What was the beginning of your endometriosis journey like before you knew what was happening?

I was at college. It was my freshman year. I was experiencing overwhelming exhaustion. I could not stay awake through an entire day despite sleeping 8-10 hours per night. I had spotting for 56 out of 63 days straight. I had abdominal, back and leg pain. I had weakness in my right leg and would suddenly become unable to walk while I was doing so. I was experiencing migraines.

When were you diagnosed, and what was your journey to getting diagnosed like?

I ended up at the hospital emergency room. They did a bunch of tests, but i ended up with no diagnosis. I had to leave college early to go home and see a gynecologist. Because this doctor was my moms doctor and knew her history, he indicated that I could benefit from a diagnostic laparascopy and D&C procedure. So in May 2006, I went through that surgery and was diagnosed. A couple months later I endured an excision surgery.

What did it feel like to finally have a name for what you were experiencing?

It was validating. And frustrating to find out there is no cure.

How does endometriosis show up in your body and daily life?

I experience ongoing fatigue, migraines, back and abdominal pain, lightening bolt zaps in my rectum and vagina, painful bowel movements, leg/sciatic pain, and IBS symptoms. I experience “endo belly” (significant bloating and pain) every single day. Prior to a full hysterectomy, i would have long, heavy periods and pass golf ball sized clots regularly and experience breakthrough bleeding/spotting throughout the month. I would also get a sinus infection with every menstrual cycle.

How would you describe the pain or physical challenges of endometriosis?

The pain can be truly debilitating. It is sharp and stabbing, and sometimes feels like pressure or pulling. The pain is usually there at some level all the time. Sonetimes it is so sudden and sharp it literally takes my breath away. It can cause me to under-perform at work because I am unable to fully function as I wish I could. It causes me to cancel plans which makes me feel flakey.

Do you have “good days,” and if so, what do they look like?

I have days where I have very little pain and can function normally- I enjoy heavy lifting contruction projects, sewing, walking, swimming, cooking. On a good day, i can get into just about anything!

How has endometriosis affected your education, work, routines, or ability to make plans?

Because the pain is unpredictable, I am not always able to know how I will feel and how much I will be able to do day to day. Often times I just push through it and pretend everything is OK. But it isnt easy. And sometimes the pain is too bad to hide. I hate letting other people down by canceling plans or calling off. It makes me feel flakey. I feel like my body is betraying me over and over.

Has endometriosis had an impact on your finances or access to care?

The cost for medical care, blood tests, imaging, doctor appointments and surgeries really adds up. I have had to go into debt to pay for my medical care.

What has your experience been like with doctors, specialists, and navigating the healthcare system?

When I was first diagnosed, the doctor i saw was very kind, but was not trained to handle excision. He performed an ablation surgery and put me on birth control pills. I saw another gynecologist after him and he was absolutely cruel to me. I was in so much pain during the exam that I cried and he said to me “everyone goes through the exam. It’s not that bad.” I couldn’t walk for 2 days after seeing him because the pain WAS that bad. I found another doctor after him, an endo specialist. His recommendation was to try Lupron and Depo-Provera injections. I gave both a try, and wasnt pleased with the results. He prescribed pain pills and told me i should try to get pregnant- that pregnancy would help with the endometriosis. I shopped around for a new doctor. I found a specialist who listened and took me seriously. He did another surgery and discovered the endo had come back, stage 4 again. After this surgery i had relief for a while. However, while working, i lifted a child and felt something pop. A cyst had ruptured and i was soaking through incontinence undies lined with overnight pads and passing blood clots the size of softballs. I went to the ER. The doctor at the ER yelled at me for getting blood on the floor, threatened to put a catheter in, and ultimately told me that because I was not anemic, there was nothing they could do for me. They sent me home. I believed I was going to bleed to death alone at home. I vowed i would never go back to the ER with an endo-related issue again. And i havent. I had a second surgery with the specialist following the cyst rupture. He excised endo and removed my left ovary. Several years later, I returned to him. He had the audacity to tell me that he didn’t believe I had endo anymore because he cured me, but if I wanted him to cut me open again, he would. I went ahead with surgery and he found 4 news spots and excised them. I had a hysterectomy at this time. This doctor left the practice between this surgery and my next visit. I saw a colleague who again stated that he didn’t think surgery was necessary. But when he did surgery for me, I had stage 4, extensive endometriosis on every organ and required an appendectomy and bowel resection. He also removed my remaining ovary. Its been 2 1/2 years since that surgery and the symptoms returned again. Because my insurance changed, I had to see a new doctor. She was skeptical and reluctant, but agreed to surgery. Prior to surgery I tried orlissa and pelvic floor physical therapy. It helped. I am currently 3 weeks out from robotic laprascopic excision. She found only 2 new endo lesions this time.

What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?

I have tried literally everything: birth control pills, hormone suppressants, injections, exercise, pelvic floor physical therapy, diet changes (low FODMAP, anti-inflammatory), surgery (i have had 1 D&C, 1 ablation, and 6 excisions). I have visited chiropractors. It effects every part of my life.

What has it been like to live with a condition that often isn’t visible to others?

It is hard to describe the pain and fatigue. You feel like people do not believe you, even doctors. You end up doubting yourself. You feel like you need to hide the symptoms and try to function normally.

Have there been times when you felt dismissed or not believed about what you were going through?

Undoubtedly. I feel like I have had to fight to be believed and understood every step of the way. My pain and symptoms have been dismissed and downplayed by medical professionals.

What has the emotional or mental side of living with endometriosis been like for you?

It is very isolating and lonely. People do not understand how much pain you are in. And there is a stigma that you don’t talk about “period pain”. So i internalized everything for years and years. I believed i am just not able to tolerate pain and need to toughen up.

How has endometriosis affected your relationship with your body, identity, or sense of self over time?

I feel like my body betrays me over and over. I never know when I will feel awful again, when I will have to cancel plans. It makes me appear unreliable and flakey. I doubt my own ability to believe what my body is communicating because doctors don’t take me seriously. I don’t trust my body. I get angry and depressed.

How has endometriosis affected your family relationships, friendships, or dating life?

I feel isolated. I don’t make plans because I am afraid I will need to cancel or fake being okay to get through my activities.

Has endometriosis had an impact on intimacy or your sexual life?

Without a doubt. It always hurts when we make love. It is not something I enjoy. My husband feels bad when I hurt, so we end up not being intimate for months and months at a time.

If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?

I decided to have a hysterectomy before I got married. I never had the chance to have my own babies. I feel grief over what could have been.

Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?

I have faith in God. I have a loving, supportive family and church community. The pelvic floor physical therapy helped. I listen to music and enjoy taking walks.

Do you feel supported in your journey? Who or what has helped you most?

My mom was my biggest support person. Because she also had endo, she understood the pain and struggle. She was always there for me. She passed away in 2021 and I feel very alone now. My husband does support me, but he does not understand what I am going through.

Have you connected with others who have endometriosis, either online or in person? What has that experience been like?

Yes. Mostly I act in a supportive role to encourage them and let them know what to expect after surgeries, how and what to prepare.

How has your relationship with endometriosis changed over time?

I used to believe that it would stop recurring. I have lost all hope of that ever being the case.

More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?

I feel that endometriosis is gaining more spotlight and support. But I still feel that the medical community dismisses and minimizes their patients experiences and does not take them seriously.

How do you feel endometriosis is represented in society or the media? What would you like to see change?

I think there is a stigma surrounding endo, that it is taboo to talk about “a menstrual disorder”. However, I also believe that is beginning to change with more information and greater understanding of the condition.

What would you like more people to understand about endometriosis?

It affects everything. It causes pain physically, but also emotionally and socially. The condition is very real. The pain is very real. Endo sufferers need support. It is costly to undergo treatments and tests.

When you think about the future, what fears, concerns, or hopes do you have?

I fear it will always come back and I always fear that I will not be taken seriously. I would love to see new, non-invasive treatments and advancements made. I also wish there was funding to help with medical bills related to endo management.

Is there anything else you’d like to share?

No.