Endometriosis is a condition in which endometrial tissue grows outside the uterus, affecting the ovaries, fallopian tubes, and other tissues in the pelvic cavity. Common signs and symptoms of endometriosis include excessively painful periods, pain during intercourse, lower back pain, painful urination, and infertility. Many people also experience weight gain due to their endometriosis and certain endometriosis treatments. Here are some explanations of how endometriosis can contribute to weight gain and what you can do about it.

What Causes Weight Gain in Endometriosis?

The answer to this question is not simple. Endometriosis and endometriosis treatments may cause weight gain in some people and weight loss in others. The condition can cause bloating — sometimes described as “endo belly” — that can contribute to weight gain, increased belly size, and dissatisfaction with physical appearance. This type of weight gain is due to fluid retention, which can cause bloating and edema (or swelling) — often in the legs, feet, and hands. Weight gain may also be a side effect of certain medications.

Causes of fluid retention and weight gain in endometriosis include:

• High levels of estrogen
• Progestin-only birth control
• Progesterone-containing intrauterine devices (IUDs)
• Medications such as Danocrine (danazol) and Orilissa (elagolix)
• Hysterectomy
• Constipation or irregular bowel movements
• Decreased physical activity due to symptoms of endometriosis

MyEndometriosisTeam members have reported that bloating can feel like weight gain. “No matter how much I diet, my tummy looks so round. I’m not losing weight and I’m really frustrated,” wrote one member.

Some members have reported a weight gain of 10 pounds from using Orilissa, which reduced estrogen. “Bust, hips, and thighs are bigger after less than three weeks,” shared one member. “I think that’s what threw my hormones completely out of whack,” wrote another.

One member on a 15-milligram dose of the oral contraceptive Norethindrone (norethisterone) said they experienced “a ton of weight gain, worsening pain, and menopausal symptoms.”

Should You Stop Treatment To Stop Weight Gain?

The answer to this question is simple: No, you should not discontinue any treatment without first consulting your doctor. If you cannot tolerate weight gain due to endometriosis treatment, then you should explore other treatment options with your health care provider. Stopping treatment early can lead to relapse of endometriosis symptoms.

If you have significant weight gain with treatment that isn’t clearly related to specific medications, your doctor may want to check for other causes. One such cause may be polycystic ovarian syndrome, a hormonal condition in which the body produces excessive amounts of androgen (a type of hormone). Other conditions that contribute to endometriosis may also be the culprit, such as estrogen dominance. Estrogen dominance — characterized by increased estrogen levels compared to progesterone levels — can cause weight gain and also make your endometriosis worse.

How Can You Lose Weight With Endometriosis?

Depending on what is contributing to your weight gain, there are different ways to pursue weight loss with endometriosis, including certain lifestyle changes:

• Discontinuing treatments that cause weight gain (under a doctor’s supervision)
• Finding treatments that control your endometriosis and reduce inflammation
• Managing chronic pain
• Exercising (or increasing physical activity)
• Maintaining an anti-inflammatory diet
• Using an elimination diet to identify what foods trigger your symptoms

Some MyEndometriosisTeam members report that their weight gain was temporary and they lost weight after stopping drug therapies. “I gained about 10 pounds in a month (then the weight gain tapered off),” wrote one.

Diet and exercise have not helped some members lose weight. “I’m working out and eating less with no luck,” said one. “I’ve been trying to diet literally all year and it hasn’t helped,” said another.

Some members have reported that they actually lost weight during such treatments as Mirena (levonorgestrel), laparoscopic surgery, or a change in prescription. “When I had an IUD, it really helped. Most recently, I was on the pill and IUD, and had a consistent low weight, even with bad endo. I usually put on weight then lose it post op,” said one member.

Let your health care provider know if you are experiencing unusual weight gain or weight loss, especially after starting new treatments. You should also seek medical advice before making drastic dietary changes, such as trying an elimination diet.

Endometriosis can affect how you look and how you feel about yourself. It can also make changing how you eat and exercise difficult. Controlling your endometriosis symptoms can be difficult, but it may be possible to find effective treatments that help control your weight, allowing you to take back more control of your disease, your health, and your self-image.

Talk With Others Who Understand

MyEndometriosisTeam is the social network for people with lymphoma and their loved ones. On MyEndometriosisTeam, more than 119,000 members come together to ask questions, give advice, and share their stories with others who understand life with endometriosis.

Are you or someone you care for living with endometriosis? Share your experience in the comments below, or start a conversation by posting on your Activities page.