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golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 8/5/2009 10:00 PM (GMT -7)   
Just been told that my endometriosis is back and back with a fury. Seems I'm going to need major surgery, lose one ovary and have another re built, plus he thinks its on my bowel and /or bladder. Reckons it'll be 3 hours at least under anaesthetic. Here I was all smug thinking I'd got rid of the endo, not putting all my stomach cramps and digestion problems into endo. I thought it was from all the RA medication, at least I can come off the nexium!!!
I'll be looking for tips to survive the bowel preparation!!! How stupid can I be.
Just wish I was that bit older and closer to menopause.... have to go see my rheumy and discuss coming off my RA meds so I can survive the surgery.
I'm really in a state of shock, thought carpel tunnel surgery was the only thing on the horizon, especially as I decided not to have my hernia fixed... I hate the fact we all seem to have overlapping conditions all the time. Life sure isn't fair.
He reckons when the ovary is as stuck as my one it can be pre cancerous??? Has anyone ever heard of that? Had to have blood work to check for markers what ever that means, I'm sort of numb with it all, golitho

Hara
Veteran Member


Date Joined Mar 2009
Total Posts : 900
   Posted 8/5/2009 10:45 PM (GMT -7)   
You should talk to your dr. and surgeon about getting your hernia(s) fixed while you are going in for your other surgery that way you can recover with 2-3 things done in surgery instead of only 1-2 things. I got mine fixed in Feb of 2009 and I just now got healed up from it. My surgery was great and I went home the next day around noon. Just something for you to think about. Don't put hernia surgery for too long it will cause more problems than it's worth. Trust me I should know I put mine off for 6 years and I was always sick to my stomach.
 
HARA - I'm also a diabetic

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 8/5/2009 10:53 PM (GMT -7)   
Sorry to hear about the return of the endo and your upcoming surgery. I know it seems like we hit a certain age and our bodies start to fall apart - piece by piece. I am not to familiar with this type of surgery. I am guessing they will be removing and and all tissue in your abdominal cavity that shows signs of endometriosis. I guess the positive side is that the caught this early and are aggressively treating it - you certainly don't want to be dealing with CA. As for the bowel prep - I had more than my share. With this being surgery, I would think they would select a prep that would thoroughly clean the bowel area. I have some that require your drinking a large amount of something I remember being called Go-Lightly or something similiar. I do remember the pharmacy telling me that I could add Crystal Light drink powder - Lemonade flavor to hide the taste. I know that you could use other flavors, as long as they had no dark or red dyes in them. There are more abreviated preps and maybe you will be lucky and able to use one of them, but it was just my luck that my doctor wanted the more involved one.

Well good luck with your procedure and surgery. keep us posted to what is going on.

Stella Marie

Co-Forum Moderator for Chronic Pain

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, central apnea, collagenous colitis, pain, swallowing and respitory  involvement,  Implants: intrathecal pump  & neurostimulator.  Extra features: O2 & wheelchair

 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/5/2009 11:33 PM (GMT -7)   
Hi, Golitho,
I'm so sorry to read of the stack of challenges that are hitting you at once. I do understand!

I don't have a lot of specific answers except that ovarian cancer is difficult to detect (unlike cervical cancer), and it is a very serious type of cancer because of that. It's usually not found until it's progressed, so if your doctor thinks your ovaries may be pre-cancerous, you may want to think seriously about having them removed. I know that may not be what you want to hear, but do learn as much as you can before making a decision with your surgeon. I think there may be genetic markers for ovarian cancer; they've been making some headway at trying to detect it earlier. So find out as much as you can, and don't make light of that. I don't want to scare you, but it's serious enough to do your research. You may want to go to medscape.com and do some searches; it's the lay public's version of the research doctors use. That way you can know what to ask your doctor.

I don't know about the ovary being "stuck" but maybe someone else here does.

Also - you may want to wean off the nexium slowly. I'm on a pretty heavy dose to try to stop my cell changes, and I read an journal article that discussed the fact people often have a lot of acid after going off ppi's. People over on the GERD forum here also can offer advice on this. I'm not saying stay on it, but depending on your dose you may need to wean slowly.

I just had a colonoscopy; is that the kind of prep you need to do? I was given a list of options to use. I can't remember which one I used, but it wasn't too bad. I know there's something called Movi-Prep, which isn't the one I used. I bet others here can add some info., if this is the kind of process you're referring to.

I don't know if this helps, but we'll be here listening and thinking of you as you wade your way through this. It does get overwhelming with these bodies of ours, doesn't it?

Hugs,

PaLady

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 8/6/2009 7:09 AM (GMT -7)   
Hello Golitho,
Is there a way you could get a second opinion on the pre ovarian cancer? is this a top notch doctor your seeing?
with all this surgery I'd be headed for a second opinion...
So very sorry your endo is flairing, I will keep you in my thoughts and prayers.
lots and lots of well wishes and soft hugz
(((((((((((((((((((((((((((((((((((((((((((((((((((((((Golitho)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 8/6/2009 8:45 AM (GMT -7)   
Hi everyone and thanks for your replies. I'll mention the hernias to my surgeon Hara but I think its a completely different procedure.
PAlady, my ovaries are covered in cysts and I think the endometriosis has embedded my leftone in scar tissue and attached it to something. He won't know more until he can see, he said when ovaries get to my stage they like to remove them in women beyond childbearing age. My rightone despite also being covered in cysts, is still moving around like it should be, seemingly they just sort of float around our abdomin!!! So he will remove the cysts and try to rebuild it so I don't hit menopause too soon. I have some other large blood filled cyst which he doesn't know where its attached. But as I have both bowel and bladder problems it may be the cause. He says I'm a mess. Char, he is suppose to be the top surgeon for endo at this hospital and comes highly reccomended. He seems very nice, I get a good feeling from him, I guess I can only cross my fingers.
Stella, thanks, I see him again in Sept as I have to coordinate my rheumy visit before seeing him again and then I can tell you what his instructions are.
Thanks everyone for thinking of me. It's 1.30am for me, I'm teaching a drwing class at 9am and here I am up with cramps to add to my knees and hips. I can only laugh. At least I got a new class this semester. First time teaching drawing to 2nd year architecture students!!! Bit of a change from printmaking. They seem very bright, talented students, so I'm very happy to have them. Keep my mind off my worries anyway.
Thanks again, golitho

Hara
Veteran Member


Date Joined Mar 2009
Total Posts : 900
   Posted 8/6/2009 12:21 PM (GMT -7)   

I just figured while the surgeon was in the area might save you a scar or two. Mine looks like a snake it curves around my bellybutton; which my surgeon save I might add. Just trying to save you some stress and recovery time....Trying to think outside of the box. hummmmm

HARA yeah I feel pretty good today and yes I'm taking my herbs as well as my meds that I'm hoping to get off of.


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 8/6/2009 2:38 PM (GMT -7)   
Im so sorry your dealing with this! I suffered w/ endo (stage 4), cysts all my life. I had one laperscopic surgery to remove endo and two cysts in 2000, then two laperotomy (open bikini cut) to remove endo that had attached to my bowels, stomach and ovaries, along w/ two hemmoriagiac cysts on the rt. ovary and one on the left. I ended up losing part of my ovary during that surgery.
There is a blood test, which can help to detect inflamation (cancer or precancer), called CA125. Please ask them to run this test before u have surgery. If it is positive, as to be refered to a Oncologist so that if needed they may be in the OR at the time of surgery.

Indeed a hernia should be able to be repaired while u also have this surgery. NO need to do more than one surgery. Please talk to ur ob/gyn and get a consult w/ a surgeon if ur ob/gyn does not do hernia repair. I currently have a groin hernia, and will be having it repaired as soon as they allow. Don't let it go to long, if ur bowel comes out, u could be in trouble.

As for the endo, even having it removed, it will likely grow back. If you are still having periods, then your estrogen will help to create endo. Lupron is used to help, or BC pills (lupron is tough).
Good luck and if u need anymore info, i'd be glad to help. hugs   also editing to say that i had adneomyosis, which is where the endometrium lining grew into my uterus and took over my uterus . My ob said ti was the only case he had personally ever seen in his 20yrs as a doc.....so, please make sure u r in good hands, it is important, especially if u don't have children yet.


Jan. 2009, complete hysterectomy, diagnosed stage 4 endometriosis & adenomyosis (age 36)
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-2009, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 

Post Edited (shannon1) : 8/6/2009 3:41:40 PM (GMT-6)


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 8/6/2009 3:32 PM (GMT -7)   
Hi Golitho,

I am so sorry to hear the news! Do you see a councilor, or anyone else who you could talk to about this? I can imagine that you are quite scared! It might help to get some of your feelings out. Of course, that is what we are hear for, but I mean in person as well.

In the mean time, try to relax (I know, this is much easier said than done!). I find the scent of lavender very relaxing, or a hot bath, or a cup of tea. Read a book, go for a walk, just do something to try & get your mind off of everything, if only for a short while.

Do you have a surgery date yet? Keep us posted & hang in there!

hugs,
Skeye

Hara
Veteran Member


Date Joined Mar 2009
Total Posts : 900
   Posted 8/6/2009 4:02 PM (GMT -7)   
shannon1 said...
Im so sorry your dealing with this! I suffered w/ endo (stage 4), cysts all my life. I had one laperscopic surgery to remove endo and two cysts in 2000, then two laperotomy (open bikini cut) to remove endo that had attached to my bowels, stomach and ovaries, along w/ two hemmoriagiac cysts on the rt. ovary and one on the left. I ended up losing part of my ovary during that surgery.
There is a blood test, which can help to detect inflamation (cancer or precancer), called CA125. Please ask them to run this test before u have surgery. If it is positive, as to be refered to a Oncologist so that if needed they may be in the OR at the time of surgery.

Indeed a hernia should be able to be repaired while u also have this surgery. NO need to do more than one surgery. Please talk to ur ob/gyn and get a consult w/ a surgeon if ur ob/gyn does not do hernia repair. I currently have a groin hernia, and will be having it repaired as soon as they allow. Don't let it go to long, if ur bowel comes out, u could be in trouble.

As for the endo, even having it removed, it will likely grow back. If you are still having periods, then your estrogen will help to create endo. Lupron is used to help, or BC pills (lupron is tough).
Good luck and if u need anymore info, i'd be glad to help. hugs   also editing to say that i had adneomyosis, which is where the endometrium lining grew into my uterus and took over my uterus . My ob said ti was the only case he had personally ever seen in his 20yrs as a doc.....so, please make sure u r in good hands, it is important, especially if u don't have children yet.

Yes if your intestines go out through the hole then that's when it could be disastarous. I only had the fat pushing up through the 2 hole that I had, but yet I had three hernias. Yes they are all fixed.
HARA turn

Mrs arthur Itis
Regular Member


Date Joined Jul 2009
Total Posts : 41
   Posted 8/6/2009 5:46 PM (GMT -7)   
My dear Golitho
I'm sorry to hear your news, I was so fortunate in that right up util after the menopause I never had any trouble of that sort. You seem to be collecting health complications as kids gather flowers. I just wanted to say my loving thoughts are with you - you were so kind and supportive when I came on the forum at first and I really appreciated that, so I really pray things improve soon for you
lots of hugs
Mrs Arthur Itis
<<<<<<<<<<<<<<HUGSSSSS>>>>>>>>>>>>>>>>>>>>>>>>>>>>
 At least the pain lets me know I'm alive!
 
 
Conditions: polyarthritis , rheumatoid arthritis, osteoarthritis, ankylosing spondilitis, fibromyalgia, costochondritis, degenerative disc problems, occipital neuralgia, sjogren's syndrome, osteoporosis, detached retina, macular degeneration. Mobility problems, wheelchair user outsaide home
 


Mystic_Duck
Regular Member


Date Joined Jun 2009
Total Posts : 52
   Posted 8/6/2009 8:09 PM (GMT -7)   
hi
im so sorry!!!! my gut just churns whever i hear about something lik this, cuz its the cycle i go thru too! i dont hav any great words of wisdom or anything, but wanted to let u kno ill be here for u! and u feel free to email me if u need or want too, cuz i just had an endo surgery in may, wasnt tooo severe, but they found it on my bowels too...ive also had 7 surgeries in the last 3 years so i can really, REALLY sympathize for wat ur going thru! Im sorry i dont have any profound things to say, but just kno ur not alone, and really feel free to email me if ur feeling overwhealmed or anything, im always here for u to talk to as someone who is dealing with the same stuff....
hope all goes well,
Katherine
 
"In God's hands, in God's time."
 
"The scourge of life, and death's extreme disgrace, the smoke of hell, that monster called Pain."


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 8/7/2009 2:04 AM (GMT -7)   
Thanks Katherine, I appreciate your thoughts but your email is not posted? 7 surgeries!!! And heres me complaining of one!!!
Thanks Hara and Shannon, I see him again in Sept so I will mention the hernias. Mine are small from my last pregnancy 10 years ago. I have a bump but they think the tissue poking through is endo!!! Too high up for bowel, above my tummy botton and slightly to the right. Doesn't realy worry me unless I'm pulling pressure on an old press.
Thanks Arthur and Skeye for your support. Surgery is set for Oct 14th, so heaps of time to get used to it. I'm 49, so no more kids for me!!! I have 3 beautiful children, if I get my daughter to help I'll try to post pickies some time. I'm technologically challenged to say the least. Thanks everyone, golitho

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 8/8/2009 8:31 AM (GMT -7)   
I'm sorry you have to deal with all these issues.
 
My sister and I have dealt with alot of similiar issues.  I had chronic ovarian cysts for years.  They started at the age of 12.  I've so many laproscopies and little scars in my bellybotton I can't count them.  My right ovary was so inbedded with them they would rupture all the time.  At the age of 14 my GYN stated to my mother that I would more then likely have a hysterctomy by the age of 16.  I made it past 16 but then at 18 I started with cervical cancer.  Between the cysts and cancer I went through 6 yrs of heck with procedures and having 2 babies while on bedrest.
 
My hysterectomy occured when I was 24 two weeks after my youngest was born.  They left the right ovary just in case it did work at times but it was so scarred it looked pitiful.
 
My sister has endometriosis seems to have been attacking her from the beginning of time.  She is now 42 and childless as a result.  She gets the lining scraped every couple of years for pain control.
 
It is not pleasant to deal with these issues!  But Hara is right also discuss removing the hernia's while they are in there.  Its a simple procedure my mother has that done 3x.
 
Best wishes
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........ I think I have it all


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 8/8/2009 9:44 AM (GMT -7)   
Golitho,
I'm sorry to hear your up to your neck in health problems! But unfortunately for5 the problems or fortunately depending how you look at it, you have lots of friends here to support you through these setbacks! I don't know much about the Lady stuff but I did have a ambiblical hernia fixed w/ surgery last winter. It was a bubble coming right out my belly button which grew as I exerted myself going to the bathroom, lifting, couighing, sneezing, you know > that kind of stuff. Surgery was a breeze! The Dr. put a screen behind it and although it looks and feels kind of funny, it works great in holding my inerds back inside where there suposed to be! It was an outpatient deal and only slight pain afterwards! in fact, I got on a plane the next day and flew to a convention for a few days and never had a problem! So, I hope yours goes as easy as mine did> I'm sure it will!!!!
Hang tough my friend, we have to get stuff fixed as we travel this road of life, you just happen to have a flat tire this time! I really hope you get the other stuff taken care of w/ a minimum of sweat too!! I'll keep you in my prayers!
Hugz to you my friend>
Pete
56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections once a month. 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, Joseph is on the aircraft carrier USS John Stennis back in Bremerton, Wa. after 8 mo. deployment! and Pete Jr. is on The Asault Ship USS Bataan "The Jaws of the Fleet" somewhere in the Persian Gulf w/ 2,000 Marines aboard. I am one very proud (what they call me)> Big Pops! 

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