Decisions, Decisions, Part II: Changing Doctors

If your doctor dresses in a Renaissance plague mask, it might be time to consider a change.

To most, changing your doctor might not seem like a significant decision. However, when you have an illness that is pretty much guaranteed to haunt you long-term, your specialist is one of the most important people in your life. You rely on them for the overarching framework of your day-to-day treatment, and for the major things – operations, significant medication – that will ultimately steer your health journey. With endometriosis in particular, you have to talk to them about some deeply personal stuff – everything from your family planning to the sensations in, well, personal areas. At some point, they will almost certainly ask to conduct a fairly invasive examination of said areas. You want this person to be someone you trust. You want them to listen to you, believe you, and help you.

But what if they don’t? What if your specialist, whom you have trusted with your pain and probably your resultant heartache, is dismissive, insensitive or rude? What if they simply have run out of ideas? When do you say, “enough is enough” and decide to switch?

These are some of the important questions to consider when making your decision.

1) Are there others in the area?

This is less of an issue for those in populous, well-resourced cities, where specialists abound. However, in smaller towns or remote areas, your next closest specialist could be anything from a few hours to over a day’s drive away. Can you commit to travelling that distance for appointments? If you can, by all means, crack on. If it is more challenging for you logistically, you will need to weigh the issues with your current specialist against the issues with physically getting to the new one.

If you can travel, it can be worth it. Good specialists often congregate where there is high demand for their skills. To see one of my specialists, I travelled three to four hours each way (including post-op). To see my current specialist in person, I travel to the UK (although I’ve only done that once and he kindly consults by Skype). Whilst travelling halfway around the world is admittedly extreme, for me it has been worth it, because I couldn’t be happier with Dr Edi-Osagie. Even the three-hour journey for my previous specialist was worth it at first, because the quality of care I was receiving was significantly better than I felt I was getting closer to home.

2) Can you afford it?

Some specialists are cheaper than others. Some have a huge up-front cost but a lower ongoing cost, whilst others have a reasonably low cost for their initial appointment but higher costs overall. Some insist on an initial scan, at additional cost. With others, you may have to factor in additional travel costs.

3) What is prompting the change? Can a new doctor do more?

I’ve changed specialists three times. The first time, I lost confidence in her ability to do anything to help me. The second time, I felt like he didn’t believe me when I described the severity of my pain. The third time, he seemed too fixated on the idea of pregnancy as a cure, even whilst acknowledging it was a temporary fix at best, and it was clear our ideas about acceptable quality of life were not the same. With each doctor, I left the appointments feeling hopeless and a bit worthless, like it was my fault that I had this pain.

When the problem is a values clash, as with my second and third doctors, I think that changing specialists (all else being equal) is a straightforward decision. Life with endometriosis varies from hard to downright horrific. Enduring it is difficult even with everyone on your side. It is borderline impossible when the person who is supposed to be treating you gaslights and undermines you instead.

It’s more complex if your specialist can’t help you reduce your pain. It might be that they have reached the upper limits of their own knowledge, and another specialist could have new ideas or greater expertise. Alternatively, it might be that your disease has simply reached a stage where conventional medical treatment simply cannot assist you. This is an important distinction and one you should have with your doctor. If they are honest and have integrity, they’ll be able to tell you whether someone else can help where they can’t. It might still be worth getting a second opinion, especially if your relationship with your specialist isn’t that good or you feel that they are offended by the question.

Likewise, it is important to check out your specialist’s qualifications. If they are a fertility specialist first and deal with an endometriosis as a consequence of that, you may be able to get more advanced treatment from someone who focuses entirely on endo. If your surgeon has only tried ablation, it could be that excision is what you need. However, if you are already seeing someone at the top of the game, it could be that you have just run into the barrier of awfulness that is severe endometriosis.

4) What else can you do?

This question can mean “are there alternatives?” or it can mean “are there things I can do as well as change doctor?”

Alternatives may be explaining to your doctor how they have made you feel, if you think they will be open to changing.  It may mean staying with your primary doctor but seeking a second opinion, just to be safe.

Additions may mean making a complaint about your doctor to AHPRA, making a complaint to their practice, or commencing legal action against them.  I do not recommend taking to facebook or anywhere else and complaining about them to the general public.  It is far too easy to find yourself smacked with a defamation case by doing that, and that is the last thing you need.

If you do intend to sue your doctor for personal injury (if they’ve caused an injury, that is) please be aware that there are very strict time limits on your ability to do so, so get yourself to a lawyer ASAP for advice on your prospects.

 

Have you had a bad experience with a doctor that made you change to someone else?  Were there any limiting factors on your decision?  Let me know in the comments!

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