Jessica's battle with Diaphragmatic/ Thoracic Endometriosis (Part 1)

August 21, 2014

My period started at the age of 10 and a half. At the age of about 13, I was experiencing some pretty painful periods. By the age of 15 I had seen a gynaecologist about my periods, as they seemed to become worse over the years. I was told that I probably did have Endometriosis, (was not really explained what it was) that it was normal to have period pain and not to worry as surgery could treat it. I was also told that I was too young for surgery so I was put on the pill. Yep that should fix the problem!

 

I was diagnosed with Endometriosis via laparoscopy back in 2005 and only diagnosed with Diaphragmatic Endometriosis in 2012 (but with symptoms since 2004). Here's my story about my battle with Diaphragmatic Endometriosis.

 

After many years of painful periods along with a two year "new pain" in my right upper quadrant (in conjunction with my period), I was experiencing some pretty painful symptoms; starting from the bottom of my right rib all the way up my back & chest, shoulder, arm, collar bone & neck. The pain is a mixture of a stitch under your ribs like you have been running too hard with a burning/stinging sensation. When the pain flared it felt like I was breathing in broken glass. I thought I had broken ribs (thankfully enough I have been fortunate to have never broken a bone in my life). I had countless tests performed to investigate such as MRI, CT, Ultrasounds, Nuclear medicine tests, bone scans & an endoscopy. 

 

I also tried Chinese medicine, acupuncture, naturopathy, osteopath, physiotherapy & even tried several diets along the way. As nothing was found & I was still in severe pain, I had my first surgery to investigate. I was finally diagnosed with endometriosis via laparoscopy in 2005. I had a large amount of Endometriosis burnt off the back of my uterus & throughout my bowels. I was put on the Depo Provera shot. My symptoms did not improve.

 

Two years later I decided to try a new gynaecologist which lead me to surgery #2. More Endometriosis was burnt throughout my pelvic area. I was put back on the pill. Still, my symptoms had not improved and I was forced to quit work as the pain became unbearable. I started to do my own research. I googled right shoulder pain with period & to my surprise I read "Diaphragmatic/Thoracic Endometriosis”. 

 

The more I read the symptoms, the more I was convinced that this is what I had. As I already had two surgeries with no pain relief, I was referred to a pain management clinic. In an appointment with one of the pain specialists I mentioned reading about Thoracic Endometriosis. He mentioned he hadn't personally seen a case in the years of his profession & that it is extremely rare. But to put my mind at ease I was referred to a local Hospital, which has an excellent team of gynaecologists who brought me to surgery #3 in 2012. This time the Endometriosis had spread to my bladder, left ovary, flank, abdomen, side wall, cul de sac and finally found 10+ nodules on the diaphragm. A few nodules that were at the bottom of the diaphragm were excised, but as the surgeons could not reach the rest of the diaphragm and it's not their field, six months later I had surgery #4 to excise Endometriosis from the diaphragm and the liver also. This was performed by a GI Specialist. Unfortunately some Endometriosis was missed as there was too much bleeding & I was under longer than expected. 

 

With my third surgery at the same Hospital I was treated as an outpatient and unfortunately the waiting time to see this particular surgeon again privately was months. This led me to googling "endo specialist". I read a few reviews and got an appointment for the next day. My new Gynaecologist ordered an internal (deep endometriosis) ultrasound & I was put on Synarel spray for 6 months for some temporary pain relief. At the 3 month mark I had some much needed pain relief, but the “chemical menopausal" side affects were horrible... I was put on the waiting list to finally have surgery to remove the left-over nodules.

 

I began to see blood every time I blew my nose coincidently with my cycle. My Gynaecologist ordered an Ultrasound & CT (Chest & upper abdomen). They found I had a small Hepatocellular adenoma, (also hepatic adenoma: an uncommon benign liver tumor which is associated with high estrogen) as well as a large hernia in my diaphragm. A large portion of my liver had pushed through my diaphragm into my chest pressing against my lung. 4 weeks later I had a thoracoscopy (VATS) and had the hernia repaired. The surgeon also did a biopsy of a "spot" that caught his eye on the top of the diaphragm. Biopsy confirmed It was endometriosis measuring 15x12x10mm. It was an extremely tough recovery, especially in hospital with the chest drainage tube. 

 

Since then I have been recovering slowly since the VATS so now I am ready to have surgery to finally have endometriosis excised from my diaphragm & wherever else needed. In order for my Gynaecologist to have a "plan of attack" I had a special MRI to help detect endometriosis at the Austin Hospital. It showed that I have a 6x3x5mm nodule on my bladder, a 7mm endometrioma on my left ovary, a 1.3cm nodule in my liver (the tumor) & on the diaphragm 2 nodules side by side 5 and 7mm that may lie within the lung/pleura. 

 

I am booked in for July the 15th. I am counting down the days. 

 

Battling endometriosis has been by far the most emotional, physical & mental challenge I have ever come across. Since being diagnosed I have felt the need to help other women battling this disease. It is so unfair that we have to suffer in silence. My approach is to turn a negative into a positive.

 

In hope to spread awareness I have written to several women’s magazines & to my local MP, which was responded by a "sending you our best wishes" letter from the Health Minister Peter Dutton & Shadow Health Minister Catherine King. 

 

My biggest achievement is helping administrate 2 Facebook support groups for Endometriosis sufferers. One of the groups is for Australian & New Zealand women 

https://www.facebook.com/groups/australianendo/ & the other group is available worldwide for women with Thoracic endometriosis. 

https://www.facebook.com/groups/Lungendo

I have also created a support group for Women in Melbourne who suffer from endometriosis. 

https://www.facebook.com/groups/MelbEndoWarriors

 

If I could change one thing, I would let all women know that it is definitely not normal to be in pain. It's not just a bad period! I would do this differently because I have spent well over a decade believing that it is normal to have painful periods. I could have enjoyed my life more instead of accepting chronic pain. 

 

Jessica Panetta

Age: 29 

Thoracic Endometriosis sufferer

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