Battle #1: the challenge of getting an accurate diagnosis
Even getting your diagnosis of endometriosis can be a challenge. It is a disease that can be widespread in your pelvis and even in other tissues, misleading doctors to think of other explanations for your pain:
- Endometriosis is tissue like the lining inside your uterus (womb), but unlike that tissue—which is shed monthly and discarded into the outside word—it can be found anywhere in your pelvis and even outside of your pelvis, that is, other parts of your body.
- Endometriosis is most commonly found near the ends of your fallopian tubes, near, on, or even in your ovaries, which is why many feel it gets there from that inside lining going up your tubes and exiting out of the ends of your tubes, implanting where it falls.
- It can implant on your bladder, giving you bladder issues; on your bowel, mimicking inflammatory bowel disease or irritable bowel syndrome; in your ovary, creating ovarian endometrial “chocolate” cysts. These and other presentations can be confusing to those doctors who aren’t attuned to endometriosis.
- Not only does it cause problems by creating mechanical obstructions to conception (e.g., blocking your tubes), it also creates a second obstacle to conception by putting your reproductive tissues into an inflammatory state, the biochemistry of which sabotages the entire conception process. For conception to occur, the environment must be just right, and the environment created by endometriosis is not very friendly for this.
In fact, many patients who are finally diagnosed correctly at NYCEndometriosis have already been to a handful of other doctors who told them it was a bladder issue, an intestinal issue, a problem with ovarian cysts, or even that their pain was all in their heads. One can only imagine the frustration that makes many patients give up.
Diagnosis of endometriosis is also difficult because it is a surgical diagnosis: it can only be diagnosed when it is actually seen inside your pelvis with surgery and the diagnosis is verified by biopsy. Since surgery is traditionally seen by many to be a last resort, it is often done last, when it really should reverse the usual sequence of investigation. Otherwise, the diagnosis of endometriosis is delayed, which can cause the clock to tick on without a diagnosis. So, when the tragedy of endometriosis is figured into the formula of when to operate and when not to operate, the traditional “last resort” thinking becomes irrelevant. For endometriosis, the diagnosis is made with surgery, whether it’s done first or last.
Thus, getting your diagnosis of endometriosis ends your first battle.
Battle #2: once you are diagnosed
Once you’ve been diagnosed correctly, the next battle begins, because endometriosis varies widely in how severe it is, how widespread it is, and to what extent it impacts your life negatively (pain and infertility). Even “mild” cases which don’t cause significant pain can cause infertility. This is why, even without symptoms of endometriosis (below), it should be suspected in those who are unable to become pregnant after 6 months of trying. For those with symptoms, the following are the most common:
- Painful periods (severe cramping)
- Heavy periods
- Pelvic pain
- Painful bowel movements, constipation, diarrhea
- Painful urination
- Painful intercourse, sometimes delayed until after intercourse
- Pain with insertion of tampons
- Abdominal pain, bloating, swelling
and the devastating condition of
The reason the diagnosis means you’re undertaking your next battle is because endometriosis can be difficult to get rid of. No one method is guaranteed, but one method has the best chance—minimally invasive gynecologic surgery (with the da Vinci robot that Dr. Bozdogan of NYCEndometriosis uses). The other methods are marginally—if at all—successful and when there is improvement, the endometriosis persists, meaning the same problems will likely be back. For those who are treating their endometriosis for infertility, this means a delay in precious time, when infertility is a time-sensitive urgency.
- Pseudopregnancy: oral contraceptives. Birth control pills may mask the symptoms of endometriosis by inducing a steady state of hormonal suppression. (Pregnancy can do the same, but since half of endometriosis patients have infertility, waiting to get pregnant to treat endometriosis is backwards thinking and a waste of valuable time.)
- Pseudomenopause: there are hormones which can overstimulate your glands such that your ability to make estrogen and progesterone are temporarily exhausted, much like the state of menopause in which your ability to make them is permanently exhausted.
- Anti-estrogenic medication: instead of indirectly decreasing your ability to make estrogen (pseudomenopause), substances called aromatase inhibitors directly interfere with the production of estrogen. Again, a menopause-like state.
- Male hormones: anti-estrogenic. However, the side effects—breast size decrease, hairiness (hirsutism),
While some may find it heroic to avoid surgery by using these methods, the reality is that the clock is ticking when problems persist. Additionally, there’s a benefit to making the diagnosis with surgery in that it can be removed at the same time. This is the philosophy of Dr. Bozdogan.
The options for treatment may change in priority depending on whether seeking pregnancy is part of the plan. Even if it isn’t—right now—one must fear the progression of untreated endometriosis for one’s future pregnancy plans, which begs addressing it now rather than later.
Battle #3: the expectation
Assuming one can be treated with surgery, then the next battle is an internal one—one of emotional ups and downs in which awaiting pregnancy is like torture, one month at a time. This is where it’s most important to choose a doctor who has the most experience, because they are the ones with the best success rates. Dr. Bozdogan has done thousands of these types of surgery. Even if you’re not seeking pregnancy now, having any abnormal pain is simply unacceptable.
When the war is over
If your endometriosis persists in spite of the best doctor, the best treatment, the best type of surgical technique and technology, all is not lost. Assisted Reproductive Technology (ART) can be the next important addition to your treatment by offering you IVF (in vitro fertilization), which has an excellent track record for those with endometriosis. Dr. Bozdogan at NYCEndometriosis is associated with a very powerful network of experts who specialize in all aspects of ART.
There’s no time like the present. Your future may depend on it. Call for an appointment at