Endometriosis Treatments: What Works and What Doesn’t?

Christa Crawford, MA

drugs-pills-1418717-mAs you know by now, I’ve dealt with endometriosis since I was a kid. While I’m not exactly sure what causes it, I’ve got plenty of personal experience with both effective and ineffective treatments. With endometriosis, it seems that some treatments work for some women but not for others. There are other remedies that, despite continued publicity, don’t seem to work much for anyone. Other options seem extreme but can actually be incredibly effective. I’d like to share my experiences with these different treatment options, in case it helps a few women find their own relief.

Obligatory Disclaimer
I’m not a doctor. This is not medical advice, so don’t try to sue me if you overdose on anything or use it irresponsibly. Always consult your physician before beginning any medical treatment of any kind. I’m just sharing my own experiences.

Typical Treatment: The Birth Control Pill
If a woman goes to a gynecologist for menstrual pain, it is typical for the doctor to prescribe some sort of birth control pill. I was put on the pill at the age of 13, as it is widely accepted as an effective pain management option for sufferers of endometriosis.

How it Works
The pill is comprised of synthetic estrogen and progestin. While estrogen and progesterone play critical roles in a woman’s fertility and overall health, the hormones used in the pill are not identical to the hormones we create on our own. By manipulating these hormones throughout the month, the pill typically prevents pregnancy by inhibiting ovulation. The hormones also change the quality of the cervical mucus. In doing so, it prevents fertilization. The pill can also alter the quality of the endometrium, so that the lining of the uterus is unwelcoming to fertilized eggs.

So what are the implications for endometriosis pain? As the pill alters the reproductive hormonal cycle, it also slows and lessens the growth of the endometrium. It reduces pain because there is less uterine lining to shed. The pill slows the growth and spread of endometriosis, causing the implants to bleed less during a period. Typically, the result is less pain and lighter cycles.

My Experience with the Pill
The pill helped somewhat with my pain, but it did not take it away completely. For a while, I took Seasonale, which is a little different in that it only allows for four periods a year. Fewer periods did, of course, translate into less pain. Nonetheless, I still had to take huge doses of NSAIDs to get through a period; so it didn’t completely eliminate the pain. Eventually I started spotting continuously. After several years on the pill, I no longer felt it was helping to control the pain at all. At that point, I discontinued my use of the pill and began seeking other options.

the-pill-349767-mPros

Cons

  • Cannot be used if trying to conceive
  • Does not eliminate the endometriosis itself; Bandaid method
  • Pain typically returns after discontinuation of the pill
  • Alters healthy hormonal patterns in the body by way of synthetic hormones
  • Some women have religious objections to using the pill

Pain Management Drugs
If you go to CVS, you’ll see an array of drugs that promise relief of menstrual cramps. So which ones work, and which don’t? Although I’m basing this on my own experiences, most women I’ve spoken to have totally agreed with me when it comes to effective and ineffective pain pills.

How it Works
The mechanism behind a pain pill is different depending on the type of medicine. Tylenol (acetaminophen) works by raising the body’s overall pain threshold. Tylenol is typically safe in normal doses but can be toxic for the liver if the dose is too high.

Nonsteroidal Antiinflammatory Drugs (NSAIDs), including Aspirin, Ibuprofen, and Naproxen (Aleve), work differently. NSAIDs act on prostaglandins. Prostaglandins are chemicals in the body that encourage the uterus to contract and shed the endometrium during a period. At healthy levels, prostaglandins promote necessary inflammation in the body. A woman with endometriosis is thought to create excessive prostaglandins. The result is severe, unrelenting cramping in the uterus. By reducing prostaglandin production, NSAIDs reduce menstrual pain. NSAIDs can be hard on the stomach. In high doses, they can also cause respiratory problems for some people. I’ve experienced both stomach and breathing problems from taking too much Aleve, so it’s really important to be responsible. Even though it is sold over the counter, it’s still a drug.

Opioids (narcotics) include prescription drugs like Vicodin (hydrocodone), Dilaudid (hydromorphone) and OxyContin (oxycodone). As you probably know, these drugs are highly addictive and should be used carefully. Opioids work by attaching to opiate receptors in the body. They reduce pain by altering pain signals in the brain. They can be very effective for severe pain.

Pain Medications: What Works Most Effectively for Me
I don’t even bother with Tylenol, Midol, or Pamprin. Used responsibly, NSAIDs are the first line of defense against cramps. Specifically, I stick with Naproxen (Aleve). Aleve is especially effective in inhibiting pain-causing prostaglandins. If you really want to be prepared, buy the gel caps, as they work the most quickly. Personally, I don’t bother with Ibuprofen or any other NSAIDs. I go straight for the blue bottle.

AbnormalChartI suggest learning how to chart your cycle. There are tons of different methods, and I’m happy to help you out if you want more information on that. No, you don’t have to be a religious zealot to do this. It’s actually a great way to stay on top of endometriosis pain and fertility. NaPro doctors, whom I’ll talk about in a minute, can also use your chart to help diagnose hormonal issues. If you learn to chart, you’ll also learn when to expect your period. Why does this matter? Prostaglandin production amps up before your period starts, so that is the time to take precautions. The time to start taking Aleve is not when you are doubled over, barfing in the bathroom and writhing in pain. Start taking the Aleve one or two days before the onset of your period. Stick to the dose on the bottle, and take it with food. I find a little full-fat yogurt or cheese is best. 

No, seriously. Take Aleve with food. You will really, really mess up your stomach if you don’t. Trust me.

I get a specific feeling immediately before my period starts. At the very first indication of cramping, bleeding, or that vague-but-horrible-period-feeling, I take three Aleve gel caps with food and 1/4 of a Tagamet to protect my stomach. I do not wait. I do not pass go. I do not collect $200.00. Even if I’ve been regularly taking the Aleve in the day prior, I always, always take three at that moment. If I do so, I usually don’t run into any major cramp drama. After that, I take no more than two gel caps with food every five hours or so. Again, I’m not a doctor. I’m not recommending that you exceed the dose indicated on the bottle. I’m just telling you what works for me. After the first day, I reduce the dose to what is suggested on the bottle. Personally, my cramps are only horrendous in the first 24 hours of my period. By day 3, I don’t usually need any pain medication at all.

You’ll run into trouble if you wait too long to take Aleve. Take it earlier than you think you need to. Drop everything and just go take it. If you wait until you are nearly unconscious and throwing up all over your bathroom floor, it’s too late for Aleve to do anything at all. Even if you just wait out the cramps for half an hour (as I once did during a voice lesson in college), it might be too late. You’ll end up passed out in the bathroom. Resist the urge to desperately take twelve Aleve. At this point, you have go to to the ER for something stronger.

Speaking of narcotics, I don’t think Vicodin works on cramps. If anything, it just makes me nauseous. If the cramps are severe enough to require narcotics, Dilaudid is the quickest, most effective drug for me. Oral Dilaudid is okay, but the worst cramps respond best to the kind of Dilaudid they give you at the ER, which is through an IV. It doesn’t last very long, but it is really effective. So, if you (God forbid) find yourself at the ER, request Dilaudid. Stay at the ER until the cramps have worn off, in case you need more medicine. Then call a friend, because you won’t be able to drive home.

An Important Reiteration: Be Responsible with the Drugs
As I’ve already said, Aleve can do a number on your stomach. I once took too much Aleve on an empty stomach. I woke up with a horrendous burning pain in my upper stomach. I recovered, but it can cause stomach bleeding. Don’t pretend that you’re exempt from this risk. Be careful when you take Aleve.

Old School: The Hot Water Bottle
An old-fashioned hot water bottle or heat pack does wonders when combined with the smart use of naproxen. It also helps me with the anxiety for one reason or another.

Surgical Options and NaPro
While surgery seems extreme for a lot of people, it’s incredible what lengths you’ll go to if your pain is severe enough. After suffering from miscarriage and years of excruciating pain, I decided it was time to do more than just put a Bandaid on my uterus. I began researching surgical options, and I found some really amazing doctors in the process.

Laparoscopy
A laparoscopy is an outpatient surgery in which a small incision is made, usually through the belly button. The doctor uses a camera to view the organs. At that point, a concrete diagnosis of endometriosis can be made. During the laparoscopy procedure, many doctors choose to remove any visible endometriosis. This can be done by physically removing the implants (excision) or by burning them off with lasers.

Laparoscopic surgery for endometriosis does offer relief for many women. The problem is that most women experience a recurrence of the endometriosis and pain. I have spoken to many women who used laparoscopic surgery as a short-term pain fix and as a window of opportunity to get pregnant without miscarrying. I don’t personally see this as the most effective long-term treatment plan. I had a laparoscopy done so that my doctor could get a clear picture of what was going on prior to undergoing a more thorough surgery.

Laparotomy (Open Surgery)
From what I’ve learned, it is rather unusual these days to find a doctor who is willing and able to do an effective open surgery for endometriosis. I had open surgery in April of 2012. Dr. Theresa Stigen is a brilliant ob/gyn and surgeon. She did an incredible job and removed endometriosis from several organs. Her surgical technique is different from others in that it is more effective in preventing excessive growth of scar tissue (and endometriosis loves to grow on scar tissue). Recovering from the surgery was harder than I expected, and I didn’t really feel myself for about six months. But, almost immediately following the surgery, my cramps were hardly there. I still had to use a little Aleve, but I had a huge improvement in pain. This kind of surgery can offer long-term relief from endometriosis and improved fertility.

According to my surgeon, the chance of recurrence after a typical laparoscopic endometriosis surgery is over 90%. In contrast, the chance of recurrence after a thorough NaPro open surgery is around 7%. 

NaPro Technology: My Preferred Approach to Women’s Healthcare
When I was considering open surgery, I wanted to make sure I found the best surgeon out there. After devoting a disproportionate amount of time to reading about different surgical options and approaches, I realized that the only surgeon I would trust with such a huge job is a NaPro surgeon. NaPro surgeons are typically Catholic, and they eschew contraceptives and abortions. A lot of people have a visceral reaction to this and write them off immediately. Regardless of your religious beliefs or lack thereof, I would seriously consider finding a NaPro doctor. They are at the forefront of effective women’s health, and they really do a great job of combining holistic knowledge of the woman’s body with more Western treatments. I recommend at least reading about NaPro Technology. It has totally changed my life. So while you might object to pictures of the pope hanging in the doctor’s office, these doctors know what they are doing and can really help with endometriosis and infertility.

Improve Immune Function: Low Dose Naltrexone
After my surgery, I asked Dr. Stigen what she recommends to further decrease my chances of recurrence. She recommended low-dose naltrexone. LDN has traditionally been used to treat substance dependency, but it has been gaining popularity as a treatment for autoimmune disorders including HIV and multiple sclerosis. Impaired immune function may be one cause of endometriosis. Low-dose naltrexone binds to opiate receptors in the brain. This signals the body to create more endorphins. This results in enhanced immunity and decreased autoimmune function. I’ve never taken LDN myself, but I am interested in its effectiveness as an endometriosis treatment.

Dietary Changes
There are tons of different endometriosis diets out there. Some of them seem way off to me because they emphasize foods like nuts, which are laden with omega-6 polyunsaturated fats. Omega-6 fats encourage inflammation. Rather than going nut crazy, it makes more sense to me to minimize the omega-6 fatty acids and balance them out with omega-3 fats. I wrote more about that here (and there’s a recipe too!). If autoimmunity does indeed play a role in endometriosis, then gut irritants like grains (specifically gluten), legumes, and dairy may contribute to the problem.

red-grapefruit-1-1427674-mPersonally, I eat a modified paleo/primal diet comprised of real food. Contrary to popular belief, the paleo diet does not have to be the beef-only, anti-carb, caveman diet you’ve seen on TV. It is actually a well-balanced approach to eating that emphasizes real food and, if done correctly, can decrease systemic inflammation in the body. The jury is still out on whether or not this directly impacts endometriosis and the associated pain. If nothing else, it’s better for my overall health and well-being.

Alternative Treatments and Anxiety Management
Here are just a few of the alternative treatments I’ve tried:

  • Acupuncture
  • Massage
  • Chiropractic care
  • Chinese medicine
  • Rolfing
  • Nutrition Response Testing and supplementation
  • Meditation/ Prayer
  • Mind-over-matter approach: “I don’t need any painkillers! I got this!” (This one is particularly ineffective and always lands me in the ER on Dilaudid.)

I want to elaborate on the mind-over-matter approach. This is a concept that is typically pushed by women who have never suffered from real menstrual pain. Some of these women try to pin menstrual pain on unnecessary fear or anxiety. In fact, the opposite is true. The pain comes first, and the anxiety follows. Please do not let anyone tell you otherwise or make you feel like you’re being overly dramatic. If you’ve dealt with the debilitating pain of endometriosis, associated anxiety is totally understandable.

NaPro treatment (surgical and otherwise) combined with the smart use of pain medications and a clean diet have been the most effective treatments for me. That said, it is important to manage the anxiety that comes along with endometriosis. Left ignored, it can become debilitating and turn into full-blown panic attacks. Anxiety also amplifies the very real pain that is there. I think this aspect of endometriosis treatment is highly subjective. I recommend finding what works for you to minimize anxiety.

Are you still reading this?
If you made it this far into my post, chances are you are looking for answers about your endometriosis. If that is the case, I am so sorry that you are dealing with that kind of physical and emotional pain. While I don’t have all the answers, I hope this was helpful as you seek your own relief. Did I leave anything out? Please share your own thoughts and advice.

If you missed them, you can read my other posts about endometriosis here:
Endometriosis: It’s About Time Someone Talked About It
Endometriosis: What it is and What Causes It

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One Response to Endometriosis Treatments: What Works and What Doesn’t?

  1. Linda Sommer says:

    Well-done with humor! I l love the “pope’s picture hanging in the office!”

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