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Does This Sound Like Anyone Else? Does This Sound Like Anyone Else?

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Unread 03-17-2002, 06:33 PM
Does This Sound Like Anyone Else?

I posted on another area - but will repeat to see if anyone else is like me.
I have yet (1 yr later) to feel like my old self since surgery.
I am noticing the following pattern about once a month:

all this and a FLUSHING of face and wet pants as well!!!!!!!
Headache for days
followed by low back pain
after a few days that wraps around to pelvic area (mainly right side)
when that becomes intense, I have diarreah that is awful
the next day everything hurts and I am exhausted
then a few days left of back ache then back to "normal"

Went to gyno - said go to gastro - will do colonscopy in May
Reg dr said see neuro - did 3 MRIs but thinks may be gyno related
Heading back to uro

I do have several herniated discs in the back, stenosis and degeneration of the spine - but would that make me pee my pants and would that cause this bizarre flushing??? sometimes just 1/2 my face is beet red.

ANYONE LIKE ME????????????????
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Unread 03-17-2002, 07:38 PM
Does This Sound Like Anyone Else?


I wish I had a magic wand and could make all this go away for you or at least tell you for sure what's causing it. Unfortunately, all I can do is let you know that I will say a for you.

I'm wondering if the disc problems are causing the incontinence and diarrhea. Or maybe you have adhesions that are causing some of the problem. I had adhesions from C-sections that had attached to my intestines & caused horrible back pain during my periods. Most of my life, I've had Irritable Bowel Syndrome (or Spastic Colon). I would stay mainly constipated and then when it was time for my period or other times of stress, I would have diarrhea with laborlike cramps and break out in a sweat. I have no clue about what could be causing just one side of your face to turn red.

Please keep us posted on what the dr says and how you're doing.
Unread 03-18-2002, 03:48 AM
Does This Sound Like Anyone Else?

Thanks....I will let you know how it goes.
My face is a mystery. All or 1/2 - bright red but no sweats, sometimes I am actually cold during this.

I wondered about adhesions. I think I need a pelvic cat scan as the sonograms show nothing.

Do you think adhesions would show in a colonscopy?
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Unread 03-18-2002, 04:55 AM
Does This Sound Like Anyone Else?


Unfortunately, some things are not possible to detect with the uninvasive tests like Cat scans or ultrasounds. Your dr may need to do a laparoscopic procedure to diagnose whether or not you have adhesions. If you have this done and they are found, it could be possible that they can be removed at this time.

Since the colonoscopy only gives the dr a view of the inside of the upper rectum, s/he may not be able to tell if you have adhesions from this test either unless they are causing obstruction to this area.

Has your dr ruled out any allergic reactions that could be causing the redness of your face?
Unread 03-18-2002, 05:36 AM
Does This Sound Like Anyone Else?

It does sound like it could be any one of those things, or even something else. From reading here, gals with endo have h***ish pain and symptoms. Don't give up, even if it means scheduling yourself with additional or alternate / 2nd-opinion specialists - especially if you get a gut feeling one was close to diagnosing but you can't seem to get closer, sometimes taking those feelings to another can shed some light for all.

I don't know about hormones (yet), but like many, my bowels have also fought for leadership in my life around my cycles. You may want to look into the cyclic hormone-bowel relationship and ask doc if adjustments could ease this for you.

I was glad to hear you're having a colonoscopy, as they can tell many things. Research any suspected possibility as much as you can ... definitely a neurologist (at least with regard to the hot-face thing, that's very disconcerting) and maybe even consult a back surgeon and a chiropractor (I would not advise jumping into adjustments, but explain that you need to explore all alternatives for some possible answers) ... ???

It's hard, but just don't give up if your upcoming round doesn't produce an accurate diagnoses and treatment plan. We're all praying for you.
Unread 03-18-2002, 07:21 AM
Does This Sound Like Anyone Else?

THANKS for the replies..... today is still a bad day and to hear support from you guys really helps. Because I lay in bed thinking maybe its in my head.

But...finding out how many sufferers there are, I don't feel alone and I don't feel crazy.

Just when I am ready to give up, you guys are there saying keep plugging along - I appreciate it. I will keep going to find answers and let you know if I get closer to finding an answer.

Unread 03-18-2002, 10:13 AM
Does This Sound Like Anyone Else?

LaurLaur ~ I can relate somewhat to what you are saying. I have been having the flushing symptoms for almost a year. My GI, internist, Rheumy all said "overactive" nervous reaction. My neuro did nothing, no testing, etc. They all think it is cute. Well, it isn't - it's horribly embarrassing. I get the red face (checks and chin), it stings, and I get blotches/hives all down my neck and onto my chest. It hits me out of the blue - nothing seems to bring it on.

I have also suffered with almost daily headaches that my internist wanted to know about, but he never bothered to call me back to let me know what he is thinking about them.

I wrote last week about low back pain so bad, I couldn't sit at my desk. I ended up standing in my office for most of the day. Again, neuro did nothing to investigate this problem. He said I cross my legs too much and have bursitis in my hip? Family members have been sick, so I have tried to live with this problem as of late - thank goodness for pain relievers.

Finally, the diarrhea. Oh yes, my old buddy. I can blame it on the Fibro, the adhesions, Endo., you name it. Almost everything I eat goes straight through me and I continue to have right-sided pain even under my right rib cage. My gallbladder has been tested over and over - nothing. I had a colonoscopy on 12/21/01 and my GI doctor told me I had adhesions on the bowels - he had trouble getting the scope through on the right side and said the intestines were being pulled in odd directions. They loop back on each other. The last time I had a transvaginal ultrasound, the adhesions had pulled a loop of intestines up under my right rib cage. My gyn could clearly see it. So....I have no idea what to do and my GI doctor won't touch me unless there is a total obstruction.

I'm so sorry you are suffering with all of this. I hope you get some answers from your tests. It sure is a long road, isn't it?

Love & hugs,

Unread 03-18-2002, 12:44 PM
Does This Sound Like Anyone Else?

I printed out your message so I can re-read it from time to time and not think I am crazy.
The flushing I have had now before and after the hyst. The gyno says go to neuro then the neuro says its hormone related. I don't know. I do know hot tea or alcohol and hot showers will def trigger it. But it can flush up without reason and bizarre sometimes only 1/2...same as you chin and cheeks. And it's not a hot flash.

Headaches I seem to get once a month. But the back pain is excutiating when it comes. I was going to a chiro and it felt better but they are not run very well and I had worries that they weren't on the "up and up" so to speak. I may look up another down the road but first the primary dr wants me to see another ortho person.

My pain is really down low - is yours?
I go in May for a colonscopy.......I just want them to find something that is causing the pain. What are you suppose to do now? Just suffer?

What pain med have you found that works? I've been given Ultram for pelvic and also have Vicodan..... none of it works. I try to take Xanax each night just to help me sleep...seems to relax the bladder as well and I am not up all the time to pee.
Gee - glad we paid and had ourselves repaired!

Let me know your progress as well. Thanks for replying.
Unread 03-18-2002, 01:12 PM
Does This Sound Like Anyone Else?

LaurLaur ~

First of all, you're not crazy. I know the medical "professionals" pretend that we are, but no, we are not. My internist told me if I "took a 2 week vacation, I'd probably feel great!" Let me just say that I promptly told him I wasn't hormonal (they check out fine), I don't need a vacation and yes, my marriage is wonderful. Geesh! Doctors - UGH!

I have had the flushing problem for quite some time, but not before my hyst. It has just gotten progressively worse and comes on more often. My face stings a lot whether or not the redness is there. When I step out of the shower, my checks and forehead are red and sort of have a rash - it fades as I cool off. The blotches are irregular shaped and don't itch and I know it isn't a hot flash since the last blood work I had done (last month?) turned out fine for hormone levels. I still have one ovary, so I am not on HRT.

The headaches I get aren't migraines by any means - they are more chronic and I just know they are there. However, there are days when I can't stand to be in a lighted room and headlights just kill me. Today's headache is reaching that stage. My eyes almost feel sore.

The back pain last week was very, very low and the center of my back "burned." I also have right hip pain, both sides sometimes ache and I even have pain midway between my shoulders and my lower back. I have also noticed a shortness of breath from time to time if I have to walk a short distance very quickly. I have some sort of mild swelling on my right side. I assume the adhesions are at it again since the rib pain is back. My GYN already cut the adhesions that were pulling on the bowels once. The pain is very familiar.

I am supposed to see my internist in another 6 months. I see my GI guy in 4 months. I won't see the neuro again. He gave me Vioxx, but it didn't help and I think my problem is worse than crossing my legs too much. But, without an MRI, who knows??? My GI guy gave me Doxepin to help me sleep, but I had to cut the 10mg tablet down to every other night - it was knocking me out. Other than that, I have no meds. I basically just deal with it. I think my internist suspects an autoimmune disease, but he is waiting for it to develop more symptoms. He told me to tell him if the headaches continued. I told him 3 weeks ago and he has yet to contact me. Some of my labwork was "iffy", but nothing "off the charts" they said. My ANA is up again and I am getting allergy shots once a week. I am about to drop those as they seem to be making no difference. They were for food allergies, yeast and inhalants (pollen, etc.), but I really don't think I need these shots - and they HURT! Anyway, there's my saga!

No, you're not nuts. I am tired of dealing with the Endo/Fibro/Adhesions, but I could be worse. The hardest part is knowing something is wrong and not knowing what you are fighting. Fear of the unknown I guess.

Good luck to you sweetie - hang in there!

Love & Hugs!


I forgot! - My neuro did ask me if I had ever lost control of my bowels. I said "not yet", but maybe there is some connection between your back and bladder problems.??
Unread 03-18-2002, 03:40 PM
Does This Sound Like Anyone Else?

Hey girls, count me in, I have the blotchy red neck and chest thing and just about anything sets it off these days......and NO ONE knows what it is, I also get it if I have an allergic reaction so maybe there's a connection I don't know, but if I get upset it happens too.......and only since the hyst Sometimes it's just red sometimes it's these angry reddish/purple botches that take all of my neck up!!

I also have the lower back and right hip pain........maybe we should start a club......I don't get the diarehea but have terrible pain with bowel movements.........

so you're not alone, if anyone figures it out , please share let me know!! 's!!!

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