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Real members of MyEndometriosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has Anyone Else Had A Hard Time Being Diagnosed?

A MyEndometriosisTeam Member asked a question 💭
Phoenix, AZ

I have almost every symptom of endometriosis. Painful cramps (on and off my period) since before I even started my period at age 11. When I was younger I went to a couple different doctors and they tried to downplay my pain and told me it’s normal and I need to get used to it. I only had one doctor that did diagnose me with PCOS based on hormone levels but never did any imaging. As an adult I have gone to two different Gynos and one told me I “probably” have it and did a vaginal ultrasound. He… read more

November 13, 2020
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A MyEndometriosisTeam Member

Endometriosis typically doesn't show up on imaging. So what many doctors do is just diagnose you based on the symptoms you are having even though to get a true diagnosis you need to have a diagnostic laproscopy. As for treatment, I think your doctor was probably offering Lupron, it puts you in temporary menopause, not a permanent one, there are also pills that do this. The best thing to do is to get in touch with an excision specialist like recommended above.

November 14, 2020
A MyEndometriosisTeam Member

First of all, I’m reall sorry to hear this. I can’t imaging being undiagnosed for so long and I thought 4 yrs was long. I think the problem is, from my research, the only way you can diagnose endo is by doing a laparoscopy. They probably just want to experiment by putting you on things to control your homones. Have you asked for a laparoscopy?

November 17, 2020
A MyEndometriosisTeam Member

First of all, I have had the same experience with doctors over the years. I finally found an excision specialist through Nancy's Nook, as well as tons of information about endo! None of my scans ever showed anything unusual either, & I had lots of ultrasounds & also a pelvic MRI. I just had surgery with an excision specialist & he found lots of endo & adhesions & was able to remove it all. I also did hormone testing & he diagnosed me with PCOS too. If you get a skilled surgeon to remove it thoroughly, it won't likely come back. Though it's true there is risk of adhesions with any surgery, many women find fertility can be improved after excision. Also, excision is the only effective treatment & endo untreated can lead to progression & damage to pelvic organs, so that is something to consider. I only had stage 2 but my bowel was adhered all the way down my left pelvic sidewall, fallopian tube stuck to my bowel, endo on my bladder & uterosacral ligaments, etc. My advice is to join the Nancy's Nook group on Facebook & read up as much as you can & search their list for a specialist or two to consult with. ❤❤

November 13, 2020 (edited)
A MyEndometriosisTeam Member

Laparoscopy is the only way for diagnosis. Sounds like a hormone treatment. Perhaps Lupron? Just like Jcd said those treatments will stop your period and hault the production of estrogen in your body hence putting you into artificial menopause. Stopping your period- stops majority of pain.

November 13, 2020
A MyEndometriosisTeam Member

Try Slynd birth control!!!

November 21, 2020

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