I don’t have the same issues you are dealing with, but I have learned a lot about lymphedema since I developed it in my left arm due to my mastectomy/axillary dissection. You may have it in your torso/stomach region (very common after those surgeries) causing your swellings. It causes other problems too but swelling is what people see. Google “Lymphedema Education & Research Network” and “National Lymphedema Network” to find out more. It is manageable. I use active massage sleeves from SolideaUSA because they are more comfortable than traditional compression garments. They have items that would work for your torso/abdomen too. I can somewhat relate to your other issue because unrelated to cancer, but to fix pelvic floor prolapse, I had a hysterectomy (plus tubes and ovaries removed) last summer. The doctor who came in to do the reconstruction put in a mesh mid-urethral sling for stress incontinence prevention. He put it in too tight and I could not urinate at all. I had to learn to self-cath. A month later he went back in for a “revision” ( he cut the sling to loosen it). The reconstruction failed, and the “revision” only helped some. I could only urinate standing up while simultaneously leaning over! Six months later I had the reconstruction redone with a different doc at a nearby large teaching hospital. I still have issues with urinating. Things just don’t work/feel like they used to. Yes, I too have to really pay attention to things because the normal sensations are gone.
I did consider DIEP flap surgery, but I was too scared of any of the other surgeries that used muscle tissue to form the breast mound to even consider them. I kept thinking it would create a different set of problems, which is what seems to have happened to you.
Anyway, good luck. There are a lot of us out here! : )

I just hate that you are having issues for so long. Back in 2004 I made the decision to have a mastectomy with reconstruction. But I just didn't feel right about the tram flap. I cannot pinpoint why, but it troubled me, so I decided to research other options. At the time I was a member of an online support community on FORCE (Facing Our Risk of Cancer Empowered). After much discussion, research, and recommendations from the folks of the FORCE group, I chose to travel to New Orleans to meet with two different doctors who were doing a relatively new (at least I had never heard of it) reconstructive procedure named DIEP). I chose Dr. Scott Sullivan and Dr. Frank DellaCroce at the Center for Restorative Breast Surgery in New Orleans (www.breastcenter.com). I highly recommend this fine group of doctors. I have never ever regretted this decision and to this day still believe I made the best decision of my life. I truly believe you won't be disappointed. It's worth investigating and even going for an interview visit if you so choose. I don't want you to have to go through this any longer.