Thursday, February 24, 2011

A Mess

An update on ME. Last week I finally had a Gyn consult with a new Doctor. I have been coping with chronic pelvic pain, severe endometriosis, ovarian masses, back pain, and Pelvic Inflammatory Disease since Hannah was born in 1996!! To date, I have had 4 Pelvic Laparoscopies, 2D&C's and 3 surgeries for biopsy removal of breast masses! ACK! I'm basically an Estrogen dominant mess!! I'm only 33 years old, yet I've had these girly problems over half my life!!

So, lets back track for a minute....

Last year I had my first abnormal pap smear. My GYN acted like it was no big deal, even though it was a high risk result. He suggested I have Paps done every 6 months to watch for changes. Thats it.

One thing about me....I'm a googler. I google any medical term that comes my way. When I asked my GYN why he didnt suggest a Colposcopy be done for my abnormal cervix, he simply said it wasnt necessary. "90% of women with this result have immune systems that correct the abnormality." Who am I to second guess a Doctor, right? At the time I was in the midst of chaos surrounding my Dads death anyway, so I just let it go.

Somehow a year passed very quickly. Need I say again that in 2010 our family had just too many hardships? My Thyroid went bonkers come July, so in August I had half my Thyroid and a small mass removed. Since then all my girly problems have increased in severity, but I assumed it was "normal" because my Thyroid issues. I figured things would settle down eventually. In September I went to the doctor for swollen pelvic lymph nodes. I swore I had every symptom of Lymphoma. Blood work was all normal, and I was assured that my recent Thyroid surgery would just take some time to recover from. -Sigh-

Anyway, back to my new GYN....according to her I should have had that Colposcopy done last year!! She cant understand why my old GYN wasn't concerned about cancerous changes. Nice hugh? I guess you DO always need that second opinion!!(I think now my faith in doctors really IS ruined.) My new GYN is a Goddess. I love her. After she reviewed my operative reports from past surgeries she said I had/have the worst case of Endometriosis she has ever seen. GREAT. Leave it to me to be the one that amazes Doctors with weirdness! Apparently my surgical report from 2004 was the most disturbing. I had adhesion's and endometrial deposits covering my entire pelvic area, even my bladder, all the way up to my lower lungs!! And to think my GYN at the time did NOTHING after surgery to help control my Endometriosis!! SEVEN YEARS ago that operative report showed the severity, yet here I am still a mess.

So, anyway....last week while consulting with this new amazing GYN, I scheduled the Colposcopy/biopsy but the next available time isnt until next week. In the mean time she ordered my yearly pelvic ultrasound for the Endometriosis and chronic pelvic pain.

I had that ultrasound done last Thursday. I could tell by the way the Ultrasound Tech acted (Ive had the same Tech for over 10 years) that this ultrasound was a different kind of mess than my usual cystic ovaries. When the Ultrasound was done she told me to make sure I hear from the doctors office in the morning. 'Enuf said. She didnt have to say it, and she didnt have to tell me twice!

So, I called the doctors office after I hadnt heard from them by 2pm the next day. My luck. The office closes early on Fridays, which meant Id have to call Monday.

I called Monday. I was assured my chart was on the Doctors desk and she would be calling me. I also figured the test was fine since no one called!

I again called the Doctors office on Tuesday, but my Dr was out of the office delivering babies.

On Wednesday I was assured by the Receptionist AGAIN that my chart was on the Doctors desk and she would call by the end of the day. She never did.

Then came today, Thursday. Now an entire week after my ultrasound.

**The bitch switch was flipped.**

I called first thing this morning and spoke with yet another careless receptionist. Long argument cut short, I was basically told by the receptionist that I was supposed to have made an appointment to come in and review the Ultrasound results.
-Sigh- Whatever. She ended up putting me on hold, speaking with the doctor, and then asking me to come in for an Endometrial Biopsy at 345pm TODAY. WHAT THE HELL?

I went from hunting them down for my test result, to being scheduled for a entirely different biopsy in just one phone call!!

During my appointment today I learned something is very wrong with more than just my cervix....

My right ovary is doubled in size
My left ovary is even larger, with a 5cm complex cystic mass
My Uterus is seriously thickened and tripled in size

WTF? I just had a frickin ultrasound done last year and it was FINE!!!

The good news is, the Ultrasound did not show any fluid in my pelvic/abd cavity indicating Cancer is present.

So, the doctor attempted to do this Endometrial Biopsy today. She couldnt "enter" my Uterus (I think I almost died by the way) but she did get to do the Colposcopy of the cervix. I had labs drawn for a CA125, hormones levels and my Thyroid. And now we wait.

My records are being faxed with a personal letter to the "top GYN surgeon" in AZ per my GYN. She is then following up with a phone call and a request that I be scheduled for a consult with him next week. She hasnt said the C word. I think right now she is focused and hoping this is just an extreme result of long standing Endometriosis or early Menopause. I'm not saying the C word either, but I wouldnt be surprised.

I need to see this Specialist because a radical Hysterectomy for someone who is 33 AND Type 1 Diabetic with a Thyroid condition is a very tricky thing. I cant just go on any hormone replacement after surgery either, especially being our family history of breast cancer and my history of breast masses. Hormone replacement would also still cause any remaining endometrial deposits outside of female organs to respond to Estrogen and grow. And be painful.

So, there you have it. A mess. A total Estrogen Dominant mess. Why did it take SO many years for someone to listen? And WHY did it have to come to THIS? Could you imagine Diabetes after a radical Hysterectomy? Could you imagine Diabetes with Radiation and Chemotherapy? I'm tired of imagining, and I pray to God it isn't so.


Nikki of Our Diabetic Warrior said...

I'm so sorry to hear of all your health issues. I will keep you in my prayers!

Reyna said...

Oh Kelly what a nightmare! I cannot believe how many times you have been duped by the system or simply lost in the system...and now all of this. UGH.

Thinking of you. And chanting "NO C"..."NO C"..."NO C"...

Lora said...

Oh Kelly, I am praying for you. I know everything will be okay. Keep truckin and keep us posted. (((HUGS)))

Penny said...

Kelly, I'm so sorry to hear what you have been going through. I can imagine the pain that you must be in. I have endometriosis and had a hysterectomy in March. But, I left one ovary and last week had a cyst rupture on that ovary and now that ovary is twice the normal size it's supposed to be. I had a CA125 done and it was fine.

Keep us updated on what is going on. I really hope it's not the C word. Maybe just really, really bad endo? (((hug)))

Hallie said...

((hugs)) Kelly. Please keep us posted. Praying for you...

sweetmystery6 said...

praying for you! hoping it all gets better soon.

Anonymous said...

I will pray that the results are not as bad as you fear. It does sound like you have found a competent doctor at last. Waiting is the hardest part. Hang in there.

Beth said...

Oh, Kelly.
I don't even have words.
Let me know wwhat we can do for you, ok? Even if it's just holding a pillow while you hit it with a stick or something. ;)
Love you -

Tracy (The Crazy Pancreas) said...

Hey Kelly,

Just catching up this morning. I am praying for you and will be anxious with you while waiting to hear "what next".

Also with Reyna, chanting "NO C, NO C, NO C!"


Donna ((Sweet Momma)) said...

Me too: NO C NO C NO C!!!!

I am just catching up this morning as well, but wanted to let you know you are in my prayers.

Heidi / D-Tales said...

Finally catching up on some blog reading. I'm SO sorry you're going through all this. I'm going to keep you in my thoughts and prayers!