I Had Surgery!

I have been on a long road to repair my health, often complicated with missed diagnoses and incorrect management. After 13 years of seeking help, and 20+ years of worsening symptoms, I finally got my diagnosis of endometriosis had the life-changing surgery I so desperately needed: a full hysterectomy.

My story applies to everyone. Yes, everyone. Because whether or not you are struggling with women’s health, surgery, or a frustrating condition that seems to go nowhere, this applies to you. You very likely know someone who is too. This blog post is about facing challenges in healthcare.

Here is some background to provide context for my message. I have struggled with endometriosis for many, many years. At first I didn’t know it was endo because I didn’t really understand what it was. My symptoms were mild, but definitely present. I was struggling with pain, heavy bleeding, and an irregular cycle. Instead, I was told it was “hormonal imbalances” and put on oral birth control. 

This helped some, but not enough. I spent the next 10 years switching the dosage and makeup of the medication, finding some short-lived relief before needing to change it up again. When the side effects of the medication became too much, I decided to stop taking it. By this point I was suspicious of having endo, but I couldn’t get a firm diagnosis due to it being “not bad enough” and there being “not enough symptoms” to convince numerous doctors of what was happening.

For the next 11 years I had continuing worsening symptoms and tried other ways of managing my health, including changing my diet, adding more exercise, avoiding triggering foods/environmental irritants, trying various supplements, trying other kinds of medications for conditions triggered by the endo, psychotherapy, acupuncture, massage, fascial work, qigong, changing careers, changing my career setting, reducing the number of hours I was working, and even going on a brief sabbatical. From all of this, I saw some improvements in my health, but nothing gave me complete or lasting relief. It always worsened, and it always was worse than before.

Finally, in October of 2024 I woke up in the middle of the night to an ovarian cyst rupturing. I knew what it was immediately, and by this point I was convinced I had endo based on my symptoms and family history. The blood from the ruptured cyst inflamed my pelvic floor muscles, causing excruciating pain which lasted for months. I also knew that rupturing cysts could cause an ovarian torsion, an emergency-surgery situation. It was time to seek more aggressive intervention. 

It took a few months, but I finally saw a gyno again about the endo. The doctor agreed there was a good chance I had it, but that there was no way to confirm this without exploratory surgery. It was also impressed upon me that the main focus of the surgery would be to preserve my organs and to minimize tissue removal. At first this made sense, but then I heard the doctor say they were uncomfortable looking for other endo spots and removing them. I had also expressed that I did not plan to have children and that I was ok with a hysterectomy. I expressed that I couldn’t tolerate the birth control meds either that are often used to suppress endo. The response to this was that I should go back on birth control and that they preferred to not do a hysterectomy. Reading between the lines: my health and choices did not matter, I was not being heard. 

But I needed someone to hear me.

I had two ultrasounds a few months apart as was recommended while I started my search for a doctor who could help me. During that time it was found that I had multiple cysts and fibroids on my ovaries and uterus. The imaging though could not define what kind of cysts they were. I started to wonder why we weren’t doing an MRI since that imaging gives a much more detailed picture and can help distinguish between tissue densities (and therefore types of masses).

In July of 2025, I found my surgeon. I decided to find an out-of-network surgeon because they are not constrained by insurance. This allows them to practice in ways that meet the needs of the patient first rather than meeting arbitrary objectives determined by profit. We only talked during the first appointment, and I was heard. She read my intake paperwork prior to my arrival and was familiar with my health history. She took me seriously when I told her I did not plan to have children and didn’t try to convince me otherwise. She didn’t try to put me on “one more med” before deciding to do surgery. She told me that I would need to have an MRI prior to any surgery plans being made so that she had a complete, detailed picture of what she would be finding. This also was to allow for arranging to have other surgeons ready in the OR in case other organ systems were involved. 

She listened. 

After so many years of asking for help, I was heard and taken seriously. No more pushing of personal agendas or insurance agendas. Just “Yes, this is serious, and you deserve to not suffer”.

My surgery went beautifully and I have my life back.

I am sharing all of this to highlight the systemic barriers to good healthcare, and to also give you hope. It can be done, you can find the right practitioner and you can heal.

Throughout this process many people have asked me questions like “How did you figure this out?” and “What did it take for you to get the answers?”. The answer to that is time, money, and tenacity. Having someone to support me emotionally through this definitely helped. Also keeping an open mind to other options I had not considered. At times I had to get angry. Angry enough to decide that I wasn’t going to keep accepting others’ opinions of my body and health. Angry enough to realize how much ego was involved from so many of my doctors. And finally, compassion. I had to have compassion for myself and how much I could do. I had to have compassion for all the healthcare providers I saw over the years because many had their hands tied behind their backs. Once I understood how to see what the system was truly doing, I could let go of assuming that anyone else was going to fight for me. I had to ask for help, and keep asking until someone listened. 

I realize this healthcare system wears people down. It keeps them sick, tired, and confused while extracting as much money as possible from the patient. Not everyone has the resources needed to overcome this. I won’t deny that. But, someone is out there who can help, and I hope you find them soon.