How to Start a Conversation With Your Doctor About Endometriosis

One of the most common stories told by those who have dealt with endometriosis is the challenge of getting a diagnosis. Doctors often don’t even think of it as an explanation for the symptoms commonly associated with endometriosis. Being your own advocate and approaching your physician about the possibility can often be a quagmire. Doctors don’t like being told what to think when it comes to diagnosis. Often they will dismiss you with a “Don’t use Dr. Google” comment without giving any consideration to the fact that maybe you have done your own research and are on to something.

With this in mind, it seems useful to share some of the specific symptoms I experienced due to endometriosis that baffled my doctors, and some suggestions for how to get the proper medical attention and care that you deserve. Please note: I am not a medical practitioner and I understand that everyone experiences endometriosis differently. This is simply my own lived experience and what I wish I had known sooner so I could have had a better quality of life during my late teens, 20s and 30s.

Endometriosis Symptoms to Look Out For

Many of these symptoms can be indicative of numerous different medical conditions. But in combination, they may be suggestive of endometriosis.

Irregular periods

While amenorrhea is common for athletes or those with anorexia, my periods were irregular on and off even when I was not exercising a lot or restricting my caloric intake. In an attempt at regulating my periods, I tried everything from acupuncture and supplements to seeking the help of an herbal specialist who gave me a cabinet full of disgusting concoctions designed to rectify whatever it was that was causing the irregularity. Needless to say, none of these approaches worked to correct the problem.

Extremely heavy periods with debilitating cramping and frequent large blood clots

It’s hard to establish what a “normal” period is since every woman is unique, but if your period lasts more than a week, and is so heavy that you are having to replace your tampon or feminine napkin every hour or risk bleeding through your clothing, you may want to bring this up to your doctor. Additionally, some cramping is fairly common but can generally be managed with over-the-counter pain medication and a heating pad. I was taking prescription pain medication and still couldn’t get out of the fetal position due to the pain for the entire duration of my cycle, which often lasted up to 10 days, leaving me exhausted, anemic and unable to do anything. And, while some clotting is common for many women, large frequent clots may be a red flag that something more serious is going on.

Infertility

If you are having trouble conceiving and there is no clearly identified medical reason that either you or your partner cannot conceive, endometriosis may be at play. My gynecologist who finally diagnosed me told me that most of their patients with severe endometriosis have difficulty conceiving due to the amount of scar tissue left behind by the endometrial lesions.

Abdominal bloating and discomfort

I had always attributed this to my irritable bowel syndrome, but, in fact, a lot of the pain and swelling I was experiencing was connected with my endometriosis, not something gastrointestinal. The endometrial lesions caused inflammation that radiated pain into my abdomen and sometimes resulted in constipation alternating with diarrhea, only exacerbating my discomfort, particularly during my menstrual cycles.

Frequent bladder discomfort, urgency, pelvic floor dysfunction

All of these symptoms can again be signs of other medical conditions, but the scar tissue left behind by endometrial lesions can cause pain and frequency issues with urination that mimic an actual bladder infection. What I thought were constant recurring infections requiring antibiotics were actually attributable to the scars on my bladder. In hindsight I likely took antibiotics far too frequently for something that didn’t require them, something many physicians now warn is ill-advised. While I still have some residual issues with this from left behind scar tissue, a lot of it has been resolved by my laparoscopy and subsequent hysterectomy where they removed a lot of the scar tissue from my bladder.

Painful sex

This is an uncomfortable topic to discuss, especially for people with a sexual abuse history like myself. While there are perhaps other contributing factors to painful sex that may be related to the emotional effects of trauma, again, endometriosis can affect the vaginal canal and therefore may cause vaginal sex to be uncomfortable at best and intolerable at worst.

How to Discuss Endometriosis With Your Doctor

Make sure you are comfortable with and trust your doctor

This goes without saying, but particularly where gynecological issues are concerned, it is absolutely crucial to find a doctor you feel 100% comfortable talking to about all aspects of your gynecological health, including sex and sexual dysfunction. I specifically needed a female doctor to feel safe due to my sexual trauma, however, each person is different. Additionally, it may be helpful to discuss this with both your primary care physician and gynecologist. If both of them are involved, you may find it easier to get appropriate and timely treatment.

Thoroughly document your symptoms

This includes the length of, pain level and any other important details associated with your menstrual cycle. The more specific information and consistent pattern of symptom frequency you can present, the less likely they are to dismiss you. It may help to create a chart noting your daily symptoms and when they flare, noting your pain level on a scale of 1-10, 1 being minimal to 10 being the worst pain imaginable.

Make sure your doctor isn’t affiliated with a hospital or medical organization funded by a religious institution

At the risk of offending someone which is not my intention, I specifically had to deal with a doctor who refused to allow me to get a hysterectomy because it conflicted with his religious beliefs and those of the managing institution of the clinic he worked for. If I had this advice when I was going through treatment in my late 20s, I would have recognized the situation and sought a second opinion from someone else not within that institution. This may also affect coverage for treatments like birth control, which is commonly prescribed as a way of managing endometriosis.

Don’t take no for an answer

If your doctor ignores you or negates your suspicions that you have endometriosis, don’t give up. Persistence pays off. If one doctor won’t listen, seek counsel from another. Nobody knows your body better than you do. If you sense something is wrong, pursue it. Nothing frustrates me more than hearing stories from individuals whose doctors disregarded their symptoms or suggested they were somehow imagining them. This is particularly common with chronic illnesses like endometriosis and even more common with illnesses that typically affect women, partly because women’s voices and unique needs are often misunderstood or discounted.

And one final note about getting treatment for endometriosis — don’t wait. So often women suffer in silence with this condition for decades. You don’t have to. Many new therapeutics are being developed to manage the symptoms of endometriosis and new diagnostic tools are becoming standardized that can make getting a proper diagnosis quicker and less invasive.