I realized that I’ve asked you to share your story, but haven’t actually put mine out there in one place (maybe a snippet here or there)….time to get everything out on paper so it leaves my head and heart (sorry it’s so loooooong…I couldn’t stop!). I was diagnosed when I was 35 years old. Eight months later, here I am trying to make a difference anywhere and any way that I can.
My Journey: I started my period when I was 12 or 13 years old. I remember them hurting (but not as devastating as they have in my adult years), but figured it was normal. I grew up hearing we were cursed because of Eve’s decision to sin, punished into pain and childbirth. I also heard that some of my family members had really painful periods. So again, it was normal. Classmates said they had cramps, too…so I figured mine were just normal. I became that girl in Junior High and High School that would walk around with a hoodie tied around her waist every month because I’d almost always overflow. I had classmates come up to me during the really hard cramps, ask if I was okay, that I was white as a ghost and sweating…and I’d spend time curled up in the Nurse’s office after taking an Ibuprofen. But it was normal. Every girl went through this. Right? My family physician had wanted me to go on birth control, but just to prevent “baby accidents” from happening, which I quickly dismissed since I had no intention of having sex. Little did I know BCP may have helped with the pain…
I became sexually active when I got married at 21 years old. Now that I’d “done the deed,” I decided it was time I saw a gynecologist. My very first one. Man, was I excited. I’d discussed my painful periods and lengthy cycles, but was told nothing was abnormal. She put me on Ortho Tri Cyclen since my husband and I didn’t want children yet, in the hopes that it would regulate my cycles and pain. It did regulate the length of my cycles, but didn’t help with the pain much. However, it turned me into a weight-gaining, moody, grumpy-guss. And I hated the pill. Two years later, we decided we’d like to start our own little family, so I gladly got off the pill.
The cramps were worse than before. Days of laying curled up in a ball on the bed, squeezing the hell out of my heating pad, no over-the-counter pain medications or “specialty pills” like Midol helped. At all. I wasn’t about to exercise (“but it’s so good for your period cramps,” they say…you cannot get out of bed to exercise). Didn’t want sex (even though everyone says it helps with your cramps…). My bloating was so severe I’d be asked on several occasions when my baby was due. I had monthly diarrhea along with my period. It was horrible.
Our medical insurance had changed, so I found a new gynecologist. Same story: nothing abnormal about my periods. Fast forward five years. Still not pregnant. Have done all of the homeopathic tricks in the book to conceive (including standing on my head after sex…ha!), test my fertility, monitor ovulation, etc. Neither one of us wanted IVF, so we never considered going in for any fertility tests or treatments. Every month I would start my period, every month I would be depressed at our failure. We had friends and family who were having families of their own, I attended countless baby showers, offered way too many “congratulations.” Each time, I wanted to wallow in my own sadness over the fact that we have been unable to conceive. I had begun to resent those new mothers around me. At no fault of their own. I was still very happy for them…but still incredibly jealous, sad, and even angry. It was a dark and horrible downward spiral. We eventually stopped trying and hoped it would just happen on its own.
My gynecologist had retired, so I was assigned a new one at Kaiser. At my next annual pap appointment, the new doctor agreed: nothing abnormal about my period pain or cycles. She did discover however, that I had a septated vaginal canal. A split down the center of my vagina, so that I have a right side and a left side. My right side was normal leading straight to my cervix, but the left side just dead-ended at the back of my vaginal canal. She surmised that if we had been having sex on the left side and his semen was just hitting a blocked wall, making it impossible to conceive. So we tried making sure he was on the right side during intercourse: still no pregnancy. Which ended up beinga good thing; in 2009, we separated. My marriage had ended. Add that to my growing emotional spiral.
Since I had left my husband, I had to get my own health insurance which mean, you guessed it: a new gynecologist. My first visit to this doctor was hilarious. Within seconds of descending between the cleft of my thighs, he popped his head up in excitement, “You have two!!!!!” I told him I knew I had two sides. “No,” he said, “you have two cervix!” WHAT? How in the world did my three…THREE…prior gynecologists miss the fact that I have two fully-functioning cervix? This doctor was so excited he had to invite a few staff members and specialists in to look for themselves. So after the excitement died down, he told me that my right side was wider, but my cervical opening was tiny. And my left side was much narrower, but my cervical opening was normal. He figured we hadn’t been getting pregnant because of the tiny opening on the right. He also said women with “this condition” have a very hard time naturally conceiving. “Nearly impossible,” he said. So I resigned myself to not having children. He also agreed with the others that my period pain and cycles were “normal.”
BUT he was the first gynecologist to prescribe me pain medication for my horrendous cramps. Naproxen Sodium, and it was the only thing that helped. I took those pills every month until my excision surgery in 2014. Five years of having to depend on pharmaceuticals to help alleviate my pain. Sometimes they didn’t work at all. Most times I had nausea, exhaustion, and dizziness from those pills. Sometimes I was afraid to drive. And nearly fell down the stairs on more than one occasion. Not an easy pill to stomach for me.
I had been routinely reprimanded at work for all of the time I had missed each month. I called in sick for one or two days every month. Sometimes three. I had depleted my sick time and had to start using vacation time. I was told if I missed another day, “disciplinary action” would be taken. So I would go to work in pure agony. I had cancelled dates and appointments because of my pain. But again…“it was normal.”
Fast forward to 2012 and I moved to San Diego. New job, clean slate (new vacation and sick time), new insurance, and yep: a new gynecologist. I told him about my septated canal, my double cervix, but I had been told for so long that my periods were normal that I didn’t bring it up. He asked if I experienced any cramps and what the length of my cycles were, which I answered. No surprise. He advised me to continue to take my Naproxen Sodium as needed, but a hysterectomy may one day cure those cramps.
In 2013, he wanted an ultrasound because I had expressed some tenderness during my pap. He discovered I had a small cyst on my right ovary. When I went in for a follow-up ultrasound, I now had a cyst on my left ovary. Every few months, we continued this little dance and watched the cysts grow, disappear, and reappear. During all of this, my periods continued their harsh game, I continued to miss work at the new job (1-3 days a month), and it was mentioned in my review that I had been missing an awful lot of work once a month…Fuck.
Finally in 2014, an ultrasound showed a larger cyst on my left ovary. So my doctor ordered an MRI to get a better look at it. MRI results showed what they believed to be a dermoid cyst on my left ovary, which could potentially become cancerous. It looked like I also had abnormally thick uterine lining, which may have explained the cramping and lengthy periods. Due to the scary cancer possibility, we decided to do a routine robotic laparoscopy and remove the cyst. While I was under, he was going to perform a D&C procedure, where they scoop out that excess lining in my uterus (gross!).
Surgery: the last thing I remember was the anesthesiologist talking to me about my favorite hiking spots in San Diego (may I just say that’s the BEST way to fall asleep?). My supposed-to-be 1.5-hour surgery ended up being 4 hours. Once he was inside, my gynecologist (he was also my surgeon! LOVE HIM!) was surprised to immediately notice the unmistakable signs of Endometriosis: implants and adhesions. What was thought to be a dermoid cyst was an endometrioma, also known as a chocolate cyst. My abdominal cavity was invaded by Endometriosis implants. My bladder was glued to my uterus by adhesions. My bowel was also stuck to my uterus. I had adhesions and implants on my liver and diaphragm, too. It is my understanding that he couldn’t remove it from my liver and risk puncturing or damaging that organ, but he smeared some type of barrier medication to hopefully stop it from growing. And he managed to save my ovaries.
I changed my diet to a more Endo-friendly, anti-inflammatory diet. I underwent six grueling months of Lupron Depot injections, and suffered many side effects from it. Including spontaneous growth of bilateral cataracts which required surgery in my late 30s. I was on a continuous birth control pill for 18 months. I remained mostly pain-free for that time. Until it all came flooding back.
On September 12, 2016, I went in for my second excision surgery. In a nutshell: my Endometriosis had returned, bringing with it a leaking cyst and a bunch of adhesions. Endo had also decided to now grow on my bowel (the outer layer of my sigmoid colon) and my ureter (the tube that carries stuff from kidneys to bladder – he had to detach my ureter, clean it up, and reattach it). AND it disappeared from my liver (my doctor couldn’t find any there this time). He was able to cut out all of my Endometriosis, except for a lesion that was still on my diaphragm. He cut away all of my adhesions and put my organs back where they belonged. My uterus was stuck to my bowel, my ovaries and fallopian tubes were a rat’s nest, and my uterus was also stuck to the right side of my pelvic wall. It just sounded like such a mess…
I had decided to never do any medication like Lupron Depot (or the new Orlissa) ever again. The side effects were too much and it didn’t help in the long run. And birth control pills drastically changed who I was, and didn’t prevent my Endometriosis from returning – so I’ve sworn that off as well.
In early 2018, my pain once more was becoming unbearable; even prescription narcotics weren’t helping. Ultrasounds had shown the presence of cysts on my right and left ovaries once more. And a few speculative spots on the imaging may have been Endometriosis lesions. Surgery was scheduled for July and it once again took about four hours. My ovaries were spared and freed of their cysts, but my fallopian tubes were so inflamed and “angry” that they were both removed. Endometriosis lesions were found throughout my pelvic area, including near my sigmoid colon (which was stuck to the left side of my pelvic wall). My bladder was pinned tightly to my uterus due to adhesions, and my left ureter had to be detached to be cleared of Endometriosis (then reattached). Scar tissue was rampant. But the interesting part? No Endometriosis was found on my liver OR my diaphragm – it had disappeared! Yay! Unfortunately, though, Endometriosis was found too deeply embedded on my small intestine to remove and a colo-rectal surgeon came in to analyze – it would require a future surgery to remove that portion of the intestines.
In November of 2018, my bowel resection took place. Dr. Mel Kurtulus, my gyno and Endo surgeon, was also present to make sure I didn’t have any fresh Endometriosis or adhesions since my July surgery. Good thing he was there. The Endo on my small intestine had turned from pink to black in the four-month period. My large intestine also had begun to twist due to lesions and scar tissue. So, Dr. Matthew Schultzel removed about seven inches of my guts: a portion of my small intestine, my terminal ileum, a portion of my right colon, the cecum, and my appendix. Dr. Kurtulus also found new Endometriosis growths throughout my pelvis, an Endometrioma on my left ovary, and adhesions throughout. He excised the lesions, removed the scar tissue, and restored everything to its rightful place. The pathology report even came back showing microscopic Endo along my colon and appendix – I am so grateful we didn’t wait to have the resection surgery!
Since my 2018 surgeries, my quality of life has improved dramatically. My Endo pain symptoms are 99% gone. My bowel movements are insanely regular, frequent, and (best of all) pain-free. Sex doesn’t hurt anymore. And my lower back pain is completely gone. How long will it last? I have a two-year track record…but here’s to hoping for longer relief!
I’m horrified and saddened that none of my prior gynecologists ever suggested or hinted that I may have this very common disease. Let alone noticed I had two sides…and two cervix! Only since 2012 have I started receiving pap smears on each cervix, which should have been done since my first pap. I lost a little bit of faith in the medical community on that one.
Endometriosis is one of the leading causes of infertility. All of that time trying, crying, and fretting while we tried to make a baby…wasted. But at least now I know why I couldn’t conceive. And now I know I will never: my fallopian tubes are gone. During my grieving process, a friend of mine cheered me up. “Lisa,” she said, “you may no longer have fallopian tubes, but you got one of the biggest pairs of brass balls I’ve ever seen.”
But the BEST part about being diagnosed? I have embraced this horrible disease and diagnosis, I’ve met beautiful and wonderfully passionate women who have the same disease, and we have come together for support and advocacy. I have learned that my pain was never normal. That I am not alone. And I have found a way to overcome the emotional shit-storm that came with the diagnosis.
In 2014, I started writing to deal with my diagnosis. Then I started a support group in San Diego, California. It’s spread throughout Southern California and we are several hundred women strong. We have monthly face-to-face meetings, as well as an annual Endo awareness & support walk. There are also community workshops by physicians and healthcare providers, and fundraisers for the Endometriosis Foundation of America. We’re more than a community; we’re a family.
My mom always says this disease gave me lemons and I’ve made lemonade. I wouldn’t have been able to do it without the love and support of my husband, my family, my friends, and my EndoSisters.
I am grateful for it. I am stronger because of it. And I love my Warriors! Together, we can do great things!! Remember to always advocate for yourself and the care that you deserve.
Words of Advice for Us: Having the love and support of your spouse, family, and friends is wonderful…but, I encourage you to find EndoSisters in your area, your community, your neck of the woods. Few things compare to being able relate with someone face-to-face, to hug, laugh out loud, see the pain in their eyes, be held as you try not to cry, share what has helped with your pain, relate to their pain, and have those “You, too???” moments. It is far better than any online support group and has made all of the difference in the world. Find a way to seek these women out. Go meet them! Don’t wait for someone to start a group – start your own!
The Last Word: If you are feeling ugly, remember that you are still truly beautiful; inside and out. If you have no one to talk to, email or call me. You know your body like nobody else – if something doesn’t feel right, tell your doctor. Insist. You’re not crazy. And it’s not normal.
If you wish to contact me, you can email me at firstname.lastname@example.org or follow my blog (which you’re reading right now…).
Enough about me. I want to hear about you!
And if YOU would like to share your story, you can do so by clicking here. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.
**Updated March 8, 2019**