Intro to Endo

intro-endometriosis-journey-de-smet-dossier

During the pandemic, it is easy to feel isolated and disconnected from people and even from yourself. For most of us, our lives have completely changed, some aspects for the better and some for the worse. I find that women sharing their true stories and experiences (without filters) is helpful to other women who may be going through the same thing. In a time of isolation, it is nice to know you are not alone.

 

So today, I thought I would share a little bit of my personal struggles over the past year, in an effort to connect with others who might be experiencing some of the same things.

 

I started 2020 with excessive pain in my lower abdomen which was apparently caused by large ovarian cysts. It had felt as if they ruptured inside of me, but now I realize they were just severely inflamed. I had been bouncing around to dozens of OBGYNs over the years, always complaining of severe period pain, with their only response being birth control or get over it. The OBGYN I was going to at the time, simply said the cysts needed to be surgically removed and referred me to a surgeon. I met with the surgeon the same day, and promptly stormed out of his office. He was berating and questioning me about what I knew about my cysts. His arrogance and reluctance to answer my questions left me feeling more lost and stressed than ever. Little did I know, this would be the first of dozens of meetings that would go this way over the coming weeks.

I finally met with a surgeon, recommended by a friend, who was able to tell me that my cysts were endometriomas caused by endometriosis and he promptly ordered an MRI. He spent time to discuss the effects endometriosis has on fertility, warning me that it might be very difficult to conceive. This was heartbreaking, as we always thought we would try to start a family in 2020. So I spent my 35th birthday getting an MRI and feeling a little hopeless about how to move forward. Shortly after my MRI, the surgeon told me the severity of my endometriosis, it was stage IV- which is the worst stage- meaning that the endometriosis (which is essentially the same tissue as the lining of the uterus) was covering most of my abdominal organs, sticking them together, and I had deep pelvic adhesions on my pelvis wall, in addition to the large cysts on my ovaries. He went on to explain that having the endometriosis excised (surgically cut out) would be the best chance at relieving my horrible period pain and make it easier for me to conceive. The only problem was, cutting the cysts out of my ovaries would reduce my egg reserve, making me more infertile than before surgery. He suggested I visit a fertility doctor to get their opinions about surgery.

We met with two fertility doctors, both essentially saying the same thing- it would be best to have the endometriosis excised, but to leave the cysts on my ovaries until I could conceive. There were a few problems with this option: my painful periods would not be eradicated, and as the cysts grew bigger, they would continue to invade my ovaries, further compromising my fertility. And it would mean another surgery in the future to remove the cysts.

It wasn’t until I mentioned my situation to an old friend, that I started to discover how common endometriosis is, 1 in 10 women in the United States suffer from endometriosis and on average it takes 10 years to diagnose. She and her sister both had gone through similar experiences and recommended the Facebook group, Nancy’s Nook. This changed everything. Nancy’s Nook provided so many resources on how to advocate for yourself when meeting with surgeons who suggest outrageous hormone altering drugs or hysterectomies. It also provided a list of vetted, skilled excision surgeons. I learned very quickly that all of the surgeons I had met previously, did not show up on this list. I felt more empowered than ever and spent a few weeks reading through all of the information on Nancy’s Nook. I finally was able to get an appointment with the only surgeon in NYC that actually accepts insurance for this type of surgery (and who was on the approved excision surgeon list). I finally felt like there was a light at the end of the tunnel. This was the end of February, and the first available consultation appointment wasn’t until April, with pending surgery in May. So now I just had to wait. Feeling like I had to take some control of the situation, I started an anti-inflammatory diet. Endometriosis is an inflammatory disease that can be aggravated by caffeine, sugar, alcohol, preservatives, animal proteins, soy and gluten. We had been vegan for nearly 4 years at this point, but I made the extra effort to cut the remaining inflammatory agents from my diet as well.

Then Covid hit NYC, mid-March, throwing everyone’s lives into turmoil, including ours. We decided to escape the overcrowded city for our quiet cabin in the woods, to safely isolate. Shortly after arriving at the cabin, we found out “non-essential” surgeries were being postponed until further notice, this included my excision surgery. Another level of despair and distress set in, along with isolation away from friends and family. I was able to do my surgical consultation over the phone and my surgery that was originally scheduled for May was pushed until September, assuming things with Covid died down by then. I tried not to get too agitated by the change in plans, convincing myself there were people in the world worse off than me. I threw myself into cabin life: gardening, baking, cooking and working on our cabin renovations. This was probably the best thing for me. I was able to slow down, decompress, reconnect with nature and find the good in the everyday.

To our surprise, in July, we found out we were pregnant! I attribute this to the anti-inflammatory diet, and slower, less stressful lifestyle we had adopted. Knowing that women with endometriosis have a much higher risk of miscarriage, we tried not to get too excited. (35% chance of miscarriage with endometriosis compared to women without endometriosis who have a 22% chance of miscarriage in the first trimester). But now, here we are, at 31 weeks and we couldn’t be more thrilled to meet our baby boy in mid-March.

If you are struggling with infertility, endometriosis or just the feeling of isolation, I see you and I’m here for you. Don’t hesitate to reach out.

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