Understanding Endometriosis & It’s Effect on Mental Health with Dr. Tayyaba Ahmed

Apr 4

Raising awareness is a key part in normalizing and helping those who live day to day with chronic illnesses. It’s important to understand that just like mental health some illnesses cannot be seen with the naked eye, and therefore get overlooked. This is what many individuals with endometriosis, something you cannot physically see, experience daily.

Endometriosis effects 1 in 10 reproductive-aged individuals (aged 12-52), which is an estimated 200 million individuals worldwide. You may have heard of endometriosis as celebrities like Lena Dunham, Padma Lakshmi, Olivia Culpo, and Chrissy Teigan have publicly spoken out about their experiences with it. So, what is endometriosis exactly? Well, I thought that I would call on an expert in the field to discuss not only what this disease is but how it can impact someone's physical and mental health.

Dr. Tayyaba Ahmed is an NYC Pelvic Pain Physician, and wellness advocate who uses her Instagram platform to speak on and bring awareness to pelvic pain and endometriosis. Dr. Ahmed was generous enough to speak with me about what she sees as a physician helping individuals with endometriosis, how this disease can impact one's mental health, and what we can be doing to support both as physicians and therapists. Read below to learn more about this disease, and why raising awareness is so important.

Q: Can you explain what endometriosis is and what you see in your practice?

A: Endometriosis is a disease in which tissue that looks similar to tissue in the uterus or the endometrium, is implanted outside of the uterus. It is not the same thing as endometrium, it’s tissue that looks similar, which is why people get confused because they hear endometriosis and think it’s the endometrium. It’s similar, but it’s implanted outside of the uterus. Essentially, it’s now being seen in fetal cells, so we now know it’s more genetic and not from the previous theories of retrograde menstruation. We know that it is genetic, and from what I’ve seen passed down through maternal lineage. That’s not to say that I haven’t seen someone with their dad’s mom having painful periods, but what I’ve seen mostly is a history of painful periods or diagnosed endometriosis in the mother, grandmother and aunts.

In my practice I see both men and women, and about 60% of my patients are females, and within that 60% I would say 30-40% have endometriosis. If I had to, I would say close 50% of my patients are endometriosis patients. The thing about endometriosis, is that not all of these patients have been officially diagnosed either because it is hard to diagnose.

Q: How do you see endometriosis effecting patients' mental health?

A: A lot of people with endometriosis may start presenting with anxiety related to the fact that they now think there is something wrong with them, but they don’t know the diagnosis yet. They feel like there's something wrong with them, and no one is giving them validation of their symptoms, and so that creates a lot of anxiety and depression. And that’s for people who aren’t diagnosed with endometriosis yet. Then there are the people who are diagnosed with endo that have a hard time grasping the diagnosis, and understanding that they may never get fully better as there is no cure.

That being said, there is a ton of anxiety and depression that goes along with having painful sex, urinary symptoms, and being able to leave the house without having to worry about their bladder, or just period pain or cramps, and how they’re going to function if they start having abdominal pain when they are out of the house. Just simple things, it really can be debilitating on their emotional life, their physical life, and with their partners.

Dating can be really hard for endometriosis sufferings because disclosing information about health can be daunting. For some women they have had a hysterectomy and discussing this early on can be difficult. There’s such a disconnect with people who don’t have endometriosis and do not recognize that endometriosis is an invisible illness. Because of that they can often feel isolated, and they feel like their symptoms aren’t validated by their friends or family. Or their family will tell them ‘it’s just a painful period, get over it’.

They may not have started with anxiety or depression, but now they have it because of all of the runaround that they had their whole life. And then also being told you have anxiety [and] or depression comes with it’s own stigma and taboo. So, they may not be seeking mental health help because they see it as having a physical problem and not a mental problem.

One thing to understand too is central sensitization, which is essentially when your brain feels like you’ve been in pain so long that your brain does not know how to feel normal anymore. For instance, if I punched you in your arm, and if you’ve never been punched in the arm, your body will respond quickly, and will send signals to your brain saying ‘it’s okay, calm down, let’s relax’. But when you’ve been in pain for 20 years, your brain doesn’t respond the same way, and a lot of people don’t understand that. A lot of doctors will put people on medication, and patients will say ‘but I don’t have a mental health problem’, but a lot of these drugs overlap between endo and anxiety which helps because it can help the pain and retraining the brain while also helping with the anxiety and the depression.

Q: Do you see that for women of color it’s harder to get a diagnosis or harder to be heard in this?

A: 100%. The reason I started my Instagram, is because when I first started I only saw Caucasian women and even in the EndoWhat documentary they call it, ‘Endometriosis, a white woman’s disease’, but that’s because only white women could afford to get treatment. But I knew that there had to be brown women who had endometriosis. I had one patient who flew from Pakistan to come see me, and I just knew that we were missing way more people than that. When I do the math, with the number of people I see, I totally recognize there are way more Caucasian women coming in.

Because of the inequities in healthcare, a lot of people don’t trust doctors, and honestly you see it even in regular doctors who are misdiagnosing endometriosis daily. There’s definitely going to be a subset of people who lack trust in healthcare. For years patients are gaslit about their symptoms so it is no surprise that they have distrust in doctors.

Q: What can individuals who have endometriosis do to manage their pain as well as take care of their mental health?

A: I think there’s a huge portion of pain that is related to mental health. For example, even when you treat the pelvic floor and things get better there, the pain is still there because it takes a while for your brain to catch up to where your pelvic floor is. It takes awhile for it to match up because these signals have been going on for years. So medication wise, that is where I would recommend nerve medicines (which some patients don’t feel comfortable using). In addition, I would say going to therapy helps, meditating, yoga, acupuncture, abdominal massage (and learning to do it yourself), pain creams, and trying to do different things to remind your body of what it is like not to be in pain.

Therapy is a wonderful treatment for pain. Therapists are really great, they can teach Cognitive Behavioral training, as well as if there is trauma or sexual trauma there connected to the diagnosis. You would be surprised at how many people I see that experienced trauma due to the difficulty in getting a diagnosis. The whole process can be traumatic.

Q: What can providers (both mental health and physicians) do to help individuals who have endometriosis?

A: Generally speaking, most people go to a GI doctor, urologist, or gynecologist, and they are going to these people but they are not necessarily sending them to the right people (like pelvic floor physical therapy), or experience having to beg to be heard. So, it’s really about awareness, the more awareness there is about endometriosis the more these different types of providers can provide [mental health providers as well].

Resources to learn more and find support: