Transcription:
Endometriosis: Often Undiagnosed - Commonly Misunderstood

Melanie Cole (Host):  For many women, endometriosis is a disease surrounded by taboos and myths, delayed diagnosis and a wide variety of symptoms with a lack of awareness.  To clear some of that up today is Edie Edberg.  She’s a board certified nurse practitioner specializing in obstetrics and gynecology at Shakopee Clinic.  Welcome to the show, Edie.  What is endometriosis?  Clear that up for us at the beginning.

Edie Edberg, NP (Guest):  Hi.  Thanks for having me back.  Endometriosis can be a little puzzling for a lot of people for a long time.  It’s a condition that affects women only during their most important years, which is their reproductive years somewhere between 25 and 35.  It’s a benign condition but it can cause some very disabling, distressing symptoms like pelvic pain, change in your periods, bleeding patterns, bowel changes. it’s all, as a result, we feel, from what we call retro-grade menstruation where the blood from the uterus—those stromal glands--implant on surrounding tissue like the uterus and the ovaries and the tubes which bleed for your period often will cause you pain in those areas.

Melanie:  Why does endometriosis often go undiagnosed or misdiagnosed for quite a while?

Edie:  I think that’s because there’s such a variety of symptoms.  Some women will have no symptoms at all.  Other women will have horrible, excruciating, disabling symptoms of pelvic pain and painful periods.  Oftentimes, it goes undiagnosed because people don’t really seek treatment unless they are having disabling symptoms and endometriosis does not always cause those disabling symptoms.  Sometimes won’t even find out until they are attempting pregnancy for a period of time and then it’s diagnosed at that time.

Melanie:  Is it hereditary?  Who’s at risk?

Edie:  It is not hereditary although it does follow some families.  Your mother may have had it which increases your risk to about 7% to have it but there is not genetic proven fact that it travels through families or because your mother had it, you will have it. Or, because your sister had it you will have it.  It is common but not guaranteed that you would have those same problems.  It often is found in women who have not had children or have started their periods early or have had short cycles and women may consider that as being normal to them and, again, don’t find our unless they are having debilitating symptoms or it’s time for them to achieve pregnancy or their desire for pregnancy brings this to the forefront.

Melanie:  Women worry when they hear the words endometriosis that they are now going to be infertile.  Does one follow?  Does endometriosis cause infertility?

Edie:  Endometriosis by itself does not cause infertility.  Endometriosis can be very puzzling, very emotionally struggling, because some women who will have severe endometriosis will have severe pain and achieve pregnancy.  Others will have very little pain, very little problems but still be diagnosed with endometriosis and not be able to get pregnant.  So, there is no black and white answer for infertility.  It is often found as one tries to achieve pregnancy. Almost as high as 40% of women will have some form of endometriosis found during an infertility workup but endometriosis does not usually prevent conception.

Melanie:  That’s so interesting.  Now, tell us about the treatments if someone is diagnosed.  They’ve had a lot of pain or they’ve had issues with this.  What are some of the treatments?  What do you do for them?

Edie:  It kind of depends on how they present to us and how much they want to improve their lifestyle.  You can offer over the counter medication such as ibuprofen alternated with Tylenol. You can use birth control pills which are probably an excellent choice because this will help the ovaries remain quiet until they want to pursue pregnancy.  So, it keeps the endometriosis at bay so you don’t have some of those damaging side effects that occur.  So, pain control, birth control pills help to suppress the pain cycle.  There is a hormone or a gonadotropin called Lupron that is used to suppress endometriosis.  For severe treatment, if you are finished with your reproductive age, you may consider a hysterectomy.  There are also some homeopathic avenues that you can explore, too.  One of those would be acupuncture.  That has had some proven effectiveness in the treatment of endometriosis. 

Melanie:  I was getting to that.  I was going to ask you about homeopathic or natural ways to treat endometriosis.  So, acupuncture being one of them, are there any others that you would like to recommend?

Edie:  During that trial of the homeopathic approach for acupuncture, it was also challenged with the Chinese herbal medicine and there isn’t any particular one that shows the effectiveness as acupuncture may.  Someone may find in their reading an option to try and if that’s reasonable, we certainly would not discourage it.

Melanie:  What about other conditions?  Is endometriosis a precursor to anything?  Will it lead to endometrial cancer by any way?

Edie:  Endometriosis is the spilling of the stromal glands from the inside of the uterus to the outside of the uterus.  It attaches to ovaries, to bowel.  It does not cause a problem within the uterus whereas endometrium is.   It does not create endometrial cancer or put you at higher risk.  There are some studies about endometrial cancer being a precursor to a type of ovarian cancer called an “epithelial ovarian cancer” but it is not linked to the other ovarian cancers and even the epithelial ovarian cancer you are at low risk for but also something you should watch for as you age.

Melanie:  Are there some surgical treatments for endometriosis that are sometimes required?

Edie:  Some of those surgical treatments might include a laparoscopy where you can burn some of those areas of obvious endometriosis and then those areas will not bleed rhythmic like your period but that is oftentimes not done as frequently as we did in the past.  Now, we treat symptoms and that would be first birth control pills or possibly Lupron therapy, depending on the severity and the desire for pregnancy.

Melanie:  Is it possible, Edie, to have endometriosis without the pain or is it usually a painful condition?

Edie:  You absolutely can have endometriosis without the pain.  We oftentimes will go into surgery and will see implants that are classic of endometriosis which tends to be blue and black in color.  Sometimes, we will see these powder type burns that are white and those are also endometriosis.  Some of those areas have not become as aggravated or irritated as those others.  You can have endometriosis and not have pain. Absolutely.

Melanie:  Is there a cure?   Is this something that is chronic?  Is it more common in younger women?  Do post-menopausal women get it?  What happens as you age?

Edie:  The average age is 25-35 to have symptomatic problems with endometriosis.  Once you reach menopause, your hormones decrease.  Your estrogen, your progestogen decrease so you are continuing to have that same influence of pain monthly.  It’s not a post-menopausal issue.  It tends to be in that child bearing age, between 25 and 35.

Melanie:  In just the last few minutes, Edie, if you would give us your best advice for women who have pelvic pain who are worried they might have endometriosis or who are recently diagnosed with it.

Edie:  Endometriosis can be a very emotional journey to diagnosis because oftentimes they feel like they are not being taken seriously because they have chronic pain and you can’t just quite put your finger on it.  So, it can be emotionally taxing for the patient.  I would suggest keeping a journal of the times that you have pain just with a little notation on your calendar, possibly any irregular bleeding or spotting that occurs, some of the pain options you have tried but maybe have failed.  Certainly, you should be seen by one of your providers – your nurse practitioner or your primary care provider--if you have symptoms of unexplained pelvic pain or bladder pain, bowel changes, constipation, diarrhea with your periods, spotting or bleeding in between your periods or one year of attempting pregnancy and not being successful.  Birth control pills can definitely create symptom relief for you until you desire to achieve pregnancy.

Melanie:  Thank you so much. It’s great information.  You’re listening to The WELLcast with Allina Health.  For more information you can go to allinahealth.org.  That’s allinahealth.org.  This is Melanie Cole.  Thanks so much for listening.