Endometriosis is a disease that shows no mercy. It can attach to and invade various body tissues and organs. While it is considered a gynecological disease, severe cases of endometriosis extend to other areas such as diaphragm, bladder, and bowel.
Endometriosis specialists are not formed overnight. It takes a large amount of time and practice to be considered a specialist as the disease has many different appearances, locations, signs, and symptoms.
An endometriosis specialist should be able to provide symptom management before surgery. In addition the specialist needs to be able to recognize the different manifestations during the operation. A patient that remains symptomatic after surgery should be given options and recurrent endometriosis should be discussed, rather than dismissing the patients.
I had previously posted an article with “questions to ask your surgeon.” Unfortunately, until a specialty is created for endometriosis, with set requirements to be considered a specialist,-we must rely on ourselves and being our own advocates when choosing a surgeon. While some doctors are more skilled than others, it is important to find the right treatment and surgeon for your individual case.
Some surgeons work with other medical professionals in order to treat complex cases: such as a colorectal surgeon, urogynecological surgeon, or thoracic surgeon. This does not mean that the specialist has a lower skill set by any means. While a group of surgeons are now using robotic surgery, some have opted to continue using traditional surgical techniques. This does not mean that one is better or more qualified than the other. Surgery is not based on the tools used, but the hands controlling the tools and the knowledge behind those hands.
Surgical Tips: No doctor can guarantee a 100% chance of success with surgery. Excision (completely cutting the endometriosis out of the body) is currently supported as the best treatment for endometriosis. Endometriosis cannot be diagnosed without surgery.
Hysterectomy is not nearly as successful of a treatment as was previously thought for endometriosis. Furthermore, endometriosis that is outside the ovaries and uterus will not be silenced or treated with a hysterectomy. Patients that do opt for a hysterectomy should be sure to ask that an excision ‘clean-up’ of the endometriosis found will also occur during the surgical intervention.
Ask your doctor if he takes photos or video during the surgery as this may be helpful in the future.
Treatment tips: There has been no pharmacological treatment that ‘cures’ endometriosis. It is incurable. Treatments are not 100% successful and work differently for each patient as most treatments are hormonally based. The goal of pharmacological treatments are to slow down or stop the progression of endometriosis and/or symptom management. However, these treatments do not cause the endometriosis to disappear.
Treatments that may be offered to patients include oral birth control pills, intrauterine devices (Mirena or NuvaRing), intradermal devices (Implanon) and GNRH agonists (Lurpon).
Lupron is widely discouraged among patients. It was originally created for the treatment of advanced prostate cancer. Lupron carries many side effects that affect a large amount of the population. While it does have positive effects on some women, many patients are against Lupron due to the lack of evidence in treating endometriosis, the side effects, and the lack of symptom repression from Lupron. It can have long term and lasting side effects. GNRH agonists, such as Lupron, may be ingested orally or injected into the system.
There are many different types of oral contraceptives that include progesterone only pills (POP) and estrogen based pills. IUDs also come with different treatment options-some do not contain any hormones while others do offer a hormone treatment. These treatments and their side effects should be further discussed with your physician.
Pain medications may also be prescribed for symptom management prescribed by a surgeon or a pain management specialist.
The most important thing to do as a patient is to ask questions and educate yourself on the disease, the surgical options, and the pharmacological options. A patient should be able to speak openly and discuss concerns with their surgeon. Trust is key.
I suggest for patients to track their symptoms to be able to inform their physicians as best they can about their case as well as to keep copies of all medical records related to endometriosis, previous imaging, and previous treatments.