Getting diagnosed with adenomyosis and suspected endometriosis has left Michelle struggling to manage her health and has had unsympathetic treatment from doctors in the past
This is Michelle's story .....
I am very grateful for this website...it is a wealth of information and has helped put things in perspective for me. I was tentatively diagnosed with endometriosis in June of 2019. I always had long, irregular periods but my cramps seemed run-of-the-mill until my early 20s.
I started to noticed extremely severe pains immediately at the onset of my period...I would be on the floor with sudden pain, go into the bathroom and find my period had started.
I also began having severe migraines and dizziness, which I didn't think was related to my cramping, but later learned I am predisposed to migraines, but they are worsened by excess estrogen. I began to have constant dull aching in my lower abdomen and lower back.
This was also coupled with frequent supposed UTIs. My doctor would treat me for the UTI, but the test would later come back negative. My urinary troubles became constant, until I was feeling the need to urinate more than twenty or thirty times in a day, with constant bladder discomfort and pain.
The breaking point was a sudden onset of severe right-sided flank aches coupled with nausea and blood in my urine. This sent me to the ER, where they checked me for kidney stones (because I have a history of stones).
Nothing was found except a cyst on my ovary, and I was told to follow up with my urologist. After a complete exam and a cystoscopy where my bladder and ureters were examined with a scope, my urologist said everything was fine and encouraged me to find a new gynaecologist to rule out a gynaecological problem.
The two gynos I had already been to were either completely unhelpful or outright mean.
One of them made me feel crazy, telling me my pain was normal and each symptom was insignificant...the urinary problem was that I ate too many acidic foods, and the lower back ache is just a muscular issue, and as for the cramps...I just needed to take several Advil and deal with it.
So I returned to a gynaecologist I had visited as a teen, who I remembered had treated me very well. She was sceptical about my story at first, saying it didn't sound like classic endometriosis. Then she did an ultrasound.
It showed a very large adenomyoma in the right front wall of my uterus, pressing against my bladder.
She said she had never seen anything like it in all her years of practice. She said adenomyosis is uncommon in a 26-year-old who has never had children. She also said it is likely I have endometriosis, but there is no way to know how much or how little without a laparoscopy. I started continuous BCP back in June, and it seemed to help a lot until recently, when the stabbing pains returned, this time in my left side.
The terrible nausea and cramping in my bladder has returned with a vengeance and I'm starting to think it's time for that laparoscopy. I just want to know for certain what is happening in there. I am so glad for the information here. Thank you to everyone who shared their story.
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