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Been awhile, in pain again :-( Been awhile, in pain again :-(

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Unread 05-06-2003, 07:57 AM
Been awhile, in pain again :-(

First off, I apologize for this being so long :-(

It has been waaayyyyyyy too long since I visited my sisters, or posted. I am a horrible sister.........seems the only time I visit is if I have a problem, or if I only have a few minutes to spare. You were all there for me BIG TIME when I had my hyst, and I should be around more for "new" people to these boards. I'll try better, I promise :-)

Any-who, I'm having a HUGE problem. I had my TAH / BSO on 2-6-02, and about 8 months ago, started having some pretty severe pain in my left lower abdomen. I've scared my husband a few times, because this pain catches me off guard and drops me to my knees. I went to see my gyn that did the hyst, and she felt that it was bowel related, seeing that only time it flares up is right before a BM, or when I have to piddle really bad. I went to see a surgeon, and she did a colonoscopy, which was negative. The surgeon has now passed me onto another surgeon (have I mentioned that I DESPISE doctors????)......because she feels that the endo may be back.

Ok, I totally lost my cookies when she said that. I am on Vivelle .1 patch, but after everything I went through.......7 years of agony, then the hear that the evil "E" could be back put me over the edge. I told her that I want a lap immediately, because if the endo is back, I want it the heck out of me. She said that she doesn't think that's the route to go.....she referred me to this other surgeon, who is a "pain management specialist". Now, am I totally irrational at this point, or does that seem the route to go to you gals?

Sorry so long, I am just SOOOOOOOO sick of this body. I am 32 years old, and I want my life back. I thought this crap was over when I had the hyst.........can ANYONE give me some advice?

Missed you gals...........I'll try to be around more often :-)
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Unread 05-06-2003, 08:57 AM
Been awhile, in pain again :-(

Oh, Tami....well, me too with the side pain (although not quite so severe, yet). Some of these left side pains seem to be related to activity in the bowel. Like I told my doc, I am extremely regular person as far as BMs go, but if I do get a delay (as in hours) I hurt until I can go. I had a colonscopy a couple of years ago and was told my colon was fine. I have ruled out "bowel" problems and my bladder is now functioning well, too.

So, I am guessing either adhesions on the bowel or endo. I just started on continuous BCPs and we will see if that helps. I am having other symptoms as well ... some cyclical and some not. I go back to my doc in two months to decide where we go from here (stay with continuous BCPs, switch to lupron or surgery).

I am starting to think I will never be pain free. Right now, I am just trying to make sure the cure is not worse than the problem. I still have my ovaries and the more I read, the more I think I will try to keep them.

Hang in there.
Unread 05-06-2003, 09:46 AM

I had my hyst last year as well... Two weeks ago I had a lap, for the very type of pains you describe.... The gyn at first tried to tell me it was bowel related and pass me on... I said no, cant be, I feel regular... Because I already was to my primary, the gyn reluctantly agreed and did a lap, and low and behold..... I HAD ADHESIONS!!!! My bowel was adhered to the abdominal wall... The adhesions were cut away, and wouldnt you know I am now pain free. I would be persistant... I was and it paid off. You are your own patient advocate... My gyn was very good after that, because I was right!!!!! The only way you can see adhesions is with a lap... Persue. What do you have to loose... You know your body, and the risks... Good Luck...
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Unread 05-06-2003, 10:20 AM
Been awhile, in pain again :-(

I'm so sorry your having to go thru all this... AGAIN Pls don't feel bad for not visiting until you have problems..we all want to get back to a normal life post-Hyst so no need for a *Hyst Support forum*
Unfortunately, you will find several ((Sisters)) here suffering from recurring Endo..the treatment for one may not be the right one for another
As you know, we are all soo very different in how our bodies react/respond to diseases or treatments. There are also several ((Sisters)) here seeing Pain Mgmt Drs w/ wonderful success My own personal opinion would be to at least consult w/ the Pain Dr. He/She can help relieve the pain while you search out options for treating your Endo. My Pain Dr continues to search for problems & treatments to help alleviate my Chronic Pelvic & Abdominal pain. I started seeing mine in July 2000. I had seen several Specialists, General Surgeons ect & all said NO more surgery because of the risks of more scar tissue & nerve damage. It was like *accepting* a life of pain but after I went it was like "why didn't I do this sooner"
Here is some excellent info on Endo, treatments as well as Pain Mgmt:

It is known that estrogen causes endometriosis to grow. Endometriosis is extremely rare before a young woman begins to produce estrogen and starts to have periods and the disease usually disappears after menopause, when estrogen production stops. Therefore, one goal of treatment with medication is to lower, or stop, the production of estrogen. Reducing the levels of estrogen "starves" the endometriosis and causes it to shrink and sometimes even disappear. Two classes of drugs have been developed which lower the amount of estrogen in a woman's body - Danocrine and GnRH agonist. Progesterone can also be used to treat endometriosis._
Laparoscopic surgery requires special training, expertise, and experience on the part of the surgeon. Conservative surgery may provide a cure, but it may also provide only temporary relief of symptoms. A woman may elect to have conservative surgery in order to complete her family, and then, at a later time, she may elect to undergoing radical surgery. And, some women may require more than one conservative surgical procedure before they need to have, or are willing to consider, a more extensive operation. Yet, for some women, multiple conservative operations may provide relief of symptoms._
Treatment is aimed at reducing the symptoms of endometriosis, usually either pain or infertility. Treatment is divided into three paths - observation, medication, or surgery.


Women who have minimal or mild endometriosis and do not have pain may not require any treatment other than careful follow-up. In practice, however, if the diagnosis of endometriosis is made during laparoscopy, most gynecologists will burn or cut away these cells. However, a few studies have demonstrated that this treatment of mild endometriosis does not enhance fertility. For women with mild endometriosis, fertility rates are good even if no treatment is performed._

Hysterectomy and ovariectomy(BSO) are not always curative of the symptoms of endometriosis, and because that surgery does not remove all of the endometriosis implants in the pelvis. Perhaps more was done than you are aware of in an attempt to remove the implants, or perhaps they have grown back from the microscopic disease that couldn't be seen by your surgeon. Or perhaps other pain syndromes, such as interstitial cystitis, or hyperactive bowel syndrome are the cause of the pain. Another variable is body weight, because a heavy person makes more estrogen than does a thin person, and perhaps this factor, if present, is adding to the estrogen-induced symptoms. The other hormone of importance is progesterone which obliterates endometriosis. An alternative to stopping the estrogen would have been to continue it along with norethindrone, a synthetic progestin, in a patch product called Combipatch by Rhone-Ponolac-Rhorer. Or this could have been done orally with Searle's Lo-estrin 1/20, taken every day. Another approach would be to administer Depo-Provera by IM injection monthly, or Provera orally at 30mg daily, with or without estrogen. Even Danazol, 400mg daily would probably have reduced the symptoms. All of these medical treatments take 8-12 weeks before the benefit can be evaluated-it's a slow process, killing the endometriosis. So be courageous, and keep asking your physician for help, or for a referral to an endometriosis specialist.
LeRoy Heinrichs, MD,09,99.html
Is My Endometriosis_coming back?
After endometriosis surgery, a woman wants to believe she is better, but is afraid to hope too strongly for fear of being disappointed yet again.When such a woman has pain or any other symptom resembling the symptoms she had before surgery, she might draw (or be given) an erroneous conclusion that, "the endo is back".
This article tries to explain what some of these symptoms might mean, when they are worrisome, and what you can do about them._

General Information:
Each case of endometriosis is unique, because of the locations of the implants and the depths to which the tissue was invaded. Therefore, it is a bad idea to try to compare your recovery to anyone else’s, or even to yourself at a previous operation.
Even if the surgeries seem very similar, recovery varies due to a number of host (that’s you) factors including the following:
  • immune system status
    nutritional status
    percentage body fat
    blood clotting factors
    differences in anatomy
    smoking status
    chronic lung disease, or
    inadequate oxygen delivery to the tissue
    ambulatory activity
    other disease processes
    life stresses and pressures
    compliance with post-op directions
    number of prior surgeries
    type of anesthesia
    co-dependency factors (environmental, social, and personal factors that can cause certain responses to pain and stress)
The first approach about any concern: Do the symptoms suggest a need for immediate attention to evaluate a new problem or a surgical complication? Consult the post-operative instructions you were given to check your doctor’s guidelines about what is normal and what is not.

Adhesion Formation:

Adhesions are your body’s natural defense mechanism for dealing with intra-abdominal injury. The adhesions form as your body tries to wall off the injured area.This is basically a very good process. However, it concerns us when it affects the function of the ovaries or tubes and interferes with fertility. It also becomes a problem when it causes active organs (such as the bladder, uterus, tubes, ovaries, and/or intestine) to become bound together. This can cause pain because tissue that was designed to float freely within the pelvic is now stuck together.Adhesions usually form in the immediate post-op period. We use every available technique to protect the active organs listed above from becoming involved with adhesions. Still, some adhesions may form. We certainly expect them more often in Stage III-IV patients due to the more extensive surgery needed to totally excise all their disease.Most of the time, adhesions can exist harmlessly in the abdomen without creating painful problems. However, the potential for pain or infertility is certainly increased in the endometriosis patient.Interestingly, we have observed in some women the recurrence of symptoms attributed to adhesions in the one to five year period post op. I believe that once adhesions have formed in the immediate post-op period, they will not continue to form unless there is a new insult to the tissues such as injury, infection, or more surgery. Later (1-5 years), some women report symptoms related to adhesions. The adhesions already present may undergo a very slow process of coalescing or shrinking. If this process begins to limit the mobility of organs that need to change size and/or position, painful symptoms can result.

Painful Bowel Movements:

Pain with a bowel movement is another scary event after surgery. There may be several possible causes.Patients who have had a bowel resection, or excision of endo from the bowel, cul-de-sac, or recto-vaginal septum are likely to experience this due to the passage of gas, liquid and solids through the injured and swollen area in the wall of the intestine.Additionally, if the bowel stays relaxed for a period of time after the surgery (especially if you’ve done a bowel prep), the first bowel movement may be difficult. You can use a glycerin suppository for help, but only if you did not have a bowel resection.When painful bowel movements occur substantially later, we need to consider other factors, including constipation, use of pain medication, adhesion formation, etc.If pain with bowel movements is associated with a general increase in abdominal pain and/or a fever over 100.
So, it is time to call your physician.

"Traditional" Medicine:
Some women struggle when what they learn about endometriosis from sources like the Center for Endometriosis Care conflicts with what their doctors tell them.Some of the information that we distribute is contrary to the traditional approach to endometriosis. We use the experience we have gained to add to the traditional understanding of endo, but updating that approach is a gradual, evolving process. We have seen great changes, for example, in the ability to recognize early forms of endo at surgery by general gynecologists. However, we still find that the majority of practitioners are not aware of the evidence that would change their prescribing habits, surgical approaches, and referral patterns.
Ovaries and Adhesions:

Adhesions are the method the body uses to isolate injury, infection, and certain types of irritants to the peritoneal surfaces, such as blood or cancer cells.The ovary may be the source of the problem, or it may be an innocent bystander. Pelvic infection may come from the tubes and involve the ovaries, or be secondary to a different type of pelvic surgery, such as for a_ tubal pregnancy. The ovary itself can spill contents that create adhesions, such as blood, fat (from a dermoid), or chocolate from an endometrioma.If an ovary is stuck to another organ, we can often tell the source of the problem, especially with active endometriosis. Certain patterns and types of adhesions also suggest certain causes. Pelvic Inflammatory Disease (PID) is almost always bilateral and generalized, as opposed to unilateral and focal. Sometimes we can match a patient's known history of infection or previous surgeries with her adhesions. This can help eliminate some possible causes for the scarring.

Endometriosis Conquering The Silent Invader:

Recurring Endo at the Center For Endometriosis Care:

Endometriosis-Dr. Stanley West:

Endometriosis Treatment Program @ St. Charles Medical Center-Bend, OR-Dr. David Redwine:

Hysterectomy & Endometriosis Questionnaire:

Post-Op Ovarian Suppression:

Incisional Endometriosis:

Endometriosis Research Center:

Radical Endometriosis Surgery:

November 14, 2002
2002 NOV 14 - ( & -- A majority of women who suffer from chronic pelvic pain have been told that their pain is "normal" or even exaggerated despite their own perception of it as severe and debilitating.

Ironically, these comments are coming from the people they rely on most for support - their physicians, families and friends - according to a survey conducted by the Endometriosis Association and released at the 58th Annual Meeting of the American Society for Reproductive Medicine in Seattle.

The survey found that 40% of women who suffer from chronic pelvic pain due to endometriosis or the formation of postsurgical scar tissue have been told they exaggerate their pain. More than half (52%) were told this by their ob/gyn and 43% by a friend or family member. Nearly 60% of these women have been told that their pain is normal. Of these, 56% were told this by their ob/gyn and 29% by family or friends.

"The results of this survey are concerning given the impact pelvic pain can have on a woman's life," said Mary Lou Ballweg, president and executive director of the Endometriosis Association, who announced the data. "On a regular basis, we see women completely alter their lives because of the debilitating effects of pelvic pain. The frustrating part is that it often takes years for women to receive a diagnosis, and by then, many are unable to work or fully participate in normal activities."

In fact, 43% of women surveyed describe their pain as constant. More than half describe the intensity of pain as severe to unbearable (26% say it's severe, 18% say very severe, and 9% say unbearable). At this level of pain, it's not surprising that more than 80% say they have been unable to work at times due to pelvic pain, and 45% say they have been debilitated for 2-3 days or longer each month.

"Chronic pelvic pain accounts for 12% of hysterectomies and 40% of laparoscopic surgeries. The total costs of treating chronic pelvic pain are more than $2 billion each year," said Dr. Charles Miller, reproductive endocrinologist, gynecological surgeon and medical director of Specialists in Reproductive Health in Arlington Heights and Naperville, Illinois. "As I've seen with many patients and with this survey, chronic pelvic pain also exacts a significant emotional toll, which makes it even more important that women speak to a doctor at the first signs of pelvic pain."

The survey of 968 women ages 15 through 59 with endometriosis and/or postsurgical scar tissue was designed to uncover specific information about women's experiences with chronic pelvic pain. The survey, conducted by The Endometriosis Association, was cosponsored through a restricted educational grant by Gynecare, the women's health division of Ethicon, a Johnson & Johnson company, and Purdue Pharma L.P.

Two of the leading causes of chronic pelvic pain are endometriosis and the formation of post surgical scar tissue, also called adhesions. Of the women surveyed, 89% had endometriosis, and nearly 40% had been diagnosed with adhesions.

Endometriosis is an immune and hormonal disease that affects 5 million women and girls in the U.S. It occurs when tissue similar to the lining of the uterus (called the endometrium) is found outside the uterus, usually in the abdomen, on the ovaries, or on fallopian tubes.

Postsurgical adhesions are abnormal bands of scar tissue that form inside the pelvis after gynecologic surgery. Endometriosis can also cause adhesions.

As many as 90% of the 3 million women who undergo gynecological surgery each year to treat common female health problems such as ovarian cysts, fibroids and endometriosis, will develop adhesions.

Ironically, women who undergo pelvic surgery to correct endometriosis or to remove adhesions (a procedure called adhesiolysis) are at risk for developing pelvic pain from new formations of pelvic adhesions.

However, new treatments are available to help stop the recurring cycle of pelvic pain. A variety of treatments can help treat pain due to endometriosis, and doctors now have tools to help reduce the risk of adhesion development after surgery to treat endometriosis or remove adhesions. Women should proactively talk with their physicians about chronic pelvic pain, its underlying causes and how it can be treated, or even prevented, in some cases.
Conscious Pain Mapping:

What You Don’t Know Can Hurt You: Knowledge Is Power In A Doctor/Patient Relationship:

Disorders More Common in Women:

Endometriosis Angels:

eMedicine - Endometriosis : Article by Manuel Hernandez, MD

Jenny's Endo page:

Endo Association family program:

Theories of origin:

New and Emerging Treatments for Endo:

Danazol Vaginal:
This appears to be a new and very promising method of suppressing pelvic endometriosis. The treatment plan I use is based on data from studies by a Japanese research group lead by Dr Masao Igarashi.

Danazol was one of the first drugs used to suppress endometriosis. Although it provided good suppression, its side effects: weight gain, acne, hot flushes, increased hair growth and decrease in breast size caused us to abandon it in favor of GnRH agonists. Vaginal Danazol suppresses endometriosis without causing any of the above-mentioned side effects. It gets absorbed directly to the pelvic tissues through the wall of the vagina. The only side effects experienced by my patients using Vaginal Danazol include some vaginal irritation and occasional constipation and those effects are easily corrected. I use Vaginal Danazol after removal of endometriomas and laparoscopic resection of fibrotic endometriosis to suppress any residual and microscopic endometriosis. I am also evaluating the use of vaginal Danazol prior to operative laparoscopy, especially in women with endometriosis involving their bowels. The hope is that pretreatment will decrease size of the fibrotic lesions, making less extensive surgery possible.

Progestagen Releasing Intrauterine Device:

European centers are evaluating intrauterine device containing a slowly released progesterone like, drug. Patients using these devices seemed to have less painful periods and less menstrual flow.
Antiprogesterone Drugs:

GnRH Antagonists:

These drugs are used in Europe to treat endometriosis. They are comparable in their effectiveness to GnRH Agonists.

Vessel Growth Factor Agents:

Agents that affect the growth of new vessels in our body are being tested in cancer therapy. I am not presently aware of the results of any studies in US in patients suffering from endometriosis.
Endometriosis of the pelvic sidewall:
Description:Your pelvic sidewall is covered by a peritoneal layer and faces the front and sides of your ovaries. It contains large blood vessels, nerves and your ureter.This is one of the most common locations for endometrial implants and adhesions.

Symptoms: Pain (burning and aching) in the right or left lower quadrant of your abdomen and on the right or left side of your pelvis is a common symptom.The pain usually worsens before and during menstruation. The pain may also increase with walking or physical activity, especially if there are lateral pelvic wall adhesions between the enlarged endometriotic ovary and peritoneum of your pelvic sidewall.
Treatment: Reestablishment of your normal pelvic anatomy and removal of all endometrial implants is the goal of the treatment.If adhesions are present between your ovary and your pelvic sidewall, the adhesions will need to be divided before your entire pelvic sidewall can be evaluated for the presence and extent ofendometriosis.Your physician may use one of many methods to divide the adhesions between your ovary and pelvic sidewall, including dissection with scissors, CO2 laser dissection and harmonic scalpel dissection.

Endometriosis of the posterior cul-de-sac

Description:The posterior cul-de-sacis the space behind your uterus. It is surrounded by your uterus in the front, pelvic sidewall and ovaries on the side, and your sigmoid colon in the back. The floor of your cul-de-sac contains your uterosacral ligaments, your rectum and the upper portion of your vagina.The posterior cul-de-sac is one of the most common locations of endometriosis in the pelvis.Most of the time, the implants are quite superficial, but in a number of women they will invade deeper into the tissues. They may form nodules within your uterosacral ligaments, they may cause attachment of your sigmoid colon and rectum onto the posterior wall of your uterus. This causes the most extreme form of the involvement, cul-de-sac obliteration.

Symptoms: Constant pelvic pain/ache is the most common symptom.The pain is usually more severe during menstruation and is usually located in your lower abdomen and lower back. Pain may extend to your upper thighs and your rectum and there may be deep pain in your vagina during sexual intercourse, many times preventing normal sexual relations.There also may be pain with bowel movements.

Endometriosis of the bowel:
Description:Your sigmoid colon (lower portion of the large bowel) and your rectum are pelvic organs which are anatomically associated with areas that are common sites of endometriosis.In some patients, especially those with severe endometriosis, there is extensive involvement of the bowel wall.Most commonly, the endometriotic bowel implants will be restricted to the surface of you bowel and adhesions around your bowel. In more severe cases, the implants may involve the entire thickness of your bowel wall.Your appendix is part of your bowel and on occasion it will become a pelvic organ. The appendix is involved in approximately one percent of patients with endometriosis.

Themost common symptom associated with endometriosis of the bowel is cramping and diarrhea during menstruation (many patients will be incorrectly diagnosed as having irritable bowel syndrome).Minimal and superficial endometriosis of your bowel does not have any specific symptoms different from those of the endometriosis of the cul-de-sac.But severe endometriosis infiltrating deep into your bowel wall is usually associated with chronic pelvic and back pain and painful bowel movements, generally worse before and during menstruation. In endometriosis that has penetrated your bowel wall completely, you may note rectal bleeding or some blood covering the stool during menstruation. In such case, you will likely suffer from extreme pain during bowel movement.

Endometriosis in remote locations:
Description:Endometriosis can implant itself in any number of locations outside of your pelvis.It might involve your omentum(fatty apron lying loosely in the abdominal cavity), small bowel, umbilicus, surgical scars, diaphragm, lungs, kidneys and many other organs and locations.The symptoms will usually be specific to the site involved and generally will be worse during menstruation.

Causes of Persistence and Growth of Endometriosis:

There are two basic mysteries surrounding the persistence and growth of endometriosis:
Why do endometrial implants survive the attack by the immune system, which is typically launched against any foreign presence in the body?
How do these endometrial travelers develop new blood vessels and implant themselves in other locations?

Impaired Immune System:
Some research is focused on possible immune disorders in women with endometriosis. One theory proposes that women with endometriosis have fewer natural killer (NK) cells, which are factors in the immune system important for surveillance. In their absence, the immune system is weakened and may allow endometrial tissue to invade and take root.

Growth Factors and Angiogenesis. Macrophages also produce growth factors, which are of particular interest because they play important roles in angiogenesis, a natural process by which new blood vessels form.

Vascular endothelial growth factor (VEGF) is secreted by endometrial cells, and so is of special interest. Under normal conditions, VEGF is secreted within the uterus. When oxygen levels drop following menstruation and blood loss, VEGF levels rise and promote the growth of new blood vessels. This process is important for repairing the uterus following menstruation.

When endometrial cells land outside the uterus, however, investigators theorize that this same process occurs with unfortunate results. The cells secrete VEGF when they are deprived of blood and oxygen, which in turn stimulates blood vessel growth. In this case, however, blood vessel growth serves to promote implantation outside the womb.

Other growth factors involved in angiogenesis that may play a role in endometriosis include transforming growth factors (such as TGF-beta), platelet-derived endothelial growth factor (PD-ECGF), and tumor necrosis growth factors.

Inflammatory Response. The damage, infertility, and pain produced by endometriosis may be due to an over-active response by the immune system to the early presence of endometrial implants. The body, perceiving the implants as hostile launches an attack. Of particular note, levels of large white blood cells called macrophages are elevated in endometriosis. Macrophages produce very potent factors, which include cytokines (particularly those known as interleukins) and prostaglandins. Such factors are known to produce inflammation and damage in tissues and cells.


Pelvic Pain (Dysmenorrhea)
Many women experience pain during intercourse.
Occasionally, however, pain may also occur in other regions. Implants can also occur in the bladder (although rare) and cause pain and even bleeding during urination. Also rarely, implants form in the intestine and cause painful bowel movements or diarrhea. Large cysts can rupture and cause very severe pain at any time in various locations.

Severity of Pain:
The severity of the pain also varies widely and does not appear to be related to the extent of the endometriosis itself. In other words, a woman can have very small or few implants and have severe pain, while those with extensive endometriosis may have very few signs of the disorder except for infertility.

Other Symptoms In addition to pain, patients may experience additional symptoms, which include the following:
Heavy menstrual bleeding
Depression and malaise (feeling generally low)
Sleep problems

Once careful instruction is given for all the risks and benefits of the different surgical options, the physician must then respect any decision a patient makes to retain as much of her reproductive system as she wants, even if she is past menopause. Both the patient and the physician should also be clear about the possibility of changing procedures once the operation has begun, depending on what the surgeon may observe. For example, the surgeon may find abnormalities that require more extensive surgery.

Much of the success of any procedure relies on the experience of the surgeon. A woman should always ask for a doctor's track record, or the number of times he or she has performed the procedure in question. The more, the better. Asking for complication rates may be helpful, but a patient should realize that an experienced surgeon may have a higher number of high-risk patients, and therefore, a higher complication rate than a less experienced surgeon with fewer serious cases.

Several medical management options are available for the treatment of Endometriosis. The treatment for Endometriosis and Adenomyosis are virtually identical. However, it must be noted that many women diagnosed with Adenomyosis do not respond to traditional treatment. These include:

NO TREATMENT, which can lead to more serious health problems.

Limited use of ANALGESICS and nonsteroidal anti-inflammatory drugs (NSAIDs).

ORAL CONTRACEPTIVES can be given cyclically (the patient has a monthly menses) or continuously (the patient has no menses during treatment).

PROGESTINS (Provera 10 mgm every day) or Depo-Provera injections will incompletely suppress ovarian function, but can be associated with breakthrough bleeding; they may be useful in a few women who cannot tolerate oral contraceptives.

GnRH AGONISTS are synthetic decapeptides. The GnRH agonists initially stimulate the pituitary gland to release follicle stimulating hormone (FSH) and luteinizing hormone (LH). Al a consequence, blood estrogen levels initially rise, then fall to menopausal levels within a few days. After 7 to 10 days, these drugs produce a menopausal state which is fully reversible. This produces amenorrhea (no menses), which permits regression of endometriosis and relief of symptoms. The GnRH agonists do not have any known direct effects on the ovary.

Leuprolide acetate (LUPRON DEPOT) is usually given as a single monthly 3.75 mgm intramuscular injection.

Nafarelin acetate (SYNAREL) 200 Fg nasal spray used twice a day, is a superactive, hydrophobic stimulatory analog of GnRH that is 200 times more potent than naturally occurring GnRH, and is delivered in a metered nasal spray pump.

Note that GnRH Agonists may be used for the Treatment of Adenomyosis, but recent studies have found that the GnRH Agonists do not provide adequate long term relief for the pain and bleeding associated with Adenomyosis.

SURGERY - In the infertile patient, laparoscopic therapy is almost always conservative, consisting of excision, laser vaporization, or electrosurgical desiccation of endometriosis.Every attempt should be made to conserve as much ovarian tissue as possible in these patients.

Patients who have completed childbearing often undergo more radical laparoscopic therapy, including hysterectomy and/or bilateral salpingo-oophorectomy (removal of the ovaries). Simple removal of the uterus and\or ovaries is not necessarily the appropriate operation, however. If the surgeon removes the uterus and ovaries, but leaves implants of endometriosis behind, the patient may continue to have pain very similar to that she experienced prior to the operation. Remember, symptoms may be as much a result of the implants of endometriosis as from the uterus or ovaries.

Adequate laparoscopic treatment of endometriosis requires a surgeon who is familiar with the pathophysiology of endometriosis and its various appearances. They must possess the skills to treat implants on or near vital structures in the pelvis, and have access to the proper laparoscopic equipment necessary to perform these procedures.
HRT and special situations: Endometriosis and post-hyst HRT:

It is now becoming accepted that a hysterectomy/oophorectomy does not “cure” endo, although it may remove some of it. The most realistic expectation of the surgery is that subsequent use of HRT may provide a more stable hormonal environment with less endo stimulation. Because estrogen stimulates endo growth (just as it stimulates proliferation of the uterine endometrium) and progesterone inhibits it, current post-hyst endo management theory calls for the addition of progesterone to estrogen HRT. This is to avoid the stimulation of endo proliferation and the risk of converting that endo to a cancerous state. Many endo specialists also call for a post-op period (varying from 6 weeks to 6 months to “as long as you can stand it”) without HRT, in order to encourage any remaining bits of endo not removed during surgery to shrink away. Some take that a step further and prescribe the use of progesterone alone to directly squelch that endo growth. This has the additional benefit of helping ease some of the transitional menopause symptoms experienced during the wait for estrogen.

Not all doctors espouse this theory, of course. Some surgeons are highly indignant at any suggestion that they might not have cleared all traces of endo; others freely admit that microscopic bits of endo are virtually guaranteed to remain and require other treatment. We're not going to argue with your doctor's take on the situation, other than to suggest that if your doctor insists that all endo is gone and you continue to experience post-op endo-like pains, you might want to research this part of the question further.

*Endo is a long, grim battle, and it's sadly not one that seems to be over after a hyst.

In addition to progesterone, you may want to look into other measures to help with your estrogen deficit. You will need to work very hard on maintaining your bone density and keep an eye on your overall cardiac measures such as cholesterol and blood lipids. Both of these profiles see their most rapid rate of change in the year after ovarian hormones decline. Many of the symptomatic relief measures may also be helpful. In particular, use of an SSRI or St. John's Wort may be required if depression and hot flashes become debilitating. It's important to bear in mind that some of the herbal estrogen-alternatives are fine to use and some can totally undermine the point of going without estrogen. As a rule, black cohosh is considered effective in relieving symptoms without having effects similar to estrogen. Red clover's picture is not as clear, and it is also not as clearly demonstrated to be effective. Soy, which is often used as an estrogen supplement or alternative, should be avoided in endo suppression just because it has some of the same capacity for endometrial stimulation as estrogen. Taking the adrenal precursors (DHEA, pregnenolone) is a little questionable as they can ultimately be converted to estrogen; testosterone supplementation during this period will probably also be hijacked for estrogen production, so may not be wise. Even caffeine, as noted at WebMD, stimulates elevations of circulating estrone, an estrogen, and may be implicated in the exacerbation of endo. Check all this with your doctor, of course—but remember the bottom line: if any of these do stimulate further endo, you are the one who suffers. And you know what that's like. Since it only has to go on for about 6 months, our feeling would be to be as conservative as possible rather than risk more endo. But you have to decide this for yourself.
recurring Endo-Q&A:

Surgical Procedures for Endo:

Endo Specialists & Resources:

Painful Signs of Endometriosis Should Be Taken Seriously:

Old Ovaries-still of value?

Myths vs. Facts about Hysterectomy:

Benefits vs. Side Effects of Hysterectomies:

hormone replacement after complete hysterectomy:

COLOR=coral]Chronic Pelvic Pain Diagnosis and Management:[/color]

The Endometriosis Association Houston Support Group:

Endometriosis Symptoms and Treatments:

Understanding & Managing Endometriosis:

Endometriosis Despite Hysterectomy:,09,99.html

What is the best way to determine what medications should be used for the management of breakthrough pain?

Whenever possible, the same medication given for continuous pain control should be used for breakthrough pain. This narrows the possibilities of different opioids causing different side effects. A common way to calculate the amount of medication to give for breakthrough pain is to add the total amount of oral opioid given in 24 hours to control the pain adequately and give 10-15% of that dose every 2-3 hours.

Would you briefly discuss some of the myths concerning pain management with opioids?

Opioid analgesic medications can be extremely effective and well tolerated treatments of moderate to severe acute and chronic pain. When used correctly, they can improve the patient's quality of life and functionality. Frequently held misconceptions regarding opioid use can interfere with the delivery of optimal patient care.

What about the myth that patients using opioids frequently become addicted to them?
The fact is when used to control acute or chronic pain, the incidence of addiction is about 1/3,000 (0.3%). The incidence of addiction is also low when opioids are used to treat chronic nonmalignant pain. The therapeutic goal should be to improve functionality. As a rule of thumb, the person taking opioids for pain relief becomes more functional while the addicted personality (seeking drugs for their recreational or euphoric effect) is less functional.
How do you respond to the myth that opioids should be "saved" for the last weeks or months of life?
he fact is that about one-half of patients with chronic pain syndromes not controlled by other means can have a beneficial response to opioids and improve their functionality and their life. Similarly, for patients with terminal diseases, opioids should be used as early as necessary to control moderate to severe pain. Patients can continue to use opioids for pain management for years or decades. When tolerance (the need to use more opioids to control the same painful stimulus) develops, analgesia can usually be maintained by gradually increasing the opioid dose.

And then there is the myth that a patient cannot work or do normal activities when taking opioids.

Well, again, the fact is that patients with severe pain have difficulty or find it impossible to perform normal activities. This includes maintaining normal relationships. By achieving adequate pain management, they can often resume normal activities within the confines of their underlying disease process as opposed to being limited by their pain. Cognitive and motor skills (including the operation of motor vehicles) have been shown to be similar for patients on steady doses of opioids for more than two weeks when compared to control groups with similar underlying disease processes but who are not taking opioids. In many states laws prohibit driving if the driver is impaired by any drug. Patients should be told not to drive whenever an opioid is started or the dose increased and to refrain from driving for at least a week or longer, until normal cognitive and motor skills are fully recovered. Individual state regulations should be reviewed regarding the operation of motor vehicles and the ingestion of many drugs including opioids.

Myths & Misinformation about Lupron:
Lupron a cure for Endometriosis?_ Believe that one, and I've got a bridge to sell you.
Let's first address the fact that not only are GnRHs like Lupron not a cure, but there is currently no definitive cure for Endometriosis._ Given the current research underway, there certainly may be one on the horizon, but the best we can hope to attain at this time is long-term remission...which, thankfully, is completely possible when working in partnership with an Endometriosis specialist.__ We owe a debt of gratitude to the men and women, lay persons and professionals alike, who do treat the disease seriously and who have dedicated their lives to understanding it better._ It is these people who will lead the way to early detection and definitive treatment for the Endometriosis daughters of the future.__
Unfortunately, however, the longer certain members of the medical establishment continue to prescribe stop-gap measures without addressing the significant need for a cure, the longer we will be without one. What can we do to help speed the process along?_ Get educated._ Get involved._ With awareness comes recognition of needs: the need for more funding for disease research, the need for better support of patients with Endometriosis, the need for more doctors to better understand the disease, the need for more effective treatments, and ultimately, the need for a cure._ Women with Endometriosis do not deserve to have to travel thousands of miles, often at their own expense, for effective treatment with an Endometriosis specialist because they are few and far between._ Women should not have to resort to ER visits on a monthly basis because they are crippled with unresolved pain._ Women should not be misled as to the efficacy of their treatment options and blamed for the subsequent - yet inevitable - return of symptoms at the treatment end._ Most of all, women with Endometriosis do not deserve to feel alone with their disease. Let's begin the education process by debunking some 100+ yr. old myths about Endometriosis which, unbelievably, are still circulating today._ The more we know, the more we can take charge of our own healthcare._ The more we take charge, the more empowered over Endometriosis we become.
Fallacy Number One:_ Endometriosis is a career woman's disease:
Most likely, these "career women" were the ones that sought medical care most often, and therefore obtained the most diagnoses._ We know now, of course, that Endometriosis knows no barriers whatsoever and is found in every socio-economic and ethnic class world-wide._ For more background information on Endometriosis, read "Endometriosis 101: the Basics."
Myth Number Two: Endometriosis only affects women in their reproductive years.
While certainly most_ prevalent in reproductive-aged women, especially those in their 20s and 30s, Endometriosis has been found in the autopsies of infants, in 7 year old girls, in women well into their 80s, in post-hysterectomy and menopausal women; and even in a few men who were treated with estrogen for certain cancers.
Sadly Mistaken Idea Number Three:
Pregnancy and/or hysterectomy will cure Endometriosis.
It is frightening to know that students just out of med school, when asked for treatment alternatives, responded by saying that pregnancy would cure the disease, as would a hysterectomy. Women all over the world are still being offered the same treatments that were initially given when the disease was first mentioned in 1870: "prescribed" pregnancies and hysterectomies._ Neither is a definitive cure.

Misleading Myth Number Four:_
Medications can cure Endometriosis.
There are many non-surgical alternatives to treating the disease, the most common of which are medical therapies like GnRH agonists, oral contraceptives and medroxyprogesterone acetate._ Some women are led to believe that such therapies will cure them - they won't._ They certainly have their purpose in Endometriosis treatment and can be very useful, even provide long term relief for some._ But there has never been any medical evidence to support the notion that they will cure the disease._ Women need to be fully informed about the drug they will be taking: what the possible side effects are, what the expected outcome might be, what the realistic expectations of the treatment are...all the pros and cons._ They should not be misled to believe that popping a pill or getting an injection will solve all their problems - Endometriosis tends to be a sleeping giant which awakes angrily at the end of the treatment. On a side note:
GnRHs are still, as of this writing, only FDA-approved for 6 months in a lifetime._ While there are trials going on and other research being done into long-term usage, re-treatment beyond a 6 month period is not recommended._ Request that your physician perform a bone density scan prior to undergoing GnRH therapy to establish a baseline, and another at the end of treatment to determine if there has been significant loss of trabecular bone density._ And always, always establish that you are not pregnant prior to beginning treatment and use caution throughout the treatment period._ Although difficult, it is not impossible - and is ill-advised - to become pregnant while undergoing GnRH therapy. Lupron, like all GnRHs, is a hormonal agent [GnRHs=gonadotrophin releasing hormones]._ It was initially used in the treatment of prostate cancer and has since extended into other areas, such as reproductive disorders and precocious puberty._ There seems to be a widespread misconception that "Lupron has chemotherapy in it."_
Chemotherapy is not a substance, it's a concept - it simply means "treatment of disease through chemical therapy." Should GnRHs be taken prior to surgery?_ That is a decision best left to the woman and her Endometriosis specialist._ Sometimes, GnRH therapy is needed to debulk the disease._ However, it can also shrink lesions enough to be missed by a lesser-trained surgeon.

Misinformed Notion Number Five:
Only higher stages of Endometriosis cause pain and infertility.
Stage of disease does not indicate pain or fertility status; it is simply a method by which the disease is scored._ While it is true that higher stages (3 and 4) are more likely to be involved in infertility, this is not always the strict case._ A woman with stage 1 disease may be debilitated and infertile, while a woman with stage 4 has no symptoms - and vice versa._ Staging has been defined by the American Society for Reproductive Medicine with criteria based on the location of the disease, amount, depth and size. These factors are all graded on a point system and classification is thus determined.
As of 1985, the stages are classified as 1 though 4; 1-minimal, 2-mild, 3-moderate and 4-severe. There are many other myths circulating today which continue to hinder the diagnosis and treatment of some women with Endometriosis; these are just a few of the more common ones._ In summary, the facts as supported by medical literature:_ any woman of any age can have Endometriosis, no matter how many children she may have had [or not had, as the case may be]._ Currently, the best bet for long term remission is the meticulous excision of disease and care by an Endometriosis specialist. Luckily, most patients know that these are just myths and will not stand for a physician who subscribes to them._ But what of the doctors who don't keep up on current research and the newly diagnosed patients who are not being properly informed?_ _
Get educated. Get involved._ Do your part to help shatter the myths surrounding this disease.
A pain primer: what do we know about pain?
We may experience pain as a prick, tingle, sting, burn, or ache. Receptors on the skin trigger a series of events, beginning with an electrical impulse that travels from the skin to the spinal cord. The spinal cord acts as a sort of relay center where the pain signal can be blocked, enhanced, or otherwise modified before it is relayed to the brain. One area of the spinal cord in particular, called the dorsal horn, is important in the reception of pain signals.The most common destination in the brain for pain signals is the thalamus and from there to the cortex, the headquarters for complex thoughts. The thalamus also serves as the brain's storage area for images of the body and plays a key role in relaying messages between the brain and various parts of the body. In people who undergo an amputation, the representation of the amputated limb is stored in the thalamus. Pain is a complicated process that involves an intricate interplay between a number of important chemicals found naturally in the brain and spinal cord. In general, these chemicals, called neurotransmitters, transmit nerve impulses from one cell to another.There are many different neurotransmitters in the human body; some play a role in human disease and, in the case of pain, act in various combinations to produce painful sensations in the body. Some chemicals govern mild pain sensations; others control intense or severe pain.The body's chemicals act in the transmission of pain messages by stimulating neurotransmitter receptors found on the surface of cells; each receptor has a corresponding neurotransmitter. Receptors function much like gates or ports and enable pain messages to pass through and on to neighboring cells. One brain chemical of special interest to neuroscientists is glutamate. During experiments, mice with blocked glutamate receptors show a reduction in their responses to pain. Other important receptors in pain transmission are opiate-like receptors. Morphine and other opioid drugs work by locking on to these opioid receptors, switching on pain-inhibiting pathways or circuits, and thereby blocking pain.Another type of receptor that responds to painful stimuli is called a nociceptor. Nociceptors are thin nerve fibers in the skin, muscle, and other body tissues, that, when stimulated, carry pain signals to the spinal cord and brain. Normally, nociceptors only respond to strong stimuli such as a pinch. However, when tissues become injured or inflamed, as with a sunburn or infection, they release chemicals that make nociceptors much more sensitive and cause them to transmit pain signals in response to even gentle stimuli such as breeze or a caress. This condition is called allodynia -a state in which pain is produced by innocuous stimuli.

The body's natural painkillers may yet prove to be the most promising pain relievers, pointing to one of the most important new avenues in drug development. The brain may signal the release of painkillers found in the spinal cord, including serotonin, norepinephrine, and opioid-like chemicals. Many pharmaceutical companies are working to synthesize these substances in laboratories as future medications.
Good Luck in finding some answers & relief...Research & educating myself on all my possible treatment options, Dx's & symptoms has been of tremendous help to me in my own battle w/ pain & finding answers/relief...
You are your own best Advocate when it comes to your educating yourself it empowers you w/ knowlege..Knowledge is power...exp when faced w/ sometimes life-altering decisions..Pls keep us posted.
Your ((Sisters)) are always here for you for support no matter what you decide

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