Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Hello all! Almost-25 year old here. Have been coping with suspected endo for nearly 10 years. Appointment with the OBGYN is still a year away. I have yet to be diagnosed, though have seen many doctors over the course of the last decade. Like many others, the long and short of it is that I have been repeatedly dismissed and misdiagnosed..."Kidney stones, uti, *womanhood*, etc." I am too emotionally and physically exhausted to keep fighting this seemingly losing battle and am well aware of its likelyhood to return despite treatment.
Was wondering if any other endo sufferers have decided to forgo treatment completely and how this has affected you?
As it stands, I am urinating blood with large clots and bleeding rectally with every bowel movement during menstruation. I typically menstruate once a month, though I usually only need to wear a thin liner that (if not for proper hygiene) could last me an entire week as I don't actually bleed much other than the aforementioned issues. Sometimes my periods are irregular, menstruation occurring every 2 weeks.
Debilitating pain is a daily issue in which pain relief is non existent. Narcotics are ineffective and I am bed ridden a minimum of 2 days per month due to pain. Have been diagnosed with pelvic floor dysfunction...urinary retention as well as incontinence are my norm. At 25, I cannot wash my hands without urine dribbling out of me against my will (I have not even had children or ever been pregnant lol!) but can barely start -let alone maintain- a stream of urine despite the strong urge to urinate every freaking five minutes. An ultrasound detected that I only emptied 30% of a bladder so overly full the tech said it was squishing other organs.
The ultrasound did however detect an ovarian cyst and another detected internal bleeding near one of my kidneys. Have been having chest pain and upper abdominal pain for years as well as recent pain development in ribs. Cardiograms and upper GI series detect nothing wrong. Have a feeling endo is spreading.
Needless to say, my quality of life has been very dissatisfactory up until this point.
When you say "Forgo treatment", do you mean cease some kind of treatment you're already on? Or have you never had any sort of prescription or surgery?
I passed out from the pain while I was in the shower yesterday, hit my head off the bath tub. I now am concussed.
I've been prescribed Tramadol for daily pain, it is only somewhat effective some of the time. Percocet was not strong enough either, as I have received it during a trip to the hospital in the past. I have yet to get any sort of treatment plan, only tests ordered by incompetent medical professionals who have no actual idea what is wrong with me. I insist I be checked for endo but am ignored. Don't see the OBGYN until next year. I had to fight for a referral.