Real World Endo-Warrior Stories

4 months ago Community Discussion iCareBetter Team 4 comments

Real World Endo-Warrior Stories

Nothing is more powerful and authentic than an actual patient’s story. Patients with endometriosis experience the health system in a unique way that makes them doubt their pain and will cause delayed diagnosis and treatment. However, many decision-makers, doctors, and insurance companies still do not believe them. We want to dedicate this page to you, the endo-warrior who has gone through all of it. If you add your experience with endometriosis here, you help achieve two goals for the endometriosis community:

First, you are strengthening your and other patients’ stories here because it will not be only “you” or “she.” It will be several people with terrible experiences that led them to the same results: delayed diagnosis and treatment of endometriosis.

Second, you help this page get ranked first on Google search. This is important because whenever someone, including insurance companies and doctors, searches for the term “endometriosis,” this page shows at the top. Then, they see what is happening to patients, impacting their judgments and decisions. And that judgment and decision will affect many patients’ lives.

So please take a few minutes and share your unique journey of living with endometriosis and receiving care.

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anonymous

4 months ago

I have been suffering with Endo since before my 10th birthday. Of course, I didn’t know that was the cause at the time. I didn’t even hear that word until I was 12, and it was not a doctor that said it.
After being pushed around by my pediatrician for over 2 years and being denied a GYN referral because of my age, my mom brought me to a GYN on her own.
The first GYN, no luck at all. Terrible experience. Complete dismissal.
The second one said I *might* have endo, and basically to get a hysterectomy. He literally recommended and said he would perform a hysterectomy at 12/13 YO, but refused to do a laparscopy to even diagnose endometriosis to begin with. After denying the hysterectomy multiple times, I didn’t even have the laparoscopic surgery to diagnose endo until I was 15.
Thus started my journey of living with the official endo diagnosis. He found it on too many places to list, but the ureters, pouch of douglas, ovaries, pelvic sidewalls, uterosacral ligaments, and colon to name a few.
Since then, I have continued to deal with severe pelvic pain, heavy and irregular periods, low back pain, widespread spasms, sciatic pain, chest pain, GI pain/symptoms, urinary pain/symptoms, lost my gallbladder and appendix, and many other painful symptoms. I have also developed many new ones along the way like frequent urination, and other conditions like IBS, IC, PCOS, and more.
I’ve had 8 surgeries so far (3 of which were excision done by specialists, 1 of those at the CEC). I’ve tried more medications than I care to count, including birth controls, pain meds, lupron / depot, and even psych meds the doctors swear would make a difference. (I know, give me a break.)
I’m 25 now and still don’t have a handle on my endo symptoms. I wonder often what my life would be like if I would have known better, and had my first surgery with a specialist to begin with.
My hope is that as the years go on, there will be less and less young people that have to spend the rest of their life wondering that exact same thing. Let’s end the cycle of repeat failed surgeries by unqualified doctors.

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Why is Ireland so behind and it’s women have to suffer without help!?
Afternoon, from an unusually very sunny green Ireland. I won’t mess around with the topic in question and will get straight into topic in question.
I am an Irish female now 27, had my very first period at age 9. I would have to triple pads as I had “gushes” when standing. Bad pains always and throughout the years was told the usual attention seeking or puberty related etc . Sent through cross border scheme to see a Gynae specialist in Northern Ireland at 17 years old through the H.S.E to cut their waiting times as I was waiting approximately 3 years . Fast forward and results from surgery were large amounts mostly found in the Pouch of Douglas. Not much else was said our explained. As it was cross border care no more help was offered. Merina fitted at time of surgery & Pill also required with no breaks.
weight gain followed and headaches with bleeding still every few weeks . Removed after 4 years and embedded.
fast forward to age 27. Two children thankfully but bad pregnancies. Now crippled in pain periods not regular and pains can last 4 days before until a week after. Not much period cramping more pain felt in lower back and also very bottom of spine near anus .
bowel movements that have me mooing like a cow on all fours and using up to 4 heat pads at once . Pain meds supplied . Going private is not an option as work full time and get by like a normal individual. No care really available to me at my last Gynae appointment they sympathised so much and sent a referral to the endometriosis clinic in Ireland . A waiting list that could take two years . Been offered injections to put me into menopause temporarily .
where does one go? How can one be left in such a situation ? Horrific pains that leave you in bursts of agony and tears and unless you have a lot of money no help . The system is so wrong the wait is cruel

In 2017 I began experiencing strange pains in my lower abdomen and pelvic region which continued on and off for several months. In an attempt to relieve some of my discomfort, I began massaging my abdomen. That was how I discovered a large mass in my abdominopelvic region. Since I’m a surgical tech and have witnessed many open hysterectomies of enlarged, fibrotic uteri, I thought that was likely what I was feeling.
In June of 2018, I went to see a gynecologist. Upon palpating my uterus she told me it felt normal, but, upon my insistence, she sent me for an ultrasound. Within a few hours, I received a call. It turned out that the large mass was actually my left ovary. It had become so large that it reached all the way into my central lower abdominal region. Concerned that it could be ovarian cancer, I was sent to do a CA-125 blood test, and I spent 6 agonizing days waiting to know the outcome. The results showed elevated ca-125 levels, but well below the levels normally seen with cancer. I was then referred to a gyn oncology surgeon.
During the consultation with my surgeon, she explained, much to my relief, that she may be able to avoid open abdominal surgery in favor of DaVinci robot surgery. She explained that the mass, which measured 15 cm in length, should just fit the largest available specimen retrieval pouch.
On August 7, 2018, I had my surgery. This is when, at the age of 45, I received a diagnosis of endometriosis. In addition to a very large endometrioma that had completely destroyed my left tube and ovary, it was discovered that the scarring and adhesions had done significant damage to my left ureter, resulting in severe chronic hydronephrosis and complete loss of function of my left kidney. I later learned that this is referred to as silent loss of kidney secondary to endometriosis. I still don’t know whether deep infiltration of endometriosis was also involved in the loss of my kidney since I would have to undergo another costly medical procedure that I can’t afford to find out.
Looking back, I now realize that I had exhibited many signs of endometriosis (bleeding between periods, irregular cycle, etc) from my teen years on that should have been recognized by my providers, yet it was never even suggested to me. Since my diagnosis, I’ve found it exceptionally difficult to find a GYN doctor whose interest or knowledge of endometriosis extends beyond it’s effects on fertility. Why? Women endo suffer a multitude of ill effects beside infertility. We’re far more than vessels for new life, and it’s long past time we all are provided the same level of care, regardless of our degree of interest in having children.
Thanks for taking the time to read my long-winded comment/rant.

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