Edno in the colon?

Amy2822 · 12-20-2008, 07:53 PM

Hi, i am new to this board and am wondering if any of you have been disgnosed with endo in your colon.... Here's my story, For about two years I had been having some abdominal and back pain along with painful intercourse and pain on my outter vagina. Last May I had lap surgery and found some endo on my ovaries....My question is, for the past 2-3 years I have had pain when I have a bowel movement along with some bleeding.... I have had doctors diagnose me with hemeriods and fissures, however I am not confident that this is truely what I have and cannot help but think that I have some endo in my colon??? How can this be checked? Do i have to have lap to get it disgnosed? Or any I paranoid and I shouldn't be worried that it is endo? What were some other symptoms others have had???

OliviaLeigh · 12-22-2008, 04:53 PM

You may talk to your dr about trying BCP or Lupron to see if it helps. I know it wouldn't be the best way to diagnose, but sometimes it is easier. If the BCP or Lupron helps - then maybe it is Endo, if not, then more research would be needed.

However, if you've had a lap done you may already be on hormonal treatment. Are you currently on anything to control your endometriosis?

Amy2822 · 12-23-2008, 12:12 PM

Thank you for your reply.... Kind of a long story, but basically I had been treating with continuous BCP's for about 2 and a half years, my doctor did talk to me about lupron, but I was too scared to try it.... Throughtout this time I had continued to have painful bowel movements on and off... I had went to the doctor about this and they first said I had hemriods and then said I had a fissure... But I am not convinced that it is either of these things and can't help but think that it is endo related???.... I have also been diagnosed with Vulvodynia and since my pain from the endo has been under control I had decided to focus on relieving my pain from the volodynia which mean going off of continious BCP's....I think I will only try this for a few months as I am concerned about my endo flaring up, but wanted to give it a try in hopes of helping my volodynia.....

DiamondInTheRough · 12-23-2008, 07:00 PM

Have you been documenting when the bowel pain/bleeding occurs in your cycle? Sometimes, if a pattern develops, it could give the doctors more answers. But certainly, there doesn't need to be a pattern for it to be endo.

Do you recall if you typically have loose bowel movements during af? This can be a sign of colo-rectal endo, too.

I suspect it's what I have. I'm currently trying three months of consequeitve bcp. I'm on my second month (I would technically be on af right now) and I haven't noticed a change in my pain yet. I still feel like af is here, as well my bowel pain has increased. But thankfully, I haven't had the bleeding for a few months now.

auberouge · 12-24-2008, 06:50 PM

Hi. I've just found this board looking for information about colonic endometriosis. Monday, Dec 22 I had a colonoscopy to determine why I was bleeding so much all of a sudden. A little background... sorry so long.

(I was diagnosed with endometriosis in 2000 when I was 24, and my doc put me on Lupron. I was desperate with pain, and the Lupron was a godsend for 1 1/2 months, but then pain started to return with a vengence. I got pregnant after my 3rd shot, and had a very horrible painfull pregnancy that ended with me loosing my daughter at 36 weeks. But the endometriosis seemed to be gone. I got pregnant again about 2 years later and had a perfectly easy pregnancy and a perfect little boy!)

Now he's 3 and the pain and accompanying symptoms have begun to return, with the addition of bowel bleeding that I have just realized is the worst and usually occurs during my period, which runs 20 days apart. My OB put me on the Loestral? BCP, which had me bleeding both ways very heavy for over 3 weeks. My primary doc put me on Prednisone for 30 days, an evil little drug that works miracles but with awefull side effects. It cleared up all my symptoms, completely, until I got my period again, and then wham! heavy bleeding/pain again.

So I had the colonoscopy, and had at least 50 colon polyps removed. Those are being checked for endometriosis and cancer. So I'm 32 years old, and otherwise a very healthy active mom. At this point I'm waiting for the test results. But since I've never had laparoscopic surgery, I guess that's where I'm headed.

I'm sorry this is so long, and I hate to go into further gory details, but I will if needed. I'll end by saying that I first noticed bowel pain and bleeding a couple of days before my period would start, and it would happen again during those days directly in between periods, but in the end it was pretty much all the time. I had mucus and huge blood clots as well.

DiamondInTheRough · 12-26-2008, 01:46 AM

auberouge: First of all, here is a big

for you! I am so sorry for the loss of your daughter. Your experience sounds like a complete nightmare.

When you first started noticing the bowel bleeding, was it every month, or were there periods of time in between that it didn't happen?

What was the colonoscopy like? I have an appt with a Gastroenterologist in January, and I wonder if he'll suggest I have one (I guess it's likely whenever there is bleeding).

I'll keep you in my thoughts & prayers that the polyps are from the endo and completely benign.

auberouge · 12-26-2008, 10:19 PM

Thanks for the

Diamond, it's been an extra hard Christmas. I'm very greatful for my little guy, and the hubby has been tolerant...

I'll say that I was actually very supprised at how "easy" the whole colonoscopy proceedure was. I had it built up to be hell and misery and a wish I could just die kind of thing, but it ended up not being bad at all. I took the Trilyte with flavour packs, and I used the lemon lime. It didn't taste that bad, I chilled it and used the lemon lime. I got the really sour popsickles, and would suck on 1 a little before each drink, that really helped. I was on the pot every 30 minutes or so, and I didn't have any cramping or burning, it really wasn't that uncomfortable. When I got to the hospital I waited for 2 hours to be taken in the back, got the gown on, the IV in, another hour, and then they wheeled me into the proceedure room. I was hooked up to the heartrate monitor thing, then the anesthesiologist gave my IV a shot, that burned down my arm about 5 seconds, and the next thing I remember is being wheeled out, feeling almost fully awake. The anesthesia seemed to wear of quickly, but I had to wait an extra 30 minutes because my blood pressure wouldn't come up. Then I went home. 4 hours later I had a lot of tingling and numbness in my arms and legs, and a lot of pressure too, but I took a 2 hour nap and that disappeared. The end.

Really nothing to stress about, thank goodness.

As for the bleeding, it didn't happen every month in the beginning, so I didn't worry about it, it was very light, maybe just a few little clots, and I thought maybe they were just drips from AF, you know? I talked myself into thinking there's really nothing wrong and I can deal with this, no biggy. It was the BCP that really messed me up and got my full attention. I had a LOT of bleeding, it was truely scary.

And AMY,
There is 1 thing that is true with endo, where ever it is, it generally gets worse with time if you don't find a way to treat it. If BCPs are keeping it under control for you then thank goodness for that! With your bowel symptoms, it comes down to weather or not the status quo is ok with you. Anytime you have bleeding you really should get a colonoscopy done, just to rule out the big bad Cancer. Colonic endo is considered to be rare, but it's much more likely to be found with a lap test than to have a colonoscopy test done. What is your family history like? I have a grandparent on each side to have colon cancer, and an aunt who died from it. Also a grandma and aunt who have had trouble with endo and had hysterectomies. Strange enough - The endo seems to come from my native american side, the colon cancer from the rest, scotts and irish.

DiamondInTheRough · 12-26-2008, 10:50 PM

auberouge- I can just imagine how hard the holidays are. I lost a baby boy at 18 weeks in 2001, and now that I have two more boys at home, it's hard not to take pause at times and wonder what their big brother would have been like.

So you were alseep for the colonoscopy! Some people are awake for it, aren't they? I remember asking my family doc about it, and he said that I would probably be awake for it. I hope they opt to put me under, too! It's interesting that you mentioned that reaction you had in your arms & legs. The exact same thing happened to me after my gallbladder surgery over the summer. A few hours after surgery, I was home and resting, but started to feel that heaviness/tingling/numbing in my arms & legs. It was really scary, and I went back to the ER, but they couldn't figure out why. Did they give you any pain meds?

My rectal bleeding has been here & there as well. I had two cycles in a row where it happened the exact same way, exact same day in my cycle, etc. This is what caused me to seek help. I'm currently trying 3 months of continuous bcp to see if lack of af makes a difference (I'm on the second month and so far I'm sad to say there is no difference pain-wise). I'm feeling disappointed because not only am I not getting any pain-relief, but now all I have to look forward to is a really heavy period at the end of this!

utgrrl82 · 12-26-2008, 11:03 PM

I have Endometriosis. It is on my colon, my ovaries, and a few other places but those are the main two where the majority of it is.

I had all the classic symptoms before I was pregnant and yes I also has some bleeding from the colon. I think it might have just been because it was irritated but the only true way to diagnose it is the laparascopy.

Since being pregnant I have not had any pain but I have been warned by my doctor that when he is born and I start to ovulate again that it will come back with a vengance and it will be painful. When that happens I may go on birth control or find some other way to handle it. Before I tolerated the pain though some days it interfered with my life and work but with my son when born... not sure exactly what I will do.

Check with your doc and see if he noticed any there. He may have you go back on birth control if that helped before.

DiamondInTheRough · 12-27-2008, 12:02 AM

Congratulations on your pregnancy!

I just want to warn you, near the end of my pregnancy, I had an episode of HORRIBLE colon pain. It felt just like the paralyzing cramps I get during af, but so much stronger, like my colon was being electricuted. I nearly called an ambulance when it started.

I don't want to scare you, I just want you to not freak out if it does happen. It eventually stopped after I was in the ER and propped up with warm blankets.

Amy2822 · 12-29-2008, 01:54 PM

auberouge and Diamaonintherough I am sorry to hear the two of you have had to gone through the loss of your baby's and my thoughts and prayers are with you during this holiday season.....

That is a good idea, thanks. I have not yet been documenting the pain when I go the bathroom, it is pretty constant, with minumul bleeding. After I go the the bathroom, the whole area seems irritated for hours after too, kinda itchy but hurts at the same time (kinda gross, sorry). There is usually more blood in my stool when I am on my period and it is ually softer too...Should I request a colonoscopy??? I did have lap surgery done last year and am pretty sure my doc checked my intestines, but am not sure if she looked into my bowels, this is something that I need to ask her....

I have been seeing a naturalistic doctor for my vulvodynia and they have been treating other women with endo using Cold Lazer therapy, have any of you tried this??? She stated that they have seen some success with relieving the pain??

DiamondInTheRough · 12-29-2008, 02:51 PM

Amy,

Thanks for your kind words.

Hmm, I've never heard of that laser treatment. Just wanted to let you know that I feel the same way after having a bm, it is sore and it can itch like crazy, which is why most doctors will assume it's just hemmrhoids (I know I didn't spell that right!). I guess in some cases, it could be both. But it's when it happens in cyclical fashion that really has you wonder about endo...

utgrrl82 · 12-29-2008, 09:28 PM

Thanks Diamond.

Sorry for your loss. I miscarried a few years ago so when I found out I was pregnant I was shocked and still have a hard time beleiveing I am. I don't think it will hit me until he is actually born.

Amy2822 · 01-12-2009, 03:09 PM

So have any of you ladies found something that helps with the pain/itching after a bowel movemnt (surgery, medications??....) I'm not sure what should be my next step would be to solve this issue???.....FYI, I do think the lazer treatment is helping with my volvodynia!.....I just have to mention that it is so nice to have some people that are going through this same exact stuff and to have someone to talk to that knows what it's like and just doesn't think i'm wierd....

DiamondInTheRough · 01-12-2009, 07:51 PM

utgrrl, you are so close, wishing you a safe delivery.

Amy, I use tucks wipes and prep-H cream. Make sure you get the cream, not the ointment, and for sure NOT the gel (it burns like bloody heck). This helps in the short term. Sometimes when it's been really bad, I soak in a hot bath using epsom salt. Keeping from trying to relieve the itching when you clean yourself helps a lot, too...