seeking advice/support for long-term disabling pain and discomfort from top surgery
hoping that if someone who has been through something similar sees this, they might be able to offer some advice.
I had top surgery 2.5 years ago, DI with free nipple grafts. currently, I am in constant pain everyday and cannot function. I have continuous widespread burning pain across my entire chest wall, with additional pain in my nipple grafts. one nipple graft is constantly erect, which causes a constant grating pain from the touch of a shirt or even the air against it. this nipple also becomes red and swollen with trapped fluid that surgeons suspect cannot drain normally due to the ducts being severed during grafting, and this causes a sharp, stabbing and a burning, throbbing pain. I also have an area of discoloration with a hard lump under the skin near one of the incisions which radiates stabbing and crawling pain across that side of my chest. this red-brown patch has been present since the surgery, and is in a concave area of my chest that was therefore not properly compressed by the post-surgical compression garment, leading me to suspect there may have been some fluid build-up after surgery. I raised this issue to my surgeon at my 6 month follow-up, but was brushed off. my chest feels painfully tight and lumpy, and (without touching them, just existing) I can feel my scars underneath my skin like hard underwire bands digging into me, despite massage (which is very painful to perform), and they sear and itch.
I have seen multiple doctors: breast surgeons, a pain consultant, and the surgeon who did my top surgery, who have all been unable to provide helpful treatment plans, besides a nerve block injection for neuropathic pain which I have scheduled. they seem stumped by my case. the surgeon who did my surgery has dealt with the situation very poorly, actively ignoring what I have told him, and making me fight to have him take my pain seriously. according to him, I am the only patient of his who has reported these levels of pain years after the surgery. he has guessed that the discoloured lump could be scar tissue, fat necrosis, or potentially a neuroma, but is unsure. his description of a seroma sounded identical to how the lump feels to me, but he did not think it was one. he has said that he could excise it, but is unconvinced that would help my pain. his only proposed solution to the issues with my nipple grafts is to remove the nipple, which I want to avoid unless absolutely necessary as for me they are very important parts of my body. my surgeon removed almost all tissue on my chest, despite the rest of my torso having an inch or so of padding, so I do wonder if the total lack of tissue could be contributing to the sensitivity of the area, as the side where more tissue was left causes me significantly less pain. (could be a total coincidence).
I was not informed before the surgery of any of these potential effects; of the potential of long-term post-surgical pain, of the issues with severed ducts filling up in the grafted nipples, of the grafts being constantly erect or the sharp pains in them. I was told my chest would probably be numb, not that it would be in constant pain. everywhere I turn, medical professionals seem unable to offer me solutions, handing me off to each other. I am UK-based, and my GP has repeatedly refused to prescribe me stronger painkillers, despite my being unable to fulfil my basic survival needs due to my levels of pain. I have a referral to a pain clinic for help managing my pain, though from my understanding, due to unreasonable waiting times, it will likely be years until I receive any support from them. things feel very hopeless and bleak. I am unable to leave the house most days, and can barely eat and sleep. I did not know going into this operation that it would cost me my health and comfort.
if anyone has been through something similar, whether it be chronic pain from their surgeries, physiological issues with nipples or constant hardness, painful areas or lumps of tissue, lack of tissue causing heightened sensitivity, or anything else, I would be very grateful to hear your experiences, and to know that I'm not the only one who has gone through this. in addition, if anyone has any advice or guidance in terms of what medical treatment they sought or found effective for post-surgical problems, this would be invaluable to me. thank you so much for your time ♡
TLDR: if you've faced long-term post-surgical complications or pain, what treatment did you seek/receive and what did you find effective?