TOSer with Endometriosis
 

I'm hitting you guys as well as the general forum with this. Any personal stories would be welcome.

I have had right abdominal pain for months (this is massive pain that vicoden will not touch). Have had every test in the book including two colonoscopies in the past six months. Everything is coming out normal. My dr is going to give me injections of Lupron, I guess to prove whether it is endo or not. No one has offered a laporoscopy unfortunately. According to my family dr, if the Lupron doesn't work, then I need to go back to the pain spec for more blocks. She says that the "trunk" has it's own nerve system and that my brain may have rewired itself to new pain paths.

I also have rectal bleeding during my periods which they can't explain through the colonoscopies.

My background is TOS and 5 bulging/herniated discs in my lumber.

I've been reading up on Lupron. I'm 47 so I don't mind early menopause.

Have any of you experienced Lupron?

I know nothing about LUpron but I LOVED getting my endo taken cafe of by a uterus (with no hormone removal) so that I didn't ahve any more low pain, unbelievable blood clots and ****.

It seems like the ins. co. try to save money with these ablations and such that are not very meaningful, but delay time so that maybe the hysterectomy will not be on their watch...

Mine was a particularly good outcome perhaps?

Sorry you're having bleeding and you don't have answers yet. It must be frustrating.

Have assisted in colonoscopies years ago, so if they didn't find anything that would allow a canal exchange some way, then look for other possible causes. It's a good diagnostic procedure. Still not 100%. Your colon has little wrinkles, turns, and lots or nooks and cranies for things to hide...:eek: not trying to scare you.

...and sometimes unexplained bleeding ends up being just that, unexplained. No diagnosis/no treatment. I guess no news is good news if that would be the case. and you can have a peace of mind they're not finding other things while exploring the bleeding. Doctors find a lot of other health issues while looking around and exploring causes of unexplained symptoms.

My thoughts would be... hum...

Is this every time you have your period? the whole time?

morning? night? standing? lying down?

What color is the rectal blood?

There's an in home stool test you could do at random to see if there's any blood any other time, or maybe infection.

Do you have hemorrhoids? diarrhea? constipation?

How's about infection? that can cause bleeding.

Are you on blood thinners?

Have you had lab work?

PT/INR (prthrombin time/International normalied ratio) measures clotting time.

Iron?

think... think... think... :rolleyes:

medications? vitamins? herbs?

Are you having rectal pain? abdominal pain? leg pain?

Family history? any colon cancer?

Have they done a colonoscopy while you have rectal bleeding?

There's also a lower colon exam, sigmordiscope. Don't have to be sedated, done in internist's office. not too bad if you need it.

I'm not a doctor, so find one you can trust. Ask questions. Hope and pray you get the right answers. :hug:

My therapist says she can "work on" endometrosis. Says it helps and recommends if you have the diagnosis.

Thanks for answering
 

As for most of your questions:

I waited 8 weeks for my period to start so they could do colonoscopy during it. It waited for five days after the colonoscopy to finally start. Go figure!

The blood is bright red. They said if it was a fistula it would be transfering back to my vagina in a disgusting way if you get my drift.

The abdominal pain starts about three inches from my bellybutton and over and up to my ribs and into my back. I know that TOS can cause rib pain. My abdomen feels like it's been scalded with hot water and as my activity making dinner and such it gets to the I'm stooped over level. I have quite a bit of dry heaves/vomiting when the pain levels hit the roof. I take 6 vicoden a day and it does not even touch it. Can only get relief if I go to ER for their magic injections. It's too expensive for four hours of relief.

My grandmother had colon cancer. But with two colonoscopies and a barium enema they would have seen something. I've had two ultrasounds of my right abdomen and an internal ultrasound of my female organs. All were fine. There was some scarring in my sigmoid that was old and scarring in my rectum which could be explained by having two babies.

If I had my druthers, I'd have them to a laporosocopy and look around. No one has offered yet. They may be affraid of my scar tissue factory that is my body.

So there's my answers. I'm waiting for the ins to approve the shots. From what I've read people either love them or hate them. Horror vs. success.
I hope I'm one of the successes.

Two things come to mind- do you have your gallbladder and your appendix? Also, your symptoms sound somewhat similar to mine (several years ago) and after every test came back normal the PM dr. diagnosed me with intercostal nueralgia and put me on Neurontin because Vicodin wouldn't touch the pain. It helped, ALOT.

Endo
 

Funny topic to come up. I had an endometiral ablasion on Tuesday. I didn't have alot of pain before, just HORRIBLE bleeding. I'm 45 and don't need this anymore. I have 4 kids and have already had my tubes tied. I have been told that the ablasion will give me very light to no periods. I hope. I didn't have horrible cramps before. I hope you find some relief because it really stinks! Best of luck! Linda

I hope it's successful too.

yeah, a fistula could do it.

Sounds like your docs are investigating everything they can for you. I know it's frustrating to go through all this and still not know. Don't give up.

It is good to know all your parts are in good shape. That's something to be thankful for.

It sounds like your suffering is overkill. :(

Could it be the Vicodin making you vomit? Just a thought. I have to take Phenergran with most narcotics.

Keep searching. :hug:

Have they checked you out for Ovarian cancer???????????????????????
just a thought if it is a fistula........why????
It may almost be worth and open up and have a look?

sorry you are in so much discomfort!!
may your stress and pain ease....I'll keep you in my prayers!!
love and hugs,
Victoria:hug:

my endometriosis
 

i had endometriosis, and altho it was painful it was not that painful. i never had to take any pain meds for it.

i had a laparascopy in 86, now that was painful. during it they removed some cysts.

then in 96 it was back with a vengeance, a little more painful, still no pain meds needed (most of my other pains hurt a lot worse). however, i was losing a lot of blood and had big clots coming out. i started getting nauseated from taking bc pills to fight it. i was also a little dizzy. i ended up having a hysterectomy with a bilateral salpingectomy and oopharectomy. now that was really painful. the endometriosis had invaded the surrounding organs and the doctor said that i was within a month or two of having kidney failure because my urethra would have been totally closed off. if you are bleeding in your rectum, maybe you have something similar.

i hope you don't need this extreme measure. i was only 40 when this happened and so my bones are old before their time.

so that is my story, hope it helps.

Thanks for keeping up with me
 

I'm about three weeks in from the three month shot. After 1 week I had a major period (bleeding out both "holes"). I'm hoping that since the period is officially over, the tissues both vaginal and other places will now be empty and will stay that way. The pain seems to be easing slightly. I regularly get an Icepick feeling that hurts like heck. Some times it feels like Freddy Krueger is running all his finger knives on my insides. I'll be doing nothing fancy and wham, he gets me. Hopefully that will calm down.

So there's my update

Someone asked about my gallbladder. Last year I was taking some morophine type med and I got sick as a dog. I was vomiting garbage. My stomach hurt like heck. I would pass the worst gas you have ever smelled and totally clear the room. So they took out my gallbladder. A week later, still on the morophine pills all the nastys continued. I went a dr that suggested an egg sandwich. They put a tracer in the egg and make you eat it.Then I layed on a table for two hours with an xray machine over my stomach area. They were timing how fast the tracer would leave my stomach. When all was said and done my stomach was emptying out in 10 hours instead of the usual 3-4. So breakfast would stack on my lunch then my supper would stack on my lunch. None of it was given a chance to process and pass on to the next step. It just sat there for a couple of days until I was sick and expelling it. Not a really fun time in my life. I still have a hard time eating eggs of any kind. Brings back too many bad memories. I found that Flexeril slowed my stomach way down as well so had to quit taking that.

I figure if we can find the mystery of the morophine/stomach problems after four months, we can find out what this abdominal pain mystery is. I just have to be patient. Yuck. Who has any patience after 9 months now.

Oh well. This too shell pass.

Marcia