Intestinal Endo

Support for anyone who has been diagnosed with endometriosis, or thinks they may have endo.

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Intestinal Endo

Postby JessieL2 » Fri Feb 24, 2012 12:54 am

I have not had a LAP to confirm that it's on my intestines, but ALL of my symptoms point to bowel endo. We are pretty sure it has penetrated through the wall of my lower intestines based on the fact that when it's inflamed, I pass blood in my stool. If anyone else has gone through this situation and can share their story I would greatly appeciate it. I haven't met anyone in my 5 yrs TTC who has gone through the same thing.
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Me- PCOS, Hashimoto's Disease w/Hypothyroidism, Endometriosis & awaiting a LAP to find out the extent (possibly on my intestines too), LPD.
DH- S/A all numbers on the very low side of normal so not great but still doable!
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Postby AnnaJuly » Tue Mar 06, 2012 9:56 pm

i have lately been bleeding a bit after bowel movements. It think it is a tear or polyp. Not quite the same as you.
I was told a year ago that I had endo on my bowels (the endo had misplaced them), endo on my uterus and on one of my tubes, an ovary and my stomach.
I was told it was too dangerous to remove the endo from the bowel as there is a risk of perforation. I suppose it was pretty extensive as well. That may just have been my doctors view - maybe some will remove it in other cases.
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Postby socialite_baby » Thu Mar 08, 2012 9:31 pm

I've heard the same as AnnaJuly, endo on the bowels is rarely removed because it's too risky/high chance of perforation. Specific endo specialists are generally the only ones that will remove it and to even have a slight chance for them to attempt to get rid of it you'll have to do a bowel prep. So you might get the diagnosis of it, but unfortunately probably not much relief if it is on them. :( I'm excited for you though! Do you have the date set yet?
Lindsay (Mild Endo, thin PCOS, Hypothyroid, implantation failure)
TTC #1 for 7.5 years...

April - November 2011 - 7 Rounds of 50 mg Clomid, 3 IUIs. All BFN.
February - March, June 2012 - 3 Rounds 5 mg Femara. BFN.
April 2012 - "Immune Protocol" Follistim IUI. BFN.
May 2012 - Diagnosed activated natural killer cells and told we'll NEVER conceive naturally... *treatment break*
October 2015 - IVF #1. OHSS. Freeze all. 9 blasts on ice.
November 2015 - FET #1. BFN.
January 2016 - Holy *NATURAL* BFP!!! WTF?! First ultrasound 2/1/2016. Praying for a healthy sticky baby. <3
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Postby JessieL2 » Wed Mar 21, 2012 2:51 pm

Social- april 9th is when i first see the dr.

this is getting really, really bad girls. I spend all last night in horrific pain while my bowels tried to move and i tried to empty them. The one time i was successful it was very small bits and then i got very ill and threw up on myself in the bed once i made it back.. i spent 6 hours doing this until the sleep meds knocked me out. I have now lost a day of work over it.. at this point i have a knot in my bowels that i can feel every time i bend over. We are thinking partial obstruction. It feels like an emergency but im not sure what i can do about it except keep waiting..
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Me- PCOS, Hashimoto's Disease w/Hypothyroidism, Endometriosis & awaiting a LAP to find out the extent (possibly on my intestines too), LPD.
DH- S/A all numbers on the very low side of normal so not great but still doable!
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Postby Alyce » Mon Apr 09, 2012 6:44 am

My RE thinks I have endo on my bowel- I'm having surgery in 9 days and have to do a bowel prep because he said he may remove it of its there. I have severe diarrhea all of the time and take up to 15 immodium per day to live semi- normally. He said a lot of people who have endo have been diagnosed with irritable bowel syndrome in the past. My gastroenterologist, however doesn't agree and thinks its a small bowel problem. The RE said if its actually on the bowel it causes diarrhea, but a lot of women with endo not on the bowel have the opposite problem of constipation, which is why constipation is more frequently listed as a symptom that diarrhea, I assume.
I hope this helps,
Alyce
TTC over 3 years. 6 cycles 100mg Clomid, 5 BFNs 1 Ectopic. Lap and fertility testing, DX Unexplained Infertility.
BFP 8/12: Ectopic pregnancy - treated unsucessfully with Methotrexate, then surgically removed in emergency surgery.
10/12: Found out my right tube is deformed and my left tube is badly damaged from the Ectopic pregnancy. Advised to move onto IVF because I have almost no chance of conceiving naturally.
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Postby Alyce » Mon Apr 09, 2012 6:47 am

TTC over 3 years. 6 cycles 100mg Clomid, 5 BFNs 1 Ectopic. Lap and fertility testing, DX Unexplained Infertility.
BFP 8/12: Ectopic pregnancy - treated unsucessfully with Methotrexate, then surgically removed in emergency surgery.
10/12: Found out my right tube is deformed and my left tube is badly damaged from the Ectopic pregnancy. Advised to move onto IVF because I have almost no chance of conceiving naturally.
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Postby JessieL2 » Sun Apr 15, 2012 11:29 am

thanks Alyce! I have ALL of those symptoms plus more. Let me know how your surgery goes!

I finally saw the RE and he immediately confirmed that I have endo just from feeling around inside me with his fingers :/ He said I will not need bowel prep because he uses a laser so he can get it all from the front and if it does end up being really really bad we will have to schedule a second and major surgery. I am relieved to know that im not crazy but it does suck that i was right. The surgery will cost me 1k so we have to spend time saving up the money before scheduling the LAP. We need to hurry because my bowels are getting BAD.. i dont wanna get into any gory details but the pain has been so unpredictable everytime things shift its horrible and i now have pain EVERY time we have sex no matter where i'm at in my cycle.
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Me- PCOS, Hashimoto's Disease w/Hypothyroidism, Endometriosis & awaiting a LAP to find out the extent (possibly on my intestines too), LPD.
DH- S/A all numbers on the very low side of normal so not great but still doable!
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Postby ete29 » Sun Apr 15, 2012 3:38 pm

I have endo confirmed on my bowels, and some parts of my cycle it hurts to sit down :| I have found tremendous relief since giving up gluten. Maybe you can find a little relief until your surgery. Good luck!
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Postby JessieL2 » Mon Apr 16, 2012 2:32 pm

ete- i get the exact same symptom. when the areas are inflamed or bleeding pretty much it hurts to sit, stand/sit position, walk etc. also most recently i have been experiencing extreme pain in my lower back and buttocks and down the back of my legs. i hear endo can cause this pain when it has affected the sciatic nerve. i have had no other injuries or events that could of caused my sciatic nerve to cause me pain, so i am guessing it is also endo related :(
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http://www.fertilityfriend.com/home/272d85
Me- PCOS, Hashimoto's Disease w/Hypothyroidism, Endometriosis & awaiting a LAP to find out the extent (possibly on my intestines too), LPD.
DH- S/A all numbers on the very low side of normal so not great but still doable!
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Postby Alyce » Sat Apr 21, 2012 6:24 am

My doc uses a laser as well but with bowels even a small perforation can cause horrible complications that can be avoided with a bowel prep.
My surgery was about $1700.
I have to see him later next week to talk about how my surgery went but he did tell me while I was still groggy that i do have endo and that he burnt most of it off. although my gastrointestinal issues are back already, only 3 days post surgery so my gastroenterologist is probably right about it being a separate cause.
I hope you can schedule your surgery soon!
TTC over 3 years. 6 cycles 100mg Clomid, 5 BFNs 1 Ectopic. Lap and fertility testing, DX Unexplained Infertility.
BFP 8/12: Ectopic pregnancy - treated unsucessfully with Methotrexate, then surgically removed in emergency surgery.
10/12: Found out my right tube is deformed and my left tube is badly damaged from the Ectopic pregnancy. Advised to move onto IVF because I have almost no chance of conceiving naturally.
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Postby socialite_baby » Mon Apr 23, 2012 7:26 am

Any updates Jessie?! I'm anxious to hear how your appointment went!
Lindsay (Mild Endo, thin PCOS, Hypothyroid, implantation failure)
TTC #1 for 7.5 years...

April - November 2011 - 7 Rounds of 50 mg Clomid, 3 IUIs. All BFN.
February - March, June 2012 - 3 Rounds 5 mg Femara. BFN.
April 2012 - "Immune Protocol" Follistim IUI. BFN.
May 2012 - Diagnosed activated natural killer cells and told we'll NEVER conceive naturally... *treatment break*
October 2015 - IVF #1. OHSS. Freeze all. 9 blasts on ice.
November 2015 - FET #1. BFN.
January 2016 - Holy *NATURAL* BFP!!! WTF?! First ultrasound 2/1/2016. Praying for a healthy sticky baby. <3
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