My Story: Finding the Right Treatment for Endometriosis

Heather describes how complex the journey with endometriosis has been for her. She mentions that there can be multiple approaches to finding the correct diagnostic and treatment options that meet your individual needs.

Transcript:

OBOS Today: You spoke a little bit about getting treatment that maybe was not, in hindsight, the right treatment for you. Was there any misinformation or misconception during your journey with endometriosis that affected your treatment? 

Heather: Absolutely, you know when we talk about surgery for the disease, for example, which is used to diagnose and treat it, you know, it as Dr. Iris Orbuch says, you know, diagnosis and surgeries should be not one and done because that’s not a fair assessment, but certainly it shouldn’t be the path to multiple surgeries you should be able to have. the correct diagnostic procedure and the correct treatment, and we’re talking about things like the difference between excision and vaporization, burning the surface of a lesion is only going to leave behind multiple lesions, certainly deep disease, but also things like thermal damage and scar tissue and other things that result from just surface burning. When we talk about excision, that means going in and actually taking out the lesion by the route. Now it’s really not just about treating the lesion and I want to make that point very clear, because this is a very multi-disciplinary collaborative disease. Yes, you should take the, the lesions out and remove the disease from wherever it is, and it should be done via excision. But post-operatively you also need to address that patient’s additional needs, whether it’s pelvic floor dysfunction through treatment by a specialized physical therapist. Whether it’s certain diet and nutrition components, you know there’s a big picture approach and a collaborative approach that really needs to be taken here, and none of that was really done for me, I had to come to those conclusions by myself.  

And it’s just it’s not okay that people are going still in 2021, almost 22, people are still going through multiple surgeries and then they are blamed for their continuing pain when their surgeries are done incorrectly. You know they’re called non responders; it really, it’s about the quality of care that’s being given, but also when that care begins. Earlier intervention makes a difference. Collaborative care makes a difference, integrative approach makes a difference, and compassion makes a difference, you know if you have a provider, that is on your team, and she or he or they are working with you to find the answers for continuing pain and symptoms and they’re really addressing that intersection of approach. You’re going to come out on the other side much better than someone who is only doing surgery and sending you on your way without any kind of referrals to additional care. And that all matters and when that happens is important, you know symptoms can become very progressive, disabling, incapacitating, they can impact a person’s ability to work, go to school, social functioning, impact relationships, their fertility, of course their ability to have pleasurable sex; you know, all of these things matter, and so we really strive for early intervention and effective intervention. It’s not just enough to get that diagnosis, if it doesn’t lead to quality treatment, so you know we’re big on referring to centers of expertise.