What were your uncommon symptoms of endometriosis?

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Common endometriosis symptoms include:

  • Painful periods or dysmenorrhea
  • Infertility
  • Diarrhea during period
  • Pain during intercourse
  • Heavy or abnormal menstrual flow
  • Abdominal or pelvic pain after vaginal sex
  • Painful urination during or between menstrual periods
  • Painful bowel movements during or between menstrual periods
  • Gastrointestinal problems, including bloating, diarrhea, constipation, and/or nausea

But not all symptoms are as common as those listed above. Many people might be experiencing some uncommon symptoms but never get validation because others never mention those symptoms. If you think you have a symptom related to your endometriosis that is not as common as others, please let others know.

  • masoud hosseini asked 4 weeks ago
  • last edited 4 weeks ago
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My Endo symptoms were Painful sex, Periods that were heavy w/downward pressure, and severe pain leaving me bedridden during it. Severe GI symptoms such as Bloating, Nausea, Feeling Full, Lack of Appetite.

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Also:
1. Diarrhea FOR MONTHS, not just during periods

2. Passing dark blood rectally, always while asleep

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I had 2 early miscarriages when we started looking for a kid. Months later I developed strong pelvic pain. Everyone thought I had endometriosis because I had a history of heavy painful periods. The main recommendation was to go to IVF without a properdiagnosis. It took me more than a year to find a doctor wasn’t going to settle for that. A doctor that was decided to do the laparoscopy and diagnose the root cause. That way we discovered that it wasn’t endometriosis, it was a extremely extended PIS that needed a 4 hour surgery to remove all the adhesions that had generated and a heavy antibiotical treatment right after that. Women of the world… demand to know exactly what is wrong with your body, its is very important to don’t just “guess” over our heath.

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Ovary pain. Bloats that came on so fast that I could go from regular clothes being fine to only being able to wear the only “tent” dress I owned. If I had eaten or drunk anything in the half hour ahead of a rapid bloat, it came out as vomit w/in 15 or 20 minutes.

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Chronic pelvic pain. Every single day. The constant state of pain made it difficult to relate it to endometriosis which usually causes more pain during the cycle.

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I’ll experience chest pain, dizziness, and heartburn

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I suffered from shortness of breath, insane fatigue, night sweats, awful night mares, hot flushes, pins & needles down the legs, coccyx pain, inability to tolerate my menstrual cup after years of no problems, depression, flank pain etc. All symptoms have fully disappeared shortly after excision surgery with a specialist.

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-Inability to tolerate walking without a significant lift in only one shoe (Endo found in and excised from inside one hip joint, which presumably altered how the hip sat in the socket)

-Chronic excessive vaginal discharge & chronic yeast infections

-Highly sulfuric smelling gas from either belches or passing wind aka “rotten eggs” smell (resolved after bowel resection removed bowel Endo)

-Vaginal hemorrhage or heavy bleeding specifically after eating meals

-Vaginal hemorrhage or heavy bleeding ignited by sex or vaginal penetration

-Leg and foot numbness

-Stabbing pains in feet and legs

-Feeling of a dowel rod being drilled straight thro the abdomen and out the back (same spot each time)

-Feeling movement inside the abdominal cavity like an organ sliding into a blindingly painful position and then eventually sliding back into tolerable position after a few hours (now know it was bowel sliding into herniated space left from 1 broad ligament which had been essentially dissolved by Endo)

-Piercing pain at the very base of the sternum

-Recurring hypermobile cecal syndrome (Hx of multiple cecopexy performed during endometriosis laparoscopic excision operations, each cecopexy was helpful for patient and improved pelvic pain)

 

*Please note patient has also been diagnosed with MCAS.

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My uncommon symptoms would be
1)right shoulder pain,
2)pain under breasts,
3)rib cage/ between ribs.
4) Flank pain on both sides.

Was told I have diaphragmatic endo and am waiting for excision surgery with MIGS specialists and thoracic surgeon. (Canada) I also have most of all the other “common” symptoms.

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Very frequent urination with “flare ups” that would have me running to the restroom every twenty minutes. Also, lactose intolerance and random abdominal pains/twinges. All of which have been resolved since excision surgery over a year ago.

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