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Problems healing from open inguinal mesh repair
I am thankful to have found this forum tonight. I am 3 1/2 months out from an open inguinal hernia mesh repair and I am still having a lot of pain.
I went into this surgery very naive and uninformed as my surgeon didn’t mention the possibly of a single complication and I blindly trusted that this would be a great experience. I was told I would feel like I had been kicked in the groin for the first week or 2, but after the initial healing, I would feel much better than before surgery, with no more hernia pain. In spite of my positive expectations, this has been a pretty negative and life changing experience.
I had really horrible pain for several weeks after surgery. (Left the hospital vomiting and coughing from anesthia which I think made my recovery harder). Now the pain has lessened some, but it has never gone away. I can walk little bits in my house and pain is worse from sitting upright on hard chairs. Resting and reclining give me some relief. The few times I have driven I have had pain, but the next few days pain is much worse. So it seems when I have more movement I have more pain.
My greatest areas of pain are in the pubic bone (with pain stretching over to the midline and past to the other side of my pubic area). It often feels like small bits of barbed wire in one spot where the doctor said she anchored the mesh to the bone. The pain that has spread didn’t start til maybe a month after surgery. My skin is so sensitive now so that might be some type of nerve pain there on top of the deeper, barbed wire type pain. Also, the whole place where mesh was sutured in the crease of my leg is painful but it is nothing compared to the other pain spots.
I also had a sharp,searing, burning pain a few inches above my incision that started 3-4 days after surgery. It lessened for awhile, but now there has been a new lump there that was not there before surgery.
My surgeon told us she doesn’t know what to do for patients who have pain after 6 months so she refers them to physical therapy. I also was treated with 2 courses of antibiotics for a suspected mesh infection about 2 weeks out from surgery.
I have followed all my recovery instructions carefully (and the pain really helped me to be good with not doing too much) but the the painful spots I just described have not improved and I was told by 3 months I should be mostly pain free. I am functioning at about 25% of what I could do before surgery. It has been so life altering and the constant pain is discouraging.
What can be done about the pain in the pubic area? What is it from? I wondered if my mesh came lose and was stuck down there as it often feels like there is “something in there”. Has anyone else experienced this and what can be done to fix it? From reading other posts here it sounds like it could be nerve entrapment or something like that? Please educate me if you can.
Also the lump a few inches above my incision….any idea what that can be? . It is painful to touch and often makes me bend over walking because of the pain. It seems to have grown a bit smaller and has moved over an inch or two.
I am following up again next week for the 3rd time with my surgeon, but honestly have serious concerns about her ability to help me. What she wrote in her notes from my precious visits didn’t match up with what she told me, or what I told her. (for example saying I was back to my pre-surgery activity at 10 days out from surgery and that my pain was already better than before I had surgery. I wasn’t even able to dress myself or drive myself to the doctor and was on narcotics when I saw her. ) I say that to say, looking to her for help doesn’t seem to get me anywhere. Love her as a person, but she wasn’t honest to me going into this surgery and I am paying for that now.
Any suggestions you can provide on what steps I can take now would be a great help to me.
She used Progrip Mesh (15cm) with tacks and sutures. And my indirect inguinal hernia was very small and that seems like a large piece of mesh for that small of a hernia? She sent a biopsy of the hernia sac that measured 1.5 x1x1 cm. I didn’t know she was going to do a biopsy and found out when I got the pathology bill. I called to check on it, and the first report was concerning so they did more testing. Final report is good. Is it weird that the surgeon never told me about this?
Sorry this is so long. I am like many people on this board….desperately needing some help. Thanks for reading!
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6 Replies
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Sorry, no one that I know of in Arizona. Dr. Hibner only sees females with pelvic pain, not hernia-related.
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Dr Michael Hibner in Arizona is well known for pelvic pain, but I am not sure if that includes hernia complications or not. It might be worth a call to that office to ask?
Dr David Chen at UCLA California and Dr Shirin Towfigh in Los Angeles (she runs these forums) are also well known for experience with these type of issues and are probably the next closest to Arizona.
Good luck and keep us updated on your progress.
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Thanks for sharing that perspective. That’s helpful. Also I appreciate the caution to proceeding with mesh removal.
Do you have know anyone in Arizona who does routinely treat Chronic Post Inguinal Pain?
I would like to know of another resource besides Dr. Peterson if you have any one to recommend who I could see personally.
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Every surgeon has their own spiel regarding risks and benefits of hernia repair. Discussion about chronic pain varies based on each surgeon’s expected outcomes and experience. Trust that your surgeon did what she felt was in your best interest. Surgeons and other doctors in general want the best for their patients, including good outcomes, which is a reflection on them. So I do not want to encourage a pessimistic analysis on intentions of your surgeon. As an example, if you had nausea and vomiting after surgery, that is typically either from the anesthesia or is unrelated to your operation.
I agree that you need an evaluation of your repair. Imaging will be an important part of it. Dr Petersen is a very good option for patients like you who have had open hernia repair with mesh.
but mesh removal and revisional surgery is serious. For example, In women, there is risk of nerve injury or need for nerve being cut which my affect sensation to the labia and possibly therefore affect sexual gratification. Thus I would still encourage you get more than one consultation to understand your diagnosis, treatment options, and all risks and benefits associated with each option.
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Thank you so much for your response. I appreciate the suggestions. I live in Arizona and had my surgery in Tucson. Phoenix is a 4 hours drive , but I would be willing to travel for someone who has experience in helping treat this type of pain.
Do you have any suggestions on expressing my disappointment with my surgeon for not letting me know that patients can have chronic pain after this surgery. Is it possible she is unaware of this? She wrote that she informed me of possible complications, but that is not true. Since I have seen her writing things in my patient record that are completely false I have struggled to know how to address it. (Like saying my vomiting leaving the hospital was from an unrelated illness. When I woke up from surgery nauseated, but was fine beforehand.) It has made me wonder if she is somehow trying to leave a record which will absolve her of any responsibility for what has gone wrong. Any advice from a surgeon’s perspective on how to address this would be appreciated.
I am expecting a call from Dr Peterson tomorrow. I filled out a survey on my mesh pain, and they called to see if I would like a consultation with him by phone.
Do you have any recommedations on mesh removal with him for someone with my symptoms? They make it sound like a wonderful opportunity, but I won’t commit to anything yet.
Thank you again for your helpful insights. You are a blessing.
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So sorry to hear what you’re going through.
This is is a complex problem and I highly encourage you see a surgeon who routinely sees and treats Chronic Post inguinal hernia repair mesh.
Progrip mesh has had excellent outcomes. Not sure about the use of tacks and what the technique was. Every surgeon may have a different technique.
You’re not alone. Women have been shown to be more likely than men to have chronic pain after open inguinal hernia repair with mesh.
Where re do you live? Perhaps we can provide you with a good referral.
Also, ice may help with your pain.
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