We live in a WebMD world. It’s cheaper, easier, and more convenient to google our symptoms. Unfortunately, we also live in a world where it’s cheaper, easier, and more convenient for doctors to throw medicine at our symptoms than to actually pinpoint the source of the problem. It is your doctor’s job to diagnose you when you go to them – but it is your responsibility to advocate for yourself and demand a certain quality of care.
I used to be of the mindset that I would deal with physical problems when they got bad enough to land me in the hospital. This is why I spent a week in the hospital for a ruptured appendix instead of one day for a routine appendectomy. I came out of that okay…until I learned last year that the adhesions from that surgery actually facilitated the growth and spread of my endo. Now I’m pretty mad at my 12-year-old self for not speaking up sooner.
To get the proper treatment, you have to start with a proper diagnosis. This is just as much the case for endometriosis as it is for any other disease – despite what your OB/GYN might imply.
See More: https://topendodoc.com/2017/11/20/blog-8-what-are-the-consequences-of-delaying-the-diagnosis-of-endometriosis/
The average time it takes a woman to receive an endometriosis diagnosis is TEN years. Many women see several different specialists before finally discovering the right answer.
Why the delay?
The invasive nature of the required diagnostic surgery.
Most doctors will begin with a pelvic exam and some imaging tests, such as an ultrasound or MRI, but it is important to note that these can only rule out other causes. Laporoscopic surgery is the only proven and viable method to detect and diagnose the disease. Because surgery seems extreme, many doctors and patients choose to forgo it and instead treat it blindly – or ignore it altogether.
Endo mimics several other conditions.
Oftentimes, women don’t even realize their problem is gynecological in the first place. My friend, Mandi, writes in her endo blog about seeing a physical therapist for back pain, a gastroenterologist for stomach issues, and a fertility doctor for infertility – but none of the doctors connected the dots to realize that endometriosis was the cause of all three problems!
This is super common in endo patients, especially with symptoms that don’t seem gynecological on the surface.Unfortunately, many patients are simply told “there’s nothing wrong with you” and sent home – or to a mental health provider – before finding an answer to the cause of their very. real. pain.
A lack of knowledge in the medical field.
Unfortunately, endometriosis is simply not understood by many practitioners – even gynecologists. They are not caught up on the latest research and still adhere to old standards they first learned in medical school, despite the improving and evolving research and progress in treatment options.
I know of several young women who know something is wrong, but haven’t gotten a diagnosis because they don’t want to go to the gynecologist. I get it – it’s awkward, especially on your first trip, and you want to delay it as long as possible. But I’m here to tell you that it’s only weird to you and you have the choice to let go of those nerves. We can talk all day about how the health system is failing us along the way, but the first step is your responsibility and yours alone.
It’s a “woman” thing.
I’ll try not to get on a soapbox here, but simply put – one of the biggest barriers to endometriosis patients is that it only affects half the population. The female half, to be exact. I personally believe that if endo affected men’s ability to go to work and enjoy sex, we would have a cure by now..and maybe declare a national state of emergency. Unfortunately, women are often told to “just have a baby” or are treated like hypochondriacs. (Personal experience talking here.)
Read more about gender bias in healthcare.
Everyone’s journey to diagnosis looks different and has its own pitfalls and obstacles. The important thing is to start somewhere and then not give up until you have a doctor who believes you and will find an answer with you.
My Diagnosis Journey:
As I mentioned in my last blog, I dealt with my symptoms for about three years before seeking medical attention. I only did so then because I was engaged and it was finally “time” to see a gynecologist. (Pst..it was actually past time – you should really go sooner, especially if you have pain.) The first doctor I went to simply nodded when I told her I had painful periods and gave me an array of birth control to pick from. There were no further questions or discussions about why my periods were painful or whether I wanted to explore a diagnosis. I didn’t know any better, so I picked the IUD because it seemed simple enough.
It was not simple. I almost passed out from pain before they hardly began and the doctor furrowed her brow and said we could try again the next week. Fortunately, I chose not to endure that kind of torture again and found another doctor.
My sister suggested I see her OBGYN and I will forever be grateful for that recommendation. This nurse practitioner played a crucial role in my diagnosis and treatment. From the minute she walked in the door, she listened with curiosity and she treated me with respect and kindness. Two attributes I had yet to find in a doctor. She reviewed my family history, listened to my symptoms, and told me that I “most definitely” had endometriosis.
At that time, I had heard my mom mention the word, but didn’t know much about it. I left the office beaming because someone believed me, offered me a reason for the pain I felt, and treated me like it mattered. Like I mattered.
We tried a few different birth control pills over the next several months, and they did help some with the pain, but the side effects were too much for me to handle. I struggled with low energy and depression and was not myself while on the pill. I decided that I would rather have a few weeks of physical pain than battle constant emotional stress and my doctor respected that. She gave me some suggestions for managing my symptoms and prescribed me pain medicine when I needed it.
Diagnostic Lap #1:
The pain and symptoms got worse and I started doing my own research at home. I kept seeing information about surgery come up and I asked my doctor if that was something they could do. I was hesitant because I had learned a lot about the importance of using an excision specialist, but I knew I couldn’t afford to go to one. The surgeon at my practice sat and talked with me and agreed to do a diagnostic laparoscopy and excise whatever he could. We picked a date and less than a month later, I was driving to the hospital for an outpatient procedure.
I remember feeling giddy with excitement. I just knew that surgery was the answer and I would finally have some proof that the pain was real.
To say that surgery was a disappointment would be an understatement. Yes, the doctor found a few spots of endo – on my uterus and one ovary. But most of the problem seemed to be that my organs were all fused together by adhesions and scar tissue – a result of that bad appendectomy from years earlier. I waited through the first few months, but things never got better. The doctor had removed the endo he found, along with all the scar tissue, and yet I never felt a day of relief. The pain felt different – more scattered throughout the month – but did not go away.
A Thorough Diagnosis:
The Center for Endometriosis Care seemed to be my last hope. I downloaded the 26-page application packet and filled it out – but I left it sitting on my desk for months and months. I couldn’t bring myself to mail it in. My diagnostic lap left me more confused than ever – he had barely found any endo, so was I really going to pay the price to see an endo specialist? What if there was nothing there?
With lots of prayer and encouragement from my friends and family, I finally submitted the application. The consultation is free, after all, so it couldn’t hurt to talk to them. Dr. Kongoasa called me a few days later and let me know that they suspected adenomyosis, based on my symptoms and surgical notes. He also assured me that there could be remnants of endometriosis, since my first doctor was not a specialist.
We scheduled our surgery with them for January 22, 2018, and that date will forever stay with me. I woke up from that surgery to a smiling husband, telling me they found lots of endo and they removed it all. I would come to find out that the endo was on my ovaries, my bladder, rectum, cervix, and pelvic wall. And it had been there during my first surgery as well – easily overlooked by the untrained eye.
They also diagnosed me with adenomyosis, interstitial cysitis, and pelvic floor dysfunction, arming me with more information and power to take better control of my health.
Finally. An answer. Treatment and success aside, there is something so empowering and reassuring about receiving a proper diagnosis. I am so grateful that I didn’t give up or throw in the towel – there is a peace found in getting answers and it is worth pursuing. I am even more adamant that you can’t give up based on the “findings” or recommendations from just any doctor. There are only a select few surgeons in the country who specialize in endo and have a more complete understanding of the disease!
The topic of treatment options and surgical methods is a whole other animal, so I will cover this in part three of the crash course! My takeaway today is that pain is never normal and you deserve better. If you are suffering and these symptoms align with your own experience, your first step to wellness is a proper diagnosis from a proper doctor.
For me, I just thought “it sucks to be a woman” and figured my reproductive health didn’t matter all that much until I was married. I only have myself to blame for shrugging my shoulders and allowing the disease to progress, but you can choose differently. And you SHOULD choose differently, for the sake of your own health, your relationships and your fertility.
Find a doctor who will listen to you and advocate for you. And then find a specialist who will do the real work of diagnosing (and eventually treating) you. I’m more than happy to give you recommendations if you need them!
Be well, my friends.
Disclaimer: The purpose of my blog is to share my experiences and personal opinions. I’m not a doctor or health professional and this information is not to be taken as medical advice. When it comes to your health, please do your research and discuss your options with your doctor.