For many women living with endometriosis, receiving an accurate diagnosis took years. If you’ve been managing your symptoms on your own for a long time, you might find it challenging to trust a new doctor. However, a strong relationship with your gynecologist is important to help you manage your endometriosis.
You can set the tone for this new relationship from your first appointment. Jot down your questions before the meeting. Take it slowly and have the courage to ask whatever is on your mind. It does help to do online research from reliable sites, so you can ask questions that are relevant.
This short discussion guide can help you plan for your first visit. If you find it helpful, feel free to print it out and bring it with you.
1. Why do I have endometriosis?
No one knows exactly what causes endometriosis. Some of the tissue that normally lines your uterus somehow begins growing in other parts of your body, usually your pelvic area. During your menstrual cycle, this tissue grows just as if it were part of your uterine lining. However, because it’s not inside your uterus, it’s not flushed out of your body the way normal tissue is during your period.
Researchers have many theories for why this happens. Menstrual blood may flow back through the fallopian tubes and out to other areas of your body. Hormones may change tissue outside the uterus into endometrial tissue. It may also be the result of an immune system reaction. You might be born with this tissue in those places, and when you go through puberty, the tissue grows and responds to hormones.
There are risk factors for the development of endometriosis. According to the Mayo Clinic, you’re more likely to have endometriosis if a close relative such as a mother or sister has it. Women who experienced puberty early, or have short menstrual cycles or an abnormality of the uterus, are also at greater risk.
No matter which theory is correct, be aware that you did nothing to cause your endometriosis.
2. Is there a cure for my condition?
There is no cure for endometriosis. It’s managed over time. Treatments help stop the condition from getting worse. According to the American College of Obstetricians and Gynecologists, even the most radical treatments don’t provide any guarantee the endometriosis won’t come back.
However, there are a number of ways you and your doctor can work together to ease your symptoms. It’s in your power to manage your overall health to reduce the impact of endometriosis on your life.
3. How can I manage my endometriosis?
Your doctor should discuss treatment options with you. The right options depend on how bad your symptoms are and your phase in life.
Hormonal treatments, such as birth control, are for women with moderate pain. Gonadotropin-releasing hormone (GnRH) agonists cause a kind of temporary menopause, but you may still be able to get pregnant.
Surgery is an option for women with severe pain. Your doctor may remove the lesions that cause endometriosis pain. As a last resort, you and your doctor may agree to have your uterus removed. One of the problems with the surgery is that not every cell can be removed. So some cells that are left behind respond to hormones and grow back.
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4. Can I still have children?
Many women with endometriosis can get pregnant and have healthy babies, but the condition does increase the risk of infertility. Among women who experience infertility, about 20 to 40 percent have endometriosis, according to UCLA Health. The condition may injure the fallopian tubes. It can also cause inflammation in reproductive organs, leading to problems getting pregnant.
Your doctor should help you find a treatment plan that works with your desire to have a baby. Hormonal treatments and surgery should be assessed while taking into account your reproductive choices. You will be encouraged to have your children sooner, rather than later. Waiting may mean that more damage is done to your fertility. Endometriosis can get progressively worse with time.
5. What about intimacy?
Many women living with endometriosis have pain during sexual activity, especially penetration. Talk with your doctor about your concerns. They may be able to advise you on how to discuss the topic with your partner, if necessary. You may also seek the help of another kind of medical professional, such as a counselor.
You and your doctor should discuss overall pain management. Over-the-counter pain medications, such as ibuprofen, may help. Unlike hormone therapy or surgery, pain medications only mask symptoms, so you should not rely on them too much without discussing it with your doctor. Your doctor may have suggestions, such as certain nonnarcotic medications, to ease pain.
6. Where else can I get support?
Endometriosis is a deeply personal condition. It can affect all aspects of your life, including your relationships and family planning. You may receive emotional support by speaking with others living with endometriosis.
Your doctor may know about support groups to help you. They may also refer you to other experts for issues related to your condition, such as infertility, chronic pain, or relationship intimacy.
If your symptoms are causing you stress, you may find it helpful to speak with a qualified therapist.
7. How can I contact you if I have questions?
Don’t worry if you think of things to ask after you leave the doctor’s office. Sometimes your doctor’s advice brings up more questions. Your symptoms, life goals, and partnership status all change over time. Since endometriosis is a long-term condition, you may need a regular point of contact for medical advice.
Ask your gynecologist how to connect if you need help. Your doctor may give you guidance on how to make follow-up appointments and when to do so. Additional reading material can also help you understand how the condition may affect your life. If you like, ask for photocopies you can read on your own time so you don’t feel rushed.
Many people are nervous about asking personal questions during doctor’s appointments. Remember that your gynecologist is there to help you get the medical care you need. They should guide you and support you through all phases of treatment. Endometriosis is a serious condition, and you’ve already come a long way to seek medical advice and get a diagnosis. You can be empowered to take control of your own health, one question at a time.