The text below are notes for you to reference. In the podcast we go into a lot more depth!
If you heard my personal story in episode two, then you know that the medical treatment I have received in the past 8 months has been so different than the care I received from various doctors for years before that.
I wish I had known these 9 things below when I was younger. Maybe it wouldn’t have taken 16 years to be diagnosed with endo!
1. Never stop advocating for yourself.
I really love the doctor that I have now, but I had to search to find him. With endo, many people see several doctors before finding the right one, and unfortunately it can take years to be diagnosed. If a doctor doesn’t believe your symptoms or is dismissive or implies that you should just ‘toughen up’, look for another doctor.
It is tiring and frustrating to go from one doctor to another, and it feels extremely vulnerable to open up to the doctors to be brushed off, but it’s important to find the one that will listen to you, so that you can find the care you need.
Without meaning to, I just gave up looking for a doctor because I felt fed up with them. Had I instead continued pushing to find one, I imagine it wouldn’t have taken 16 years to be diagnosed, since for about 8 of those years I didn’t even look for one! Maybe with an earlier diagnosis, I wouldn’t have lost my ovary to a giant 12 cm endometrioma.
But at 30, my instinct told me that something was wrong based on the severity on my symptoms, so I was determined to see as many doctors as it took until I found the right one for me. And it took another 8 months and 4 doctors later before I found the one I have now.
2. Look for a gynecologist who has training/experience in treating endometriosis.
Endo is a complex disease without a lot of research and with a lot of misinformation out there, so finding a doctor knowledgeable on endo is important in order to get diagnosed and to receive expert treatment.
I didn’t realize that there are gynecologists out there who don’t usually treat endometriosis, and then there are ones who are highly skilled at it because they have seen hundred of cases. Once I found my doctor, who has extensive experience in treating endometriosis, there was no need to bend over backwards trying to convince him of the severity of my symptoms. It was like day and night. He believed me instantly, and in the first appointment he talked about how we could diagnose endo and potential treatment options, like excision surgery.
3. Make empowered and educated decisions about your medical treatment.
I was living with the symptoms for years before a gynecologist finally said she thought I had endometriosis. In that same appointment, she also said words like Lupron, hysterectomy, IUD, surgery. I knew nothing about endo, nothing about the treatment options, and nothing about what I wanted to do. All I knew was that I was scared and overwhelmed, and in uncomfortable waters.
Fifty years ago, maybe even twenty, we didn’t have much information. But now with the rise of books, internet, health magazines, pubmed articles and more, we are able to do our own independent research on our illness and treatment options. We are have forums and support groups and are able to talk to other people living with the same problems we are.
So I went home and began to learn everything I could about endometriosis, so that I could be better informed when discussing my options with my doctor. Just make sure to keep in mind whenever researching that there is also a lot of misinformation out there, and what you learn is never a substitute for professional medical advice.
I personally have learned a lot through a Facebook group called “Nancy’s Nook Endometriosis Education.” (Note: I am not affiliated with this group in any way.) This is a closed Facebook group that you can ask for permission to join, but make sure to read the group rules. It has files and links to help you educate yourself on endometriosis so that you can make more informed choices. I was blown away by all of the research and information on there, and it was from this group that I learned how to choose the right doctor for me.
I want to compare two health decisions I’ve made:
– An Uninformed Decision
When I was in college, back around 2004, a gynecologist told me about a hormone shot which she said would help my recurrent ovarian cysts. I was nervous to try more hormones because they had always affected me, but she reassured me that this was different from the other hormones I had taken because there were no side effects. I was 18, tired of having uncontrollable diarrhea and cramps, and also very naïve and scared. I wanted to believe her; I wanted to feel better. So I let her inject it in me, and I had debilitating nausea for two months, along with hot flashes and mood changes. That was not a fun college semester.
If I had researched it before taking it (instead of after, when I actually began having side effects) I would have learned about the possible side effects. At that time, I probably still would have taken it, because I wanted to see if it would help me, and I wouldn’t have known how badly it was going to affect me.
It’s hard to make these decisions because we have no idea what the outcome will be, if the potential side effects or risks will outweigh the benefits or not, if the medicine or procedure will cause more suffering, or will be the precise thing that helps us feel better.
But with more information, with asking more questions, I could have better weighed my options and understood the facts. That day, I didn’t make an empowered decision. I made an uninformed one, out of desperation and hope. And once the side effects started, I felt so stupid for having done that, and angry with myself. I also felt betrayed by the doctor, and felt that she lied to me. Maybe that isn’t the case – maybe she really believed there were no side effects, or maybe I misunderstood her. But I think if I had had any sort of curiosity to research it or healthy skepticism towards the fact that it supposedly had no side effects, we could have discussed it further and clarified the information.
– An Empowered Decision
Just recently, when my current endo doctor told me about excision surgery, I read as much as I could about excision surgery, endo treatments, and even him as a doctor – his website, his interviews, his patient reviews.
I made a second, follow up appointment with him to clarify all my doubts, and make sure I felt I clearly understood all the risks before making my decision. Was it the right decision? I wouldn’t know until after the surgery, until I saw the outcome, how I felt, and if the hoped for benefits outweighed any potential risks.
I was scared, but at the same time I went into it confident in my doctor’s skill, confident in my knowledge, and feeling empowered in my decision. If for some reason it didn’t go well, I could look back and know that I gathered as much information as I could, and made the best decision I could based on everything I had learned.
4. Ask questions.
This goes hand in hand with making an educated decision. Maybe if I had asked the surgeon who did my first laparoscopy how many cases of endometriosis she had seen, she may have said very few, prompting me to find another doctor with more skill in that area who would have caught the endo at that time, when I was 19.
Recently however, I did ask a ton of questions. Before my excision surgery, I asked the surgeon about how many cases with bowel involvement that he had operated on, his success rates, the risks, why he thought excision was the best treatment option for me versus another treatment. I got and read my postoperative report, and at the 2 week post op appointment I asked questions about it to be sure I understood everything.
5. Consider getting a second opinion.
This we hear recommended a lot. You don’t have to get a second opinion, but sometimes it’s useful when you have the facts but still don’t know what decision to make. Or maybe you don’t like the proposed treatment option and want to see if anything else is available.
When I had gastritis, the first gastroenterologist I went to told me that he thought that it was my IBS. “IBS is a tricky beast,” he said, “and symptoms can morph and change over the years.” Yet something told me that it wasn’t IBS, since the pain was higher, in my stomach and not my abdomen, and it involved burping and other symptoms that were completely different than the usual ones. I decided to see another doctor, who did an endoscopy and found it was actually gastritis. With that diagnosis, we could then begin to properly treat it.
6. Go into the doctor’s appointment with everything written down.
Time with the doctor can sometimes be very short, so having everything written down helps you stay on track, and not miss anything important. It helps you know the general gist of what you want to say before you get there, so the doctor doesn’t say “What brings you here today?” and you say, “Hm, um, uh…where do I start?” and lose a few minutes talking in circles.
I usually bring into the appointment a paper with my notes, so I make sure to discuss with the doctor all the key points. Sometimes I would get overwhelmed or emotional, and then would forget to ask something important. Because I used to get so upset trying to explain my symptoms to the doctor, I would practice describing my pain at home before the appointment, trying not to ramble or start crying.
7. Use good descriptions to accurately describe your symptoms and pain.
I used to say general phrases like “it really hurts” or “I can’t stop going to the bathroom.” Those words don’t really mean anything. So I recommend figuring out:
- What does your pain feel like? Is it burning, stabbing, aching, etc?
- Where is it, exactly? It is on my lower back, right here (point to spot).
- Is it constant or intermittent?
- How long does it last?
- What happens to you when you’re in pain? Do you throw up or have diarrhea (or if you’re lucky, both?) Do you have to call out of work because of the pain? Is it so bad you can’t drive or even have a conversation?
- Have you tried painkillers? What type and did they help?
It’s good to look online at pain descriptions and also pain charts that write out how the symptoms affect you. I think this is important because it helps the doctor really gauge your pain level for themselves. I hear people exaggerate all the time, “My cramps are killing me right now” while we are out to eat or at gym and they are sitting there perfectly fine, holding on a conversation, running on the treadmill, or taking part in some normal activity. Their cramps may be annoying or uncomfortable but they are clearly not killing them.
With accurate descriptions of pain, “I throw up and I have to lay in bed with my heating pad for two days and can’t go to work,” you can set yourself apart from everyone else whose cramps are “killing them”, and the doctor can understand for themselves how intense your pain really is.
8. Don’t generalize the millions of doctors in the world on account of a few of them.
Guilty as charged. I definitely had to work on this after a few bad experiences I had with doctors, which I talk about in my personal story. By my early twenties, I had grown to hate doctors. By towards my late twenties, I started to realize that I had also had some great doctors, people that were passionate, that cared, that were knowledgeable and helped me heal: like the one who helped my gastritis, or the GP who realized I was anemic (taking iron pills for it drastically improved my energy level and my dizziness.)
Doctors are individuals with different skills, levels of experience, and bedside manners. Just because one lacked empathy doesn’t mean they all do; just because one didn’t listen doesn’t mean no doctor will ever listen.
9. Don’t let past experiences prevent you from seeking medical care.
In my teens when the doctors had told me there was nothing wrong with me (in spite of the diarrhea, murderous cramps and chronic pain) I internalized that. Without even knowing it, I carried around the hurt of that ‘rejection’ and deep self doubt to the validity of my symptoms. When one told me it was anxiety, I started to wonder if maybe I was a little crazy.
Seven years later, I started to have new pain, this time in my stomach after eating. I was nervous about it, but I didn’t go to the doctor. What’s the point? I thought. They never find anything. My big mistake was thinking that because of what happened in the past, it wouldn’t be any different for these new symptoms either.
So it took me six months to go to the doctor for it. By the time I went, it was severely affecting my life. I could barely eat and I had several more symptoms besides pain. I was shocked when they diagnosed me with gastritis after an endoscopy. I was literally blown away that they actually found something clinically wrong with me, because I had forgotten how to listen to my body and trust my instincts, and instead ignored obvious warning signs.
I regretted not having gone to the doctor sooner, and I learned that if I think something is wrong, I should go to the doctor. What if it had been something more serious, like stomach cancer, and I had waited so long it was no longer treatable?
10. Check costs beforehand with your insurance!
One last tip for you!
You can call the insurance beforehand to find out how much a procedure or visit will cost you before doing it. It can be tedious calling the insurance and trying to figure this stuff out, but in my experience they are usually pretty nice, and help you understand your plan better. Costs can differ widely for procedures if outpatient or done in office, or if in-network or out-of-network. The last thing you want is to be hit with a bill for hundreds or thousands of dollars that you weren’t expecting.
Find out if the doctor’s office has a financial counselor. I didn’t even know these existed until I had my surgery, and the financial counselor walked me though the different parties that could bill me, and verified my insurance benefits for me.
After my first surgery, I was charged by 9 different parties: surgeon, surgeon’s assistant, anesthesiologist, hospital, 4 different pathologists, lab testing center. But since I knew it was all in network and had a ballpark range of my costs, it wasn’t so scary when the bills started rolling in.
Learn about your plan. Not all insurance plans let you freely see a specialist; some require a referral and this might make it harder to get a second opinion, for example. Or you might be on a high deductible plan with have a higher out of pocket maximum, or maybe you can sign up for an FSA account to use pre-tax dollars. So definitely check with your HR department (if your work provides your insurance) and directly with your insurance to see what you are eligible for.
Do you have any more tips to add?
I am not a doctor, dietitian, mental health professional, or even an expert on endometriosis. No information on this website is medical or mental health advice. All information is meant for educational and informational purposes for a general audience. Always consult your qualified medical professional first before making any changes. It’s important that you and your doctor assess the risks or impacts these changes might have on you personally. Never ignore professional medical advice or delay in seeking treatment because of anything you learned on this site.