Misunderstood and Unsupported with Endometriosis

Last week, we talked about all of the ways that our network of endo warriors have felt supported or loved during their battle with the disorder. Today, we’re tackling the opposite question: what are some ways that you’ve felt misunderstood or unsupported? Often times, even with the best of intentions, support systems can miss the mark when it comes to helping those in need. As a friend and supporter of those with endo, it’s important to know some of the things to avoid when caring for your loved one.

Today, we’re sharing a continuation of our series on supporting women with endometriosis. For Endometriosis Awareness Month, we reached out to our network of endo sisters for their input. Who better to lend their expert advice on endo support than women and girls that are currently battling it? Read on for their input, and check back soon for our final post in this enlightening series!

As we collected responses to this important question, many of the women shared thoughts that fell into two categories: being misunderstood by their medical team, and being misunderstood by a loved one or family member. We’ve broken down their responses into those two categories below!

“My story is almost textbook. As a young girl, I loved all things medical and scientific. Having read about endometriosis is a family medical encyclopedia at the age of 14 I realised that my symptoms around my period were not normal, and in fact could well be endometriosis. 2 years into menstruation I already knew that my bleeding and pain were completely out of sync with all my classmates. Having approached numerous primary care doctors with my theory I was dismissed time and time again. I was “too young” to have endometriosis, I was “attention seeking”, I was “looking for days off school”. It was only when I was training as a medical scientist that I had the funds to ask for a referral to a gynaecologist privately. The doctor wrote on the referral letter that she felt it was not appropriate as there was nothing wrong with me. Countless visits to primary doctors and countless changes to different doctors all were met with the same response – that I was too young to have endometriosis. It was a disease of 30-something year old women trying to conceive. Certainly not in a teen who had read too much. Thankfully, I was listened to and diagnosed at that referral. In the 20 years since I have met with a large number of doctors and each and every time there is an opportunity to educate and update them about the condition. There have been many appointments where I have left frustrated and upset. It is heartbreaking to see old myths being offered as “treatments” or options. Young women are still being offered pregnancy and castration to this day. This, for me, is the ultimate misunderstanding and unsupportive part of endometriosis – the lack of education amongst the medical (and wider) community. I have seen progress in recent years, but we have a long way to go” – Kathleen King

“I feel misunderstood in two ways. Regular society, those who maybe I am the only person with endometriosis they know, feels like I had surgery it’s all fixed. You just find a person who takes insurance and its no big deal. But we know that endometriosis education even within the OBGYN speciality is lacking and a true excision specialist is hard to find. We also know that the reimbursement codes for endometriosis surgery do not reflect the skill and time it takes to dissect and excise endometriosis at its root. So, a qualified endometriosis specialist likely will be out of network. I also feel very unsupported within the pelvic pain community. Because endometriosis is multifaceted, it takes more than one thing to be well. I know and understand this as a pelvic physical therapist. I know and understand surgery, good surgery, plays a huge role in endometriosis. But I have often felt like an outcast and the black sheep because I preach that physical therapy and exercise matter so very much when it comes to pelvic pain. Endometriosis will trigger muscle spasms and issues with the fascia that women need physical therapy to help with. Repeatedly doctors wanted to due a hysterectomy for the pain. That doesn’t treat the cause of the pain and hysterectomy, while it has a role in treating adenomyosis and uterine disorders, it does not treat endometriosis. My pain is in the most private of areas, so please do not minimize me or humiliate me by trying to force something on me that does not treat the source of the pain and that I do not want.” -Dr. Sallie Sarrel

“The example that stands out to me the most right now is not just related to family and friends, but also medical providers. Endometriosis may cause infertility. Knowing this, one would think people would be sensitive when asking questions about when/if I plan to conceive. However, I am continuously asked (because of my age maybe) when (not if) I am planning to conceive. When I tell people that I do not plan to carry a child, I am met with judgement. First, I know my body and all that she’s been through. I have experienced life-threatening blood clots multiple times. I have been on synthetic hormones (oral and injected) for years at a time. I have no desire to put my body through these types of treatments again. Second, No one should judge me for these choices. It’s hurtful and unsupportive. I get this judgement from practitioners and loved ones. “You don’t know what you want yet, you’re still young”. I’m thirty. I know what I want.” -Dr. Arielle Denise Dance

“I have felt misunderstood when I am in the emergency room suffering with an excruciating amount of pain and the doctors don’t understand why the pain medicine isn’t working. I have also felt unsupported and misunderstood at times with school and certain teachers for missing class when I can’t get out of bed or not being able to do the work because I am too sick.” – Kate Schneider

“Throughout the journey to diagnosis I was told that it was “all in my head”, that the symptoms were actually a physical manifestation of depression or anxiety, was accused of being addicted to drugs by my parents at one point, and multiple other things. When I was prescribed narcotics for pain control, many people worried I would become addicted and were more concerned with that than the side effects of the drugs and the fact that I continued to have pain while taking them.” – Kate Priest

“Their confusion over pain flares that were not associated with my period.I was almost fired from a job because I called into work with short notice too frequently from my pain flares.” – Dr. Allegra Hart

“Sigh. Many ways, unfortunately. “Was I really in THAT much pain?” “Why did I need to see an excision specialist?” “It’s only a period problem.” “My aunt’s cousin’s neighbor’s sister’s friend’s mom had that – they (insert ridiculous statement here) and it cured them.” “Just have a baby – it cures it” (MYTH!)” – Rebecca L Gibson

““Until someone is in my shoes it is hard to understand what I go through. I constantly hear “go to school” and “suck it up and take some Advil” and “we all have things we have to do even when we don’t feel good.” This constantly makes my self esteem drop and anxiety heighten, things I do not need on top of pain!” – Michaela, age 15

“I think family and friends can become overwhelmed by endometriosis over time. As patients we experience feelings of anxiety and powerlessness over having endometriosis. I think those close to us share these same feelings as they see us suffer. Unfortunately, instead of identifying feeling anxious or helpless, the defense mechanisms of our loved ones sometimes kick in and denial, dismissal, anger, or guilt can be projected onto the patient who is already suffering. Phrases like, “Aren’t you better yet?” or “Your cousin Mary got pregnant back in the 80’s and it cured her endometriosis!” or “Doesn’t everyone have painful periods?” can be devastating for a patient to hear.” -Casey Berna

“Particularly when it’s so bad that I’ve had to call off from work – what boss understands taking a day off because of menstrual cramps? Not many. Or when I’ve canceled plans with family or friends. There’s stigma attached – that you’re just a wuss, a wimp, whining because of something that half of the world’s population goes through once a month. Endo is different.” – Lydia Bowers

“Some ways that I’ve felt misunderstood are when family and friends insinuate that endo is not that bad at Stage I because it does not do as much damage as it does in Stages III to IV. Endo is experienced differently by everyone, no matter the stage they suffer from. Therefore, it is instrumental that family and friends understand that a stage I endo warrior may very well struggle just as much as a stage IV warrior.” -Julia Sweeney

“I surrounded myself with supportive friends from a young age, and this has made all the difference in my being able to live with this illness. At the peak of my ill health, before excision, I remember having had to cancel plans with a newly made friend. Instantly I went from getting texts everyday to my phone calls not being answered. I learned quickly that this was not someone who deserved to be part of my tribe. If she wasn’t interested in my friendship when I was at my worst, she definitely wouldn’t get to have me at my best.” – Melissa Tison

The research on endometriosis is still developing, and that can make fully understanding the disease difficult. Unless they ask for your advice or medical guidance, just knowing that you support them is the best way to care for them. A simple text message, stopping by to see them when they’re not feeling well, or bringing them tea can make all the difference in the world. When in doubt, focus on supporting your loved one instead of trying to fix their problem – you never know just how much your support could mean. Tara and the BPP team

Hey Endo Sisters and supporters! When you shop Be Prepared Period, you can feel good knowing you’re supporting a business that supports Endometriosis research. Shop using the link below, and we’ll donate 5% of proceeds to the Endometriosis Research Center. This offer applies all year round – so you can give back while you order your monthly supplies.

Psst! Think you might have Endometriosis? Our free guide helps to separate fact from fiction. Click below to download it!