10-08-2007, 12:45 PM #1
More Surgery and one more chance at Pregnancy
My Pelvic Pain Specialist is working real hard to get my pain to a level that I am comfortable with. In my signature I've put in there that I have severe adhesion disease. He's thinking that what may be contributing to my urgency feeling is that my bladder and uterus are completely adhered tightly to my pubic bone.
I had a long conversation with him explaining that I wasn't ready for a hysterectomy because I felt that there could still be a small chance that after he is done with this surgery, that I may be able to conceive.
Upcoming Surgery November 29th:Laparoscopy with possible Laparatomy depending on how far damaged the adhesions have gone. He will separate the uterus and bladder from the pubic bone as well as anything else he sees while in there. Also clearing out the Endometriosis. He's going to clean out my fallopian tubes and ovaries. He is going to place wire mesh at the adhesion sites to slow the growth of further adhesions after surgery. The adhesions will grow back but this can slow it down a bit. After I heal from this surgery we will be able to resume with our lives. We are not going to "try" to get pregnant with fertility drugs. But we won't protect ourselves. We will just live and try to enjoy each otherís company. At some point he would like to do a hysterectomy but he says it's entirely up to us when we do this.
Further down the road in to next year I will be having the Pudendal Nerve Decompression Surgery in NH.
It just keeps getting more and more complex it makes my head spin!
I will continue to keep on going and pray for better treatments and pain reduction ahead.
Thanks for your continued love and support! Many Hugs to you ALL!
KaraComplex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011
"One hour at a time, this was NOT my American Dream but it has to work out somehow."
I also have some journals of my journeys, past and some present at:
http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/
Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.
10-08-2007, 01:24 PM #2
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Anyone who says something is foolproof hasn't met a determined fool
10-08-2007, 01:49 PM #3
This surgery could be a blessing. If you get all that cleaned out it will give you a chance to conceive. You would be a wonderful mom. But one day at a time ((((((((hugs))))))))
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
Diet Reference Sheet:
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
10-08-2007, 01:50 PM #4
Well, on the totally bright side - looks like you'll have at least a chance for a baby!!! Keep holding on to that positive thoughtHugs,
How do you eat an elephant? One bite at a time...
Harry arrived 2/23/09!
*IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
IC Diet Cheat Sheet:
IC dx'd Nov 2004
Lymphocytic Colitis dx'd July 2005
Current IC Meds
Vistaril 25mg in the evening
Previous IC Meds taken:
Cystoprotek - 2 caps 2x's a day
Elmiron, 100mg 3x's a day
Ditropan, 5 mg 3x's a day
Wellbutrin 150mg 2x's a day for Anxiety/IBS
Pepcid 40mg a day for GERD
Zytrec for Nasal Allergies
Align Probiotic daily for IBS
10-08-2007, 02:12 PM #5
- Join Date
- Jan 2003
I sure hope this is your light at the end of the tunnel Kara. Sending your good vibes and well wishes.
10-08-2007, 06:19 PM #6
I am thinking positive thoughts for you, Kara.
Big hugs! to you.
You have been through too much in your young life. You deserve some happiness in your life and I pray that it happens for you.
MelMeds I take:
Elmiron, Elavil, Vagifem- for IC
Albuterol, Flovent, Atrovent- for Asthma and lung problems
Paxil, Clonazepam- for depression and Anxiety
Atenolol- for rapid heart rate
Nexium- for Gerd
Levothyroxin- for Hypothyroidism
Lasix, Pottasium- for edema
Lipitor- for High Cholesterol
I coated aspirin
02 at bedtime
10-09-2007, 03:34 AM #7
(((Hugs))) and for you, Kara.Sharon
Shopping??? Did someone mention shopping? I'll get my hat... ;-)
Where I can be found most days.
If not there, then here
Link to the ICN Patient Handbook:
Link to the IC Diet:
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
10-09-2007, 10:26 AM #8
- Join Date
- Mar 2004
- Viera, Florida
Hugs and a lotta love, Kara.
Barb(Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)
[SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
:angel: IC Angel Volunteer Coordinator :angel:
:) Contact me via PM or e-mail if you would like to help
I have learned all about life in 3 words: It goes on! :D--Robert Frost
RSD 7/94 :headbang:
Endometriosis 9/98 :toilet:
Antiphospholipid antibody syndrome 9/99
Kidney stones--too many to count
Factor V Leiden mutation 10/02
IC 6/03 :evilsmile
Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
"Spirit is an invisible force made visible in all of life"--Maya Angelou
"Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]
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