All the Markers - No Answers

[lilly64]

I am in the same situation as alot of you on this forum with all the pain, bowel, nausea, fatigue issues, etc. I went to the gyno/onco for the first time yesterday and feel I was given the brush-off and I'm still so scared and worried. It consumes my mind 24/7 as I feel there is something really wrong. For about the past year, I've just had this feeling something isn't right; my periods started getting very heavy and irregular and I just haven't felt myself. Then mid-December my issues got really bad - abdominal pain/cramping, extreme lower back/side/groin/thigh/leg pain. And, of course, at first they thought it was a kidney stone; nope, a cyst, fibroids, and adenomyosis. They drew blood yesterday for a CA125 and also did a pap. But now I have to wait another four weeks for another ultrasound; this pain along with my mental well-being (or lack thereof) will put me over the edge by then.  What am I supposed to do now? I feel very alone and very scared, but there is no one I can talk to outside of all of you. I have all of the markers for this disease and when I present thme to the doctor, I get the brush off; so what's the deal with the medical field telling women to pursue these symptoms if the doctors won't listen?  I also had 2 complex cysts removed in May of '04 and also had stage 3 dysplasia of the cervix for which I had a colposcopy and cone biopsy done in 1990.  So there is also history there. At yesterday's appt., after his PA examined me, he came in and said, "so you have a little cyst, huh?" I felt like screaming. I just became flustered.  Any advice?  Thanks all.

[lilly64]

Hi - I'm sorry it wasn't one of your better days; I know the feeling.  Hope Friday is better for you.  Will chat then.  Take good care.  Lilly

[Shellhall]

I was just dig with endo... He thought that I had it but as we all know you really do not know until the surgery... When he want in for the LAP he just said that he really could not do much because there was to much(blood)... I also have Adeno so I think that I am going to have to get a Hysto... I am not thrilled... I am 38 and as of about three months really did not have any problems(that I knew of)... My question I think will be if my endo is so bad do you think that there is a possibilty that my Hysto can be done vag..? I really do not want my stomach cut on... I think that that is one of my better features... I know that I should not think about that but I do... I have three kids and really have no stretch markes... I am fairly small and I really like my belly...

Shelley

[s13]

Hey Shelley, glad to hear from you...anything you want to know about Endo, just let me know; I was surgically diagnosed w/ stage III Endo at 17 yrs. (I'm now 30).  I've done soooooo much research, since mine always came back to haunt me again & again.  Read up on some of my other posts for specifics, especially if you need advice about experience.  I'm sure there's more of us out there than we realize.  Keep me posted & I'll be thinking about you.  Peace.

[s13]

Hey Lilly, not feeling so well today (left work early), so I'm keeping this 1 short.  I live near the Kansas City metro area;  been here most of my life.  I don't mind the personal q's from ya.  We aren't so far apart, are we?  Gonna go lay down, chat tomorrow.  Peace.

[lilly64]

I like to make people laugh and the material of my every day life is all the material I need - LOL!  Foot soak sounds good; wish I had the time for it!  I'll just sneak out of the house tomorrow when my husband gets home for a pedi!  BTW, where are you from, if you don't mind me asking.  I live in the south suburbs of Chicago, IL (about 1/2 hour from downtown Chicago), but was always a City girl til we moved out here four years ago.  I do like the change; not like it's country living, but much less congested than the city.  Take care.  Lilly

[Shellhall]

Wow reading all of this makes me feel better... I have been diagnosed with sever endo and Adeno... I just had a Lap/Hysterscopic and D&C last friday... The doctor said after surgery that it was to bad in there to really do anything... He said that there was to much blood in my abdomin and my uterus is the size of a grapefruit at this time... I did have a few pain free (for the most part) a few days after surgery but it is coming back... I have really enjoyed talking to everyone here for support... My husband and kids are great... My story is a little different... For the most part all of my problems started about three months ago... I have never had a problem with pain/bleeding... I was also bragging how healthy I was... I have no history in my family of any cancer which is really good... My mom had a partial hysto when she was 42... But from what she tells me it was because if really heavy periods... I ask her is the told her anything else and she can not remember... I think the hard part before surgery was not knowing what is going on... My kids ask me when I am going to be better because I am never sick and I am now in bed alot... My doctor has been wonderful he really has listen to what I have been saying... Never second guessed my pain... He did say at one appt when he was doing my followup pap that I may have IBS but has not said that again... I would really love to be able to talk to all of you and together we can help each other...

Shelley

[s13]

You've already got me laughing again...& again...& again.  I'll be checking in w/ you daily for our "inspirational" chats, no doubt!  As long as I'm feeling decent, I'll be right here...for you & anyone else who needs me (but you're the most fun)!  Keeping it upbeat is great, thanks.  Go nurse that foot of yours; try some aromatherapy salts in a foot bath.  It does wonders for my ugly 'lil pigs.  Peace.

[lilly64]

Will do, but we may need some inspirational posts before then, so just keep in touch; i'm here to listen any time!  You certainly have a load on your plate.  As a side note: (and this is kinda funny b/c this stupid stuff always happens to me - LOL). I have a stupid bunion on my right foot that really hurts sometimes but is also the least of my concerns right now.  BUT, today, I was fixing one of my 1-year-old's toys and the thing weighs about 20 lbs.  You guessed it - dropped it right on the frinkin' bunion!  Oh well, put some ice on it and kept goin'!  Best of luck and keep in touch.  I'll thrill you with my stupid life stories if you wish - LOL!  Lilly

[s13]

Most definitely...I need all the soul sisters I can get!  I'll be going in on the 2nd for my CT, immediately following to the gen. surgeon's office.  The gen. surg. will discuss the plan on how he'll remove the ascites.  That will result in another date set for a needle aspiration (& test for Cancer).  My consult for my colonoscopy is on the 5th; I'll be leaving there w/ a date as well.  Finally, my consult for my laparotomy is on the 6th; I'll be discussing w/ a GYNOncologist & a gen. surg.  I'm hoping they'll be able to aspirate the ascites through laparoscopy (that's what they're starting w/), but my OB said probably not likely w/ my surgical history.  8 more days of patiently waiting...thank God!  Thank God!  Thank God!  I'll post a question directly to you w/ my result on the 2nd...you do the same for your appts., okay?  Peace.

[lilly64]

I totally think we should go on a talk show or something.  What the heck ... every publication, documentary, etc., etc. on women's health issues say that if you have these symptoms (and especially symptoms all together) to pursue it with your doctor and get tested, treatments, etc.  Has anyone told these publishers, editors, etc. that when they give this advice and a woman goes to her doctor, they don't listen?  And, really, basically blow her off and tell her to take an aspirin?  We really need to blow these doctors out of the water for what they really are - untrained and unreliable.  If these shows/publications can print this stuff they best have the doctors to back them up, right?  As I don't particularly like Oprah, who else could we bug?  I'll get the ball rolling.  I'm fed up. Men's issues are treated so much more promptly and seriously b/c men would not stand for any of this, believe me! Let's us three keep in touch always! Lilly

[s13]

Thank you so much ladies, for your kind thoughts...you 2 are the only ones who have taken the time to reach out to me since I started posting.  You have no idea how much that means to me.  You 2 will have to keep me posted on how you're doing & I'll do the same.  I haven't been feeling well lately (missed work & my b-day party w/ friends from work today), but I promise to keep up with you 2!  Don't feel like a whimp or a baby, every single 1 of us has been through a certain amount of "hell & back" situations, none more significant than others.  You both deserve to let it out, like I suppose everyone here does, right (LOL!)Peace

[lilly64]

I love that commercial for cymbalta - i swear it's me some of the time.  We own a restaurant/bar and, you knonw, when I go up there for a great band, I am the party girl that dances all night (can't drink much anymore also b/c of the nausea and it makes me totally sick lately - but that's fine with me - no more hangovers!).  But at home I can be sooo down and my moods shift from one way to another at the flick of a switch.  Is that also the medication that they say does not have the sexual side effects that Zoloft does?  I think I'll call my regular doctor and try a new one.  I'm glad you liked my cat story - wasn't sure since I don't know you.  But you sound very much like I would like to be and your husband sounds WONDERFUL!  Maybe my husband is just scared; he's not one to show emotion at all.  The only time I truly saw an emotion from him was when they discovered about 11 polyps in his colon and they weren't sure if they were cancerous - he cried.  He was fine and goes regularly now for colonoscopies.  I should remind him I'm going through the same thing only it's taking forever; with men, they find it, treat it, and on with life!  Keep me posted on your progress as February 1 is just around the corner.  I'm expecting my period any day now so maybe something will "pop" out and I'll be fine.  Keep positive - right?!  Best wishes.  Lilly

[Ms_Makita]

WOW..I cant believe how many of us are in the same boat on here and dr's that are not taking us seriously!
    s13 you been through so much! I feel like such a whimp now! I have similar symptoms as lilly,family history reproductive/colon cancer.I'm 28 yrs old (29 in 3 weeks,yay)right ovary is enlarged to golfball size contain's  small 1.9 complex mass,bleeding, and possible infection.Cant believe little cyst is causing so much pain! I have  had worsening symptoms for last 8-10 months,pcp blame it on IBS,and like lilly,I'm getting blown off, wait and see approach.The pain  scale 1-10 daily is 9-10.I dont think IBS causes you to lose 100lbs in 9 months,hair loss , heavy chocolate/black periods,and constant back/abdominal/pelvic pain!
       I'd say we all go on talk shows to get the msg out and how dr's dont take us serious and blow us off.It's our bodies and we all know when something isnt "right".I thought female dr would be better but its just as bad.When you try to tell them something they like to remind you they are the dr.
     Dont give up,we will get an answer soon,regardless of good or bad news,I just want to know! Your all in my prayers~God Bless!
  *hugs* Stephanie

[s13]

You definitely gave me a good laugh, thanks!  Sorry to hear about your other health problems, 1 set is enough to deal w/.  As for your husband w/ lack of compassion & understanding, pray he'll come around eventually.  I can definitely sympathize w/ the whole vasectomy situation, poor guy; ironic though, he thought he'd be getting lucky more often & now everything is at a stand still.  It will get better, just have faith in yourself & your husband.  My laparotomy in '05 was 2 wks. after my wedding, so our honeymoon consisted of my husband sleeping in a chair at my bedside (he wouldn't leave me for 3 days).  The guy I was dating for 4 yrs. back in '01 when I had my TAH left me, since I wouldn't be able to give him a child "naturally".  I've been through alot, yes, but it has made me stronger & much more humourus when it comes to serious things.  The quality of someone's life is what they make it & I'm prepared to make it lively!  Have you tried other fun "things" w/ your husband, just goofing around; I do alot of that w/ my husband (I had to learn to improvise) & it satisfies him very well...think about it.  As for the blood clots & streaking, it could be a sign of cysts recycling themselves; even postmenopausal, I've had stringy white (solid in color) discharge in the consistency of a slice of raw chicken; my OBGYN agreed w/ my conclusion.  I noticed you mentioned the pain more in the right quadrant; I also have pain more so in the right side; I even asked my dr. why, if my tumor is on the left side & the ascites throughout...he noted that was another reason that concerned him even more, so check on that please!  You keep me posted & I'll do the same...thanks for responding, it does take a load off; my family is supportive, but also exhausted w/ my medical history in general; they think I'm keeping everything inside, because I haven't broken down (yet); you'd think they would praise me for being so positive & upbeat, but I think they're having a hard time w/ it because of my age & my 9 yr. old son.  I've been on Effexor, Effexor xr, & Zoloft; the most current being Cymbalta (you know the commercial that is so dramatic & asks "WHO does depression hurt...everyone.") & I loved it!  Keep me posted & I'll do the same.  Thanks for the thoughts & prayers, I'll most definitely be doing the same; when someone reaches out it makes a world of difference.

[lilly64]

Wow - do I feel like a baby now!  Your story is (un)believable (if you get my () drift).  Your experience with that doctor must have, as you said, been the worst ever I've heard.  I would have just crawled into a hole, but God Bless You for pursuing your issues - that is true inspiration! Here's my whole story (hold on for the ride!):  There is also family history of breast and colon cancer with my maternal grandmother dying from colon cancer (only upon autopsy did anyone know this); my maternal uncle had colon cancer and is about a 10-year survivor; and my paternal aunt died of breast cancer in the end; she had it when she was young (maybe 35), was in remission for about 40 years and then it came back and that was that.  I did have a colonoscopy done about 10 years ago, but I know I'm due for another one. My regular doctor has been treating me for acid reflux for about 5 years now (no testing, just from my symptoms I described back then); if I don't take that little Protonix for one day, I'm an acid indigestive mess.  So that's probably something I should look into as well.  

I have been on Zoloft for about 10 years and Wellbutrin for about 3 years (Wellbutrin b/c of the sexual-or lack thereof-side effects from the Zoloft) due to anxiety and panic disorder.  When I mentioned about a year ago started feeling sick, I also started having what I thought was panic attacks, but now I'm not so sure.  I've had several of these little attacks in the last couple months and immediately, of course, take a valium to calm me, but the real thing that I believe is helping these attacks is fruit. So I think I have some sort of low blood sugar thing going on as well.

I was in the ER on 1/13/07 for complete constipation along with my regular extreme pain and they did a CT for diverticulitis (the ER doc was sure it was this as he absolutely could see no correlation between the pain and these cysts and fibroids - another mad moment!).  Was clear for diverticulitis but did have a 3.5 cm cyst on my left ovary this time - was the right one a month ago, which was pretty much a functional cyst.  But, nonetheless, still have all the pain on the right side.  I have left abdominal pain from the cyst there now and I can feel it through my belly.  My periods have gotten so heavy and clotty (dime-size) - the blood actually just pours out (sorry, gross) and last month the blood was streaking-like and splatter-like. Do you have any thoughts on that?

I cannot believe (well, yes I can) that they said maybe they never took out an ovary from you.  I hope you see the humor in this little tidbit story: my cat went in to get "fixed" and six weeks later she was in heat.  Took her back and they were completely perplexed and thought I was insulting their intelligence as vets, but agreed she was in heat.  So they opened her back up and lo and behold, they forgot an ovary (or whatever is the same in cats); they called me promptly after surgery - "No Charge."  And, I certainly don't mean to compare you to my cat (LOL).

You are very lucky you have a competent obgyn - I've given up on mine after a couple instances now.  He put a Mirena IUD in me in July of '05.  For the next 2 weeks, despite the Zoloft, I was about to go insane.  I called him and met with him and he insisted it was due to my stress level not the IUD.  I just told him to take it out and 2 days later my moods were back intact! Talk about ego. Now when I began having this extreme pain he was almost excited at the prospect of the urologist calling it a kidney stone.  Oh, too bad for him when the urologist called back the next day and said it was a cyst.  Ultrasound later that week picked up the functional cyst, but also picked up fibroids and adenomyosis, the latter of the two are what I think are causing the problems.  Just read a post from someone whose doctor told her she had a fibroid, but when they went in it turned out to be a malignant tumor. I can read all these posts and take it all in and I could dismiss it being me, but this pain and my other symptoms keep beckoning me to go forward.  

I feel so sorry for your troubles - what a mess!  I certainly hope you get some relief in February and you are way, way too young for all of this (I'm 42).  I hope you have a very good support network of family and friends.  My husband is so not very supportive.  We are also going through some fincial crisis right now and trying to sell our house.  I suggested to him six months ago that we should pursue some counseling just to be sure. He said unless the therapist can give us some money, it would be useless.  I just threw my arms up! So, yesterday, I hear from him the whole story of how he's lived with this from women for 45 years - first his mom and now me.  His mom was always running to doctors, blah, blah, blah; about how he's going to cut off his penis and donate it to science b/c it's never used; and the best is he had a vasectomy back in August and, boy, was that a waste of time and pain, blah, blah, blah.  Also, this doctor I saw yesterday is supposed to be the best so I should just settle for his advice and wait four weeks - o.k. does this man ever want sex from me again (or even talk to him civily)??!!  I really think it's time for that counseling session!

As for any other medical issues with me, I was supposed to have neck fusion surgery this week as I have a protruding disc at C5-6 that has grown a spur and is now touching the spinal cord.  My gyno issues have taken a front seat for now, but still have the issues with that.  I do take vicoprofen for all of this pain and it does help, but that is also contributing to the constipation.  The ER doc did do one thing for me - they cleaned me out and told me what was safe to take as a bowel mover - the magnesium sitrate.  I believe I'm do for a bottle today.  The ex-lax worked a couple times but then had the reverse effect and that's why I ended up in the ER.

Wow, sorry this is so long - you asked for it (LOL)!  Gosh, I hope you get some definite help very soon and you are so in my thoughts and prayers, as is everyone else on here.  This forum has really been a God-send to me; just writing down my feelings helps.  Let me know what your dx is of me when you get a chance, doctor-nurse!  BTW, I'm also kinda a medical eagle/guru.  My husband says I should have been a doctor, just don't have the book smarts for it, though.

Best of luck to you and thank you so much for listening/reading of me.  Lilly

[s13]

I feel for ya...you sound so much like I have so many times in the past; it's frustrating when anger & depression sets in.  Could you elaborate on your medical history a bit more...I've suffered from stage III Endometriosis for over 12 yrs.; I've had 3 laparoscopies, a total abdominal hysterectomy, a bilateral-salpingo oophorectomy, & a laparotomy.  I'm only 30, w/ a long family history of multiple types of Cancers, including breast & colon.  I've been surgically menopausal since 2003 & my laparotomy was in 2005, for a benign tumor (size of grapefruit).  My symptoms started back up just 2 months after my laparotomy, starting w/ painful intercourse...that led me to a transvaginal ultrasound at my OBGYN; they found a mass/tumor w/ a complex cyst attached & fluid in my abdomen.  I stopped taking my bio-identical hormones immediately & was scheduled for another ultrasound 3 wks. later...the fluid collection increased slightly & my dr. referred me to an GYNOncologist to aspirate the fluid & test it for malignant cells; the Oncologist ordered a CT & informed me that I had an ovary that grew back, w/ a functioning cyst attached, further stating I should look into harvesting my new eggs; he further recommended I follow up w/ my OBGYN to have him aspirate the fluid & see a GI specialist for diverticulitis in my colon; his nurse made me feel like a hypochondriac & informed me that they had actual "Cancer patients" to attend to, after she argued that maybe my ovary was never removed to begin with.  That was by far the worst experience I had ever experienced.  I began seeing my PCP about depression (symptoms related to my surgical menopause also); I began presenting w/ bloody stools & blood tinged urine the following 3-4 months later.  My PCP recommended a colonoscopy, due to my complex history, even before ordering the fecal occult blood test.  I ran out of $, paying off bills from the previous laparotomy & other treatments.  Now I have finally got back on track w/ my OBGYN & when he discovered that I still have the SAME fluid in my abdomen, only w/ all the other present symptoms, he ordered another ultrasound right away (very angry w/ the Oncologist & even called him to find out why he didn't complete the aspiration & testing he ordered); the fluid has spread throughout the peritoneal area & way up in my upper abdominal region; the mass has grown to the size of a small grapefruit; once my insurance sets in Feb. 1st, I am having a CT, needle aspiration & biopsy (now being preformed by a gen. surgeon), colonoscopy, & finally another laparotomy; my OBGYN will not be preforming the laparotomy, but is having a general Oncology surgeon team up w/ the general surgeon (to be thorough due to my history).  All I keep thinking about is that if I wouldn't have let that dr. & nurse manipulate me (dismissing my symptoms), maybe I would've already had a proper diagnosis; but then I have to say thank God I have a compassionate experienced OBGYN, who is taking care of me.  I have to listen to my body & be assertive w/ the drs.; letting them be aware that I'm in nursing school, have had several family members w/ Cancer, & read alot about Endo & Cancer really helps!  He isn't threatened by my knowledge as a patient, like many can be.  Let me know how I can help...it really helps to know when someone can understand from experience!  Cymbalta really helped for me w/ depression.

[Beth1010]

My understanding is that ovarian cysts can cause all these symptoms.  I too have them and I'm scheduled for a CT scan on Friday.  It was suggested to me to start birth control and suppress ovulation and that will help with the cyst situation.  If  I do indeed have a cyst, this is my course of action.  Considering DeproProvera.  My pain is extreme - in my groin, lower back, side, and down my leg.  Sypmtoms are worse during ovulation and my period.  Wish you the best.