I continue having my port flushed  every seven weeks and see my gyn and oncologist every six months so the reports continue.....the folder continues the thicken but at a much slower rate....It is a reference material for me now.....it has been through a lot with me....sort of my buddy .....I am glad I have it.
Good luck at your appointment tomorrow.....our collective heart is with you as you go through these days....you can do this.....don't be submissive....this is your life....make certain he knows he is not on a pedistal...that if he wants you to respect him he must show you the same respect....you and he are going to work together as equals to fix whatever is not right....make certain he realizes you expect him to answer your questions and that you are not simply putting your life in his hands.....this is a team and he is not god!  Please do stay in touch......
Peace.
dian
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106886 tn?1281291572
I will be eager to hear how things go for you tomorrow. I have many many thoughts, but most have been expressed here already.

The motivation factor can be a big problem when not feeling well and I would say that YES...this can definitely be related to Ovarian issues by way of hormones. I speak of  the hormonal connection often, but am utterly amazed at how profoundly we are affected by these female hormones and if you are having issues in this area it is highly possible that your hormones are totally out of sync and this can affect you more than you know. I love the book, "The Wisdom of Menopause" by Christianne Northrup, MD...I highly recommend it. Even for those not in Menopause, it is great.

Also, I just wanted to say that there is total value in having counseling on your own in case you have not considered this yet. My spouse and I have had counseling several times, too..and, he doesn't like it either. Well, too bad, right? But, on the same note, you cannot drag them there, so I started going on my own and it helped so very much. It was basically a way to  make me stronger so that I could deal with him and the end result was that it did strengthen our marriage. Going on 27 years...yikes! There are still issues, but there has been much progress too and it is that I figured I would take care of myself and if he wanted to "come along for the ride" great...but, that I was not going to deal with all of the "****."

I remember when I was caring for his Mom in her early Alzheimer's stage. He was not very supportive of me at that time and that was a very stressful position to be in....love my MIL dearly...difficult dealing with an Alzheimer's patient though. My friends were outraged that my husband was not more willing to listen to me....(rather than.."Well, if you don't like helping her, quit!") and so I finally told him that I was outraged and appalled that he was not able to show more gratitude and support.  I am not sure what changed his tune, but he did start to turn things around. He was also in denial about his mom. He is now the first one to step up when she needs help. And, we've come up with a code word for when one of us needs a break when she is over....even if is a chance to break away and do laundry.

Sorry to ramble here a bit. But, I feel for you...and, yes...you are your own best advocate. The doctors don't make it easy for us at times, though, do they? I've had both good and bad experiences.

Best to you.

Mary
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187799 tn?1219609573
Thank you both also for your wonderful words of wisdom; I am overwhelmed at the outpouring of support for me today; I am special today because of all of you!

Diane - Wow, that souds very much like the way I am - I have a folder for everything.  And I did start a folder for my appt. in January.  I also picked up ALL of my records from the hospital this past week ($75 worth - geez) that will go in my folder. However, with the way my mind has been lately, kinda mish mosh, alot of my organizational skills have gone out the window.  Even my husband has noticed; he says I'm not like I used to be - so organized; well, well, well......... As I'm going to reference Mary below, it is the hormones.  Thank you for reminding me to get my folder together with all of my lists of Q&A's tonight.  God Bless you on your journey and may your folder become a permanent reference point and remain on your shelf as such in the very near future.

Mary - I think I've read your posts before regarding hormones and I couldn't agree with you more - like 120%!  Since my anxiety/panic/depression came on after the birth of my first child, I totally know it is all hormonal driven.  Before I became pregnant with my second was when I went into full blown panic attack and was taken to the hospital.  Was on meds for a few months then for it (valium) but then became pregnant. I did not need anything while I was pregnant and my anxiety was in full check - no problems whatsoever.  Fast forward to about 9 months after she was born - they set in again.  So somehow pregenancy, of course, imbalanced my hormones permanently, until menopause I believe (we'll see!).  That is another major reason I believe something is very wrong; my mind is almost incoherent sometimes within the past year and I literally "lose it" alot lately.  My 15 year old thinks I'm bipolar, which is a very, very scarey thought.  She says I'll yell and turn around and talk sweet and she says it just doesn't sound right.  God knows, I know it doesn't sound right, but it's my hormones taking over!  So whatever is wrong with me, major/minor, my hormones are way, way out of balance and that is reason enough to get rid of the cysts, endo/adeno, fibroids and whatever else lurks in there. I just want to feel normal again.  So, thank you also for reminding me of how important the hormones are and how they are responsible for my mood swings (to say the least) and to be honest and persistent with the doc tomorrow on that front as well.

Just, God Bless all of you today and always!!! Thank you soooo much.  Will let you know tomorrow.

Elizabeth
Helpful - 0
106886 tn?1281291572
Two years ago I was planning a party for friends from work...doing the whole house sweep thing and all. And, at the same time, my hormones were not in balance and I could feel it. So, I was starting to work with a specialist who charged an arm and a leg for consults but I figured I had no where else to turn. I had already been using the bioidentical hormones but as I said, things were "off."

During the "clean sweep" of the house, I threw away a pair of white gold earings that my husband had given me for our Anniversary just two months before. I told him right away, but alas, he did not remember that. So, months later, he suggested I wear the "new earings." GULP!  When I explained the whole thing again to him, he started to get upset and I firmly interrupted him and said, "Why do you think I'm getting help for this?"  

It kind of falls into the camp of 'try being inside my skin' doesn't it?

I recall yelling at my husband during one incident before I had my hysterectomy in 2000 and before I started doing all of my research on hormones. It felt like I was possesed or something...like "Who is this woman." It was horrible. I do wish I knew then what I know now about the hormone connection and all.

Do pick up Northrup's book....also Erika Schwartz is good. I would have Northrup's book as the basic book and then venture out from there to start figuring out the hormone thing and how you can help yourself to feel better.

Oh, and I did want to add that I only saw the specialist for a short while as I was able to find someone who took my insurance...and, I have decent insurance, but it is a hunt trying to find the specialists who work with the bioidentical hormones who will take insurance. I hope it improves for our daughters and I should add sons, too, since testosterone depleation can happen over a twenty year period...but, is something a lot of men suffer with, just as women do, but ours depleats faster.

Oh, and at Christmas of that year, my husband replaced the earings with a new pair. Luckily we can laugh about this now!

And, on the Bi-polar front....I noticed that when our only was home for Christmas from her college (she is a senior) she threw out the "bi-polar" comment several times about anything she felt was "off."  At times I do feel like saying, "Yes, honey, and when you get your degree in psychology, then I will listen to your opinion on the bi-polar issue."

I actually do work in the field of psychology ....and yet, I was able to trace anxiety and all that went with it (happened when I hit 40 thirteen years ago)  back to hormonal imbalances in myself. Again, if only!!! There was a time and place for anti-depressants, but I have not needed any for some time now.

Best to you....

Mary
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106886 tn?1281291572
Thought I'd clarify on the "thrown out" earrings.

I threw out the box in which they had arrived thinking I was de-cluttering my life. Well, I did not check to see if the earrings were in there....

Goodnight to all!

Mary
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187799 tn?1219609573
I cannot believe how much your story sounds like mine.  Yes, I feel possessed and it is scaring the hell out of me.  I feel like I'm walking around in someone else's world so I know what you mean.  I know mine, as was yours, is all related to hormonal imbalances; that part I finally realize.  My doc did change me from Zoloft to Effexor a couple months ago b/c of the lack of sexual feelings with the Zoloft.  But now I am actually non-existent as a sexual person.  Yet another major symptom of whatever is going on.  I'm switching back to the Zoloft only because I was very comfortable with it and maybe the Effexor is not agreeing with me - who knows (hopefully I will soon). I will get the books you recommend, but I would also like to "pick" your mind a little more, if I may, if I have any more questions.  You sound like you really have it together - wonderful for you. I'm 42 and don't think I'm near menopause yet as my mom didn't get it until her early 50s I think.

Will post tomorrow hopefully with good news.  Thank you so much again.
Elizabeth
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