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Think I am crazy... :(

Justbnkim's picture
Justbnkim
Posts: 4
Joined: Mar 2013

Hi ladies,

I am going to lay it out here and you tell me your honest thoughts because I feel like I am going crazy...  I am a 33 yr old mom of 4 kids, my health has deteriorated over the last few years with wierd issues lol.  And I can not find a smart dr in the town I am in :(  issues below.

1999- .05 progestrone levels (said I didn't make progestrone on my own)

several miscarriages along the way, polycystic ovarian syndrome, endometriosis and hypoglycemia

2001-2006 seriously jacked up cycles: a month long or miss a month entirely or two, painful cycles all the time

2000, 01 & 03- Csections, underarm lympnodes swell all the time and frequent cysts or tumors in r. breast

2007- partial hysterectomy left ovaries & tubes (even though my ovaries are cystic all the time)

2010-reoccuring infection w/o ulcers of H. Pylori, pain in pelvic area, gallbladder removed due to large polyp, liver swelling (especially if I have alcohol), breast pain, leaking nipples mamograms ect, to be told its fibrocystic breast disease and not to worry about it.

2011-pain persistant still in pelvic area, bloating, dumping syndrome sporadically, painful sex, weight gain *not the healthiest of eaters and love soda*, more breast pain and negative tests, had a pelvic ultr. that showed r ovary to be larger and cystic. laproscopic procedure to remove adhesions and noted r solid mass on ovary & l ovary stapled to the wall.  Dr still felt need to leave them said not to worry as I wasn't a smoker or drinker just overweight. :( Anemic not iron defficient *whole red blood cells only *

2012- pain more frequent in pelvic area, painful sex, very dry vagina, hot flashes (menopause?) breast pain and lymph glands still swelling, now swelling in feet and legs very bad pitting edema, random pain behind r. knee with a little knot, achey body ie: joints bones everything lol.  08/26 went to er for Heart Attack long story but suggest congestive heart failure because there was a High D dimer test and Ischemia.  TIRED ALL THE DANG TIME, itchy skin.. Anemia. And random masses on rib cage and a spot that is very tender feels like it could be a cyst on liver maybe.

2013-Dry vagina, painful swelling of vulva, itchy, bleeding from urethra upon wiping if we have sex it hurts and or I am raw for days even w/ lube. TIREDDDDDDDD, sit down fall asleep.  Sick to stomach full even when I don't eat alot, peeing all the time(thought uti, bladder or kidney, yeast or vaginosis but neg tests) and the craziest issue is my bm when I eat I have a sudden pain like my stomach might explode from pressure.  Pain doubles me over and when I go to the bathroom it hurts in my pelvic area especially on the right side.  But weight gain even though I can't hold alot down. Pain and tenderness in bladder upon pelvic exam, bruising and leg pain in right leg only like it goes to sleep or just hurts like hell....

Now... I have been tested for everything from : lupus, RA to Thyroid to ulcers and gerd & fibromyalgia, breast cancer in '12 only by ultrasound & mammogram.... everythings negative. 

tests: alkaline phosphatase is high a few others show up from time to time. Just recently had a UA for the pain in bladder and it was neg.  My CA 125 was 7.7 and the dr said "all your blood work looks fine" but my BODY SAYS OTHER WISE!!! :(  Please help me 

Kim

Alexandra's picture
Alexandra
Posts: 1220
Joined: Jul 2012

I am so sorry about all the painful and unpleasant symptoms you are experiencing. Of course you're not crazy; you are absolutely right to keep looking for answers till you're satisfied and feel better.

Some of your 2012-2013 symptoms look like menopause (or low estrogen production) to me but you're too young and I am not a medical professional.

I am not suggesting that you have ovarian cancer and your low CA125 is a good sign.

But to err on the safe side, if you have not yet had full body CT scan - ask your doctor for it.

Best of luck and stay strong,

lovesanimals's picture
lovesanimals
Posts: 1248
Joined: Sep 2011

I'm so sorry you've been suffering so for so many years.  Doctors and medical experts always tell us to listen to our bodies.  Your body has been speaking loud and clear that something is up, and sometimes being told that the test results are "negative" is not a sufficent answer if your body is telling you otherwise.  As Alexandra said, I am not suggesting you have cancer because I'm not a doctor.  However, like you, I would want to know what's causing my on-going pain and discomfort.  Have you already had an MRI or abdominal ultrasound?

Kelly

Justbnkim's picture
Justbnkim
Posts: 4
Joined: Mar 2013

I have had several pelvic but no abdominal and I haven't had CT scan either. The last thing suggested because of what's going on is to find a gyn/onc to see and go from there... There's so much cancer on both parents sides it's a mess my sister had cervical cancer twice @ 17-20 yr. Just really frustrated. Thanks for talking with me! In your opinions do any of my issues sound like ovca?

Alexandra's picture
Alexandra
Posts: 1220
Joined: Jul 2012

Going to GYN/ONC is a good idea. You can not self-diagnose by googling your symptoms or by polling people on the internet. Don't do it for your own sanity. If you post on 10 different CSN boards and read their answers, you will convince yourself that you have cancer too. Abdominal pain, bloating, bowel, urinary and vaginal issues, weight gain or loss could be cancer or could have a million other benign explanations. Ovarian cancer is very rare in general population. If you had family history of breast and ovarian cancer (not cervical) and were tested positive for BRCA1 / BRCA2 gene mutation - there would be a reason to suspect OVCA.

From my personal experience and from what I read on this board - OVCA is often misdiagnosed by abdominal, pelvic and transvaginal ultrasound. Most commonly it is discovered through CT scan, by cytology of drained ascites fluid or accidently by pathology during another surgery (hysterectomy, appendectomy, etc.).

Justbnkim's picture
Justbnkim
Posts: 4
Joined: Mar 2013

I have had several pelvic but no abdominal and I haven't had CT scan either. The last thing suggested because of what's going on is to find a gyn/onc to see and go from there... There's so much cancer on both parents sides it's a mess my sister had cervical cancer twice @ 17-20 yr. Just really frustrated. Thanks for talking with me! In your opinions do any of my issues sound like ovca?

mopar
Posts: 1950
Joined: May 2003

So sorry to hear about all of this discomfort and problems you've had all this time.  The other ladies gave you some sound information.  But given your family history, they really need to be more aggressive in their investigation.  Anyone ever suggest a PET scan?  It's usually not done unless they suspect cancer or you actually have it.  But again, in your case, the family history and all of your systems. . . it sure wouldn't hurt.  What state are you located in?  If Michigan, I can give you a good referral.  Just your gynecologic symptoms alone would warrrant a visit to my gynecologic oncologist.  If you're not in Michigan, I would at least seek out this type of doctor.  And, some of your symptoms surely do sound llike menopause to me.

Keep us up-to-date when you are able, Kim.  In the meantime, sending lots of prayers your way that you will find relief and answers.

Monika

 

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