My Story with Endometriosis Part 2: Fighting For a Diagnosis & Finally Getting Treatment
This is where the story gets really sad for me. It’s quite honestly, extremely hard to be open about this next part, but again, this is what these awareness months are for.
I married a wonderful man, I opened The Clara Clinic with my amazing business partner, brought on some incredible colleagues, and we weathered the pandemic together as a new business. During this time, I also helped TONS of my patients conceive and bring their children into this world. Many of those patients had PCOS and endometriosis, and watching them expand their families with ease brought me a sense of optimism that I could do it too.
Obviously, having been diagnosed with PCOS, I was always scared of the prospect of trying to get pregnant. There was also that huge elephant in the room that I had been avoiding for so long, my pain. I had always been concerned it would rear its ugly head when I’d finally try to expand my family. In any case, I was so inspired by my patients, and after two years of marriage, I decided I was ready to confront it, and we would take this next step.
Realizing I Needed Treatment
Writing this part is hard for me, because I think about all of the missed chances, opportunities, and what this disease took from me over the subsequent two years.
We tried for 6 months, nothing happened. Being the proactive, health-forward person that I am, I began to act. I paid for extensive hormonal blood work and ovarian reserve testing, I made my husband get tested, I started seeking out treatment from a new Naturopath, Acupuncturist, and Osteopath. I also talked to my Doctor, who had been so amazingly supportive of me, she just didn’t have any tools in her toolbox to help me at the time.
All of our tests came back better than normal, they were perfect. My doctor did provide me with an early referral to a fertility clinic though, knowing my health history and the level of pain I was in. I was very thankful for the support from all of my practitioners, and continued to remain positive.
By the time I got in with the fertility clinic, it had been a full year of trying to get pregnant unsuccessfully. Not a single positive. I tracked my cycles every month, they were perfect, on time, and it was clear to me that I had done a great job of managing my PCOS, so it couldn’t be that. At this point, I was pretty panicked, and I was in a bad state mentally. I’m going to save what it was like to go through infertility for another time, but to sum it up, I felt totally helpless.
I met with my fertility doctor three times – once before my fertility testing, once during testing, and once after my testing was done. At each of these appointments I PLEADED and BEGGED him to look into an endometriosis diagnosis. To me, this was the only plausible explanation for our ‘unexplained infertility’. Each time he told me endometriosis was ‘unlikely and uncommon’ (spoiler alert: it isn’t), and that my pain was probably not that bad. In hindsight, it really was all just so ridiculous. I was handing all the red flag warning signs of endometriosis to him on a platter (severe pain, infertility, bowel pain, rectal bleeding, etc.), yet he dismissed me.
As a side note, I don’t want to put all of my negativity on this one doctor. I did consult with a different fertility clinic at the time to get a second opinion, and they were equally hesitant to acknowledge the possibility of endometriosis. Both fertility clinics encouraged me, even pushed me, to move forward with IVF. In my gut, I didn’t feel this was the right choice me.
At our fourth fertility appointment, my partner attended with me and vouched for me to our doctor. He explained to him that the level of pain I was in was debilitating. Only at this time, did this doctor concede that maybe there was a problem, and maybe we should consider endometriosis. I guess he had to hear it from a man, because my word (that of an educated woman in medicine) clearly wasn’t enough. He reluctantly and begrudgingly referred me to an endometriosis specialist at Mount Sinai for further assessment.
Finally Getting Treatment
I had to wait another 6 months to see the specialist. We continued to try, without success. Every month of waiting was heartbreaking for us. The time did eventually pass though, and I finally met with my specialist, who would become my surgeon, in May 2022.
It was just a phone call, to evaluate whether I’d be a good candidate for excisional laparoscopic surgery for endometriosis. In that phone call, he reviewed my symptoms, and without even needing to see me in person, he was certain I had it. The level of empathy and compassion I received in that phone call was unlike anything I had ever experienced to that point. He believed me, and I did not even have to fight for it.
I was scheduled for a pre-op appointment a couple months later, and we did some physical exams and advanced ultrasound imaging to determine where the endometriosis might be. He was even more confident it was there, and we scheduled the surgery.
My surgery date came, and on the day of my surgery, an hour past when I was supposed to go in, they told me it had to be rescheduled. My spirit was completely broken, and I couldn’t be around people for a long time after that. I continued to wait. Thankfully my surgery did finally happen at the end of November 2022.
The Surgery & Recovery
I didn’t realize how intense the surgery would be. I walked into the OR theater and was taken aback by how many people were in there. Going under not knowing what they would find was scary, but I was willing to do anything at this point. Intuitively, it felt like the right thing to do. The staff at Women’s College were so incredible from start to finish and I’m so grateful for the experience I had there.
I woke up when I was being wheeled out of the OR, I looked up at my surgeon and asked if they found endometriosis. I remember him smiling, and saying ‘we definitely found endometriosis’, so I went back to sleep. I wasn’t able to speak to him for a few days after (he immediately went into his next surgery after me), but it was validating just knowing it was there.
Recovery was very hard. It felt like someone knocked the wind out of me and I couldn’t catch my breath for days. I was for the most part immobile, and had to shuffle around my home. Eating and digestion were so extremely painful, and I lost a significant amount of weight. It still wasn’t as bad as my endometriosis pain.
I received an email from my surgeon 2 days after my surgery, saying that they had found extensive, advanced, and deep infiltrative endometriosis. For those without a medical background, this is as bad as it gets. I literally balled my eyes out when I got this email. I felt a sense of validation, but also profound loss for all the time this disease had taken from me. Time spent in bed in pain, time spent in despair wondering what was wrong with me, time pleading with doctors, time blaming myself for not getting pregnant, time in which I could have started my family.
A month after my surgery I got to review my OR report with my surgeon in person. The endometriosis was truly everywhere. It had invaded my colon and rectum – hence the severe bowel pain I was experiencing. It was on my left ovary. Some of my uterine ligaments had to be taken and could not be salvaged. Seeing the before and after pictures my surgeon took, I’m still amazed I was even somewhat functional for all those years. Once I’m done having children, I’ll have to decide if the pain is bad enough to go back in for bowel surgery.
Life After
I’m happy to report my life after surgery has been a lot better! I’ve been pain-free since December 2022, something I never even thought would be a possibility for me. The first period I had after my surgery, it really clicked for me how abnormal my periods were. The fact that I could just bleed without pain and function normally, this was a totally new experience for me. I know the endometriosis will come back – there’s a 50% post-operative recurrence rate within the first year. I’m doing everything I can though to lengthen the time to recurrence, and I’m honestly grateful to even have a shot at one year of being pain-free, and a shot at a family.
I’m not ready to talk about the fertility outcome of my surgery yet, but I’m hoping I can share this with you all once I have more closure on everything that transpired. I can say with confidence though, and my surgeon agrees, the endometriosis was 100% the cause of my ‘unexplained infertility’. Even understanding this has taken away a lot of the shame and self-blame I felt over the last two years with infertility. It’s also helped me regain a sense of trust in my body and help me start to build my confidence and life back up again.
Coming Up
In Part 3, I’ll be going through the major takeaways I learned from my experience with endometriosis, and my experience advocating for my endometriosis diagnosis. I’ll also go over steps to take if you’re concerned you might have a diagnosis yourself.
A Final Word
In the meantime, if you’re struggling with Endometriosis, please know that you are not alone, and despite my experience, there are things we can do to help!
If you want more information about how Naturopathic Medicine can help support your endometriosis, you can check that out here!
Ready to make a change?
If you want to learn more about how Naturopathic Medicine can support endometriosis, feel free to reach out to the clinic, or book a complimentary consult with me here.
With loving compassion,
Dr. Alessia Milano, ND