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The waiting game

LoyalT74
Posts: 10
Joined: Dec 2015

Hello Everyone:)

This is the first time I post on ANY discussion board.  I am 41 years old, have 2 young girls (5 and 8).  I'd like to share my concerns in hopes that someoneout there can tell me what to expect.

In 1999 I was diagnosed with a pituitary tumor and began meds for prolactinoma, where my gland produces too much prolactin and my periods cease.  Throughout the years since then, there have been times I am off meds because I don't have health ins and can't afford them.
  But when I take them, I get my periods on time.  If I don't , then I don't get periods...at least not until a year ago.  I stopped taking them for about 8 months and I would still get my periods.  I thought I was cured.  When I went back to my endocrinologist June 2015, it turns out my levels were sky high again, and I mentioned it was strange since I still had my periods.  She didn't seem worried and so I just started taking them again.

September 18, 2015 I began my period on time.  It didn't stop until November 17th.  During those two months I had everything from light to heavy to clots and cramping.  November 24th I went to see my gyn--was sent to NP, which is OK--and she does nothing but bloodwork and sit and talk and tell me what it probably is and the possibility of having an ablation or D&C.  No pelvic exam.  Doesn't ask what my flow has been like.  Sets me up with an abdominal--not vaginal--ultrasound next day.  Tech seems in a rush and is literally done in 3 min, even though he had originally said my bladder wasn't full enough??? (I offered to wait so he can get a better look but he just said NO its ok)

I went back December 14th for results and an endometrial biopsy.  NP said labwork and ultrasound look fine.  Uterus is a bit enlarged but not uncommon.  All hormone levels fine.  Since I had an endometrial biopsy done 4 years earlier due to 3 months of bleeding as well, I knew what to expect---or so I thought!  She had trouble with cervical clamp.  She said she couldn't reach far enough because it seemed something was blocking and that she hoped it was enough tissue. PAINFUL!!! She said I would have to go back for results until January 4th because of the holidays.  I said fine, just give me late slot--I got 5:45..perfect!

December 15th they call me to say they missed a lab test.  So I rushed over after work (It's a 30min drive from work) only to find out they already had the results--Prolactin--but they hadn't seen it in the file.  Why didn't the NP say she was missing it yesterday when I saw her????

Thursday, Dec 17th I get a call saying the NP wants me to see the Dr instead on Jan 4th, but doc is only available in the morning.  I said I could not be absent because I don't have many sick days left--which is very true--and so the only day she found the Dr available after 4:00 was January 21st.

I'm confused because at first I thought the NP was sending me to the Dr because the results don't look good, but if they are willing to schedule me so far ahead, does that mean the results must be good?

Anyone with a similar experience?

Thanks!!

Kaleena's picture
Kaleena
Posts: 2036
Joined: Nov 2009

Dear Loyal:

Since you have to wait anyway, I would try a different provider.   Be your own advocate.   You know what tests you need by this time.   You should not be treated this way.   Very unprofessional.   I have changed physicians for that same reason.

I am just going to change my PCP because after my recent surgery at a different facility, my PCP office told me that they don't remove Foley catheters.   Told me to go to ER or back to the hospital that put in it (3 hours away).

Also, call and checked out physicians.  See if you can talk to one personally and give them a brief history and ask if they would be interested in taking you on as a patient.   That is how I got my most recent gyn/onc.

My best to you,

Kathy

ConnieSW
Posts: 1506
Joined: Jun 2012

I would listen to Kathy.  She has had a lot of difficulty with doctors and has learned the hard way how to stick up for herself.  I don't think I could stand to wait a month.  Good luck.  

 

Kathy, I can't believe your PCP wouldn't remove your foley.  Sending you to the ER is an abuse of the system and a 3 hour drive for something that takes a couple minutes is rediculous.  Is there no common sense any more?  What did you end up doing?

LoyalT74
Posts: 10
Joined: Dec 2015

Hello again Kelly.

I just wanted to say that you are definitely right.  I plan to look for a new gyn this summer (I have summer break from work so that I can look around.) I finally got the biopsy redone last Monday.  Wow!  Look how long its been since the first one!

My periods seem to be back to normal, just a bit closer than usual.  I go back Monday for results.  I'm just thinking that my gyn is being OVERLY positive and doesn't seem to plan for worst case scenario.  She keeps saying how its probably just perimeno but that she still needs to do the biopsy for precaution, but that once results are back we can look at hormonal therapy (even though ALL my hormone levels came back normal) or ablation or "freezing" and stuff like that.  And so I tell her that I also need the peace of mind that I don't have something more serious.  And when she talked about perimeno I thought how the first time this happened to me I was 37...is that a peri age?

Anyway.  I've decided that no matter the results, I will look for another gyn, one that seems concerned enough to run tests and get results ASAP, and monitor my condition, and ask me more questions about what I'm going through. She was telling me "Cuz you just had spotting between your periods, right?"  And I said, "No...I had both heavy and light days, and clotts throughout the 2 months."

Cuz I'm thinking, "What if is cancer?  Doesn't waiting 2 months to get results make a difference in a patient's prognosis?"  And doesn't a doctor need details about my symptoms?
I know she is trying to be positive and for me not to get all panicky, but it also feels like she's NOT feeling the urgency for the "Just in case".

Well, thanks again for your advice!

EZLiving66's picture
EZLiving66
Posts: 1436
Joined: Oct 2015

I agree.  I think you should find another doctor who actually listens to you and takes the time to do a complete workup.  I also had to change doctors after the one I went to literally blew me off with "You get old" in her Romanian accent.  Thank heavens I did because it was a heck of a lot more than me getting old.

Good luck!!!

Eldri

LoyalT74
Posts: 10
Joined: Dec 2015

Thank you all for your responses.  I called today to ask if they can call me in if they get a cancellation these two weeks, since I'm on vacation.  But I was told they couldn't do that and that the Dr was booked anyway.

I'm thinking of calling tomorrow to request results.  I don't know if my doctor has a policy about not giving results over the phone, but I have read so many experiences, including in this forum, where doctors call patients and give them results over the phone.

I hope she does.  If not, I would like to call another gyn, but I'd prefer one that is recommended by others.

Thanks again.  Best wishes to all of you as well.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1687
Joined: Jun 2015

What area do you live in? I'm asking because there may be someone on this board that is in the same area that may be able to give you GYN/ONC information. I got great feedback here for both of my doctors. It helpe me have way more confidence when going to see them.  If you are comfortable providing that, you may get some golden information!

Waiting is very hard. In the meantime, please find some time to read the posts. There is so much information here from many of us currently in treatment and a very large amount for history from ladies that have been on the board since 2008. Some are STILL with us today! :-)

Good luck with everything. And, please feel free the come back with any and all questions.  Someone will have an answer for you most likely!

Love and Hgs,

Cindi

LoyalT74
Posts: 10
Joined: Dec 2015

Thanks Cindi.  I live in Donna, Tx--Rio Grande Valley in South Texas.  I have always preferred a female gyn.  The first one was a great listener.  I had to leave when I lost insurance.  The second one she was too serious and judgemental for me--only went twice.  This third one is a great listener and sweet as well.  It's just now that I had this test done right before the holidays, I'm starting to see the lack of consideration for me.

So yes, if anyone can recommend a great gyn in the RGV, I'd appreciate it---Thanks!

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

I'm in Texas also and go to Houston.  Surely Corpus Christi has a lot of really good Dr.s  I know it's a bit of a drive, but it's a four hour round trip for me...and well worth it.  If you have insurance, most companies have a Health Line Nurse who can get you a quick referal when you explain the problem.  The longest wait I have ever had at M.D. Anderson in Houston was three days and that was because Houston flooded and no one could get into work!  You deserve better...don't take this laying down.  Stress is one of THE most destructive things you can do to your body!  Best, Debra(Jo)

LoyalT74
Posts: 10
Joined: Dec 2015

Hi Debra.

When my brother was diagnosed with a brain tumor, he was sent to Galveston to see if there was anything that could be done for him---there wasn't.  He died 1 and a half years later.

But since I haven't been diagnosed with cancer, I hadn't thought about looking outside the valley.  I don't mind the drive in case I am told tests are positive.

Do you think I should schedule a regular gyn apptmt in Corpus to get tests and biopsy again?

I will appreciate any advice:)

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Absolutely!  If it can speed things up at all.  My first visit to a new GYN., she suspected something, did a biospy right then, three days later I have an appointment at M.D. Anderson.  This new GYN was in Beaumont, by the way, and I had no symptoms of anything that might suggest cancer.  Since she got on the ball my UPSC was cought at a 1a!  Might have been only a 1, but during the prelim test at Anderson, they found I had a fatal birth defect in my heart, so had to have open heart surgery and heal before I could start on the cancer.  I was diagnosed in July and didn't have the hysteroctomy til Dec. due to the heart.  If it is cancer, God Forbid, even if it's a slow growing one, you still need to know ASAP.  Your life is in YOUR hands...push for what YOU need even if it means another biopsy(I had three before I could get the surgery!)  Best, Debra

LoyalT74
Posts: 10
Joined: Dec 2015

Thanks Debra!

l just talked to a nurse today.  She was surprised I had not received a call explaining what happened.

She said I have been scheduled to see doctor because there was not enough tissue sample to get a diagnosis.  Doctor might re-do biopsy or suggest other options.

Thanks again to all of you.  I admire your strength and courage.

Best wishes!

Emma

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

I know this is kind of off subject, but I saw you mention Beaumont. That is where my younger daughter lives. Ar there many of you who live in Texas?

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

There are several of us from Texas!  Besides me, there is Txtrish, Norma2(she just doesn't post now), several who lived here and near me, but have moved.  As you probally know Beaumont is just about 30 miles inside Texas from South West Louisiana.  I know I have forgotten some, so jog my memory ladies!  Debra(Jo)

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