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Endometriosis?

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emily7998
emily7998

I have been experiencing a lot of symptoms for about 3 years now and have not gotten a diagnosis. I am looking for some guidance/suggestions before I speak with my gyn again.

My periods before birth control were insanely heavy (1 pad every 1-2 hours) and 8 days long with bad cramps. In 2016 I began experiencing intermittent pelvic pain, never in the same spot. I also had extreme pain with sex. I was on norethindrone at this time, which I now know is a treatment for endometriosis, hence some confusion now. I came off all birth control and it didn't stop. My birth control was then switched to Junel Fe which stopped the majority of the pain but caused a blood clot so I stopped it. Because of the blood clot, my only option was an IUD. I got the Kyleena IUD in January 2017. My period was so abnormal I did not get a regular period until June 2018. Up until this point I would have random spotting with the occasional period at random times. Spotting more days than not. No pain, however. I finally got a regular period for 4 months and then I got a period that lasted almost 30 days, only stopped by starting medroxyprogesterone 2.5mg daily. I have been on it for probably 1.5 months but now I have my period again. It is fairly light, average I'd say, with cramps though. Day 5 right now. I was under the impression I would not get a period on this pill (called my gyn no answer yet). I know this pill can also treat endo. I hate this constant struggle and would love if I could get a doctor to give me a reason and a plan for once. Has anyone experienced this or have any clue?

FYI- I have had multiple ultrasounds & tests; no cysts, fibroids, PID, STD/STI's, etc. No clearly visible problems.

0 likes, 2 replies

2 Replies

  • aitarg35939
    aitarg35939 emily7998

    Posted

    Hi Emily

    Your body is putting you through the wringer it seems.

    So far as diagnosis, you need a laparoscopy. In the States those are only done by ob/gyn or gyn. Apparently in the UK the system is different. Because of your youth, you may have to push hard to get the lap before age 25-27. List ALL the different treatments in bullet format, then list all the tests, then list your history. Take that to everyone you see about this. Hand it to them and ask them to please read it. Smile and say, "I'll wait."

    Despite everything that's been checked, they may run you through a bunch of gastro tests including a colonoscopy. Just go along with it because doing so will get you closer to the lap.

    If I were you, tho, I'd be hoping for something more treatable than endo. That clot limits everything and it was really tough luck that it happened. We all theoretically run that risk with various hormone treatments, but still! I took '70s mega-strength BCP and switched to HRT after my complete hysterectomy in '82, smoking a pack of cigs every day throughout. It really is rotten luck, so I hope that your health luck changes soon.

  • amy57522
    amy57522 emily7998

    Posted

    i am in the UK and the system is different to other countries. normally they go through the while its IBS we will book a scan and a colonoscooy blood tests and they tell you its just period pain. its a push and a struggle to get taken seriously here.

    you are describing what i went through with mine.. i still bled with different types of pills. although the pill or any other hormone isnt a cure for endo as there is no cure it just helps stop periods to helo reduce symptoms but sometimes its not the case.

    i am not sure what country you are in to be able to advice on steps to take because every country is different but i what i found helpful with getting a gynaechologist to listen was downloading an app called catch my pain and i marked down where my pain was, how the pain felt (dull,sharp, stabbing, dragging, tight, pressure ect) and listed what mesicstions and pain relief i had tried and noted what i was doing st the time and if i had found the relief and how long the pain lasted (did it come in waves and come and go, was it sudden, gradual, constant)

    i also too note of urinary and bowel movement so he could seperate stmptoms from each other and also noted down symptoms and regarding intercourse.

    this helped my doctor understand and each day i put a new diary entry in to help them see as you can use the pain scale on the app too. you can print it or email it too them ir their secretary for them to see all your symptoms in a diary form.

    in regards to the pill maybe speak to your doctor and explain youre still getting symptoms but i do recommend that app and its free to use too.

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