Seeking a Second Opinion
By Team QENDO
Endometriosis and adenomyosis are challenging diseases in many ways, but one of the ways in which they can begin to take their toll is the search for the right care and management of your illness. Whether it's gaining that initial diagnosis, ongoing pain management, or troubleshooting new symptoms, you need a team that works for you. Many patients stay with practitioners who aren't right, aren't listening, or lack the right expertise for the problem at hand because they don't realize that a second or subsequent opinion can be extremely valuable. It can be tough, because we should be able to trust our doctors and health practitioners and trust their opinions; but not everyone can know everything, and an important part of clinical practice is understanding when one's expertise has reached it's limit and it's time to get help from another colleague. Likewise, if you are seeing someone and finding no beneficial changes in your condition - it's time to seek a second opinion.
It can feel like it's own job, scheduling and attending appointments, finding new practitioners, and trying new treatments. At QENDO we understand this struggle, and want to help you better understand, one, when you should seek a second opinion and why it is valuable; two, how to find the practitioner that is right for you and what to look for when trying to find an endometriosis excision specialist; and three, what to expect from an appointment when it's your second, or subsequent, opinion and how to prepare. To that end, we present to you the second opinion blog series. In this blog you'll read about some of the experiences of other women who have had multiple opinions. In the coming weeks look out for pieces by Dr Donald Angstetra and Dr Graham Tronc, who will help demystify the process of finding a good endometriosis specialist, and what to expect from a second or subsequent opinion.
When Should You Consider a Second Opinion?
You don't feel comfortable with, or confident in your current practitioner - whether they be GP or specialist. If you don't feel listened to, if you are constantly arguing to get your symptoms taken seriously, or your doctor doesn't know a lot about endometriosis or adenomyosis, you should look for someone else. A good doctor should be professional, knowledgeable, and make you feel at ease and cared for; they should also utilise appropriate referrals when necessary to ensure you are getting the best care.
You've had a surgery, or more than one, and you're still experiencing pain regularly. Endo is a complicated disease, and even when you've got a solid management plan flare ups can still occur; but if you're back to pain that is coming more often than not, and/or having pain that interferes with your daily activities, it's a good idea to re-evaluate and seek a second opinion. A fresh pair of eyes may help uncover new causes, a new referral to a different practitioner - like a pain specialist - may help you better understand your symptoms. Perhaps you need to consider other diagnoses such as adenomyosis or PCOS and need to talk to someone new. You don't have to put up with debilitating pain, speak up about it.
You've got new symptoms or new concerns. Maybe you're having problems with your bowel or bladder, maybe you want to switch your focus from strictly pain management to fertility management, or perhaps you're concerned about headaches. Endometriosis and adenomyosis are multi-disciplinary and often affect a myriad of body systems, a second opinion from a different type of specialist - e.g. gastroenterologist, urologist, endocrinologist, or fertility specialist - may be what you need to manage new symptoms related to endo, or old ones that are persisting despite a good excision surgery/pain management plan. Don't be afraid to speak to your endo specialist or GP about adding people to your team and resources to your endo toolbox.
If you're unsure or uncertain about anything related to your current management plan and want to know if you could be doing more, it's okay to ask for a second opinion. It's your body and your disease, take charge of managing it.
Ash, Darling Downs Facilitator
It’s really hard when you’re sitting beside the toilet, holding your insides and crying because you are in so much pain and there is nothing you can do, because doctors cannot work out what is wrong.
For years this was my life. It didn’t matter where I was in my cycle, what I had eaten or how much I had worked. I was always surprised by sharp constant pains. So much pain, I would throw up.
When my GP first went through my symptoms we thought IBS, Celiac so I tired the diets to match, with nothing any better. My GP then referred me onto my first ever gynaecologist. Honestly, all I knew about an OBGYN was they focused on women’s health. At first, going through my symptoms he thought I may have PID. It wasn’t until he did an internal ultrasound (SO UNCOMFORTABLE!!!) that he found there was probably a large cyst on my ovary and booked me in for surgery 2 weeks later. He found endo and a few cysts.
Not even 2 years later I was back in excruciating pain. I got another referral letter and went back. No questions asked, he booked another surgery for a months time. Again, found more endo, more cysts and adhesions.
2 years later, like clockwork. Pain, sleepless nights, losing track of how many emergency department visits. I knew there must be something else going on for this to keep repeating. I did not know a lot about endo, which was also half the battle.
I asked my GP to see a different doctor. A different OBGYN. She was at first hesitant. Until I broke down in tears. It has, and always will be a dream of mine to be a mother, I cried. The more surgeries I have the harder it’s going to be. By this time I had tears streaming down my face. My GP then referred me into a female OBGYN.
YAY. When I saw my new OBGYN, I requested all my docs to be transferred to her so she had a whole history. She sent me for bloods and an ultrasound. I did both of those things that afternoon.
Not even 2 weeks after my appointment I found myself once again in ED (thanks Dad for driving me up at 3am!!!!!) the doctor on duty had no doubt it would be female health related and admitted me. I was in hospital from the Sunday night and on the Wednesday night, I had surgery. More adhesions, more endo, but this time - a benign tumour had wrapped itself around my Fallopian tube. WOW!!!!
These days when I look back at my endo journey, I’m so glad I got to see a second doctor, got a second opinion, and had a surgery with them. I’d be lost without my current OBGYN and I hope she never retires!!!!
Steph M, Sunshine Coast Facilitator
Determining that I required a second opinion often came because I felt disregarded by the GP I was seeing once the test results came back as negative. Once they had those results in their hands, they were very quick to prescribe me another pill with full belief that it would fix all my problems. It felt as though my concerns and protests were less valued than their test results. I kept changing doctors mainly to find one that I felt comfortable with, and this became a lengthy process. A few times I came across someone who seemed to be working through my concerns, but then they would move practice and I would be back at square one again.
I'm now currently rotating through a few different GP's for various issues as I've found one may be more suitable for assisting with one health area but not another. If you aren't happy, move on, you know your body and your experiences more than a piece of paper with some test results.
My endo journey started in New Zealand and followed me to Australia. In NZ I had three surgeries, the second one in a public hospital with a surgeon I had never met, who removed my appendix thinking my severe pain was attributable to appendicitis. This is a story I've heard all too often from other women, an appendectomy only to find that there is endo everywhere. While I was fortunate to see an endometriosis nurse practitioner in NZ who helped tremendously with helping me understand my new diagnosis, it wasn't until I moved to Australia and found a new gynaecologist, an endo excision specialist, that I started getting the answers and treatment I needed. I had another two surgeries, taking my total to five.
The second opinions that changed my quality of life significantly were my referrals to my pain specialist and colorectal surgeon. Before seeing my pain specialist I hadn't thought that there were any other strategies left that could help, in one appointment that changed. I started seeing a physio and then a colorectal surgeon and received another diagnosis that felt like the missing piece. I tried new treatments that left me wondering how I had ever put up with anything less. Second opinions can be life changing, don't be afraid to ask for something different if you're not getting what you need. QENDO can help you find someone new if you need guidance. Use our support line and support workers, we are there for you.
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