Endometriosis story


  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.





Suspected Endo but Clear Laparoscopy?

by Rach
(Minnesota)

I started having SEVERE periods around age 14-15 (started my period at 12) and finally at 17 I sought treatment for what my mom thought was endometriosis.

My symptoms were heavy bleeding, severe cramps (legs would go numb!) pain in my rectum, unbearable BMs (I would resist BMs to avoid the pain) clots, nausea, the whole 9 yards.

I stayed on birth control for many years, and it helped tremendously when I would skip periods. I would still have painful BMs, but not near as bad as before.

But, since the periods were more than bearable now, I ignored the rectal pain.

Until about age 22, then I started having pain during sex, and the pain was in the areas I used to have pain during my period, when I was in my teens.

I had a laparoscopy when I was 24 and my Dr declared me endometriosis free... which was INCREDIBLY frustrating because I was having all this unexplained pelvic pain!

I have pain during sex almost every time my boyfriend and I have sex... a lot of the pain is to the right ovary area, the cervix, above my navel, my lower back, and rectal region. I can only lie on my back during sex as it is the only position that does not hurt me.

Note: I WAS NEVER GIVEN AN ULTRASOUND OR ANY KIND, OR MRI OR COLONOSCOPY. Just laparoscopy.

I stopped taking BC for the first time in 8 years last fall (Oct 2014 to May 2015) to see where I stood, and did so again (Oct 2015-to currently (Jan 2016) and my periods SEEMED normal. BMs were still painful, and I avoid sex after my period (1-2 days) because it will be the most painful during those few days.

I'm so very frustrated and at my wits end about this pelvic pain. It makes me very self-conscious and sad when it comes to sex... I am 27 and I can't enjoy intercourse like a normal woman.

I've been doing EXTENSIVE research about endometriosis... I have read it can be so micro that it cannot be seen with the naked eye during a laparoscopy. I read it can form IN the walls of the uterus muscle! It can attach to the colon! The pouch of Douglas/cul de sac! It could be adenomyosis.

I'm planning to seek out a 2nd opinion, or 3rd! 4th!

I've been told it could be a tipped uterus, or vaginismus, or anxiety during sex (it is NOT) or a tender uterus. Many things.

Dear ladies, you know your body better than anyone else. KEEP FIGHTING TO FIGURE OUT YOUR PAIN.

I would love to hear thoughts and opinions please!

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