How to cope with scar tissue discomfort?
August 12, 2022 8:21 AM   Subscribe

TW: pretty depressing question

This is tough to write about, because it’s making me severely depressed, but 2 years ago I had excision lap surgery with a specialist for severe, extensive endometriosis. The surgery did nothing for the endometriosis pain, which I take Rx pain meds for monthly. The surgery itself was excruciatingly painful. It has left me with constant discomfort in my lower left abdomen side. It feels like tugging, heat, and like something is stuck under my ribcage. It’s itchy and sometimes I get electric zaps up my abdomen.

My PCP has nothing for me. After pressing him, he said PT (which I tried twice weekly for 6 months) and surgery are the only options, but that surgery begets more scar tissue. I knew all this already, so not really helpful. The surgeon that did the surgery refuses to believe that it’s scar tissue, and thinks I have pelvic floor dysfunction. I went to a pelvic floor therapist and she said it doesn’t seem like that’s the problem… which I already knew it definitely isn’t. Her exercises felt like a joke. What’s odd to me is that there is so little info about this online, so I’m wondering if anyone here has had any experience with this, or any messages of hope?

I’m in weekly therapy but talking about it doesn’t help because the pain is physical and constant. Muscle relaxers don’t do anything. I take a steady stream of acetaminophen when I can’t psychologically bear it any more. Stronger painkillers do absolutely nothing for the discomfort, so trust me, there’s no concern in becoming dependent on them. Massaging the area and doing intense physical exercise seems to help somewhat, but I’m not sure if it’s only a distraction because it creates a new sensation in the area. I take THC edibles most nights and that helps only insofar as it distracts. But I don’t want to be distracted all the time––I want to be present for my life.

Psychologically what helps is the idea that maybe medicine will eventually figure out how to fix this, that maybe a genuine specialized surgeon can do adhesiolysis, maybe over time it will lessen? It helps to know that I was just doing the best I could––so many doctors recommended it. I guess I made the best choice available to me, one that’s supposed to be a straightforward treatment for endometriosis. A good friend had the surgery and recommended it to me, so it’s not like I went into this unthinkingly.

It doesn’t limit my physical activity. I can still run, do yoga, etc. It does interrupt my sleep and ability to just relax. I feel like I lost my body and mental health. Is there anything I’m not thinking of? I’m traumatized and feel failed by the surgeon and by my PCP.
posted by saturday sun to Health & Fitness (8 answers total) 1 user marked this as a favorite
You say massage helps a little bit. Have you had professional massages from a medical massage therapist who is adept at both abdominal massage and scar tissue remodeling? You might get a recommendation from your state massage board or by contacting one of the professional societies such as AMTA or ABMP. You will almost certainly want someone with advanced certification in specific modalities that are relevant here, or at least someone with provable advanced medical massage training. You're looking for someone who practices in an office, not a spa.

I used to be a massage therapist. New things may have been learned since I was in practice, but the state of the art for scar tissue was cross fiber friction followed by stretching. This is deep work, it doesn't feel pleasant, but a series of sessions performed by someone truly knowledgeable will likely help in a meaningful way.
posted by Flock of Cynthiabirds at 8:46 AM on August 12 [9 favorites]

I didn't have pelvic floor surgery, but I did have surgery to remove a tumor embedded in my diaphragm. Physical therapy has been a big help. I've done it in two phases: basic recovery stuff and longer term stuff.

Basic recovery stuff often "feels like a joke." If you can, voice your concerns while trusting the professionals and working along the regimen they guide you through. Part of this recovery phase is to identify where to go next, what works, what doesn't, range of motion limitations, etc. It's remedial, not olympic.

I did that for a year and some change. I moved to a different country and it took me some time to re-enter the PT space, but I gradually started back with a more targeted PT specialist. This kind of PT is much more like going to a gym. My therapist has PT certifications and a pilates certification. The movements and exercises are more focused, strenuous, and are aimed at doing more than just mapping and slowly expanding my comfort and range of motion. It's amazing to look at the notes from my earliest basic PT sessions and compare them with what I was able to do and how I felt when starting round 2.

Hang in there. Healing from core/truncal surgeries can be intense and slow. Those phantom sensations are very familiar to me and one in particular--the feeling of internal upward pressure that is unsettlingly present 24/7--was the main thing I went to PT to address. It's much improved now and continuing to improve as I build my core strength and movement capacity.
posted by late afternoon dreaming hotel at 8:53 AM on August 12 [1 favorite]

Have you talked to your surgeon - or another surgeon - about the possibility of adhesions? These are little bits of tissue that adhere internally between structures that normally don't adhere, and it sounds like this could explain your sensation of "tugging". They also might be leftover endometrial tissue that has adhered in the same manner.

I don't think this sounds like anything your PCP can really help with, and I would be looking for someone super-specialized in GYN surgery. You might find such a surgeon listed as a GYN/oncology surgeon, because they end up doing lots of GYN cancer surgery, simply because they specialize in this anatomy. I had a regular hysterectomy performed by a GYN/onc surgeon at a local academic medical center (note that academic medical centers with comprehensive cancer care are more likely to have such a specialist). This person will be knowledgeable about how to proceed to identify your specific issues, and would then be well-positioned to suggest remedies.

If you think this could be a viable path for you, if you share your location perhaps posters can recommend someone close to you.
posted by citygirl at 9:08 AM on August 12 [9 favorites]

I really feel for you. Your PCP sounds a bit dismissive. If it's possible for you to get a second opinion, and talk to a surgeon who specialises in endometriosis, then I urge you to consider it. I'm sure that there are lots more of them out there.

I had surgery in 2001 to excise my endometriosis (which was around my right ovary and lower intestine), but the pain came back with a vengeance a couple of years later. Like you, I had zapping pains and a tugging sensation in the spot where the endo had been -- my ob/gyn told me that was the nerves waking up after surgery.

I thought I would just put up with the pain -- after all, I was used to it, having been misdiagnosed for decades -- but it got too much. I went to another ob/gyn, who immediately suspected adhesions were the problem. She had me in for surgery in 2008, and lasered out all the adhesions she found in the lower bowel and around the ovary. I have some delightful color photos of my insides to prove it! She knows her stuff.

After recovering from the surgery, I immediately noticed that the tugging feeling in my side was gone, as was the burning feeling. I still get the odd bad day where I have to take lots of pain meds, but they are much rarer. I don't know if that's because I'm through the menopause now. I was never told to do massage or anything other than a cold pad or a hot pad on the pain.
posted by Orkney Vole at 10:01 AM on August 12 [6 favorites]

I had terrible pain in my side (years post endo surgery and a year post hysto) that was a severe adhesion around my ovary. Not visible on imaging. Thankfully my dr believed me and agreed we needed to remove the ovary regardless of what he found. But he was surprised by the level of adhesion.

You need someone in your corner willing to believe you and consider another look if possible.

I will also note that following surgeries I’ve had pain for years that eventually faded. But you know your body and you feel something is wrong.

Also endo surgery - even excision which is what’s needed - and hysto are not cures for endo and any surgery, especially abdominal surgery had a risk of adhesions forming. There’s no way to give you a definite “no” without looking inside your body.
posted by Crystalinne at 10:58 AM on August 12 [1 favorite]

Are you in any online/Facebook groups for endometriosis or scar tissue pain? That’s where I would start asking for names of doctors worth consulting for a second opinion in your general area—worth it in terms of expertise and bedside manner. Online groups can be mixed bag when it comes to emotional support, but as a resource for referrals they can be great.
posted by theotherdurassister at 8:51 PM on August 12

Hello! I was born prematurely and received extensive abdominal surgery, and for my whole life I've sported a massive belly scar and lots of scar tissue within my abdomen around my digestive tract. Parts of my large intestine were removed, and my appendix while they were in there, and I came This Close to having an ileostomy or colostomy bag for life. My daily pain is never below 1/10 and once a week or two I'll have a day where my pain starts at 3. If for some reason something I ate disagrees with me, or I've got indigestion or something, I will be up at a 4 for about half an hour while it squelches through my body.

I've also received professional therapeutic-massage training and probably a thousand hours of massage of many styles and goals, and it has been a sea change in my pain level, posture, and experience of living in my body. My life is before massage school ... after massage school. I can tell you that scar tissue adhesions are real, you're not crazy, yes it feels sometimes like there's bandaids pulling away from your skin but inside your body, sometimes there's three different kinds of pain going on at once because it's literally about your guts, your breath, your pelvis and abdominals and back. Really fundamental stuff that is hard to appreciate how important it is until it hurts all the time. I've been right there with you!! Scar tissue post surgery is just, much less flexible than any other tissue save for bone, and so it doesn't stretch and move like its neighbors, yet it is thoroughly attached, cause it's trying to do its job. So it's like it's fighting with its neighbors.

My very short term recommendation is to get some nice smelling oil with vitamins A and E and rub your scars daily to your own taste. The vitamin oil itself will genuinely help on the surface skin level, though it won't penetrate past the skin. But it is also important to just be in the habit of soothing your own body and feeling like you can press and squoosh and smooth your own skin. Don't let your painful parts be strangers. You are going to have to pass through moments that feel very weird, awkward, embarrassing, painful, all sorts of lowly bothersome emotions, to really care for your belly and hips and pelvis. Don't judge emotions that come up about it. I feel like this might sound silly of me to talk about, but the emotional acknowledgement is as important as anything. I had to go through a whole process of ceasing to Avoid my own belly and abdomen. I went from literally skipping over my body in the mirror, to having a good cry about grieving my own injuries and that I'll never have an un-surgeried body. The kind of deep introspective stuff you'd do on an acid trip. During and after massage school, this took me several years.

My long term recommendation is to seek professional therapeutic-goal massage. Look for a licensed therapist who works with scars and injuries, who uses terms like 'fascial' or 'myo-fascial' or 'structural'. There are ways to focus on literally unsticking the stuck layers of tissue, and they fucking work! They changed my life! My entire posture radically changed and I discovered a relief from chronic pain that I was unaware was even possible. You'll gain a great deal of understanding of your own body, even just by paying attention with your manual therapist. And you may find yourself emotionally vulnerable during a massage session. A qualified person will be used to working with people who have a bit of pain and trauma to think through while they're being worked upon. These techniques are not magic, and they are not instant. My body took years to change for the better.

How does this kind of massage work? Imagine that you are a soft unbaked croissant, with layers and layers of dough, and layers of butter between the dough. These layers are like the layers of tissue in your body, which sort of slide over each other, but are also stuck together like wet saran wrap. Some of them more stuck than others, especially around scar tissue. Now imagine the baker is squishing this dough until the layers are, ever so slightly, separating. And imagine that sometimes there is a mental or emotional component, the necessity of letting down your guard in an unconscious way, as you physically relax on the massage table. In the way that you wouldn't Really enjoy a pleasant relaxing massage if you couldn't stop thinking about something stressful- it's like psychotherapy, sometimes you have to be in the right mood for it. And this stuff, especially inside the trunk of the body, around the guts, and the pelvis, can make people feel very protective.
posted by panhopticon at 9:17 PM on August 12 [4 favorites]

On much the same note as everyone else, I really really recommend massage. I had my gallbladder out a few years ago, and a couple of abdominal hernia repairs following that. I had one area of my stomach where I would get consistent pain and its almost vanished since getting regular very intensive deep tissue massage from a physiotherapist.

My partner also had some really gnarly scar tissue preventing him from properly moving his knee after a car crash, and after about nine months of both massage and ultrasound it's night and day different. Again, this was administered by a physiotherapist.
posted by In Your Shell Like at 6:14 AM on August 13 [1 favorite]

« Older Can I Eat This? Colonoscopy Prep Edition   |   Cataracts and the elderly Newer »

You are not logged in, either login or create an account to post comments