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Confused by symptoms

Hi everyone,

I'm 31 and have always had very heavy and painful periods that for the last 3-4 years have been every 3 months (doctors told me this was just my 'normal'). Sex has always been painful but localized to the right side. My periods are so painful Percocet doesn't even cut through the pain, my legs hurt and at times it feels like my whole body hurts to move. Last November I started having bladder issues and thought it was a UTI- test came back negative. The odd part is, this only bothers me when I lay down; every night unless I'm laying a certain way or when I'd have my period-possibly bc I'm in so much pain I don't notice it. Occasionally bowel movements will leave send this shooting pain up my back and down my legs. Anyways, I haven't had my period in 6 months (zero chance I'm pregnant and I'm not on birth control), and went to the doctor about 3 months ago. An ultrasound came back normal, and my bloodwork only showed I was severely low on iron. A pap smear has come back abnormal last week but the doctor doesn't seem to be in a rush to get the results to me or discuss them (can endo be noticed on a pap smear?). I've been having brown discharge like old blood off and on for the last few weeks, along with what I consider "phantom" PMS and cramping.

I'm curious if anyone else has had issues like this related to endometriosis? I know some of the symptoms match, but what's throwing me is the bladder issue and the total lack of period.

  1. Hello , thanks for reaching out. The first thing I’d do is get the specifics of the pap smear result. Endometriosis won’t come up on a pap smear, though. The only current way to diagnose the disease is via laparoscopic surgery. Some of your symptoms do sound familiar to me, and I have endometriosis. But I also know that symptoms vary enormously among patients. The best plan would be to speak to a specialist, someone with experience on illnesses like endometriosis. Would this be possible for you? If you search Nancy’s Nook on Facebook you will find a very useful resource to locate any specialists near you.

    I hope this helps. Do update us with any news you get regarding your symptoms. – Jessie (team member)

    1. Hi there - how are you feeling today? Just wanted to reach out and thank you for your comment and question. Your symptoms do indeed sound familiar to mine and like some of the things I have dealt with. Firstly, endometriosis cannot be diagnosed via a pap smear. I have had one come back abnormal before but it turned out to be false positive and when they went to retest, the new test came back ok. I would definitely before anything, try getting in touch with your doctor and pushing them for answers on that.

      I have a lot of bladder issues, and I do believe it has a lot to do with endometriosis, but I also have IC- something some with endometriosis also have. Definitely worth brining this up to your doctor and seeing if you could get referred to a urologist to get further answers for your bladder issues.

      How long have you been off birth control? I came off my birth control in June, just to try to get my body back to normal, and have not had a period since then. So I just wonder if BC plays a role in not having a period? Like Jessie said, I would also consider looking into an endometriosis specialist if I were you, they would probably be able to assist you a bit better as well.

      Please, do reach out with any more questions and keep us posted on how everything is going. We are here for you! -Kimberli (Team Member)

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