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can i ask you to explain your pain? how does it feel? mine is real bad can i ask you to explain your pain? how does it feel? mine is real bad

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Unread 05-05-2003, 11:41 PM
can i ask you to explain your pain? how does it feel? mine is real bad

havent posted in awhile. i really dont know what to do. my pain is ALL on my right side. and they are getting so so bad. it even hurts to turn over from side to side in the bed. i get up and cant even walk from the pain. i take my pain pills and just lay and wait for them to take effect. the pain is so bad when i wake up in the morning and then last sometimes all day. but then sometimes it feels like it is my colon.. i have had 5 surgeries in all abdominally.
but then i have also had blood in my urine, real red blood, last year in may, it was like i was starting my period, even though i have had a hysterectomy in 93 from severe endo,,, it was adhered to my bladder and bowel, and then i had the blood again here about 2 weeks ago... and then that night all functions, the BM and the urine all stopped.. i burned all night and i pushed all night trying to have a BM. all i had was suppostitories and they didnt help at all.. i had to go to er and they had to use 3 enemas and a catheter to relieve me.. i have been really suffering ever since. it was 2 weeks saturday. they have done blood tests which when i went to the er my white blood count was elevated and i still had blood in my urine. but left without any antibiotics so i went to my primary and he told me to take levequin. i have had a kidney sonogram which i have not heard from and then cat scan from there. last year i had a cysto that showed normal..
and that was from a urologist but that is all he testing he did.
oh yea and then i did have an ivp from my primary and said ok.
but this pain is year round. it hurts from the front to the back. it hurts to touch it.. and you know i might have posted this already.. i cant remember anymore. my husband is in the hospital fighting infection and then maybe heart surgery after they get it under control, he has been in there 3 weeks, after a heart scare one night. the infection has spread to his heart.. but that is just the short story , that would be a novel..

but i just wanted to know how you alls pain felt.. i wonder if i need a lap,,,or if it would make it worse. i think i need one though.
and i may go ahead and get a colonoscopy too. i just dont see how you can tell the difference between IBS, adhesions, recurring endo,, gosh how confusing. so just wanted to know what you alls pain felt like.. feeling kind of lonely and hurting tonight.
hope you all are doing ok,,, i have trying to search and read.. thank you all for reading.
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Unread 05-06-2003, 12:06 AM
can i ask you to explain your pain? how does it feel? mine is real bad

Hi sweetie I'm so sorry to hear of your pain! It sounds like it's been going on for a long, long time. That kind of pain can make you so very tired.

Everyone feels pain a little differently. For me, the adhesions I had felt more like a pulling sensation than a real pain. I had diverticulitis, too, which was an intense stabbing pain that sometimes radiated from the main location in my lower left abdomen down into the groin area. I don't have IBS (at least I don't think so) and haven't had endo so I can't comment on those, but unfortunately, there are many ladies here who can.

I just wanted to offer you some s and encourage you to get a referral to a gastroenterologist and get that colonoscopy you mentioned. Also what did your CT scan show? Did they use extra contrast? I am wondering if maybe something (endo? adhesions?) is trying to strangle your colon. When I had most of mine removed they found the blood vessels from my former ovary wrapped around it trying to strangle it. That can make for some of the symptoms you described.

I'm really concerned about you... it isn't good to have your urinary and bowel functions shutting down like that. I hope if it happens again you will get to the ER right away, OK?

I hope you know you're not alone now... you have lots of sisters here who share your pain and your concerns. Please let us know what you find out, we'll be keeping our fingers crossed for you!

Unread 05-06-2003, 06:23 AM
can i ask you to explain your pain? how does it feel? mine is real bad

My pain can vary on a daily basis. Currently I'm on the duragesic patch which helps alot with the pelvic pain, unless my cat steps on me. OUCH!!! My abdominal pain varies from a dull ache to a constant throb to someone sticking a thousand needles in my gut. My abdomen is usually very tender to the touch also. The pain I get from IBS is more of a full swollen gassy type pain.

The pelvic pain can vary from a burning feeling to a tugging to a feeling of a thousand tiny needles are sitting inside of me trying to get out.

Some days are worse than others. Since I've become unemployed the pain has been a little better. While I was working the abdominal pain were really becoming unbearable. I guess stress can have alot to do with our pain levels.

Please do call your doctor if you're not feeling any better. Keep us posted on how you're doing.
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Unread 05-06-2003, 11:35 AM
can i ask you to explain your pain? how does it feel? mine is real bad

(((Nana))))) So sorry you're in so much pain

I have IBS and, among other things, the IBS brings along colonic spasms. These spasms, which tend to be cyclic, are a stabbing pain in the lower right abs, right where my right ovary is. At its worse, the spasms will radiate from the front to the back and will take my breath away. Most of the time, they don't last long, but long enough to make it hard to work through the pains.

Most of the time, the spasms are like a very sharp pinching pain in the lower right abs.

As you know, it's hard to describe pain, but that is just about the most accurate way of describing that pain.

I do not have adhesions or endo, so can't comment on those.
Unread 05-06-2003, 07:41 PM
can i ask you to explain your pain? how does it feel? mine is real bad

I'm soo sorry you are suffering so very much
I have several dx's; severe Adhesions that cause me a pulling. burning, stabbing pain in my right side, period like cramps 24/7 & pain that radiates thru my back & down my legs, Chronic Intermitant Bowel Obstructions(frome Adhesions) that cause me a severe stabbing pain under my ribs, disgestive problems, constipation. Nerve damage; that causes me stabbing shooting pain in my vaginal cuff area. Proctalgia Fugax; it makes me have a sharp shooting pain in my rectal area. I also have several back disorders that cause me constant spinal & low back pain, muscle spasms & pain that radiates down the back of my legs. IBS;bloating, constipation & bowel spasms...
I wonder if yours is recurring Endo? Here is some info that might be of some help:

recurring Endo-Q&A:

Surgical Procedures for Endo:

Endo Specialists & Resources:
Dr Cooks homepage:

Endometriosis Conquering The Silent Invader:

Recurring Endo at the Center For Endometriosis Care:

Endometriosis-Dr. Stanley West:

Hysterectomy & Endometriosis Questionnaire:

Post-Op Ovarian Suppression:

Incisional Endometriosis:

Endometriosis Research Center:

Radical Endometriosis Surgery:

Myths vs. Facts about Hysterectomy:

Benefits vs. Side Effects of Hysterectomies:

hormone replacement after complete hysterectomy:

Chronic Pelvic Pain Diagnosis and Management:

[quote]What is irritable bowel syndrome (IBS)?
Irritable bowel syndrome (IBS) is an intestinal disorder that causes:

crampy pain
changes in bowel habits
IBS has inaccurately been called by many names:

mucous colitis
spastic colon
spastic bowel
functional bowel disease
IBS is called a functional disorder because there is no sign of disease when the colon is examined. Because physicians have been unable to find an organic cause, IBS often has been thought to be caused by emotional conflict or stress. While stress may worsen IBS symptoms, research suggests that other factors also are important.

IBS often causes a great deal of discomfort and distress, but it is not believed to:

cause permanent harm to the intestines.
lead to intestinal bleeding of the bowel.
lead to a serious disease such as cancer.
It has not been shown to lead to serious, organic diseases nor has a link been established between IBS and inflammatory bowel diseases such as Crohn's disease or ulcerative colitis.

How does IBS occur?

Colon motility is contraction of intestinal muscles and movement of its contents. It is controlled by nerves and hormones, and by electrical activity in the colon muscle. Movements of the colon propel the contents slowly back and forth toward the rectum, and several times a day strong muscle contractions move down the colon pushing fecal material ahead of them,which can result in a bowel movement.

The person with IBS has a colon that is more sensitive and reactive than usual, so it responds strongly to stimuli that would not affect others. The colon muscle of a person with IBS begins to spasm after only mild stimulation or ordinary events such as:

distention from gas or other material in the colon
certain medicines
certain foods
Women with IBS seem to have more symptoms during their menstrual periods, suggesting that reproductive hormones can increase IBS symptoms.

What are triggers for IBS?

The most likely triggers for IBS are diet and emotional stress. Scientists have some clues as to why this happens.

Eating causes contractions of the colon, normally causing an urge to have a bowel movement within 30 to 60 minutes after a meal. With IBS, the urge may come sooner, accompanied by cramps and diarrhea.

Stress stimulates colonic spasm in people with IBS. Although not completely understood, it is believed to be because the colon is partly controlled by the nervous system. Counseling and stress reduction techniques can help relieve the symptoms of IBS, however this does not mean IBS is the result of a personality disorder. It is at least partly a disorder of colon motility.
What are the symptoms of IBS?
The following are the most common symptoms for IBS, however, each individual may experience symptoms differently.

IBS symptoms usually include:

crampy abdominal pain
painful constipation and/or diarrhea.
alternating constipation and diarrhea
mucus may be in the bowel movement
Bleeding, fever, weight loss, and persistent severe pain are not symptoms of IBS, but indicate other problems. The symptoms of IBS may resemble other conditions or medical problems. Consult your physician for a diagnosis.
What are Adhesions?
*Adhesions: Fibrous Bands that Connect Tissue Surfaces that are Normally Separated*

Adhesion formation is a natural consequence of surgery, resulting when tissue repairs itself following incision, cauterization, suturing or other means of trauma. Even the most careful and skilled surgeon will inevitably effect tissues inside the abdomen during a surgical procedure. At the places where a surgeon has had to cut, handle, or otherwise manage parts inside the body, tissues which normally should remain separate will sometimes become "stuck" together by scar tissue, defined as adhesions. This process begins immediately and continues for up to 7 days following surgery

The Problem of Adhesions:
The incidence of adhesions is overwhelming. Adhesions develop in 93% of patients following abdominal and pelvic surgery.
Following surgery, adhesions may form, for example, between the incision in the abdominal wall and the small bowel, often causing small bowel obstruction. This obstruction can lead to vomiting and debilitating pain. In extreme cases, the bowel may rupture, necessitating emergency surgery for the patient.

How Adhesions Effect a Patient:

Adhesions can lead to serious complications including small bowel obstruction, female infertility, chronic debilitating pain and difficulty with future operations.

The consequences of adhesions can be substantial. Postsurgical adhesions cause up to 74% of bowel obstructions.3 Postsurgical adhesions are responsible for 20-50% of chronic pelvic pain cases.3 Adhesions also are a leading cause for female infertility, causing 15-20% of cases.3 Quality of life is also potentially impaired.

Quite often a patient will undergo surgery to lyse (cut) adhesions, only to have them re-form. Once a patient has undergone a colorectal procedure, the incidence of re-operation within two years is high - up to 20% of patients will have a subsequent colorectal procedure in that time.4 Many of these surgeries are to remove adhesions. Between 2.3 and 5% of patients will have to undergo adhesiolysis for bowel obstruction within two years of colorectal surgery.4

Re-operations are also complicated by adhesions. Surgeons have to spend a considerable amount of time, anywhere from 10 minutes to several hours, lysing adhesions before the new procedure can begin. This can prolong the patient's recovery time and increase the risk, cost and complexity of the surgery.

Adhesions can range from filmy to dense, with dense adhesions proving to be the most difficult for a surgeon to treat. The use of a physical barrier to separate the traumatized tissue from other tissues will decrease the risk of all adhesion formation.
Intra-abdominal adhesions are usually the result of surgical or gynecologic operations, pelvic inflammatory disease (gonococcal or chlamydial), appendicitis or endometriosis. Adhesions occur after abdominal surgery in more than 60 percent of cases, though less than 30 percent are symptomatic.

Adhesions may be responsible for chronic persistent abdominal pain without associated pelvic pathology. Clinically, adhesions present as chronic or acute abdominal or pelvic pain, partial or complete mechanical bowel obstruction, and infertility. Though adhesions probably cause pain by entrapment of expansile viscera, the relationship of adhesions to abdominal pain is still controversial. In contrast, mechanical small bowel obstruction after previous surgery demonstrates unequivocally the most severe effect of adhesions.

Patients with chronic or recurrent abdominal pain and a history of numerous abdominal surgical procedures are often denied treatment if they are not obstructed or symptomatic of intermittent bowel obstruction._This may be because, from the surgeon’s viewpoint, adhesiolysis is associated with low reimbursement for long operations with high medicolegal risk. Also, adhesions may recur, and the risk of enterotomy (a hole in the bowel) during surgery is very high.

While surgical therapy is withheld, multiple abdominal diagnostic procedures including abdominal CT scan are frequently ordered. The patients are then sent to chronic pain clinics for evaluation. Though few studies exist, a recent report suggests that women with severe, dense vascularized bowel adhesions have a significant reduction in pain after adhesiolysis.

Chronic pelvic pain and/or associated intestinal disturbance are a major cause of misery for thousands of patients._ Often in constant pain, the patient experiences loneliness, hopelessness, frustration and desperation with thoughts of suicide._ Family and work relationships are strained to the limit._ Although ADHESIONS are often (but not always) the cause of this pain, treatment for adhesions is not performed either because the surgeon does not believe that adhesions can cause the problem, or because lysis of adhesions is considered too difficult or futile.Adhesions are an almost inevitable outcome of surgery, and the problems that they cause are widespread and sometimes severe._ It has been said by some that adhesions are the single most common and costly problem related to surgery, and yet most people have not even heard the term._ This lack of awareness means that, excluding infertility, many doctors are unable or unwilling to tackle the problems of adhesions, many insurance companies are unwilling to pay for treatment and many patients are left in misery.
Adhesions and Chronic Pelvic Pain (CPP):
ADHESIONS are believed to cause pelvic pain by tethering down organs and tissues, causing traction (pulling) of nerves._ Nerve endings may become entrapped within a developing adhesion._ If the bowel becomes obstructed, distention will cause pain. Some patients in whom chronic pelvic pain has lasted more than six months may develop "Chronic Pelvic Pain Syndrome.”_ In addition to the chronic pain, emotional and behavioral changes appear due to the duration of the pain and its associated stress._ According to the International Pelvic Pain Society:
"We have all been taught from infancy to avoid pain. However, when pain is persistent and there seems to be no remedy, it creates tremendous tension. Most of us think of pain as being a symptom of tissue injury. However, in chronic pelvic pain almost always the tissue injury has ceased but the pain continues. This leads to a very important distinction between chronic pelvic pain and episodes of other pain that we might experience during our life: usually pain is a symptom, but in chronic pelvic pain, pain becomes the disease."

Chronic pelvic pain is estimated to affect nearly 15% of women between 18 and 50 (Mathias et al., 1996)._ Other estimates arrive at between 200,000 and 2 million women in the United States (Paul, 1998)._ The economic effects are also quite staggering._ In a survey of households, Mathias et al. (1996) estimated that direct medical costs for outpatient visits for chronic pelvic pain for the U.S. population of women aged 18-50 years are $881.5 million per year._ Among 548 employed respondents, 15% reported time lost from paid work and 45% reported reduced work productivity. Not all ADHESIONS cause pain, and not all pain is caused by ADHESIONS.Not all surgeons, particularly general surgeons, agree that ADHESIONS cause pain._ Part of the problem seems to be that it is not easy to observe ADHESIONS non-invasively, for example with MRI or CT scans. However, several studies do describe the relationship between pain and adhesions. According to an early study (Rosenthal et al., 1984) of patients reporting CPP, about 40% have adhesions only, and another 17% have endometriosis (with or without adhesions)._ Kresch et al., (1984) also studied 100 women and found ADHESIONS in 38% of the cases and endometriosis in another 32%._ Overall estimates (Howard, 1993) of the percentage of patients with CPP and ADHESIONS is about 25%, with endometriosis accounting for another 28%._ These figures must be understood in their context, and I recommend highly Howard's article.It is important to recognize that emotional stress contributes greatly to the patient’s perception of pain and her/his ability to deal with the pain._ Rosenthal et al. (1984) found that of the patients in whom a possible physical cause of pain (including ADHESIONS) could be identified, 75% had evidence of psychological influences on the pain.
Women and Pain:

Self-Discovery Through Journaling:
Disorders More Common in Women:

Centre for Endometriosis & Pelvic Pain Home Page

Chronic Pelvic Pain:

I hope this is of soem help ((Nana)) Pls keep us posted...((hugs))
Unread 05-06-2003, 10:34 PM
can i ask you to explain your pain? how does it feel? mine is real bad


I'm sorry that you've been having so much pain 's
I have pain on a daily basis & have several dx's also. The worst is the nerve pain in my groin - it is a stabbing type pain & I take methadone & neurontin daily which usally keeps it under controll. I also have Intercystitial cystitis (a bladder condition). It is a very painful condition that causes severe pelvic and bladder pain, which is like an aching/spasm type pain. I also have severe "period like" cramping. Like you, I have a lot of pain on my right side. My right hip & right leg & foot are very painful & my right knee & foot are often swollen. The hip/leg pain radiates from my lower back which is another type of pain, usually an aching pain.
Thats most of it, at least the worst of it anyways. I hope you find some answers soon & get some relief to your pain
Do you go to pain management ? If not, then you might want to consider that option. There are several of us here who go to it & it has saved our sanity literally.
Take care of yourself & please keep us updated, ok ?


Unread 05-07-2003, 01:14 AM
gosh i love you all to death!!!!!!!!!!!!you are my angels

thank you all so so so so so much for the replies.. with all that is going on with my life right now and being alone in this house every night , you have no idea how i feel to get and read these replies and i cant explain it, it helps to know that you arent crazy,.,. i mean that i dont want you all in pain, but THAT I AM NOT CRAZY.. most of all of you all's symptoms i have.. from the back and leg and hip and all sorts of pain. this right sided pain is so bad.. i have a cat scan scheduled for may 14th and i am going to make sure there is contrast and that they are doing all the organs.. i want it from the breast down.. while they are doing it..
i just cant believe how bad it hurts to turn over in bed.. i want to scream so bad.. it takes so long to turn cause of the pain. and i mean you can be in a deep sleep( which is very rare) and then you decide to turn over,, the heating pad better be near.. that is all i have somedays that gets me through.. i have been diagnosed with MS from a brain MRI so my whole body right now in the heat is really getting on my nerves.. i am going to a pain management doc, not for adhesions or endo,, but for my MS.
but i am ready for them to look in there and see what is going on and i cant believe i am saying that.. cause i know the consequences of them doing it.. i have been reading where they have some stuff they are using now in some places where they can put on the adhesions where they dont come back so soon.. is this all just quackery?? have any of you heard of it? of course in my little part of town and around this area they wont know about it.. but anyway. i may let them look.. what do you all think? do you think it would be well enough left alone. if they dont find anything from the other tests i am due for? it feels like something something is strangling my colon to the point of not being able to work anymore .. my colon that is cause i am not able to work right now. man this hurts. and i even have Gerd on top of that. isnt life grand... i have a doc that said whenever i am ready he will do a lap, but i do not want to be opened up all the way...
i just dont with my husband in the shape he is in.. and i probably wont get to IF AND WHEN he gets well. they cant find a antibiotic that will fight his infection ,, they have tried so so many and they keep messing up his blood.. and then they have to try another one cause he develops a allergic reaction to the antibiotic and it starts shutting down his kidneys.. like i said all of this has been going on since december.. and now has spread to his heart and now maybe heart surgery... AND LIKE I SAID IF THEY CAN GET this infection under control.. the last hospital discharged him to me very very sick... and they are one of the top hospitals around..
so one night we were in er with 50/50 blood pressure with 190 heart rate... very very sick. and it was all from the infection has spread to his heart which i had asked his internist from this big hospital ( which never has any nurses or beds) to test his heart please cause of some of the symptoms he was having and the doc shook his finger at me and said if that need be i will do it,, but he didnt.. there i go getting on that novel.. you wouldnt believe all that went on in that last hospital.. and has got him to where he is today.. nearly dying i guess. he is holding on. determined to hold on.. we have 6 grandkids and 2 of them are coming to see him from arkansas that he practically raised the first one,, so he is so so excited.. so he is hanging on.
so i dont complain alot about me... just take my pain pills and go on.. but most of the time i dont even or cant leave the house , dont feel good, hurt, and lay around and watch tv.. great for the finances huh???? i hate it..

well thanks again for all the replies.. i needed you all so bad.. and you were my angels.... love you nana
Unread 05-07-2003, 07:22 AM
can i ask you to explain your pain? how does it feel? mine is real bad

Hi nana

You sure sound like you have alot on your plate. I am so sorry to hear about your DH.. I will keep you all in my prayers!

As for the pain I have, well, the endo pain was alot like the adhesion pain which is pulling, burning, cramping, shooting and acheing in my pelvic area. It sometimes went straight through and around to my lower back. I just had adhesions removed and am still having the cramping which is a constant ache that goes into a throbbing pain that radiates down the front of my legs to my knees.

I also have herniated discs in my back and that pain is like no other I have, it is horrific at times. It also causes my rear end to throb and runs down the backs of both legs all the way to my feet. At times my rear end will go numb.

I do have alot of other pain such as hernia pain and upper quadrent pain that is still under investigation, I am scheduled for a HIDA scan and an Upper GI for that.

I could not guess what is causing your pain since so many things can cause the same pain, but I would definetly say that if all of your tests come back fine to go have the lap to see what is going on in there.

I will be praying for you and your DH. Feel free to come and pour it all out, that is what we are here for!!


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