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Ask the CEC

Welcome to Ask the CEC!

Ask the CEC is another free service offered by the Center to our visitors interested in the disease.  Here you can research your questions about endometriosis and related topics.  Following are just a few examples of questions answered recently. 

Didn’t find your own answer? Ask here! Ask the CEC

Adhesions
Q. A couple years ago I had a laparoscopy. My doctor found a lot of scar tissue around the pelvic area, but said he did not find any live endo. Can endometriosis go away on its own? What else could cause scar tissue in the pelvic area? - Laura

A. Endometriosis is one possible cause of pelvic adhesions. Surgery is another, but you don’t mention having prior surgery, so we’ll eliminate that one. Infections such as pelvic inflammatory disease (PID) can cause adhesions. Some adhesions are even thought to be congenital, meaning you’re born with them.

As for the endo, you might not have any. Or, it might be present but underneath the adhesions. That’s why the CEC doctors excise adhesions, so they can search for any endo that might be hidden beneath them.   

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Bladder Endo
Q. I have bladder infection symptoms around my period (urgency, burning, and I always feel as though I need to go). Cultures are negative for a UTI. Cystoscopy ruled out interstitial cystitis and urethral syndrome. Also, I have painful sex at entry. Could this be endometriosis?

A. Endometriosis can have many symptoms associated with it, and it's possible that endometriosis is the source of your trouble.  However, your symptoms do not match up well with what we expect to see with bladder endo.

Although some physicians feel that endo on the bladder does not cause symptoms, we often see women report pain with a very full or very empty bladder, and very frequent urination.  Burning is not generally thought to reflect bladder endo.

Also, while painful intercourse is a classic symptom of endometriosis, it is pain that occurs with deep penetration, and not pain on entry.

Therefore, although it is certainly possible that you have endometriosis, it doesn't seem likely.

Q. Can endometriosis cause bladder pressure? – Stacey

A. Endo can affect the bladder in a couple of ways. It is fairly common for a woman with endo to have it on the outside of her bladder. It is also sometimes found on her ureters, the tubes that carry the urine from the kidney to the bladder. Rarely it is seen inside the bladder itself.

Symptoms can be similar to those of urinary tract infection (UTI): frequency, urgency, pain with bladder that is very full or very empty.  Burning urination is not a symptom of bladder endo.  It sounds silly, but women with bladder endo know where every restroom in town is.  Urine cultures are negative for bacteria, and antibiotics don't help because the problem is not caused by bacteria.

During laparoscopy, the surgeon should check the bladder very closely for endo. Often this endo appears in the form of clear papules. They can look like miniature cobblestones when magnified by the laparoscope, and they can easily be overlooked. They can be safely and completely removed by excision.

Also, adhesions can restrict the bladder and cause pain and pressure. These can also be removed surgically.

Finally, some women with endo also suffer from Interstitial Cystitis, a separate disorder. IC is diagnosed at cystoscopy, which can be done at the same time as laparoscopy.   

Q. How can one tell the difference between interstitial cystitis and bladder endo? I had endo removed from my bladder and other places a couple years ago. Would my surgeon have been able to spot IC then? What are the differences in the symptoms between the two? - Dana

A. Endo on the outside of the bladder is fairly common. It can be seen and completely excised during surgery. This will very often result in dramatic symptom relief.

Interstitial cystitis is a completely different disease. It is found on the inside of the bladder, and is diagnosed by a urologist during cystoscopy. It is possible to have a cystoscopy and laparoscopy done at the same surgery, if symptoms warrant it.

IC Symptoms include very frequent urination, bladder pain, and urgency.  Sometimes the pain feels like electric shocks to the bladder, and has been described as "bladder migraine."  When the urine is cultured, no bacteria grow.  Therefore, antibiotics will not help the problem.

Most of these symptoms overlap with those caused by bladder endo.  Because endo is more common, most doctors would start there if there were any other endo symptoms, such as pelvic pain, painful intercourse, etc.  If endo has been rules out and symptoms persist, IC should certainly be considered.

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Bowel Endo
Q. I have rectal bleeding each month during the heaviest days of my period (usually days 2 and 3).   Does this mean that endo has invaded the bowel wall, or can it be caused by endo located somewhere else? How serious is this?

A. Rectal bleeding should always be checked out.  It may be something fairly innocuous, such as a hemorrhoid, but you shouldn't ignore the small but real chance that it could signal something more serious.

Endo on the bowel is common and may contribute to rectal bleeding.   This does not mean that you have invasive bowel disease.  Indeed, invasive disease is the exception, not the rule.

Your doctor can perform diagnostic tests such as a colonoscopy to examine the inside of your bowel. Any irregular or suspicious areas can then be biopsied.   You may be told that everything looks normal.  This does not rule out endometriosis as a  cause of your bleeding, because a colonoscopy cannot look at the outside wall of the bowel, where the endo usually is. It does, however, reassure you that endo has not penetrated though the bowel wall.

Q. How common is endometriosis located solely in the bowel? When I described my symptoms, my doctor immediately thought of endo. A laparoscopy revealed nothing, but he later mentioned that he didn't check for endo confined to the bowel because it is "very rare."

A. It is quite uncommon to find endo only on the bowel at a first surgery. If prior surgeries have removed endo from reproductive sites, then bowel disease might be all that’s left, but that doesn’t seem to fit your situation.

Bowel disease is not at all rare. Most CEC patients do a bowel prep the day before surgery just so the surgeons will be free to treat any bowel disease quite aggressively. However, it is much less common to find bowel disease that has penetrated through the bowel wall itself, requiring a bowel resection for relief. Perhaps that’s what your doctor had in mind.

As for the negative findings at laparoscopy, it could be that you do not have endometriosis.  Or it could be that you have it, but the disease was so small that the surgeon didn't spot it, or did not recognize what he did see as being endometriosis.  This is especially possible if you are very young, as frequently the disease is extremely subtle in such women.

Q. Other than the expense and side effects from GnRH drugs, what is your main reason for not prescribing them? My physician wants me to use them since I have extensive endo on my bowel and liver, don't want another child, am 42 years old, and can't take off time for a hysterectomy. - Susan

A. The main reason for not using GnRH drugs is that they are not curative. However, they can be useful in carefully selected situations, and yours may be one of them. As long as you understand that the drugs won’t make your endo go away, and that you can’t take them indefinitely, then a trial to see if they improve your symptoms may be warranted. When you do have surgery, you might want to be off the drugs for an interval, because they are very good at suppressing the appearance of endo. You wouldn’t want your surgeon to miss disease because it was suppressed but still present.   

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Causes of Endo
Q.
My daughter was diagnosed with severe endometriosis, a bladder infection and irritable bowel syndrome. I believe she has had a borderline eating disorder for 12 years. Could this be a contributing factor?

A. Although I am not aware of any studies done on the subject of endometriosis and eating disorders, it does seem that we see eating disorders often in women with endo. 

This is not to suggest that one causes the other. But could it be that women in constant pain for which they are given no satisfactory answers feel completely out of control with their bodies?  An eating disorder, especially anorexia, gives her a modicum of control over some aspect of her person.

An eating disorder can be treated, if the person who has it desires to be free from it. And endo can also be treated. In the meantime, we must be careful not to blame the woman who has one or both of these problems.  They are not self-inflicted, as your question seems to suggest.

Q. I am 21 and getting married in 2 years. We want children desperately and I am concerned that because my mom was diagnosed with endo at 39 I too will develop it. I show no symptoms right now but should I be concerned?

A. Many people believe that endo has a genetic component to it. However, the incidence of endo is so high in the population that we see families where every female has it and other families where only one female has it.

First, endo is a disease of fertile women. Most women with endo who want to have babies, do so. Remember, your mom had you, didn’t she? Chances are good that you will also conceive.

Next, you have an advantage in that you know your mother's history.  Should you develop symptoms suggestive of endometriosis, you'll have a starting point from which to investigate further.

The CEC is helping in a multi-year study about endometriosis and genetics. Click here to learn more about the Oxegene project.

Q. Two years after a c-section I've had extreme pain on my right side during days 1-3 of my period. The pain is not cramping, but the skin and tissue just under the skin is very tender and sore. Now I have a 2-3 inch lump there, just under the skin. It is very tender and gets smaller and larger depending on my cycle. Can this be endo? - Christina

A. There have been studies done that demonstrate endo occurring in the c-section scar post-op. The theory is that after the baby is lifted from the uterus, the interior of uterus is wiped and a trailing edge of the sponge brushes across the open edge of the incision. Endometrial cells are transplanted and begin to grow.

What you describe sounds similar in behavior, but seems to be in an unusual location. Have you had other abdominal surgery, such as an appendectomy or hernia repair? We have seen endo in the abdominal wall after surgeries such as these.

If it is endo, the treatment of choice is to excise the lump. Depending on how large it is and how greatly adjacent tissues and organs are involved, the surgical team might include a gyn, a general surgeon, and perhaps a plastic surgeon to do the abdominal repair, if needed. 

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Coping with Endo
Q.
I recently had surgery. My doctor said we could try for a baby 10 days after my period. When that day came, I was afraid to have sex because of the fear of possible pain.  Is this normal? How do I overcome this fear?

A. Let’s say you had a pair of shoes that used to fit well and look great. You wore them all the time and were very happy with them. But then, you developed some problems with your feet: corns, maybe, or bunions, or bone spurs. Your shoes didn’t fit any more, in fact, they caused terrible, agonizing pain when you put them on, and for hours afterwards. You stopped wearing them except for very special occasions (and then you paid the price!).

Now let’s say you had foot surgery, and the doctor promised your shoes would feel fine again. How eager would you be to try them on?

Of course it is normal to be anxious about resuming an activity that had been painful in the past. This is a very common fear but can be overcome.

Go slowly at first. This is the time for lots and lots (and lots!) of foreplay. You might need to use a water-based lubricant; that’s OK. Try a position where you can control the depth of penetration. Ask your partner to wait for your OK to enter you. Try slow and easy movements if possible, instead of vigorous thrusting. And realize that it may take some time to overcome all your anxiety. If you can, try to forget about conceiving for a little while and concentrate on regaining the intimacy you lost to endo.

At the CEC we have found that relief from painful sex is one of the best by-products of a thorough and careful excision of endometriosis.

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Cysts
Q. My wife recently got operated for a 7 cm endometriotic chocolate cyst. I want to know whether the fact that she had a cyst shows that she has endometriosis.  Or can people who do not suffer from endometriosis also get chocolate cysts? - Shiva

A. By definition, and endometrioma is a cyst formed by endometriosis.   So, having an endometrioma means that she has endometriosis.

Chocolate cyst is a term that is sometimes used to describe what a surgeon might see.  Blood becomes trapped within the endometrioma, and over time, it becomes dark and thick.  When it spills from the cyst, some people think it resembles chocolate syrup: hence the colorful name.

Finally, having old blood within a cyst does not automatically mean it is an endometrioma.  Sometimes a normal follicle cyst from a developing egg can bleed a little at ovulation, resulting in a hemorrhagic corpus luteum.   It is not always possible to tell the difference between this type of cyst and an endometrioma until you can examine it under the microscope. 

See Dr. Albee's article on cysts for more information.

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Diagnosing Endo
Q.  Is it normal for pain from endometriosis to be on the right side for some days (or all month) and then be on the left next month? - Treena

A. If both of your ovaries have endometriosis, or if they are bound down by adhesions and cannot move freely, they are likely to be a source of pain for you.  As your ovaries take turns ovulating, you may feel pain from one side one month and from the other side the next.

Other women have pain that is always worse on one side, regardless of ovulation. Some women who have endo have no pain at all.   So it's difficult to use the words 'pain' and 'endometriosis' and 'normal' all in the same sentence.

Q. Should endo in the cul-de-sac be removed during a diagnostic lap? Mine wasn't. How long do you need to wait to have a second lap to remove it?

A. A diagnostic laparoscopy is done to diagnose endometriosis. Period. A surgeon who schedules a diagnostic laparoscopy intends only to see what’s going on in your pelvis, but not to do anything about it. Your endo wasn’t removed because that wasn’t part of the planned surgery. So, while we would agree that endo in the cul-de-sac (or anywhere else) ought to be excised, the fact that it wasn’t removed during diagnostic surgery doesn’t mean anything was done wrong, but only that the surgery was intended to diagnose and not treat.

There is no magic amount of time you need to wait between surgeries. This interval is best worked out by the physician who is taking care of you. The doctors at the CEC do not perform diagnostic-only laparoscopies. All surgeries are done with excision of endometriosis as the goal.  

Q. Is it possible for endometriosis to be missed during laparoscopy? My GYN said no endo was seen but I had pelvic adhesions, which he removed. I still have pelvic pain, bloating, menstrual diarrhea, irregular periods. Could this be endo that he missed somehow? - Noel

A. Yes, it is possible for endo to be missed at surgery. Endometriosis can have many appearances, from very obvious to extremely subtle. If a surgeon is not thoroughly familiar with all the manifestations of endo, it is possible that some will be missed.

Endo can often hide underneath adhesions. When your surgeon removed your adhesions, was the tissue sent to the pathology lab for analysis? Are you sure they were removed, and not simply split or freed up? The fact that you had adhesions at all is suspicious, unless an obvious reason for them was found.

Also, endo can hide.  At surgery, every corner of the pelvis needs to be checked.  After the ovaries are inspected, they need to be lifted up and held back, so the camera can go underneath them.  A manipulator should be placed in your uterus so it can be pulled out of the way so the camera can go behind it.  The bowel should be moved and examined, and so on.

Finally, although there is still much we don’t know about endo, we do know that a little bit can sometimes cause great pain. If you had endo demonstrated at previous surgery, it is much more likely that endo is behind your present symptoms.  

Q. Two years after a c-section I've had extreme pain on my right side during days 1-3 of my period. The pain is not cramping, but the skin and tissue just under the skin is very tender and sore. Now I have a 2-3 inch lump there, just under the skin. It is very tender and gets smaller and larger depending on my cycle. Can this be endo? - Christina
 
A. There have been studies done that demonstrate endo occurring in the c-section scar post-op. The theory is that after the baby is lifted from the uterus, the interior of uterus is wiped and a trailing edge of the sponge brushes across the open edge of the incision. Endometrial cells are transplanted and begin to grow.

What you describe sounds similar in behavior, but seems to be in an unusual location. Have you had other abdominal surgery, such as an appendectomy or hernia repair? We have seen endo in the abdominal wall after surgeries such as these.

If it is endo, the treatment of choice is to excise the lump. Depending on how large it is and how greatly adjacent tissues and organs are involved, the surgical team might include a gyn, a general surgeon, and perhaps a plastic surgeon to do the abdominal repair, if needed.  

Q. How common is endometriosis located solely in the bowel? When I described my symptoms, my doctor immediately thought of endo. A laparoscopy revealed nothing, but he later mentioned that he didn't check for endo confined to the bowel because it is "very rare."

A. It is quite uncommon to find endo only on the bowel at a first surgery. If prior surgeries have removed endo from reproductive sites, then bowel disease might be all that’s left, but that doesn’t seem to fit your situation.

Bowel disease is not at all rare.  Most CEC patients do a bowel prep the day before surgery just so the surgeons will be free to treat any bowel disease quite aggressively.  However, it is much less common to find bowel disease that has penetrated through the bowel wall itself, requiring a bowel resection for relief.  Perhaps that's what your doctor had in mind.

As for the negative findings at laparoscopy, it could be that you do not have endometriosis.  Or it could be that you do have it, but the disease was so small that surgeon didn't spot it, or did not recognize what he did see as being endometriosis.  This is especially possible if you are very young, as frequently the disease is extremely subtle in such women.

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Drug Therapy for Endo
Q. I'm diagnosed with level 4 endometriosis. My Dr. explained there are medicines I can take, but the results may not be permanent. The only permanent solution is a full abdominal hysterectomy. Is this true or is there another way? - Jeana

A. Stage IV endometriosis is severe disease. Your doctor is correct in advising you that the medical treatments prescribed for endometriosis are often found wanting. Hysterectomy, while often recommended, is often not a solution, unless every speck of endometriosis is removed at the time of the operation. And even if you should choose a hysterectomy, it could almost certainly be done either laparoscopically or vaginally, or a combination of the two. It is really very unusual for CEC surgeons to do an abdominal hysterectomy. 

Q. My 19 year old daughter is being treated with oral contraceptives. She has just started the second pack and has shown no improvement. She is very depressed and concerned that this particular treatment is not going to work for her. What sort of time span is usual before an improvement can be expected? - Vickie

A. In general, most physicians will encourage a woman to give any particular birth control pill three months before evaluating its effectiveness and side effects. Encourage your daughter to stick with it, if she can, to see if she will get some positive benefit.

If it turns out that she does not get improvement, or that the side effects are too severe, she might switch to another pill to see if that helps. Although the birth control pill will not get rid of any endometriosis, many women with endo do just fine on the pill for extended periods of time. Unfortunately, some women don’t seem to get any relief from the pill. 

Q. You use Lupron for endometriosis only in specific situations. Why? When would you use it? I was just diagnosed with endo and an adhesion between my bladder and uterus, and my doctor suggests Lupron. - Sandra

A. Lupron doesn’t get rid of endometriosis. It is expensive and has significant and sometimes permanent side-effects. That’s a lot of items in the "no" column.

One thing that Lupron can do is suppress the appearance of endometriosis. It can shrink fibroids and can sometimes help to de-bulk disease. So it is occasionally used to try to make the pelvis cleaner and thus make the surgery smoother. The problem with this approach is the fear that the Lupron might suppress some endo to the point that the surgeon would not see it. Then you end up with persistent disease, because if you can’t see it, you can’t excise it.

Also, if a patient cannot have surgery at the moment (for example, she's waiting for an insurance policy to cover her), and she is in intractable pain, and we know she has endo, then, sometimes, she may choose to have one or two Lupron shots.  She gambles that she'll lessen her symptoms without having horrible side effects.  Sometimes it works, sometimes it doesn't

Finally, it’s hard to figure how Lupron might help with an adhesion. It may quiet endo underneath the adhesion for a while, but the endo won’t go away and the adhesion won’t be affected at all. Perhaps your doctor feels that if the endo is quiet the adhesion won’t hurt as much.  

Q. Other than the expense and side effects from GnRH drugs, what is your main reason for not prescribing them? My physician wants me to use them since I have extensive endo on my bowel and liver, don't want another child, am 42 years old, and can't take off time for a hysterectomy. - Susan

A. The main reason for not using GnRH drugs is that they are not curative. However, they can be useful in carefully selected situations, and yours may be one of them. As long as you understand that the drugs won’t make your endo go away, and that you can’t take them indefinitely, then a trial to see if they improve your symptoms may be warranted. When you do have surgery, you might want to be off the drugs for an interval, because they are very good at suppressing the appearance of endo. You wouldn’t want your surgeon to miss disease because it was suppressed but still present.  

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Fertility and Endo
Q.  I am 21 and getting married in 2 years. We want children desperately and I am concerned that because my mom was diagnosed with endo at 39 I too will develop it. I show no symptoms right now but should I be concerned?

A.  Many people believe that endo has a genetic component to it. However, the incidence of endo is so high in the population that we see families where every female has it and other families where only one female has it.

First, endo is a disease of fertile women. Most women with endo who want to have babies, do so. Remember, your mom had you, didn’t she? Chances are good that you will also conceive.

Next, you have an advantage in that you know your mother's history.  Should you develop symptoms suggestive of endometriosis, you'll have a starting point from which to investigate further.

The CEC is helping in a multi-year study about endometriosis and genetics. Click here to learn more about the Oxegene project

Q. I really want to get pregnant. Is it best for me to be treated for the endometriosis, or should I just try to get pregnant? - Lynn

A. Only you can answer that question. However, some general guidelines may help. If you have mild symptoms, or no symptoms at all, there is no reason to rush to surgery. If your symptoms are debilitating, surgery will help relieve them and may enhance your chances for conception. In between, you might use the following scenario as a tool:

Picture yourself on the worst day of your cycle. Now add a crying, hungry, wet, crabby infant to the mix. If you see yourself coping well, choose pregnancy. If you see yourself in too much pain to care for your baby properly, then you need to get yourself feeling better first.

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Hysterectomy and Menopause
Q. My ovaries were removed and my endo came back with HRT. I'm off the HRT and find that eating soy products keeps hot flashes to a barely noticeable level. What effect do the plant estrogens have on the endo? - Christine

A. First, it is more likely that you had endo still, as opposed to endo again.  That is, it didn't "come back" because it was never really gone. The hormone replacement therapy stimulated the remaining implants and started causing your problems.

As you have found, the phyto-estrogens found in soy products can be helpful with symptoms caused by low estrogen.  They don't usually seem to aggravate any existing endometriosis.

The potential difficulty is that they don't have enough estrogen to do the things that HRT should do: protect your heart and your bones.  The risks that come when your ovaries stop producing estrogen, either naturally at menopause, or surgically induced, are increased incidence of heart disease, and also osteoporosis.

While hot flashes can make you miserable, heart disease and osteoporosis can kill you.  Check with your physician to make sure you are getting adequate protection for these problems.

Q. I had a hysterectomy at 28. I still have my ovaries and endometriosis.  My doctor says the endo is attached to vital organs and cannot be removed. Three years later, I am in more pain than before.  Can the endo be removed even if it's attached to vital organs? - Colleen

A. Yes. It can be delicate surgery to remove endo from an artery, or the diaphragm, but it can be done, and done safely, through the laparoscope.

Your situation is a perfect example of why it is so important to remove ALL the endo, no matter where it is. When endo is left behind, by accident or on purpose, the pain and problems can continue.

Q. After a total hysterectomy 7 years ago my wife has been diagnosed with endometriosis AGAIN. She has been taken off her estrogen patch. What can she do for the pain, fatigue, etc.?

A. Yours is a troublesome problem. If her ovaries are out, your wife needs estrogen to protect her heart and her bones. Endometriosis can be horribly painful, but osteoporosis and heart disease can be deadly.

The CEC approach would be to surgically remove all endometriosis. It is likely your wife has adhesions, too, and they can be removed at the same time. When all the endo is gone, there is nothing to fear from estrogen.

Many women have been told that it is impossible to have endometriosis after their reproductive organs have been removed, but this is not the case. We stop having endo when the endo is removed.  

Q. I'm diagnosed with level 4 endometriosis. My Dr. explained there are medicines I can take, but the results may not be permanent. The only permanent solution is a full abdominal hysterectomy. Is this true or is there another way? - Jeana

A. Stage IV endometriosis is severe disease. Your doctor is correct in advising you that the medical treatments prescribed for endometriosis are often found wanting. Hysterectomy, while often recommended, is often not a solution, unless every speck of endometriosis is removed at the time of the operation. And even if you should choose a hysterectomy, it could almost certainly be done either laparoscopically or vaginally, or a combination of the two. It is really very unusual for CEC surgeons to do an abdominal hysterectomy. 

Q. Does the CEC recommend HRT for women with a history of endo but are post-hyst and BSO?

A. When a woman loses the estrogen that her ovaries produce, either through the natural aging process of menopause or more abruptly, through surgery, we need to think about the pros and cons of hormone replacement therapy (HRT). Estrogen helps protect a woman’s bones against osteoporosis, it helps protect her heart from disease, and it has also been implicated as a help against Alzheimer’s.

But HRT isn’t always the right choice. Some cancers respond to estrogen, so women who have had these cancers or a close family member who has had them must weigh HRT very carefully.

Women with endo were told for decades that HRT would bring back their endo, and that they must do without it for months and months after surgery.  The fact is, is all the endo is completely removed at the time of the surgery, a woman has nothing to fear from HRT.  CEC doctors routinely give the first replaement estrogen in the recovery room, or, at worst, a few days later.

On the other hand, if some endo was left behind, by accident or by choice, then it doesn’t seem to matter how long you wait to start HRT. The endo that is still present may respond to the estrogen and begin to cause trouble. The key is, all the endo must be completely removed. Then the decision about whether and when to begin HRT can be made on its own merits.  

Q. I've had a hysterectomy. Can I get endo again? -   Pam

A. When we see endometriosis after hysterectomy, it is generally in the exact same places it was in before the surgery. We think it’s usually the same disease that was not removed, or not removed completely enough. It’s more likely that you have endometriosis still, and not again.

Q. Is it possible to have endo after menopause?

A. A woman's ovaries produce estrogen and progesterone. These are the hormones that stimulate the out-of-place tissue of endometriosis. The stimulation of these glands causes gland activity, which causes active changes in the tissue surrounding them. These changes can include bleeding and scar tissue (adhesion) formation.

At the time of true menopause, the ovaries stop producing these hormones, so the endometriosis stimulation ceases.  Therefore, the lesions may become inactive.  If a woman does not begin hormone therapy, the endometriosis implants are not likely to create further damage and pain from them might gradually reduce.  However, the lesions themselves do not go away.  Many post-menopausal women with endometriosis need surgery because of pain, pelvic masses, or scar tissue.

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Insurance and Cost
Q. I had a laparoscopy and my doctor prescribed birth control pills to treat the endometriosis. My insurance will not cover this expense because it is considered birth control. How do I convince my insurance company to pay? - Christina

A. Have your physician write a letter to the insurance carrier stating that your prescription is for the treatment of endometriosis. That's generally all you need to do.

Q. Please give me an exact low/high end of your cost scale, as I will be paying by check for 100% of the surgery. - Mauri

A. This really isn't possible until one of our doctors has reviewed your records.  Many entities contribute to the final costs: the surgeon, the facility where the surgery takes place, anesthesiology, and pathology are the major ones.  Fees are assessed according to the length and complexity of your case.  That's a lot of variables.  Once Drs. Albee or Sinervo has a feel for what your individual surgery might entail, they will be able to provide an estimate of costs.

Q. I am considering the CEC for care but live out-of- state. How can I get info on insurance coverage and arrangements for appointments and travel plans and length of stay required during the surgery? – Tammy

A. The first step in working towards treatment at the CEC is sending us your medical records. Drs. Albee and Sinervo wouldn’t put you through the expense and hassle of a trip to Atlanta unless they felt they had something positive to offer you. Click here if you need information on how to submit your records.

If the doctors feel they can help you, we can look at specific dates for surgery. We’ll check your insurance coverages, and send you information about places to stay. How long you’ll stay in Atlanta is governed by the length and complexity of your surgery. The average stay is about five nights. You need to be here for your pre-op consultations and appointments, have the surgery itself, and then stay in town a day or two until you’re ready to travel home. Once the doctors have reviewed your file we can narrow the timeframe to fit your individual circumstances. 

Q. Do many out of state patients use your services? If so, do you have problems with insurance companies?

A. CEC patients come to Atlanta from all over the world. That’s the easy part of the answer.

Insurance companies seem to be as many, as complex, and as varied as the patients we treat. In general, traditional indemnity companies let you go anywhere for treatment. HMOs are most restrictive, often paying only for procedures done within their network. PPOs are in-between. They will permit you to go out of network but they pay less than they would had you remained in network.

If you are seriously considering treatment at the CEC, you can submit your insurance information with your records and we can look into coverage levels. 

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Miscellaneous Endo
Q. Why do I have so much lower back pain? What exactly causes it? What relief can I get for it?

A.  Low back pain is a very common syptom of endometriosis.   It often is caused by endo on the uterosacral ligaments.

The uterosacrals, along with the cul-de-sac, are the most common site in the body to find endo. These ligaments are at the bottom of the uterus and help support it. Nerves that run through these ligaments supply the lower back (the sacral area).  Hence, endo lesions or adhesions, or both, can irritate the nerves and cause you to experience pain in your lower back. Sometimes the pain can radiate through the buttocks and down the leg. 

The best way to relieve this pain is to remove the endo from the body. This can be done with a procedure known as Laparoscopic Uterosacral Nerve Ablation, a LUNA.

Dr. Albee wrote about LUNA in a recent newsletter.

Q. Do endometriosis implants bleed each month?

A. Endometriosis implants are actually endometrial glands surrounded by stroma. The glands themselves do not bleed. However, where there is gland activity, many times the surrounding stroma is stretched, distorted, or becomes edematous. Then, bleeding can occur in the capillaries around the glands. This leads, in turn, to irritation, inflammation, and a scar tissue reaction (the creation of adhesions). In the truest sense of the word, the endometriosis implants do not bleed.

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Progesterone
Q.
Is Progesterone Therapy an Effective Treatment for Endo?

A. Progesterone in many forms is used to try to treat Endo.  What it does is induce a histologic (microscopic) change in the Endometriosis, which does sometimes help in the pain associated with the disease.  Synthetic progestins are used in the birth control pill and depo-provera (DPMA) to induce similar changes to progesterone.  At best, 50-60% of patients may have some short term benefit from any form of progesterone.  HOWEVER, you must be on the medication indefinitely to have persistent benefit, and often patients will have symptoms that do get worse over time despite being on the progesterone/progestins.  Also, there can be side effects from these medications including bloating, breast tenderness, weight gain and depression - to name just a few.

Pregnancy is a condition in which the body makes an abundance of progesterone.  This induces a similar change and many women with Endo do feel better when they are pregnant.  However, when the pregnancy is over and breast feeding is done, the hormone levels return to the pre-pregnancy levels and estrogen starts to stimulate the Endo again and start causing pain again.

These are a few of the reasons that we want to treat Endo with excision, since over 80-85% of patients are significantly improved in most or all their symptoms indefinitely without the use of any medications which can cause side effects.  The chances of recurrence of Endometriosis at our Center is between 7-8%.  From a patient perspective, one would ostensibly rather have her Endo treated with excision, and know that generally speaking, she could avoid any recurrence and not have to be on something indefinitely.

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Surgery
Q. Does Dr. Albee uses only one method, or more? I am thinking excision is the best option, but I just read elsewhere that a state of the art CO2 laser might be better, I am confused. - Holly

A. 'Excision' means 'to cut out'. So, excision for endometriosis means that the endo is cut out of the body.  There are a number of tools that can be used for this purpose.  Most common are lasers.  Dr. Albee and Dr. Sinervo use a CO2 laser.  What is more important than which cutting tool is used is the skill and experience of the hand holding the tool.  We can all hold a paintbrush, but that doesn't mean we can paint the Mona Lisa!

Q. Should endo in the cul-de-sac be removed during a diagnostic lap? Mine wasn't. How long do you need to wait to have a second lap to remove it?

A. A diagnostic laparoscopy is done to diagnose endometriosis. Period. A surgeon who schedules a diagnostic laparoscopy intends only to see what’s going on in your pelvis. Your endo wasn’t removed because that wasn’t part of the planned surgery. So, while we would agree that endo in the cul-de-sac (or anywhere else) ought to be excised, the fact that it wasn’t removed during diagnostic surgery doesn’t mean anything was done wrong, but only that the surgery was intended to diagnose and not treat.

There is no magic amount of time you need to wait between surgeries. This interval is best worked out by the physician who is taking care of you. The doctors at the CEC do not perform diagnostic-only laparoscopies. All surgeries are done with excision of endometriosis as the goal.

Q. Is it possible for endometriosis to be missed during laparoscopy? My GYN said no endo was seen but I had pelvic adhesions, which he removed. I still have pelvic pain, bloating, menstrual diarrhea, irregular periods. Could this be endo that he missed somehow? - Noel
 
A. Yes, it is possible for endo to be missed at surgery. Endometriosis can have many appearances, from very obvious to extremely subtle. If a surgeon is not thoroughly familiar with all the manifestations of endo, it is possible that some will be missed.

Endo can often hide underneath adhesions. When your surgeon removed your adhesions, was the tissue sent to the pathology lab for analysis? Are you sure they were removed, and not simply split or freed up? The fact that you had adhesions at all is suspicious, unless an obvious reason for them was found.

Also, endo can hide.  At surgery, every corner of the pelvis needs to be checked.  After the ovaries are inspected, they need to be lifted up and held back, so the camera can go underneath them.  A manipulator should be placed in your uterus so it can be pulled out of the way so the camera can go behind it.  The bowel should be moved and examined, and so on.

Finally, although there is still much we don’t know about endo, we do know that a little bit can sometimes cause great pain. If you had endo demonstrated at previous surgery, it is much more likely that endo is behind your present symptoms.   

Q. Is having one ovary removed an effective treatment for endometriosis? My doctor thinks that is the next course of action to take. I'm having a hard time figuring out how taking one ovary out, when I have pain in both, and severe pain sometimes in my uterus is going to help me? - Tammy

A. You are exactly right to have questions. Every patient should ask questions before a surgery, including:

  • Why are we doing this?
  • What can I expect as results?
  • Are there other options?

As to your particular case, you need to speak with your physician about the plan.  It might be that one ovary is totally diseased.  In such an instance, removal is appropriate.  Many times it is possible to preserve the healthy portion of an ovary, removing only what has been destroyed by disease.  But the only way to know your doctor's plan is to ask him or her directly.

Q. I read that the FDA has approved a procedure where a heated balloon is inserted into the uterus and burns the inner lining.  I know that it can cause infertility, but can it solve my problems with endo? - Brenda

A. Endometrial ablation can be performed in a variety of ways. The goal is to reduce or eliminate bleeding. You must assume that you will be infertile after this procedure. Many women have greatly reduced or no menstrual flow after an endometrial ablation, and if your symptoms are only excessive bleeding, this procedure might help. But if the underlying problem is adenomyosis, ablation probably won’t do much good. You might want to read Dr. Albee's newsletter article about adenomyosis.

Most of the time, however, the endometriosis is in the pelvis outside the uterus. Any procedure done to the inside of the uterus will not affect that endo. So, while endometrial ablation has its uses, treating endometriosis is not one of them.  

 

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