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Is it all in my head??? Is it all in my head???

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Unread 03-17-2003, 08:01 PM
All in your head???

First let me send you a warm

I will tell you my ALL IN YOUR HEAD story and then maybe you will not feel like it is just you!!!

10 years ago I had horrible periodss and HORRIFIC pain that made me unable to stand. I went to the Gyn and he did a diagnostic lap. He came in my recovery room and told me he saw NOTHING that could be causeing me pain. He told me it was all in my head (word for word). I went on like that on and off for 8 years until 2001 when I started having periods that lasted for 3 to 4 weeks and stopped for a couple of days and started again. I layed curled up in a ball in so much pain and bled through a super tampon and overnight pad. They gave me shots to make me stop and I finally did, but the pain did not..
I made an appt and went in and saw a PA, she told me I had bacterial vaginitus and put me on antibiotics and sent me home with Motrin. I was up all night long in pain and went in the next morning and demanded to see a Gyn. He did a pelvic exam, told me to throw the antibiotic away, I did not have an infection and scheduled me for a lap. I waited 3 weeks for surgery and the waiting brought on all of the old feelings I had about it all being in my head.

I had my lap and he came in and told me I had endo, adeno and both ovaries were full of cysts in and out. I even had the pictures to prove it to myself. Needless to say I had to have a radical hyst.

I went in for my post-op appt and my Gyn told me that the previous Gyn that did my first lap noted my records stating that he found nothing except a clear substance and called it inconclusive. IT WAS CLEAR ENDO!!! I went 8 years with it and did not even know it. Had it been diagnosed the first time around I may not have had to have a hyst. and I SURE would not have been scared to tell my other Dr's about my pain for fear they would ALSO tell me it was all in my head.

That was almost 2 years ago and unfortunatly I am having pain AGAIN and am scheduled for my 3rd lap April 30. I am not sure what is in there, he suspects either more endo or adhesions, but we will never know until he goes in and looks!!

If you can feel it, IT IS REAL!!! If it hurts, IT IS NOT IN YOUR HEAD!!! Listen to your body and do not take NO for an answer!!

Think of a lap as a TEST. We can have every test in the world, but endo and adhesions can ONLY be seen during a lap. At least if you have the lap you have either confirmed what is really there or can take the next step to finding out what is causing your pain.

Sorry, I did not mean to go on and on here. It is all in your head just makes me furious !!!!!

Take care of yourself and keep us posted!!

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Unread 03-17-2003, 08:13 PM
Well said Pam!

I just read your post to Susie...

...and I agree wholeheartedly. Listening to our own bodies is the best tool we hold in our hands. I did everything my doctor advised to find out what was causing my pain, went through every test, everything available and gladly as I was in so much agony. In fact, I didn't realize just how bad I felt until I started feeling better...

Surgery for me was the last option, but even I knew that it was inevidteble. I knew all along it was adhesions that was causing my pain...I lived with it 24/7...I felt the tugging, pulling pain.

So...Susie, don't think it's "all in your head" because it's not. Listen to your are with it 24/7 and only you really know how you feel.

I wish you the very best and please let us know how you are doing, ok? 's

Unread 03-18-2003, 06:33 AM
Thanks again sisters

I am so glad I am not alone! I thank you for your stories, Lori, and Pam... Actually Pam I have been watching your posts... I'm sure there is something there, and it would be logical since I had to become more active then I wanted post hyst... I had to fly across country because my father was dying. So I'm sure all that stress and such took it's toll in my healing. Plus I read in my surgery report that he saw adhesive disease involving the entire left pelvic wall... And he did not remove it then, just the ovary on that side. GRRRR. I already have a plan b, if my gyn does not think there is anything goin on, I WILL get a second opinion. I have the dr in mind already. Thank you so much for your time, and comfort.
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Unread 03-19-2003, 02:29 PM
So Sorry

Hey Sis! Sorry to hear about your pain. It sounds like adhesions to me. Know that you will continue to be in my prayers and everyone here at Hystersisters is here for your support. I too am going through the whole pain thing only it isn't adhesions, its scar tissue and weak muscles. If you don't feel confortable with what your first gyn tells you, by all means please do get a second opinion and don't feel bad for doing it. Unfortunately not all doctors know everything. It took me 5 years to get a diagnosis of Fibromyalgia so I can understand your turmoil of being afraid of being labeled a hypochondriac. You're not. Be pursistent. Keep us posted.
Unread 03-19-2003, 03:44 PM
Is it all in my head???

I am another sufferer of some very extensive, painful Adhesions. As the others said the only sure way to dx them is via Lap. I have seen soo many Drs, several of which told me it could be Adhesions, or they dont cause pain Right after my Hyst, I kept telling my Gyn of my right-sided pain. He kept assuring me it was just HEALING...well it continued to worsen. He finally ordered an U/S. It revealed a large mass along with multiple blood-filled cysts on my Right Ovary. At 12 weeks post-op I underwent an RSO. The mass was Adhesions, the pain only worsened. Several weeks later, a few more Dr visits & 2-3 trips to the ER, I underwent emergency surgery for 2 Total Bowel Obstructions from Adhesions. Before my Hyst, I voiced my concern over Adhesions caused by this surgery. He told me how he used careful techniques ect & how they would unlikely form or cause further problems...yeah

Here is some good info on Adhesions, symptoms, causes & treatments:

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.This paper describes adhesions, their treatment and their relationship to pain and bowel obstruction. In addition, stories from patients are featured to illustrate how adhesions (or suspected adhesions) affect their daily lives and how they cope with a sometimes-insurmountable problem.

A key lesson and source of comfort for patients with this problem is that they are not alone and the importance of mutual support among patients cannot be underestimated.
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.

The problem with adhesiolysis is that ADHESIONS almost always reform, and so the procedure is sometimes self-defeating. This is one of the main reasons why surgeons are reluctant to perform adhesiolysis, particularly in severe cases. In addition, the presence of adhesions makes surgery more hazardous, because of the risk of injury to the bowel, bladder, blood vessels and ureters. As we have seen, some patients may have periods of relief from and/or bowel obstruction for several months, only to have the problem recur

Adhesions are a common occurrence after pelvic or abdominal surgery. Adhesions are also common in women who suffer from pelvic inflammatory disease (PID), endometriosis, or sexually transmitted diseases.

The likelihood of adhesion formation and the seriousness of their consequences vary based on multiple factors (e.g., type of surgery, number of previous surgeries, surgical technique, and the predisposition of individual patients). However, studies have consistently shown that a majority of women who have gynecologic surgery will experience some degree of adhesion formation.
All of the abdominal and pelvic organs except the ovaries are at least partially wrapped in a clear membrane called the peritoneum. When this membrane is traumatized during surgery, the site of the trauma becomes inflamed. Inflammation is normal and in fact is part of the healing process, but it also contributes to adhesion formation by encouraging the development of fibrous bands of scar tissue.

Normally, these fibrin bands eventually dissolve through a biochemical process called “fibrinolysis,” and the traumatized site continues to heal. But sometimes the nature of the surgery results in decreased blood flow to these areas (ischemia). This ischemic condition can suppress the fibrinolysis. If the fibrin bands do not dissolve, they may develop into adhesions that connect pelvic organs or tissues that normally are separate.

Pelvic Pain: Adhesions are commonly associated with pelvic pain. Adhesions cause pelvic pain because they bind normally separate organs and tissues together - essentially “tying them down” - so that the stretching and pulling of everyday movements can irritate the nerves involved. Adhesions can also cause pain during intercourse.

Bowel Obstruction: Adhesion formation involving the bowel is particularly common following a hysterectomy. While these adhesions don’t normally result in any problems, there is one serious problem that can develop. It is called intestinal or bowel obstruction, and it can occur a few days or many years after surgery. Symptoms of bowel obstruction may include pain, nausea, and vomiting.

Ovarian Surgery: The ovaries are one of the most common sites where adhesions form. Adhesion formation after ovarian surgery can lead to pelvic pain and infertility.

Surgical Treatment of Endometriosis: Endometriosis is a condition in which patches of cells similar to the ones in the uterine lining become implanted outside the uterus – usually on the ovaries, bladder or fallopian tubes. This condition can be associated with severe inflammation and dense adhesions, and can potentially contribute to infertility. Endometriosis itself can lead to adhesions, and when those adhesions are surgically removed, new adhesions can re-form.

Myomectomy: Myomectomy is surgery to remove fibroid tumors from the uterus. Adhesions may form at the incision line on the uterus. These adhesions can also involve the ovaries and fallopian tubes, potentially causing infertility and pelvic pain.

Reconstructive Tubal Surgery: The repair of blocked fallopian tubes is a delicate procedure that often includes the removal of existing adhesions. Unfortunately, the surgery itself can also lead to the formation of new adhesions and associated complications such as pelvic pain and infertility.

Hysterectomy: Hysterectomy is a procedure in which the uterus is removed. Removal of one or both ovaries (oophorectomy) is sometimes performed at the same time. Adhesions that form after this procedure may attach to the small intestine, causing pelvic pain, constipation, and sometimes a more serious complication –bowel obstruction (blockage of the intestine). Bowel obstruction may occur shortly after surgery or may may occur years after surgery.

Cesarean Section: These adhesions typically do not cause pain. They can sometimes make subsequent cesarean sections more difficult, however, because the physician must cut through these adhesions to reach the uterus and the baby. This can increase the length of the procedure and the amount of time the mother and baby are under anesthesia. There is also a risk of damaging surrounding organs such as the bladder.

To determine whether adhesions are the cause of pelvic pain or fertility problems, your doctor may perform a laparoscopy, an exploratory procedure using a laparoscope (a narrow lighted telescope inserted through a small incision in the “belly button”) to inspect the abdominal cavity and pelvic structures.

The only way to treat adhesions is to remove or separate them surgically. This procedure is called adhesiolysis. Studies have shown that patients with pelvic pain and severe adhesions can experience a marked reduction in symptoms after adhesiolysis.

However, even following adhesiolysis, adhesions reform more than 70 percent of the time. That’s why adhesion prevention is so important.
Meticulous surgical technique – Careful surgical technique can help minimize trauma, minimize the interference with the blood supply, prevent the introduction of foreign bodies, minimize bleeding, lessen the incidence of raw surfaces and decrease the incidence of infection - all of which help reduce adhesion formation.
Barriers – Fabric or liquid barriers create a physical separation between raw tissue surfaces while they heal. Thin tissue-like fabric barriers may be used to try to reduce adhesion formation at specific sites, while liquid solution barriers can help prevent adhesions over broad areas of the abdominal and pelvic region

The only way to treat adhesions is to remove or separate them surgically. This procedure is called adhesiolysis. Studies have shown that patients with pelvic pain and severe adhesions can experience a marked reduction in symptoms after adhesiolysis. However, even following adhesiolysis, adhesions reform more than 70 percent of the time. That’s why adhesion prevention is so important.

Meticulous surgical technique – Careful surgical technique can help minimize trauma, minimize the interference with the blood supply, prevent the introduction of foreign bodies, minimize bleeding, lessen the incidence of raw surfaces and decrease the incidence of infection - all of which help reduce adhesion formation.

Although adhesions often form after gynecologic surgery, they are not inevitable. And, even if adhesions do form, they usually don’t cause pain or other problems.

Although there is no way to eliminate the risk of adhesions completely, there are steps your surgeon can take to reduce the likelihood of adhesion formation. The most effective methods of adhesion prevention involve meticulous surgical technique and the use of a physical barrier to separate tissue surfaces while they heal.

Surgeons have developed minimally invasive techniques such as the laparoscopy, that are designed to minimize trauma, blood loss, infection, and the introduction of foreign bodies, all of which can lead to inflammation and adhesion formation. Good surgical technique involves minimizing tissue handling, using delicate instruments, and keeping the tissues moist when they are exposed to the air.

While good surgical technique is important, it is often not sufficient to prevent adhesions. There are also other preventive steps that can be taken:

Your surgeon may use a lightweight fabric barrier, such as GYNECARE INTERCEED Absorbable Adhesion Barrier, to enhance good surgical technique. This barrier, placed at the site of the surgery, is intended to protect raw tissue surfaces as they heal. Fabric barriers have been shown to be one of the most effective methods of adhesion prevention reduction and prevention.

Can Adhesions be prevented:

Barriers – Fabric or liquid barriers create a physical separation between raw tissue surfaces while they heal. Thin tissue-like fabric barriers may be used to try to reduce adhesion formation at specific sites, while liquid solution barriers can help prevent adhesions over broad areas of the abdominal and pelvic region.
GYNECARE INTERCEED Barrier is a lightweight, tissue-like “fabric” that can be placed at the surgical site. The fabric protects and separates the surfaces where adhesions are likely to form. The fabric slowly dissolves as the surgical incision heals. Studies demonstrate that GYNECARE INTERCEED Barrier significantly enhances good surgical technique in reducing adhesion formation.

GYNECARE INTERGEL Solution is a liquid that can be poured into the pelvis after surgery to separate and protect organs and tissues as they heal. The solution is easy for the surgeon to use and can be applied directly to the surgical site. Even more important, GYNECARE INTERGEL Solution covers a broad area and provides protection against adhesions.[email protected]

2nd look Lap:

"If the adhesions are extensive, and the patient has undergone previous adhesion surgery that failed, I have taken an unorthodox approach to such individuals. Because adhesions begin to form almost immediately, along with the healing process involving the raw anterior abdominal wall, I have in special situations recommended a repeat laparoscopy in one week. At this point, the "new" adhesions are flimsy, soft, do not contain a blood supply, and can be swept away with minimal tissue injury, compared to a conventional adhesiolysis (freeing the adhesions surgically) of old adhesions that are dense, very adherent, and bloody. This is performed in an outpatient setting, and usually takes but a few minutes, compared to the time involved dealing with extensive, dense old adhesions."

Adhesion Prevention Home Page:

Proven Adhesion Prevention:

Welcome to SPRAYGEL :: Adhesion Barrier:

A Meta-analysis of Interceed Barrier Safety/Efficacy:


Contemporary Adhesion Prevention:

GYNECARE INTERGEL® Adhesion Prevention Solution:

Seprafilm surgical intestinal adhesion prevention:

CO2 laser, Harmonic Scalpel, Electrosurgery, LAP Surgery:ADHESIOLYSIS:

ANTI-Adhesion treatment for Gynecologic surgery:

Gynecare Intergel:

Laparoscopic Lysis of Adhesions:

I hope this was of some help Good Luck ((Susie)), I hope your are able to find some anwers & relief to your pain soon Pls let us know how your appt goes...
Unread 03-19-2003, 05:25 PM

I will have to print this thread for some reading... Thanks for the info... I have been reading alot, and since my post op report said there was adhesive disease all over the wall where my ovary was, I am convinced that is what this is.... Thank you for the support... I have spoke at lenght with my dh, and he is behind me 100%! He just wants his wife back.

Jamesa!!!!! It is so good to hear from you... Thank you for the prayers. I am sorry about your pains too.... Yuck!!!! I just want to be pain free again!

Your posts mean alot to me... I review them, and they seem to get me through the day.

Unread 03-20-2003, 04:56 AM
Is it all in my head???

I'm soo glad it was of some help Here is another Article on a study that was done on Adhesions...very interesting:
Sulaiman H, Gabella G, Davis MSc C, Mutsaers SE, Boulos P, Laurent GJ, Herrick SE.Presence and distribution of sensory nerve fibers in human Peritoneal adhesions. Ann Surge 2001 Aug; 234(2):256-61

Department of Medicine, University College London, The Rayne Institute, London, UK.

OBJECTIVE: To assess the distribution and type of nerve fibers present in human peritoneal adhesions and to relate data on location and size of nerves with estimated age and with clinical parameters such as reports of chronic pelvic pain.

SUMMARY BACKGROUND DATA: Peritoneal adhesions are implicated in the cause of chronic abdominopelvic pain, and many patients are relieved of their symptoms after adhesiolysis. Adhesions are thought to cause pain indirectly by restricting organ motion, thus stretching and pulling smooth muscle of adjacent viscera or the abdominal wall. However, in mapping studies using microlaparoscopic techniques, 80% of patients with pelvic adhesions reported tenderness when these structures were probed, an observation suggesting that adhesions themselves are capable of generating pain stimuli.

METHODS: Human peritoneal adhesions were collected from 25 patients undergoing laparotomy, 20 of whom reported chronic pelvic pain. Tissue samples were prepared for histologic, immunohistochemical, and ultrastructural analysis. Nerve fibers were characterized using antibodies against several neuronal markers, including those expressed by sensory nerve fibers. In addition, the distribution of nerve fibers, their orientation, and their association with blood vessels were investigated by acetylcholinesterase histo-chemistry and dual immunolocalization.

RESULTS: Nerve fibers, identified histologically, ultrastructurally, and immunohistochemically, were present in all the peritoneal adhesions examined. The location of the adhesion, its size, and its estimated age did not influence the type of nerve fibers found. Further, fibers expressing the sensory neuronal markers calcitonin gene-related protein and substance P were present in all adhesions irrespective of reports of chronic abdominopelvic pain. The nerves comprised both myelinated and nonmyelinated axons and were often, but not invariably, associated with blood vessels.

CONCLUSIONS: This study provides the first direct evidence for the presence of sensory nerve fibers in human peritoneal adhesions, suggesting that these structures may be capable of conducting pain after appropriate stimulation.

When I read this I thot FINALLY Something that proves the Adhesions themselves are painful! I have a copy of this in my Medical files as well..
Good Luck

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