“I’ve struggled with my health since my menstrual cycle first started twelve years ago when I was fourteen years old. As soon as my period started everything changed. I was bleeding for ten to fifteen days a month, I was exhausted, and I always had horrible cramps. My mom knew something wasn’t quite right but we weren’t seriously alarmed until my period vanished about 6 months after it’s initial arrival. After five or six weeks with no cycle my mom took me to her internist. I was stressed out, confused, and felt out of control of what was happening with my body.
I don’t know why I didn’t go to a gynecologist instead of a general internist, I truly wish I had. The experience with the internist was horrific. After a long guilt-trip session from the doctor, who told me ‘I would be such an inconvenience to my mom if I made her take me to the ER instead of letting him examine me’ and ‘I will be able to tell more by doing a pelvic exam than can be seen on any other scan’ (not true), I caved and let him examine me. After several incredibly painful pelvic exams he concluded I likely had ovarian cysts but he couldn’t do anything about it. I was fourteen. I do not like talking about this incident but this is part of having gynecological problems. People don’t believe you, doctors don’t believe you, you’re manipulated, poked, and prodded until you can’t take it anymore.
After this incident I did see a gynecologist. I was told I have cysts and it’s not a big deal. They briefly mentioned at that time I might have something called endometriosis, but I was traumatized and fourteen, so I didn’t pay any attention.
Fast forward nine years. I am about to graduate from college. I have a great job lined up and I am working on two business funding competitions for my own company. I was a force to be reckoned with. I’d always had bad periods but being on birth control did give me some relief for several years. I always had more period pain than most of my friends but I didn’t think too much of it. I’d just take handfuls of Advil around the clock and power through.
A week before my second funding competition something happened. I was in my kitchen cutting vegetables for dinner and I felt weird. I had a sharp, blinding pain go through my whole abdomen, and then darkness. I passed out. I woke up to carrots and onions scattered all over my kitchen floor. I went to my gyno right after this happened and she ‘wanted to keep an eye on this situation and she suspected endometriosis’. Again, I didn’t really pay attention. I just wanted to feel better so I could move on with the life I’d been building for myself. I passed out 4 more times within the span of a week and every time there was a direct correlation to this lower abdominal pain. My gyno was worried by this so we scheduled an exploratory laparoscopic surgery for a few days later. Luckily my family was supportive but not incredibly informed about what was really going on. They knew I was desperate for answers and just tried to support my decisions. I had other family friends who did not understand what I was going through. They downplayed my surgery and made me out to be a drama queen for needing time to recover. Essentially, some people did not consider any surgery that involved endometriosis as anything serious.
I wasn’t that nervous for the surgery. I’d had several surgeries before (one laparoscopic one in 2009 to remove a failed gallbladder) so I thought I had a good idea of what to expect. I couldn’t have been more wrong. On April 16, 2016 I had an exploratory laparoscopy. They found endometriosis on my bladder, ovaries, uterus, abdominal wall, and several other places. Endometriosis is an inflammatory disease where tissue similar to the uterine lining grows outside of the uterus, usually on reproductive organs, abdominal walls, bowel, etc. Endometriosis tissue bleeds and contracts every time you menstruate. So when you have endometriosis adhesions on your bladder, ovaries, uterus, abdominal wall, intestines, etc, your period is a nightmare. It feels like someone is squeezing all of your organs at once. Endometriosis tissue is fueled by hormones and very hard to control. There are various conflicting opinions about how to treat it. It is fueled by estrogen yet the most common ‘treatment’ offered for it is hormonal birth control, and oftentimes pills with estrogen are offered. Basically it’s really difficult to be an endometriosis patient because there doesn’t really seem to be a solid treatment. The only relief I have received was from having a specialist operate on me last month to remove my adhesions from the root.
They used the ablation removal method which utilizes lasers to burn or vaporize endometriosis tissue. The ablation method is the least effective surgical treatment of endometriosis but I had no idea that was the case when I went in for surgery. To anyone endo patients out there reading this, excision surgery, which requires surgeons to cut deeply into organs to remove endometriosis adhesions from the root, it the golden standard in endometriosis care.
I woke up from the surgery and felt significantly worse than before my operation which didn’t seem abnormal to me at the time. My ex-boyfriend was the only one with me at the hospital. My surgeon told him ‘there were complications but they fixed everything’. The doctor didn’t even remember what had gone wrong. THE DOCTOR DIDN’T REMEMBER? My boyfriend also didn’t remember what the doctor told him about what went wrong. He drove me home and that twenty minute drive was absolute agony even with all of the anesthesia and pain meds I was on. Once the anesthesia wore off I could not handle it. I had never been in such excruciating pain. The meds wore off in the evening, so I had to wait until the next morning to call my doctor. I was up screaming and crying all night, something was clearly wrong. My parents were upset but I handled everything. I got myself new meds. I took care of it. They didn’t step in it do anything really. They were upset I wasn’t feeling better.
I finally got ahold of my doctor the next morning and she told me they made a mistake when they were trying to prep me for surgery. With laparoscopic surgeries they inflate your abdominal cavity with gas to allow them to more clearly see while operating. In order to do this, they have to insert a needle into your stomach through your belly button. It is the first thing they do. My gynecologist had trouble inserting the needle, she blamed it on old scar tissue from my surgery in 2009, and she nicked my stomach lining or something. I still don’t 100% know what exactly she did, but it took her 2 hours to fix her mistake and then 45 minutes to remove the endometriosis adhesions she found. I was told my recovery would be 3 days and I’d be back at work and school in no time. What a load of crap! I also had to deal with friends and family not understanding what I was going through. I remember my ex’s family was so annoyed I had surgery as it prevented me from being able to watch my ex’s sister for the weekend. I will never forget his parents saying ‘she just had a D&C, they just scraped out her uterus, why is she complaining? Just to clarify, a D&C is NOT the same as a laparoscopic surgery, not even close.
I was bedridden for 3 weeks after my surgery in 2016 and it took me two whole years to feel somewhat normal again. I had some pain relief for about a month after I was healed and then my pain came back worse than ever. I have never felt the same since surgery. It robbed me of so much. Due to the complications I faced I was terrified to ever have another surgery even though I was told most endo patients have to have these laps every 1-5 years to manage their pain. The only way I found relief during that time was through lifestyle changes like quitting drinking, drastically changing my diet, making sure I got enough sleep, etc. My gyno also kept me on high doses of hydrocodone after my 2016 lap because she ‘didn’t have any other treatment options’ for me since I refused to take the dangerous and aggressive drugs that put you into early menopause. I lost forty pounds without trying during the 6 months after my surgery. I was so sick and withering away, but people didn’t know. I just got compliments on ‘how amazing and thin I looked’. People had no idea.
Fast forward to December 28, 2018. I moved to a new city, I had a new life, and I had been feeling okay, but not great. I’d lived with daily debilitating pain for almost 3 years so I had figured out how to survive. I was able to grin and bear it for the most part. I started having horrible pain on the 28th, like really unbearable pain in my legs, hips, abdomen, back, etc. I knew something was wrong. After a week I decided to call an endometriosis specialist in Portland that I had a consultation with a few months earlier. They had a cancellation for the end of January so I was able to get in. I had to remain in pain for a few weeks before my surgery but since I’d lived in pain for years, I knew I could do it.
I was so terrified about this surgery. I was so afraid I was making the wrong decision again. I had to remind myself ‘I am not the same person I was three years ago’. I am incredibly informed about endometriosis and it’s treatment. I knew I was going to one of the best clinics and doctors in the country so I just tried to keep that in the front of my mind. On January 23rd, 2019 I had laparoscopic excision surgery for endometriosis performed by Dr. Richard Rosenfield at the Pearl Women’s Center in Portland, OR. He told me before my procedure I would feel better as soon as I woke up. I didn’t believe him.
They made 8 incisions total. They were extra cautious about operating on me due to the complications from scar tissue last time. They made an extra incision under my ribs so they could look down, assess the scarring, and make their surgical plan from there. Once they looked in my abdomen they realized there was no scarring. There was no evidence of scar tissue being previously removed three years ago. This proves my previous doctor made a mistake, and lied to me about what happened. She blamed her ineptitude on my body.
Dr. Rosenfield found endometriosis adhesions and endometriomas all over my bladder, uterus, ovaries, abdominal wall, and the largest mass in my cul de sac or pouch of douglas. Even though this surgery was much more extensive I did feel better when I woke up, I couldn’t believe it! There was no longer a deep, pulling pain going through my whole abdomen. The dozens of fish hooks pulling at my organs in every direction were gone. I was speechless.
Day 8 Post-Op I had my first big win. I was in the shower, a place where I usually go for pain relief. My normal routine the last 3 years has consisted of turning the water up as hot as I could bare (sometimes burning myself) to drown out my endo pain. I have done this daily for years. But this was different. I was standing there doing my normal routine of ‘how should I stand to best relieve my pain’, and I realized something. I had no pain. The incessant, pulsating pain of the last three years was gone. I was in shock. I am already off of the pain meds and just on Advil so I couldn’t believe I was pain free so quickly after surgery! I cried because I can’t remember the last time I took a shower, just to take a shower.
I am now on day 15 post-op and have hit a bit of a healing plateau but I am still making a little progress every day. I am trying to remind myself that healing is not linear and to be thankful I am finally finding relief and on the right path.
The best advice I can give anyone dealing with endometriosis or any other chronic illness is to not be afraid to be your own advocate. Listen to your instincts, listen to your body. If you don’t feel comfortable with a specific treatment plan or doctor, you are not trapped. You ultimately have the power over your own health and treatment, so don’t be afraid to take the reins and direct your life the way you know you need to go.”
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