Q&A with Dr. K
In our Q&A with Dr. K. forum, he will answer questions of general interest. Specific medical advice is not provided. Submit a question.
I have a surgery date, but how do I manage my symptoms until then? I'm miserable.
Always check with your surgeon about your specific case. For example, I have my patients stop certain medications before surgery, but which meds and how long before surgery to stop depends on the surgeon, so it's best to check.
Some general suggestions include using an ice pack on your areas of pain. Heat from a heating pad feels good, but can draw more blood to an already congested area, and there is the risk of burns. I don't advise it; ice is nice.
Make sure you are drinking enough water. Being even a little dehydrated can contribute to feeling poorly. Eat lightly, and eat healthy.
Watch something that always makes you laugh. Studies show laughter really is good medicine; it produces endorphins and helps your body relax.
High-impact exercise is generally not possible, but walking can be helpful, and a little time in the fresh air doesn't hurt. Many people find getting into a pool can also help, as the water supports you by taking stress off your joints.
Massage can be helpful but be open with your therapist about any areas that should be avoided.
Getting good sleep is important. Take a warm bath or shower before bedtime. Keep your room cool and dark, and turn off ALL your screens.
And every day that passes gets you one step closer to surgery day. Good luck to you, and thanks for writing.
I'm 17 and have endometriosis. I want to be a mom someday. What should I know and do now to make that happen?
This is a thoughtful question that requires a thoughtful answer. Let's take a step back and ask: Why do you say that you have endo? Endo usually presents in two ways, pain and infertility. I assume you have painful periods and someone (perhaps your physician) said you may have endo. You may have also heard that endo, can make getting pregnant difficult for some people.
First, it is important to know that the only way to know for sure it's endo is when the pathologist who examines the specimens removed at surgery says it is. We can make an educated guess based on symptoms, a pelvic exam, and imaging, but the only way to be certain is to have surgery.
If you haven't had surgery or if you have but your endo was not completely excised by a skilled and experienced surgeon, you might want to make that your first priority. Excision has been clearly shown to be effective in relieving the painful symptoms you might have now. Excision also enhances future fertility because once the disease is completely excised, progression of disease is halted. Progression of endo to advanced stages is what impacts fertility negatively.
Next, while I wouldn't encourage you to conceive at 17, I also wouldn't want you to wait until you are 40 or older. Fertility declines with age for all women, and you should be aware of that. In the meantime, between now and your future pregnancy, you can eat right, exercise, and get good sleep.
Finally, if you have other symptoms beside pain (fatigue, aches, irregular and/or heavy bleeding, etc.) they should be checked out as well. Being pain free is just one aspect of wellness and it's important to look at all areas of health. Thanks for writing.
I have endo but my pain isn't as bad as others. Yet I haven't gotten pregnant, after 2 years of trying. Should I consider surgery, even with mild symptoms?
I don't think your symptoms are mild at all. The fact that you haven't conceived after years of trying indicates your symptoms are, in fact, severe, even though your pelvic pain is bearable. Sadly, infertility is an often overlooked symptom of endometriosis. Yes, a symptom, not a diagnosis.
There is not always a good connection between how much disease and how much pain: some people with a little disease have horrific pain, and others with a lot of disease have none. The best way to find out what's going on is to go to the OR and look.
I do not believe in doing a solely diagnostic surgery, though, preferring to diagnose and treat at the same time. In cases like yours, where infertility is involved, identifying and excising endo is only part of the plan. This is where restorative reproductive surgery (the RRS of CRRS) has a very important role. A full surgical evaluation of reproductive function is done, beginning at the vaginal canal and ending in the abdominal cavity.
Restoration of anatomy (by removing adhesions) and complete excision of endo play a huge role in enhancing fertility, but they are not the only methods available. Other surgical ways to improve fertility (depending on the individual situation) are tubal cannulation, to unblock the end of the tubes, fimbrioplasty (to restore function of the fimbria, the delicate structures that draw the egg from the ovary into the tube), hysteroscopy (using a camera to evaluate the inside of the uterus and remove polyps or fibroids or a uterine septum), treating cervical stenosis (if the cervical opening is too tight) or even ovarian wedge resection to restore ovulation in a patient with PCOS. All these are forms of restorative reproductive surgery. Our goal is not just to restore the anatomy, but also the function.
So to (finally!) answer your question, yes, I think you should consider surgery. Pain is not the only reason to plan a procedure.
Not to be rude, but every gyn sees and treats endo. What makes you different?
That's a fair question but requires a long(ish) answer. Meet (imaginary) Dr. Gyn. Dr. Gyn and I were both taught in medical school that endo was caused by reflux menstruation (not true, but that's what they taught us). If Dr. Gyn believes that's true, stopping menstruation is a logical way to treat endo. Dr. Gyn routinely prescribes a birth control pill, even before endo has been confirmed surgically. Sometimes that helps a patient feel better (even though endo is still present and continuing to deepen within the pelvis). Eventually, bcps aren't sufficient to control symptoms, and a stronger medication, such as Lupron, is used. These meds come with significant side effects, but Dr. Gyn says they're necessary to treat endo.
When the patient returns to the doctor complaining of pain and/or infertility, Dr. Gyn schedules a laparoscopy to actually diagnose endo. Note that this might only happen after YEARS of suppressive medication. In the OR, Dr. Gyn doesn't recognize subtle disease and tell the patient, 'There's nothing wrong with you' and provides a referral to another specialist, such as a gastroenterologist or a psychiatrist.
Or, Dr. Gyn may see a pelvis fully involved with endo: endometrioma on the ovary, implants on the bladder, adhesions binding the organs together. 'Gee,' the doctor thinks, 'I could be in here all day trying to clean this up, and some of those areas are tricky. Besides, IT'S JUST GOING TO COME BACK because of reflux menstruation. I'll just do what I can.'
Dr. Gyn then uses an energy source, such as a cautery or a laser, to destroy some of the endo. The patient is started on a suppressive medication post-op, because Dr. Gyn wants to prevent the endo from returning. Lather, rinse, repeat. When the patient has had several rounds of meds and multiple laparoscopies, Dr. Gyn says a hysterectomy to remove the uterus, tubes, and ovaries is the only option left. It's a big step, but at least with no reproductive organs, Dr. Gyn is confident the endo will dry up.
After all this, if the patient returns to Dr. Gyn and says, 'I'm still hurting' Dr. Gyn says it couldn't possibly be endo and refers the patient to another specialist, such as a gastroenterologist or a psychiatrist.
What do I do that's different? Almost everything. At the CRRS, we don't put patients on hormonal suppression. If symptoms and a careful pelvic exam suggest endo, we go to the OR. In the OR, we don't destroy the tissue. Instead, I use a laser to meticulously cut it out (excision) everywhere it is. I continue to work through layers of disease until I get to healthy tissue. Each removed specimen is sent to Pathology for microscopic evaluation. If you don't do this, you really don't know WHAT you have. Superficial treatment, such as performed by fictitious Dr. Gyn, destroys the tissue and there is nothing left for the Path lab to examine. What's worse, the operative site can scar over, trapping endo beneath it, and the poor patient is told, 'Your endo came back' when the truth might be stated as 'Your endo is still there.'
When excision is used carefully and thoroughly by a skilled surgeon, endo recurrence rates are less than 10%. My patients are not put on suppressive medications after surgery because I am confident that the endo is gone, and hence there is nothing left to be suppressed.
Finally, I have had extensive training and experience in excision, as well as several years of experience working in a high-volume endometriosis excision practice. I do lots and lots of endo excision. Dr. Gyn goes to the OR as a last resort and so cannot develop the experience needed to become truly expert with disease recognition and excision.
If you are interested in our approach, I invite you to submit your records for a free evaluation. Details can be found here.
How does endo contribute to infertility?
Three ways. First, endo causes inflammation in the pelvis which can cause a hostile environment for conception. The more endo you have, the greater the amounts of inflammation.
Second, endo can cause a mechanical issue. If the fallopian tube or the ovary, or both, are stuck down by adhesions, their mobility is compromised and the chances of sperm meeting egg are reduced.
Third, endo can directly involve the organs. If the ovary has an endometrioma, it causes not only a highly inflamed environment but also a decrease in the number and quality of eggs produced. Endo can also cause a blockage to the fallopian tube, which prevents the meeting of egg and sperm.
Not all people with endo are infertile or sub-fertile, but excising all endo and restoring function can greatly improve the chances for pregnancy in those who are.
I've never had surgery. Can I still consult you about endo and fertility?
Absolutely. You'll have fewer records to submit (https://www.thecrrs.com/your-records-and-narrative/) but that's not a problem at all. We would be happy to review your situation and provide recommendations for next steps.
Our daughter is 13 and has suffered terribly since her periods began. Our doctor thinks she's exaggerating, and, when we persisted, offered birth control pills. What do you think?
I am so sorry your daughter has had to face such misery, both from pain and also from a medical provider who doesn't believe her. In my opinion, pain that lasts for more than 6 months and not controlled by typical over the counter pain medications needs to be evaluated. I believe that it is poor practice to treat someone blindly with a medicine without first diagnosing the actual problem. It is highly likely that the cause of her pain is endometriosis, especially if her pain is cyclical. A laparoscopic surgery can diagnose the presence of endometriosis and treat it at the same time by completely excising all the endometriosis. In addition, this would keep your daughter from the side effects of the birth control pill. If you and your daughter would like to avoid surgery, I still would not recommend the birth control pill. I believe that hormonal suppression can mask the progression of the disease which can affect future fertility. Instead, I would prefer that she has a consultation with an integrative medicine specialist to see how her body's inflammatory load can be reduced through personalized diet, supplements, etc. Hopefully with reduced inflammation, pain is reduced as well. I do feel, however, that the most effective way to reduce inflammation caused by endometriosis is to completely remove the lesions themselves.
I disagree that endo can be microscopic. Endo lesions can be extremely subtle, so surgical technique is very important. The modern optics in the laparoscope provide very high magnification of the tissue, but unless systematic and near-contact laparoscopic technique is used, disease will be missed. When this happens and pain persists, the patient is told her endo came back. But the truth is it didn't come back because it was never adequately removed. Surgeons who believe in microscopic disease may be less likely to thoroughly inspect every bit of the pelvis, because they reason, 'it's just going to come back anyway' and thus the patient enters a spiral of having surgery after surgery. I believe a very careful, thorough, painstaking approach to identifying and completely excising all disease is the superior approach, and, for the large majority of patients, a single surgery is all that is needed to take care of their endo.
Can I have surgery during my period?
Generally, yes. If the procedure includes hysteroscopy or other work inside the uterus, we prefer to schedule away from menses, if possible. But if it's excision of endo, operating during your period may actually be beneficial because the endo lesions are most obvious at that time.
I just had surgery. How soon can we TTC?
You can start trying as early as two weeks post-op, if you feel up to it. The old teaching of waiting 2-3 cycles is no longer true.
My doc wants me to try Lupron before having surgery. What about that?
Bad idea. Why would you use a powerful drug to try to treat something you don't even know that you have? Surgery first, to diagnose and treat all at the same time, then these drugs are not needed.