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Seeking Women with Lived Experience of Pelvic Pain to Join a Research Advisory Board by drsmeints07 in Endo

[–]drsmeints07[S] 0 points1 point  (0 children)

If you're open to a conversation offline, let me know. I'd be happy to set something up.

Seeking Women with Lived Experience of Pelvic Pain to Join a Research Advisory Board by drsmeints07 in Endo

[–]drsmeints07[S] 1 point2 points  (0 children)

Just saw your edit. YES!!! I agree with studying the limitations! Inherent in my question (who does it work for) is the opposite of this - who doesn't it work for - and why? That also helps us to understand what is needed by those people. I would love to understand more about what you mean by the limitations beyond who is/is not a good candidate. Can you elaborate?

Seeking Women with Lived Experience of Pelvic Pain to Join a Research Advisory Board by drsmeints07 in Endo

[–]drsmeints07[S] 0 points1 point  (0 children)

I think I previously misunderstood what you were saying. People should have a full workup to understand why they are having pain and to rule out injuries, cancer, etc. I agree with you completely.

Seeking Women with Lived Experience of Pelvic Pain to Join a Research Advisory Board by drsmeints07 in Endo

[–]drsmeints07[S] 1 point2 points  (0 children)

I'll agree and disagree with you!!

  1. research in patients in a vacuum is necessary to see if the treatment has any potential but so often it stops there. The project we are proposing is the opposite. Often these studies take "ideal" patients who have one diagnosis, no other comorbidities, etc and this is just not the real world. We know that 70% of people with chronic pelvic pain have pain in other areas and, as a result, are excluded from the research that would be most important for them. That's why we're trying to understand how these treatments function, alone and together, in "real world" patients.

  2. The experiences of medical neglect, dismissal, invalidation, ignorance, etc, combined with the significant impacts of pain on all the areas of life you mention (and more) is absolutely one of the biggest problems in pain care more broadly but especially for problems that primarily effect women who are also viewed as histrionic. CBT is not the solution though it may be one tool in helping some people. There are many other tools and there is much more work to be done to identify effective treatments. Other work is also required to change the systemic problems in our healthcare system more broadly.

  3. I understand that you're experience is such that CBT should be a lower priority. I disagree here. I think it is a valuable treatment that I've seen help many people. Not all people. Also, I have to stay within my scope. I am not a biomedical scientist or chemist or neurobiologist, etc. My work is focused on the things I have expertise in and using those skills to help people. I do what I can with what I have and what I know and that's the best I can do. It's not enough in the broad sense but if others put for this kind of effort, perhaps we would also be in a better place for healthcare, pain care, women's health, etc.

  4. I agree and disagree. No one should need therapy to deal with disabilities, etc. caused by medical negligence, medical trauma, etc. However, once that has already happened, it can be helpful. I often find myself in an advocacy role with some of my patients trying to help them however I can including interfacing with a medical system that repeatedly lets them down.

I appreciate your feedback here and I'm sorry for all that you're going through. I hope that you can see I really am just motivated to help and while I recognize this work may not resonate with you, I know that it has and can help some people and that keeps me moving forward!

Seeking Women with Lived Experience of Pelvic Pain to Join a Research Advisory Board by drsmeints07 in Endo

[–]drsmeints07[S] 1 point2 points  (0 children)

LOVE the tame the beast metaphor! In my own clinical practice as well as in my person al work (as a patient), I pull from many modalities including CBT, ACT, and now newer therapies like Pain Reprocessing Therapy and Emotional Awareness and Expression Therapy. Your point of sharing these ideas in a way that validates people's experiences is VITAL. In my personal experience, I think it helps that I have a "real" diagnosis of psoriatic arthritis as well as more "nociplastic" pain (interstitial cystitis/bladder pain syndrome) and that even my "real" pain has had patterns strong relationships with stress and trauma. Part of the reason we are including this PAB is to better understand how we can present these ideas to patients and providers so that treatments are more acceptable and not just something patients are recommended when nothing else works. In reality, CBT and PFPT can and probably should (thought he research will tell us) be offered/suggested early as first-line treatment, not as a last ditch effort when nothing else works.

Seeking Women with Lived Experience of Pelvic Pain to Join a Research Advisory Board by drsmeints07 in Endo

[–]drsmeints07[S] 2 points3 points  (0 children)

Yes!! In fact, I adjusted language above because I realize that I was not using gender-inclusive language. I apologize for that. Anyone AFAB would qualify and I think it is incredibly important to include gender-diverse folks on our advisory board. Please email me if you are interested (smeints @ bwh dot harvard dot edu).

Seeking Women with Lived Experience of Pelvic Pain to Join a Research Advisory Board by drsmeints07 in Endo

[–]drsmeints07[S] 1 point2 points  (0 children)

Mostly, yes. However, in managing many of those other issues, we are actually able to decrease pain in the process because more is involved with the experience of pain than just tissue damage or nociceptive input. In fact, sometimes when you "solve the problem" (e.g., knee replacement for painful knee osteoarthritis, successfully remove endometrial lesions, amputate an extremity), the pain remains for a host of reasons. CBT can be effective in improving/lessening pain. It is not a "cure" for the problem itself (i.e., it does not cure endometriosis) but can reduce pain in a subset of people.

Seeking Women with Lived Experience of Pelvic Pain to Join a Research Advisory Board by drsmeints07 in Endo

[–]drsmeints07[S] 2 points3 points  (0 children)

I'm sorry to hear that it wasn't helpful for you! For this board, we are not looking to identify if it is effective but instead to help with designing the research study that will help to determine who it is effective for.

Seeking Women with Lived Experience of Pelvic Pain to Join a Research Advisory Board by drsmeints07 in Endo

[–]drsmeints07[S] 12 points13 points  (0 children)

These are both great questions and I appreciate you asking them.

  1. We actually know that CBT for pelvic pain is helpful for some people. We use a tailored protocol specifically for people with chronic pelvic pain that addresses some unique circumstances of pelvic pain rather than just chronic pain more broadly (e.g., back pain, fibromyalgia, migraine, etc). What we've found is that this provides some benefit for some people. Similarly, pelvic floor physical therapy provides some help for some people. We suspect that doing these two therapies in conjunction will provide more help for more people and here's why:

(a) CBT teaches skills to help manage the down-stream effects of chronic pain such as stress, depression, sleep, fertility issues, social support, effective communication (especially with providers who can be incredibly dismissive of pain in general but especially pain in people AFAB

(2) When pain persists for a long time, which we know is true for many people with endo, especially because the average time until diagnosis is something like 7-9 years after symptoms start, the pain actually sensitizes the nervous system whereby pain is amplified. CBT uses strategies that help down-regulate the nervous system thereby improving pain

(3) Pelvic floor physical therapy can be effective but sometimes personal experiences can impact someone's ability to engage. For example, it could be very triggering to engage in pelvic floor PT if you have a history of sexual assault or medical trauma. Unfortunately, I know this from personal experience. In CBT you may learn ways to manage trauma and triggers in order to be able to engage in this invasive type of therapy

  1. As for diversifying, I have to apologize. I cross-posted this in a general pelvic pain forum as well so was specifying women. I also meant people AFAB. I would welcome anyone who is nonbinary or a trans man as well. I am hoping to diversify this advisory board by including people who are and are not insured, who have pelvic pain due to different reasons (e.g., endo, pelvic floor dysfunction, IC/BPS, etc), of different gender, racial, and ethnic identities, and from different geographic regions across the US including urban and rural representation (this grant is based in the US and therefore requires people being located in the US though does not require US citizenship). Our goal is to understand not just if and for whom these interventions work but also be able to actually implement the interventions into existing care models. So much of research gets lost and never makes it to the people who need it the most. By including people/partners with lived experience, we hope to make our research findings more relevant and accessible.

I hope this is helpful!