Is it rare or medium rare?

Back in 2012 when I had my first surgery to diagnose and treat endometriosis, my surgeon was able to ablate the lesions from my Fallopian tubes, but he was not comfortable working with the lesions on my bladder. For five years these implants continued to grow and spread, until my recent surgery in 2018 where endometriosis was excised from my bladder, colon, and ribs. Sadly, there were implants on my diaphragm that my surgeon did not feel comfortable removing as she was not trained in working with the thoracic cavity. In these cases of thoracic endometriosis, only a handful of doctors in the world are skilled enough to work side by side with a thoracic surgeon to carefully ablate the implants using a technique called VATS (video assisted thoracoscopic surgery). Thus, after waiting and suffering 5 years between surgeries to remove the endometriosis (for a total of 20 years) there were still residual implants left inside my body that I knew was going to spread eventually.

A few months after my surgery I went into the hospital with excruciating abdominal pain. Upon admitting me into the ER my blood work revealed elevated lipases at 2000. A repeat blood work showed the same spike and so I was admitted as an in patient to continue doing more tests. That story ended quite quickly as is the beast of the medical system: two doctors claimed I had pancreatitis but the more senior doctor disagreed and sent me home. I suffered – and continue to suffer – 2 whole months with this chronic debilitating pain. It so turned out that after around 7 weeks I started to exhibit symptoms of a colitis flare and was going to pull through at home until I had these weird heart pains which were new for me and fairly frightening to say the least. Skipping ahead to when I got to the ER, my lipases were at 4000 and this alarming number enticed the doctors to admit me once again, even though this wasn’t what I came into the hospital for. Back on the pancreatitis train we went, proceeding with blood work, a chest X-ray, fecal testing, two endoscopes and the list goes on. While my lipases continued to bob all over the place during my 7 day stay at the hospital, my colitis symptoms subsided and the mystery continued. This visit brought on the interest of the general medicine doctors and the gastroenterologists who ruled out acute pancreatitis (I don’t drink and I don’t have a gallbladder to form gallstones: the two main causes of acute pancreatitis). They failed to fully rule out autoimmune pancreatitis as my IGg4 levels were normal (as is the case with type 2, not type 1). They also failed to rule out EPI – exocrine pancreatic insufficiency – a disease in which your pancreas lacks the fundamental enzymes to break down foods into basic nutrients and thus your body does not absorb nutrients from foods you eat.

Along the way I had suggested that since none of the scans showed any abnormalities in the pancreas, any blocks or any stones, that perhaps this could be endometriosis on the pancreas, making it angry, and causing it to spike in lipases. The theory was not thrown out. In fact, the two teams of doctors thought it best to bring in the Gynaecological team for a consult to see how plausible this could be. First came the residents who stated this was an interesting theory although the endometriosis on organs such as the pancreas and liver were too rare. I begged the question “is it more rare to have it on my organs or on my diaphragm?” – needless to say the answer was not provided. The second step was to ask the attending doctor what he thought about this theory. Instead of having a voice he played the politically correct card and deferred to my endometriosis specialist who unbeknownst to me is the head of gynaecology at the hospital. Here is what she said:

I have never seen endometriosis on the pancreas in all my years of practice and I strongly believe this cannot be the case. She would be written up in a case study. I have told the patient that she should be on Lupron to use as a diagnostic tool to determine whether the pain she is having is in fact associated with endometriosis. I now, however, think that we should hold off on lupron as it could confound any other finding for this cause of pain, and so we will back out of this case until the other departments have run up against a wall,… and then we can bring lupron back on the table.

That, my friends, was the last time I heard from my endometriosis specialist aka my quarterback. I was livid. I was exhausted. I felt denied and betrayed all at once. The other piece of this story is that she refused to refer me to THE ONE AND ONLY doctor in Canada who is qualified to remove endo using VATS until I performed the lupron diagnostic. She never came back onto the case, and I fired her. Because, I can!

Today I continue to suffer from the abdominal pain, in the comfort of my own home, and have a few extra tests booked as the doctors are curious and excited to determine what is going on with my body. I cannot say I was denied proper care because the doctors at the Vancouver General Hospital have always gone above and beyond. What I can say is that while endometriosis on my pancreas may sound like a hilarious and rare probability, I have since been in touch with a handful of endo sisters who have either suspected or confirmed endometriosis on their pancreas and/or liver. So again, I ask you, is it really that rare, or is it medium rare?

Endometriosis is a disease that effects 1 in every 10 women. Some say it is genetic; others attribute the disease to early life trauma, and in some cases we hear cockamamie theories such as “women bring this upon themselves by having sex too early”. Women at the age of 14+ begin seeing a gynaecologist for yearly Pap smears. These doctors are specialized in the reproductive system but so few of them understand endometriosis. There are highly specialized endometriosis surgeons who have spent a great deal of time understanding how this disease spreads and furthermore how to eradicate the endometriomas from organs and spaces outside the womb. These surgeons, albeit experts in the field, may or may not be able to work with certain organs such as the bladder, the colon and in some cases even the diaphragm. Even worse, a very small number of endometriosis surgeons are trained in excision surgery; they continue to perform ablation surgeries that simply cauterize the lesions. The point is there are very few resources dedicated to better understanding this disease, and very few professionals who are specialized in the field of treating endometriosis.

If you are looking for proper care for your endometriosis please ask the questions you need to, to determine which piece of the puzzle your doctor is able to take care of. If your gynaecologist does not know how to treat endometriosis make sure they refer you to an endometriosis specialist. If a surgeon wants to perform surgery to treat the endometriosis make sure they are conducting an excision surgery – this is the only type of surgery that will remove the lesions and give your body a fighting chance.

What does my child have to do with this?

Why so many of us dont want to talk about Endometriosis

I really hesitated in writing this article for fear that there might be backlash. But I have discovered recently that the more I am honest with my posts, the more people are speaking out. So with the risk of making some of you angry, the trade off is to make more of you feel less alone.

When I finally reached out on social media I found that nobody – with the exception of a few powerful endosisters who have found their way – were not keen on commenting on posts or making themselves obvious sufferers of the disease. This corroborates the sentiment of several endometriosis R&D companies who say they feel lack of support from endometriosis patients as we dont stand up and fight for the cause. Instead, we as patients evidently become quite defensive about new drugs and gimmicky solutions that ‘may’ help our pain or furthermore, ‘cure’ our endometriosis. But it cant be because of periods. For Christ Sake the IBD community is VERY vocal and you cant get us to shut up about poop talk. What sets us apart?

When I was 14 I was loosely diagnosed with a disease called endometriosis – a disease which would cause ‘heavy and painful periods’. I was an anomaly as I later found out, because here are the lame stats that go along with the disease:

The average diagnosis takes about eight to 10 years. During that time, women typically go through seven to 10 doctors. Yet, endometriosis is quite common. An estimated one in 10 women have endometriosis. That’s an estimated 176 million women worldwide. – Danielle d’Entremont, CBC radio interview 

No other disease that I know of comes with a statistic of failure to diagnose, unheard cries for help, and years of life altering pain; permanent damage to the body and the ego. While I continued the journey of “heavy and painful periods” from my teens into my 20s, I came to realize why women dont like to speak out about this disease, despite the 1 in 10. In order to explain, I will use my own story.

I was 27 years old, married, with a house and two dogs – a good life. My husband at the time was a chef, and I was home alone most of the time. What I wanted more in life, unknowing of its challenges, was a baby. I wanted to be pregnant, I wanted to raise this child and I wanted what every woman was supposed to want – a family. We tried, and tried, … and tried. Looking back I should have bought pregnancy tests in bulk. Failed month after month made me skeptical of why this could be happening. We werent old, we didnt do drugs, we werent sick. I spoke with my family doctor who told me that it could be a number of things preventing me from getting pregnant but that the only way I could get proper care was to have 2 years of failed pregnancy as a trigger to refer me to a fertility doctor. I did what any woman would do – I lied. While it had only been shy of a year since we had started trying to get pregnant I told the doctor it had been well over two years. That was that, papers were signed and I waited to see the specialist. The first appointment with the fertility doctor was on my own (as most things were back then but thats a whole other story). We looked at blood work, habits, body weight, etc. The second visit was with my husband, then a follow up to let him know his swimmers were in good condition. He was off the hook. Which meant more focus on me. An internal untrasound revealed that I had very low egg count, and one blocked Fallopian tube. If any of you haven’t had the ‘champagne’ before, its a procure where they stick a needle along the inside of your Fallopian tube and push through it a bubbly fluid that should leak through the other end if the tube is functioning. Mine… was blocked. How do they unblock it you ask? They push the fluid through at a higher rate and hope it dislodges whatever the f%&k is blocking it. I cried like a child! Despite this quick fix, months went by without getting pregnant and the doctor finally pulled the trigger on doing a laporascopic surgery to determine and remove the endometriosis. In this case they book the OR for 1 full hour so that if any endometrial tissue is there, they remove it at the same time since they are already inside me. When I woke up from surgery the doctor told me I had stage 2 endometriosis and that he removed tissue from my ovaries but he didnt feel comfortable removing the tissue from my bladder. Note, the surgery was an excision surgery, not an ablation which didnt exist at the time.

IMG_0227

In the months leading up to the surgery, I will admit to the public for the first time ever, I had left my husband and knew I wasnt trying to get pregnant anymore but decided to go ahead with the surgery in silence in hopes it would give me a few years of pain-free life. During my consult with the surgeon I asked him what was to follow. He said the surgery would give me a 3 month window to get pregnant and then it would all start growing back again. I delicately asked if he would continue to care for me even if I gave up on trying to conceive, and his answer was,… No. In his practice, the only concern was conception; not endometriosis management. I went along in silence for 5 more years, with steady pain, hoping that was the last of my endo, until I couldnt anymore. The endo came back last Summer with full force and I cried with mercy to thousands of women who would listen to my story online. I needed to find an answer to a fairly aggressive endometriosis growth rate (bladder, colon, ribs and diaphragm) from those who had been through the snakes and ladders of various drugs and surgeries.

Over the last year I have shared my story and I have met some of the most wonderful women who suffer (and have suffered) in silence either 1) over their infertility or 2) their struggle to get a diagnosis because they have no desire to get pregnant. In both cases, women feel ashamed of their bodies, their lives, their inability to DO or WANT the one thing we as women are supposed to do – bear children. On one hand we fear the shame of telling our families and friends that our bodies are too sick to bear children. On the other hand, we feel scared and threatened that we will be judged for not wanting to provide a life to this world. In both cases, we lose. And when there is a loss, it is too hard to talk about it. This is why, we women with endometriosis (PCOS, adenomyosis and several other women-only diseases) suffer together – in silence.

There is no treatment, there is no cure, there is no screening method and there are very few specialists who know how to treat us. My goal, as a writer and an endowarrior, is to help bring awareness to the disease so that women who have daily pain and anguish can soon be recognised as strong, courageous, and fearless.

The Tango Between Two Diseases

Symptoms from Endometriosis and Ulcerative Colitis

I feel like my endo and my UC have been doing the tango, competing for first prize. On days when my UC  tends to be on the quiet side, my endo craves to steal the scene and do a few painful twirls on my diaphragm. Then they swap back and forth – never a dull moment! For those of you who have both diseases and potentially have diaphramatic or thoracic endo pain, you know that the localized pain is very similar in location and intensity to your UC pain. Lets see if I can explain with an image…

female pain points v2

The image above is a great depiction of the internal female body, and the areas that are most affected by the two diseases. I have tried to do a mock up of where my pain areas are (pink = endometriosis; orange = ulcerative colitis). As you can see the areas that I feel endo pain are very similar to the areas I feel UC pain. For instance, I have endometriosis on my ovaries (not shown here) and adhesions on my left ovary which impacts my left sciatic nerve. However, after my entyvio infusions or during extreme UC flare up, I feel intense joint pain in both my left and right hips. While my diaphragmatic endo pain appears to be quite higher up than the upper colon pain these areas truly are close together when you are trying to discern one from the other.  And lastly, pain in abdomen and areas neighboring the abdomen caused referred pain up to the right shoulder.

Note: I also dont have a gallbladder so this is why there are complications between my liver and my colon, and why I take bile salts when I remember to.

Some good news though!

  1. Today I had my very first firm, intact, pain free poop in 3 months!A shout out to the ‘Ulcerative Colitis’ facebook group who confirmed that it IS possible to start feeling and seeing results after only two loading doses of Entyvio. I was worried at first because after both first and second loading doses I was feeling abdominal pain that eventually subsides; with the last loading dose causing extreme joint pain. When my UC joint pain subsided I was unfortunately left with sciatic pain from my endo,… but whose counting really?!? *insert eye roll here*.
  2. I am on schedule for my excision surgery on March 12th with one of the best doctors in the industry. It will be a long and drastic procedure that will aim to remove endo from the typical places as well as up near my diaphragm. The only thing that could stop the surgery from happening is if I have a flare up but Im doing everything in my power to prevent that from happening! I am so excited!
  3. I need a third positive thing…oh.. i know! I just added eggplant in my diet!

 

Syng Pharma aimed at a long term treatment for endometriosis

I was introduced to a company called Syng Pharmaceuticals who is working on a long term treatment for endometriosis. Nobody wants to throw the C (‘cure’) word around lightly but I was very impressed with the science behind this. Vinay Singh, CEO of Syng Pharmaceuticals, shared with me the science behind this company including some insightful information pertaining to the lack of pharmaceutical portfolios focused on/funded to find a cure for endo. In fact, Abbvie, creator of Lupron and its newly designed oral version Elagolix, have dedicated their expertise towards finding a band-aid for the pain. Its the best we have got so far.

About Syng Pharmaceuticals:

SYNG Pharma has discovered a biomarker for endometriosis, a protein which has a role in allowing endometrial cells to spread outside the uterus. SYNG Pharma has developed a proprietary test which has potential to become the first line test for endometriosis. SYNG Pharma’s current lead candidate (SP012) is a molecule which specifically targets this biomarker and inhibits the proliferation of endometriotic lesions. SP012 has potential to become the standard of care as it may have disease modifying properties and deliver benefits without affecting reproductive outcomes.

Syng Pharmaceutics is part of the Toronto Mars facility and has received seed funding in the first few years of experimental development. A publication demonstrating early signs of success using a mouse model showed very promising results. As a follow up, Syng Pharmaceuticals has received praise and buy-in by many gynecologists and endo surgeons who believe this could be a sound treatment for patients IF the results can be shown on human tissue.

In order to do so, Syng Pharmaceuticals is now in pursuit of finding funding for this next round of testing. While somewhat unusual, in the meantime they have set up a gofundme project to raise some money.

If you are interested in helping out please click the link below.

https://www.gofundme.com/endometriosis-diagnosis