These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
by Erica
(Connecticut, USA)
Hi all,
I'm a 22 year old rough and tumble college student and I am not the type to fret over the simple aches and pains that accompany being a lady. For many of us, however, calling them simple aches and pains is a gross understatement. Over the past few months I've been having ambiguous symptoms and changes in my cycle that have me pulling my hair out!
They say hindsight is 20/20 and looking back, as I'm sure many of you could agree--or hopefully, I realized my periods used to be generally pain free, with the occasional twinge here or there. I will try not to get too off topic here... I feel that my pain all started off two years after my first period when I was 16 and had to be hospitalized for burst ovarian cysts.
Ever since then I've always had terribly painful "ovulation pains" as I came to know them; always unilateral on my right side. I've been blessed with the gift of frequent UTIs I came to realize. But as of late the symptoms I felt when I had a UTI and/or a kidney infection (increased urgency, pain after and before urination, flank pain radiating to my groin, etc) my alarm bells were going off.
Urinary symptoms increased dramatically over the past year. Now bowel comes in to play. Over the course of the past six months I've developed internal and external hemorrhoids, (sorry but I feel the need for full disclosure!) that come with their own symptoms. In addition to the hemmies my bowel movements are completely unpredictable. I know some of this overlaps with IBS and other GI ailments but endometriosis and GI issues are not always mutually exclusive !
I am either painfully constipated to the point that I can just feel the toxins building up from an inability to go, or I am in the bathroom every thirty minutes with diarrhea. The bloating has become a horrible, chronic issue as well. The bowel symptoms are worse when I ovulate and used to dissipate until increasing during the beginning of my period. Now the bowel and urinary symptoms are steady from ovulation until my period about two weeks later.
I have an extremely high pain tolerance--it's landed me in the ER for IV antibiotics for kidney infections, because "I didn't think the pain was severe enough to indicate a serious problem-- but the pain felt during ovulation and my period from the symptoms listed above, as well as the billeted ones below has really made me question WHAT THE HECK IS HAPPENING?!
HIP JOINT AND LOW BACK PAIN. Over the past two years it's gotten to be terrible at the time of my period. I am an athlete and figured it was just a tight IT band or something, but it's gotten to the point that I can feel my gait has changed. I am so stiff with pain from the head of my femur where it articulates with my pelvis all the way down my thigh and it radiates into my buttocks and settles in my lower back. Before my period it migrates to my shoulders as well.
Starting a week before my period the hip pain gets so bad that whenever I lay in the fetal position (after several Advil around the clock) I need to constantly keep my upper leg elevated to decrease the stress on my hip joint-- I always have to keep a blanket or pillow inbetween my knees otherwise it's excruciating.
PAIN WHEN SITTING DOWN. Awful pain whenever I sit down. I am going to college for occupational therapy and know my muscles and how to palpate... The pain is strictly felt in sharp instances when the rectovaginal septum is felt (the area between the rectum and the back of the vagina). This pain disappears after my period.
INFLAMMATION: so bad that my jaw and teeth ache because my gums are so swollen. I get a gap in my front teeth! Also any scratch on my body swells up like a balloon.
HEAVY PERIOD AT ONSET/NO OLD BLOOD
PAIN! The only way I can describe the general location/intensity/duration of the pain felt during ovulation and menstration is a burning feeling that is so deep and penetrating and impossible to pinpoint that it makes you feel as it you're going crazy. The general location is a burning felt deep to the round ligament that radiated to my flank and into my thigh. I am worried about the possibility of adhesions because my mother has endometriosis and she too had similar symptoms that went undetected for so long.
The pain is also a stabbing pain that runs from my rib-cage to my illiac crest and pelvic/hip joint area. The best way I can explain it is it feels as if someone has tied a rope connecting any specific area in my low abdomen (kidneys, bladder, ribcage...) to my pelvic region, and they are tugging on the rope causing a tightening, shooting, lightening volt sensation of pain in the two areas.
Other symptoms:
Chronic fatigue, cold hands and feet and awful circulation, pain on BM or urination that makes me unable to exert at all, craving absurd amounts of sugar past few months.
I am sorry for listing such a litany of anecdotes and symptoms but I'm become desperate for some type of definitive answer. My ultrasound is scheduled for 4/7 a week from today, and hopefully I can gain some sort of insight from those results.
I wish you all the best of luck and many pain free days ahead if you are still stuck in the limbo that comes with any impending diagnosis. Thank you all for listening and If I can help at all just hollar!
-Erica