It’s Endometriosis (Endo) Awareness Month — Together, we can raise awareness and educate others about this chronic and painfully debilitating disease!
According to mayoclinic.com, endometriosis (en-doe-me-tree-O-sis) is an often-painful condition in which tissue that is similar to the inner lining of the uterus grows outside the uterus. It often affects the ovaries, fallopian tubes and the tissue lining the pelvis. Endometriosis growths are benign (not cancerous). But they can still cause problems.
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I sat down and chatted with one local mom about her journey with Endo with hopes that her story not only brings awareness, but also helps someone else that may be struggling with this condition too.
Please tell me a little about yourself, your life, your family.
My name is Dani H. and my husband and I met in high school in Kansas City and started dating when I was a sophomore and he was a senior. He went out-of-state for college, but we always kept in touch and we ended up deciding to start a life together when I was 25. We kicked off our official life together with four months in Italy and moved to Austin in 2005. We have a 14 year old daughter I gave birth to with a lot of medical help. I had a full hysterectomy before she turned two. We also have a 2-year old daughter after many years of trying through surrogacy and egg donation.
Please share your Endo journey with the Austin Mom Blog readers.
I truly believe I had endometriosis from the very start of my first period. This may be TMI, but the morning of my first period I woke up and I had essentially hemorrhaged. There was so much blood I couldn’t believe it. I told my mom, she gave me some pads and I went to school. I now know the amount of blood and severe pain I was in was not typical. It was awful. Over the next two years I dealt with extremely heavy and painful periods, was severely anemic, and pretty miserable. When I was 15, my mom had me see an OB who gave me a prescription for birth control pills and sent me on my way. It helped so much, I felt amazing and had super light, easy 4-day periods. I took the pill for 10 years. Obviously in retrospect I wish I had known what I do now. Several times during that 10 year span I stopped taking the pill. I suffer from chronic daily migraines so I often wondered if the pill contributed towards that. Every time I stopped taking the pill my period returned in full force and it was so debilitating, heavy and painful I couldn’t live my life so I always got back on the pill.
When my now-husband and I got serious about getting married and having a family he suggested I get off the pill for good as I’d been taking it for 10 years. As soon as I stopped everything came back with a vengeance. Extremely heavy periods lasting for more than 2 weeks, anemia and horrible cramps. I was on my period more than I was off of it. One day I was having excruciating pain; it wasn’t like normal cramps, it was like a knife stabbing my stomach. I went to Urgent Care and they suspected it was my appendix and recommended I be transferred to the ER via ambulance. I spent 12 hours in the ER undergoing various testing. In the end the male doctor concluded I had gas and told me not to eat anything for 48 hours. I wish I was joking. I followed up with my primary care doctor who recommended seeing a specialist. I saw her and was quickly scheduled for exploratory surgery where it was determined I had severe endometriosis. At this point my husband and I had gotten engaged and were planning a big wedding in Italy. The doctor suggested if we wanted a baby we should start trying immediately. I distinctly remember her telling me that they make dresses to cover baby bumps and we shouldn’t wait. I wish I would have listened to her. Instead, she recommended I immediately take a shot which would put me into forced medical menopause. This would stop the growth of the endometriosis and when we were ready to start trying for a baby they’d give me a medication that would re-start my periods. This was absolutely the darkest time of my life. My doctor warned us that the medication forcing menopause was intense and I’d have all the symptoms of “menopause on steroids”. She suggested my then fiancé live in the garage if he could. She wasn’t kidding. Within a couple of days after taking the shot I felt myself spiraling. I’d never experienced depression or anxiety or any mental health issues, but I was at an unbelievably low point. I was so extremely depressed at what was supposed to be the happiest time of my life. I remember thinking that everything in my life was amazing and couldn’t understand why I was so depressed. Then I started bleeding through the meds which I wasn’t supposed to do. Hemorrhaging actually. My doctored ordered a second round of the menopause shot. I was miserable. The hot flashes and night sweats and general emotional wellbeing were nearly unbearable. I’m pretty sure my husband considered calling off the wedding and I would have understood. It was supposed to be the happiest time of my life, but I was so sad.
We got married, I never naturally started my period so had to have another shot to restart my cycle and quickly had to have another surgery to take care of the fast growing endometriosis. It was a situation of have a surgery, try to hurry up and get pregnant before the endometriosis came back. Shortly after one surgery to cauterize the endometriosis and clean out my uterus, I did get pregnant. For the first time in my entire life, I felt completely normal and amazing during my entire pregnancy. My husband and I joked that most women were emotional during pregnancy, but for the first time ever I was “normal”. Our daughter was born in September 2009. I exclusively breast-fed her, but four weeks after her birth I started my period again, and it was extremely heavy and painful and intense. I ended up having three different surgeries in our daughter’s first year of life to keep the endometriosis at bay. During this time we also tried for a second baby. My doctor told us we should start trying sooner rather than later. One of my most vivid memories is many times taking my daughter on a walk in her stroller and gripping the handle of the stroller, so hard, and having such intense pain, with every step I took. During this time I had two miscarriages. Finally my husband and I decided that in order to be the best mom I could be for our daughter I needed to have a hysterectomy which my doctor had been recommending for quite some time. When our daughter was not quite two, at age 30, I had a hysterectomy leaving just one ovary so I could still have my own hormones. Within 6 months I was in incredible pain again and it was determined I should have the remaining ovary removed. This surgery almost killed me. My remaining ovary was the size of a softball AND had a cyst also the size of a softball attached, it was wrapped around my bowels, and stuck to my bladder. I have three large incisions from that surgery where the doctor was trying to remove things, and recovery was way worse than my c-section. 13 years later those scars and nerves still cause me pain.
I’ve been on hormone replacement therapy ever since and have felt amazing. I have to make sure I take calcium, have bone density exams (I do have osteopenia due to the early hysterectomy and have had a broken heel and tailbone that I’ve been told I wouldn’t have had if not for the osteopenia due to early hysterectomy.)
My husband and I desperately wanted a second baby and a sibling for our daughter so we decided to pursue surrogacy. This was an entire journey in itself. Since I had to have a full hysterectomy and had no eggs of my own, we had to pursue egg donation. We did that, created embryos using my husbands sperm, used a surrogacy agency and transferred to our first surrogate in 2016. In a cruel turn of events, our surrogate had an SCH which is a blood clot common with IVF pregnancies. Usually they absorb or disappear. In our case it grew and we lost our baby at 18 weeks. Our baby was delivered/stillborn was the absolute worst day of my life. I was forced to pick a pink doll-sized dress for her from a basket. It was traumatizing.
My husband and I agreed to pause and spent a few months in Italy with our older daughter healing.
Our surrogacy agency found us a great new surrogate. We had a couple transfers of our embryos with her which resulted in a failed transfer and an early miscarriage.
We took another break and I thought we were done.
We decided to try again, during the Covid pandemic. We created new embryos, were matched with the most amazing surrogate and have the most unbelievable story of our transfer on February 15, 2021 during the insane blizzard/ice storm. That crazy unimaginable day and week ended up with us getting our baby girl, sweet Juliana Rae.
Unfortunately, it seems my 14-yo likely has the same issues I had including being diagnosed with the same autoimmune conditions. I am certain she has Endo based on her horrible cycles which are similar to what mine were and my husband and I have already told her that when she is 18 OR whenever she is ready to consent we will pay for her to freeze her eggs. She is agreeable to this and wants this as extra insurance. In addition to this, she is planning to go to med school and to be a doctor in a related field to fertility or Ob/Gyn or Pediatrics. She has also said after she completes her own family she absolutely wants to be a surrogate to help other families like we were helped.
Sadly, Dani’s story is all too common for women that suffer with endometriosis. By sharing stories like this, awareness is spread. We can only hope these stories help lead to advances in medical technology and that more help is made available. Thank you, Dani!
