Join Jenny’s Journey to Heal from Endometriosis

Hello everyone, it’s taken me a long time to reach this point, but I would like to share my story and ask for your support for me and possibly other “endo-warriors” who are fighting this awful disease.

On Monday (5/20), I’ll be flying to New York to prepare to have surgery with a specialist on Friday.

Two and a half years ago, I was diagnosed with endometriosis because two endometrial cysts began to grow on my ovaries. But I have a suspicion I’ve had this condition since puberty (as many others do, undiagnosed because of lack of research & understanding of it).

Endometriosis is a progressive condition where the endometrial cells that are supposed to ONLY be inside the uterus - are also inside the pelvic cavity. These tissues grow & replicate and spread, and they attach to organs etc. inside the pelvis and abdomen.

My most recent MRI showed that along with the large cysts, it was also on my bowels and intestines. Unfortunately, scans don’t show all the endometriosis, so doctors won’t know the full extent until they perform the surgery. The other main reason for surgery is how large the left cyst has gotten (approx 18cm x 10cm), and it has a small growth inside that gave us a cancer scare for a few weeks. We’re hopeful it’s benign, but the longer the cysts remain, the risk of rare cancer increases.

Endometriosis isn’t just the spread of tissues, it also triggers an autoimmune response in the body. It creates a systemic issue that affects other body systems (digestive, endocrine, etc)

This condition has created a cascade of symptoms for me, and daily functioning has been challenging for some time now, and that is why I decided it was time to find a specialist and have surgery. It is causing a lot of cramping, pain, aching, nausea, fatigue & exhaustion, tingles from nerve involvement, more frequent migraines, and a chronic stress response in the body. It also is affecting my sleep, GI issues and nutritional deficiencies, hormonal imbalances, creates extensive inflammation and bloating that causes “endo-belly” (which basically looks like I’m pregnant 24/7), and with everything it has been challenging emotionally and mentally.

I currently have a positive autoimmune marker and my body is fatigued from fighting it. I spent the last two years trying to fix other areas of my physical health (gut health & digestive, detoxing, and more) thinking the endometriosis was just a separate, isolated issue….only to finally understand that this condition affects the entire body and needs to be handled first, because it is causing so many of the other issues. Once I remove this, I should be able to be successful with healing the rest of my body.

Last year I spent a lot of time managing the symptoms and looking for ways to heal. As some of you know, I’ve done training in energy healing, and in using that I was able to fully heal some of the more severe symptoms I was experiencing! Which has been amazing. But while some areas improved, others continued to progress, and I decided I need both a holistic and traditional medical approach at this time.

I started having cramping/pain requiring pain meds almost daily about 8 months ago, and that’s when I first began to really research and learn more about this condition, and search for a specialist for surgery.

I learned a LOT, so there are significant reasons why I’ll be seeing a specialist for surgery, and not just seeing a regular OBGYN.

At this time, excision surgery is the top treatment to excise all the implants/lesions/adhesions they can find. There are currently no other treatments for this disease besides surgery. Other options only suppress symptoms.

In my search about endometriosis, I found out endometriosis is highly undiagnosed due to lack of doctor education and lack of research. Doctors routinely spread misinformation or false information because they don’t know any better, and women are often not listened to, not given adequate care or even adequate choices for care to manage symptoms and the progression.

I learned that many regular OBGYNs will perform this surgery, but their inexperience and lack of expertise means they miss seeing tissues/adhesions, and, they often prematurely remove organs before it’s necessary.

Because of this, women often have to have repeat surgeries (it’s not uncommon for women to have multiple surgeries) and yet they’re still having issues.

I do not want these outcomes.

I have been determined to find the best outcome I can so I can get my life back, my energy back, heal on all levels, and be the mom, wife, and friend I so want to be.

So I searched for expert endometriosis surgeons across the country and I found a doctor based in New York who performs hundreds of surgeries each year as the director of his practice. He holds annual endometriosis summits to help educate more doctors, he plans to create a training facility, he travels and performs surgeries in other countries, and people travel to him from other countries also. He speaks out on the lack of education that OBGYNs need, and the premature/unnecessary taking of organs, and he advocates for better diagnosis and treatment….Basically, everything I could want in a doctor to take care of me and help me heal with the best chances.

He has a solid team of other specialist surgeons should the need arise to call them in during surgery.

I’m here asking for help, if you’re able, for two reasons~ First, unfortunately most specialists aren’t covered under insurance as “in-network.” Which means in order for me to receive his services & give myself the best chances of healing, I have to travel across the country to him and pay out-of-network costs. After talking with our insurance and his clinic, we’re anticipating around $25,000 out of pocket and hoping insurance covers the rest. After surgery, there will then be costs related to rehabilitation with different specialty physicians & practitioners (ie pelvic physiotherapy, physical therapy, etc)

Second, I’ve been absolutely mind blown on this journey to learn of how much other people are suffering and receiving either ZERO or poor help from their doctors. And so, after I am able to pay for my treatment, I would like to also donate as much as possible to endometriosis research.

I listened to a podcast with another endo specialist who talked about how UCLA is currently doing research to understand endometriosis and he is looking forward to seeing the findings that come from it. So if possible, I would like to send the extra money raised here to support this research, because this is a brutal disease and so many women are suffering in a lot of ways because it’s not well researched and understood.

I understand that not everyone can donate, and there is no pressure. But if you feel called to help support me through this time, and possibly others, I would truly be so humbled and grateful for it.

Any amount would be appreciated with love, and Sharing this with others would mean more to me than I could say.

If all you’d like to share is your love, prayers, and healing energy~ I would Love that too.

Thank you so much for reading my story, witnessing, and supporting me on my healing journey.

I’m determine to come out the other side of this as the best version of me - healthier than I’ve been my whole life.

~Jenny

Here is the podcast about endometriosis in case you’re interested, or if you know someone who also has endo and would find it helpful:

https://podcasts.apple.com/us/podcast/just-ingredients/id1557557205?i=1000652486854