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Diagnosis for endometriosis

To those of you who have been diagnosed with Endometriosis, how did the doctor determine the diagnosis?

Did they run specific tests, or did they just do an examination?

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37 Responses

  1. I did not get a firm diagnosis until after a laparoscopic surgery and that was after years and years of misdiagnoses and trial and error fixes that didn’t work. Endo is very difficult to diagnose definitively without surgery.

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  2. I had to have laparoscopic surgery to have it diagnosed.

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  3. Mary says:

    Have you gone to a fertility specialist?

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  4. I had a biopsy determine my diagnosis of endometriosis

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  5. My sister has dealt with this since 11 or 12 yrs old, still has issues after hysterectomy…

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  6. that’s what happened to me too

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  7. I don’t know…. but I know when I’m ovulating. It’s excruciating pain! Feels like my ovaries are loose rollin around as I move….. really weird and painful feeling….. when I took birth control pills I didn’t feel it. I dunno if that’s part of endo but have you tried the pill?

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  8. OP please message me as I have been diagnosed but it was not an easy journey.
    The only way to officially diagnose endometriosis is through a laparoscopic procedure. But finding a doctor who will refer you to someone to do the procedure can be quite the journey.

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  9. I too had to have laparoscopic surgery to have it diagnosed.

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  10. Ya I’ll never ever get an iud the thought just gives me the creeps lol

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  11. Natalie I maybe high but that doctor is cracked out!!

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  12. Marion Clark Marion Clark says:

    I had laparoscopic surgery and woke up with a hysterectomy done at 34. Gus’s I had signed a form stating they could do as they thought fit. No more pain though……

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  13. If them lesions were not removed from other structures (pelvic lining, other organs etc) then the pain will remain, and the condition will continue to do its grow shed cycle.

    Like others have said there is only one way to truly diagnose Endo, and that surgery with pathology done. Nancy’s Nook is a great source of current information on the topic.

    Gold standard is excision for it, but there is not many surgeons trained, or skilled in this area.

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  14. After 10 years of misdiagnosis and many ER trips , I was referred to get a laparoscopy surgery done. They found endometriosis lesions and excised it all but 3 years later and I’m having major issues again , my doctor is talking about another surgery in my near future. It’s good to know I’m not alone though! There needs to be more awareness and education spread with endometriosis.

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  15. Sam Manke Sam Manke says:

    Laparoscopic surgery as well. That’s the only way to diagnose endometriosis (unless you have endometrial cysts on your ovaries that are visible through ultrasound). Sadly the average time for diagnosis is 7 years. I had to switch doctors and specialists before anything was done to diagnose and treat me. Sadly with this disease you have to fight for yourself and push through until you find a doctor who will listen.

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  16. Amy Scott Amy Scott says:

    feel free to msg me. I was diagnosed after years of suffering and them speculating it may be endo or maybe something else. Finally I was fed up with maybes and wanted answers and progress so I found a gyno that would listen and had exploratory surgery. After they told me I had endo which they cauterized as much as possible and I also had my left ovary fussed to my uterus. The seperated them carefully to save my ovary. This was almost 10 yrs ago, they said I’d likely need the surgery again after 5 years but so far I’m doing good, I’ve only had about 20 cysts in that time, as opposed to up to 20 a month before, also my painful periods are rare and much more reasonable, I’m not bed ridden for a week like before.

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  17. Irene Ali Irene Ali says:

    Those with endo, please feel free to join the support group Endometriosis Alberta Support Group

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  18. Carmen Shaw Carmen Shaw says:

    My doctor could feel the scar tissue and burnt it off with a laser. It made a huge difference.

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  19. Lisa I had a Dr tell me the same thing… get an IUD!! I don’t know if it would have helped.. So here I sit in pain all the time. Because the Dr gave me 1 option and I decided against it.

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  20. My was a male… he seemed to think an IUD was the answer for everything. One of the things he said was oh and it will prevent pregnancy… I gave him a weird look and said ummm I’m not worried about that as my tubes are tied which you would have known if you read my chart!!!

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  21. Through a laparoscopy after trying a few different meds that didn’t help.

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  22. i have endo. i also have an iud. i live fairly pain free now for 7 years. just because you do not like what they say doesnt make it fact. this after having several surgeries due to the endo. its also been shown once inserted for a year to increase the chance of pregnancies once removed.

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  23. Cara Antoshko your not alone!

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  24. When they went in for the first surgery to unblock a tube that had unblocked itself, is when they found it. I have pcos as well, struggling with fertilty as well.

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  25. Kayla Setter Kayla Setter says:

    My fertility dr told my the only way to get an official answer was to have the laparoscopic procedure. They can assumed based on symptoms but no way of knowing until you have the procedure

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