Endometriosis
Endometriosis is a giant problem. It is underdiagnosed, difficult to diagnose, and undermanaged. It is many times disabling. It mainly causes pain and infertility. The average women requires 7 visits to the Gynecologist to get a consideration of the diagnosis, some evaluations, and some treatment. There are millions of new cases every year.
Endometriosis causes pain. Gyne's have a short name for Endometriosis. We call it endo. The pain of endo starts as pain with menstrual flow. Threre is usually more pain on the heavier days. But the pattern of pain could be different. It might be worse at the start of the flow, it might be worse at or after the end of the flow. The pain is usually located in the central pelvis, and radiates to the lower back.It hurts near the sacrum and the coccyx. In the lifecycle the pain can start as early as the first menses at age 13 or so. But in many cases it only becomes a known factor between the ages of 30 to 40. There are cases where endo is painless. It might be an incidental diagnosis, or it may be diagnosed during an infertility workup. Routine questions during an infertility workup should include asking about various kinds of pain. If pain is there, then a endo workup is required, as well as the infertility workup.
Many women have dysmenorhea. This means they have pain with menses. Dysmenorhea can be terrible pain, but if there is no endo, then the pain can be managed and there is unlikely to be severe consequences. Endo causes severe consequences.
Many women have dysmenorhea. This means they have pain with menses. Dysmenorhea can be terrible pain, but if there is no endo, then the pain can be managed and there is unlikely to be severe consequences. Endo causes severe consequences.
As endo advances it might cause pain with ovulation, on day 14 or so of a 28 day cycle. This ovulation pain can be one sided, or it could still be in the middle. It will likely radiate to the sacrum and lower back.
Endo might also cause pain with intercourse. This is a tough one to ask about. Many women are reluctant to talk about intercourse at all, much less painful intercourse. This is where a good Therapeutic Alliance (see prior post about the therapeutic alliance) comes in handy. If a patient knows that we both have an alliance that is dedicated to helping her achieve health, wellness, and life goals (such as pregnancy), then the doors to communication are opened up more easily. Many women believe that painful intercourse is the natural state of being. I try to convince them otherwise. But if there is painful intercourse, then we have to find out if the pain is deep inside, near the lower back, or is it just the pain of inadequate lubrication. Inadequate lubrication is also very common, and is easily treated with sex lubes, and is not suggestive of endo. But if the pain comes with deep penetration, and is located in the lower back, then there is a strong suggestion of endo.
Eventually the pain of endo will overtake the entire month, so eventually there will be no pain free days.
The endo pain, if unmanaged, can progress to total disability. And it can lead to multiple, progressive, increasingly interventional surgical techniques. This can, in a bad case, lead to hysterectomy, and even ovarian removal.
A gynecological Endo examination by a physician is best done when the pain is active. This frequently means when the menses is ongoing. Many women are reluctant to be examined during their period. But it really is the best way to find the signs of the diagnosis. When the pain is active, the examiner (myself) can probe around and ask, "does it hurt here?". "Does it hurt there?". If I find the pain or tenderness is in the endo places, then the diagnosis is very likely. If I find the pain is elsewhere, such as a muscle spasm of one of the pelvic muscles, then the diagnosis is very different. The treatment is very different, and endo surgery is a waste of time, risk, and money.
A gynecological Endo examination by a physician is best done when the pain is active. This frequently means when the menses is ongoing. Many women are reluctant to be examined during their period. But it really is the best way to find the signs of the diagnosis. When the pain is active, the examiner (myself) can probe around and ask, "does it hurt here?". "Does it hurt there?". If I find the pain or tenderness is in the endo places, then the diagnosis is very likely. If I find the pain is elsewhere, such as a muscle spasm of one of the pelvic muscles, then the diagnosis is very different. The treatment is very different, and endo surgery is a waste of time, risk, and money.
Believe me, you don't want to have endo. But if you do have it, you really want to know that you have it, so the disease can be blocked, reversed, or mitigated. Or at the very least, explained.
What is endo?
To answer that question, one must know what normal endometrium is. After understanding endometrium, then one can understand endometriosis.
Endometrium is the lining of the uterus. This is the tissue that grows every menstrual month. It grows from a thin basal layer into a lush rich fluffy layer that is sticky to embryos. It grows from day 1 to day 14 or so. It grows from a few millimeters to about 12 mm by day 14. After the egg pops out of the ovary at ovulation, endometrium stops growing and starts secreting a nourishing substance that attracts embryos and supports embryos. If there is an embryo, the lining stays in place, and the pregnancy grows for the next 9 months. If there is no embryo, the whole of the uterine lining comes out as the menstrual flow, via the vagina. The lining becomes thin once again and the cycle restarts.
The pathology of endometriosis happens because these endometrium cells have a huge potential for growth, even in bad places. They can grow anywhere they happen to implant. In a normal menstrual cycle a few endometrial cells will flow backwards out the fallopian tubes every period. These wayward cells then land outside the uterus and start growing where-ever they land. They usually land behind the uterus and infront of the rectum, halfway to the sacrum. This is where the pain comes from. These cells then grow and menstruate in these abnormal locations. They don't belong there, so they stir up a ton of trouble. They usually form sticky adhesions and organs get stuck together. They form bloody blisters on the organs. These blisters, as you can imagine, are quite painful. These bloody blisters advance to cysts. These cysts fill with blood. If the blood is old, it turns to a thick chocolate colored material. We call these chocolate cysts. It looks exactly like thick chocolate. These cysts have a thick and tough wall. The worse case scenario is when the chocolate cyst ruptures. It becomes a giant mess in there.
These ruptured chocolate cysts frequently require surgery. These surgeries are sometimes challenging beyond belief. Everything may be stuck together in a huge inflammatory mass of adhesions, chocolate, blood, and blisters. Separating the organs becomes nearly impossible. The adhesions are dense and invade the normal tissues. Occasionally the surgeon must remove bowels, parts of bladder, blood vessels, uterus, ovaries, and other things. Frequently the pathology is within millimeters of giant blood vessels and the ureter. It is not unusual to damage these other organs. This damage must be recognized and managed. Risk must be managed. These surgeries can be every bit as challenging as cancer surgery, or more so. I have seen cases that take 12 hours. These surgeries are best done by an experienced Gynecologist with an oncologist and a general surgeon available. Urology on staff is really helpful.
In these last two paragraphs I have taken you from stage one to stage 4 endo. Stage one and two involve only the surface of organs. Stage three and four involve thick structures. Stage one and two are not going to cause infertility unless the tubes are damaged. Stage three and four will make pregnancy unlikely, unless removed and the tubes can be adequately repaired.
Knowing the mechanism of endo makes it easy to understand how to mitigate its risks.
For instance, menstruating makes endo worse. Not menstruating makes it better. Menopause is a big relief, because there is no further growth of endometrium. Pregnancy is great, too. Oral contraceptives suppress endo some, but noncyclic oral contraceptives are better because there are no menses. Being a nun is a giant risk factor, menstruating without a break for 40 years causes a lot of endo. A women that has twenty babies is at very low risk for endo, because she only has a few periods over the years. Giving a women artificial menopause is a giant relief for the endo. This can be done as a nonsurgical test for the endo.
Some people believe that the only way to prove endo as the cause of the pain is to do surgery and see it. Some go beyond that and say that you have to do a biopsy of the endo to prove the diagnosis. In my opinion, the biopsy is unnecessary unless there is doubt about the diagnosis. The only people who insist on the biopsy are people who don't actually deal with it all of the time. And, it is perfectly possible to have endo that doesn't show on any particular biopsy because it is subsurface or inactive at the time of the surgery. The ACOG technical bulletin on endo states that the biopsy is only required when the diagnosis is questionable.
Endo, for some reason, is not too uncommon in the belly button. It looks like a purple swollen bruise there. It can happen anywhere in the body. A woman can menstruate out of her nose. It can get in the brain, or the liver. She can menstruate out the rectum if the endo is inside the colon. It can be awful.
This is why it is important to know if endo is there or not.
On physical exam, it is easy to feel the endometrial implants on the uterosacral ligaments. They are nodular and tender, sometimes very very tender. If that is found on pelvic exam, then endo is the likely diagnosis. The woman needs intensive counselling, further diagnosis, treatment, and an offer to mitigate it's risks.
It can be controlled hormonally by controlling the periods.
But, when all else fails to control the pain, and a woman is done having kids, then frequently a hysterectomy with ovarian removal will be necessary. The ovaries usually have to go because it is the estrogen that is what drives the endometriosis forward.
The pain of endometriosis is so bad that women frequently wake up from the anesthesia in less pain than when they went under, even with a big open incision. Typically, they are very happy for the relief.
Finally, there is another form of endo that is not too uncommon. If the endo invades the muscle of the uterus, it causes a spongy deterioration of the uterine muscle that is very painful and bloody. This is called Adenomyosis, or endometriosis interna. This is harder to diagnose than traditional endo. For all the world, it behaves like fibroids. Frequently, a woman with unremitting fibroid pains and bleeding will have a hysterectomy, but the final path report will show no fibroids but adeno. It doesn't matter by then, because the problem is cured. And there is no other cure for Adeno than a hysterectomy, other than really aggressive hormonal control and intervention. That hormonal therapy has another set of risks.
So that is endo. It is a severely painful chronically progressive disease, with no known cause but plenty of risk factors. It runs in families.
If you suspect you have endo, then have a consultation with your Gynecologist. The Gyn may need to examine you during your period, or may need to do surgery to fully diagnose it. Ask for photos to be taken, because endo can look like a lot of different things, including retracted rings, clear blisters, and adhesions. Not all gyn's are full capable of recognizing all of the different presentations. If in doubt, get a second, a third, and a fouth opinion. Remember that the average endo patient needs 7 visits to the Gyn to make a proper diagnosis, so as to rule out plain ovarian cysts, fibroids, muscle spasms, dysmenorhhea, etc.
Or, make an appointment in my office.
Thank you very much.
Dr John Marcus MD FACOG
A member the Lifeline Group, at www.lma-llc.com
89 North Maple Ave
Ridgewood, NJ 07450
These ruptured chocolate cysts frequently require surgery. These surgeries are sometimes challenging beyond belief. Everything may be stuck together in a huge inflammatory mass of adhesions, chocolate, blood, and blisters. Separating the organs becomes nearly impossible. The adhesions are dense and invade the normal tissues. Occasionally the surgeon must remove bowels, parts of bladder, blood vessels, uterus, ovaries, and other things. Frequently the pathology is within millimeters of giant blood vessels and the ureter. It is not unusual to damage these other organs. This damage must be recognized and managed. Risk must be managed. These surgeries can be every bit as challenging as cancer surgery, or more so. I have seen cases that take 12 hours. These surgeries are best done by an experienced Gynecologist with an oncologist and a general surgeon available. Urology on staff is really helpful.
In these last two paragraphs I have taken you from stage one to stage 4 endo. Stage one and two involve only the surface of organs. Stage three and four involve thick structures. Stage one and two are not going to cause infertility unless the tubes are damaged. Stage three and four will make pregnancy unlikely, unless removed and the tubes can be adequately repaired.
Knowing the mechanism of endo makes it easy to understand how to mitigate its risks.
For instance, menstruating makes endo worse. Not menstruating makes it better. Menopause is a big relief, because there is no further growth of endometrium. Pregnancy is great, too. Oral contraceptives suppress endo some, but noncyclic oral contraceptives are better because there are no menses. Being a nun is a giant risk factor, menstruating without a break for 40 years causes a lot of endo. A women that has twenty babies is at very low risk for endo, because she only has a few periods over the years. Giving a women artificial menopause is a giant relief for the endo. This can be done as a nonsurgical test for the endo.
Some people believe that the only way to prove endo as the cause of the pain is to do surgery and see it. Some go beyond that and say that you have to do a biopsy of the endo to prove the diagnosis. In my opinion, the biopsy is unnecessary unless there is doubt about the diagnosis. The only people who insist on the biopsy are people who don't actually deal with it all of the time. And, it is perfectly possible to have endo that doesn't show on any particular biopsy because it is subsurface or inactive at the time of the surgery. The ACOG technical bulletin on endo states that the biopsy is only required when the diagnosis is questionable.
Endo, for some reason, is not too uncommon in the belly button. It looks like a purple swollen bruise there. It can happen anywhere in the body. A woman can menstruate out of her nose. It can get in the brain, or the liver. She can menstruate out the rectum if the endo is inside the colon. It can be awful.
This is why it is important to know if endo is there or not.
On physical exam, it is easy to feel the endometrial implants on the uterosacral ligaments. They are nodular and tender, sometimes very very tender. If that is found on pelvic exam, then endo is the likely diagnosis. The woman needs intensive counselling, further diagnosis, treatment, and an offer to mitigate it's risks.
It can be controlled hormonally by controlling the periods.
But, when all else fails to control the pain, and a woman is done having kids, then frequently a hysterectomy with ovarian removal will be necessary. The ovaries usually have to go because it is the estrogen that is what drives the endometriosis forward.
The pain of endometriosis is so bad that women frequently wake up from the anesthesia in less pain than when they went under, even with a big open incision. Typically, they are very happy for the relief.
Finally, there is another form of endo that is not too uncommon. If the endo invades the muscle of the uterus, it causes a spongy deterioration of the uterine muscle that is very painful and bloody. This is called Adenomyosis, or endometriosis interna. This is harder to diagnose than traditional endo. For all the world, it behaves like fibroids. Frequently, a woman with unremitting fibroid pains and bleeding will have a hysterectomy, but the final path report will show no fibroids but adeno. It doesn't matter by then, because the problem is cured. And there is no other cure for Adeno than a hysterectomy, other than really aggressive hormonal control and intervention. That hormonal therapy has another set of risks.
So that is endo. It is a severely painful chronically progressive disease, with no known cause but plenty of risk factors. It runs in families.
If you suspect you have endo, then have a consultation with your Gynecologist. The Gyn may need to examine you during your period, or may need to do surgery to fully diagnose it. Ask for photos to be taken, because endo can look like a lot of different things, including retracted rings, clear blisters, and adhesions. Not all gyn's are full capable of recognizing all of the different presentations. If in doubt, get a second, a third, and a fouth opinion. Remember that the average endo patient needs 7 visits to the Gyn to make a proper diagnosis, so as to rule out plain ovarian cysts, fibroids, muscle spasms, dysmenorhhea, etc.
Or, make an appointment in my office.
Thank you very much.
Dr John Marcus MD FACOG
A member the Lifeline Group, at www.lma-llc.com
89 North Maple Ave
Ridgewood, NJ 07450
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