Thoracic Endometriosis is when disease proliferates on the diaphragm. Lack of diagnoses has led doctors to believe that this is rare, but as awareness increases so does the diagnosis of women all over the world. Thoracic endo is very much real and extremely painful.
Symptoms of Thoracic Endo:
Shoulder pain, neck pain, mid back pain, chest pain, difficulty breathing and shortness of breath. Pain is usually worse on your period & is typically right-sided. It is felt in the shoulder and neck because endometriosis typically will grow over the phrenic nerve, which sends pain signals to that particular area.
My personal symptoms:
It started off as very sore neck and shoulders then progressed to severely sharp pains in my right shoulder two weeks out of the month. I was unable to lay down or sleep at night. Eventually the pain traveled to my chest, making it difficult to breathe.
Risks of Thoracic Endo:
Lung collapse during period.
What is the best way to treat Thoracic Endo?
Thoracic endo is best treated with excision performed via video-assisted thoracoscopic surgery (VATS). I highly recommend Dr. Sinervo at the Center for Endometriosis Care.
My experience with VATS at the Center for Endometriosis Care
Dr. Sinervo My very cool Dad
During my first excision surgery in 2016, Dr. Sinervo was able to spot some diaphragmatic endo by surprise, as I was experiencing no symptoms. To completely excise thoracic endometriosis, a thoracic surgeon must assist and perform video-assisted thoracoscopic surgery (VATS) with relatively small incisions through the side of the chest. Because of this, we were not able to investigate further and hoped that symptoms would never occur. I wasn’t too worried about it.
Unfortunately, about six months later I started experiencing soreness in my neck, which escalated into sharp shoulder pains and trouble breathing. I had no idea what was going on at first. I even saw an orthopedic thinking I tore something in my shoulder. Then I got massages every week thinking it was possibly muscular. Eventually it became severe, while on my honeymoon, where I experienced almost constant stabbing shoulder pains and trouble breathing. Luckily, we called Dr. Sinervo to ask his opinion and he suspected ongoing thoracic endometriosis & recommended surgery.
On Jan 18th, 2018 I underwent a second excision surgery with him, this time VATS to remove thoracic endo. I am 8 weeks post-op and I am feeling so much better!
The CEC never fails to exceed my expectations in patient care. They run things very smoothly and make the process as easy as possible for patients. After both of my surgeries with them, Dr. Sinervo has never failed to timely return my calls and questions with detailed answers. I have never met a doctor who cares so much about his patients. He doesn’t just perform surgery. He is with you throughout the rest of your journey. I know I can talk to Dr. Sinervo and count on him for the rest of my life.
Prior to heading to Atlanta I had a Pulmonary Function Test and CT of chest. On the day before the surgery, I met with Dr. Sinervo to ask questions and go over the procedure. I then met with Dr. Gouldman, the thoracic surgeon, who was extremely kind and put me at ease.
Day of Surgery
I was so nervous the day of surgery, and probably the most scared I’ve ever been in my life. But now that it’s all over, I realize it wasn’t worth the worry. I was given the option of an epidural, which is recommended by Dr. Sinervo, and I’m very happy I did it. Receiving the epidural was not painful at all, and I think it really helped with post-op pain.
During the first half of the surgery Dr.S performed laparoscopic to clean up adhesions and cysts. As expected, a year out from my first excision to remove stage 4, there was only a trace of endometriosis. That goes to show how incredible Dr. S is.
Next, I was turned on my side (unconsciously of course) and Dr. Gouldman performed VATS to excise the endometriosis on my diaphragm.
I woke up after surgery in very minimal pain. During the procedure you are given a chest tube to drain chest fluids and it remains in place for two days. That was the most uncomfortable part, but once it came out I felt great. I didn’t feel any pain when they removed it. It was super important to use my breathing device and it took me weeks to get my capacity back up where it was before.
Once when got back to our HomeAway after three days in the hospital, the epidural had worn off and it was important for me to stay on top of my pain meds and muscle relaxer. You really need to be smart about this!
Three days later, I had my post-op visit with Dr. Sinervo and another with Dr. Gouldman. After that, we were on our way home!
The most important advice I can give is to let yourself rest. Overdoing it will set you back so much, it isn’t worth it. You cannot lift more than 10 pounds for the first 8 weeks and cannot drive for 4 weeks.
The first three weeks were kind of a rollercoaster for me. One day I’d be doing fantastic and the next I’d be hurting pretty bad. Hiccups were a bitch, so always have a pillow to brace yourself with. Also, don’t talk or laugh too much 😦 So sad, but honestly it will make you sore for days. Nevertheless, it is important to keep walking and not remain stagnant. I tried to walk a quarter mile every morning. KEEP UP with the exercises they provide you! They helped me so much.
By week 6, things started to become more consistent pain-wise and I could feel so much improvement. By this time, I was able to sleep on my right side. The left side of my diaphragm was compensating for a while, which made it really sore and spasm a bit.
I am now 8 weeks post-op and doing better than I ever imagined. I still have to take it easy, and I am not yet driving long distances or doing high intensity exercise. I plan to take it slow and steady.
Visceral therapy with a certified therapist has been extremely helpful to my recovery.
I was scared shitless about getting this surgery and almost didn’t do it. But honestly, it wasn’t that bad at all. Getting this done and is one of the best decisions I ever made. It is so worth it!! You do not want to risk a lung collapse in the future, let alone live with this kind of pain. Thoracic endo is pretty rare, and there isn’t much you can do to help it other than excision surgery. I think that anyone having severe symptoms from thoracic endo should strongly consider thoracic surgery for the sake of their future and well-being. Dr. Sinervo is one of very few surgeons who perform it and is certainly one of the best – or the best.