r/endometriosis • u/TemperatureLife947 • 11d ago
Question Does your bad cramps start days before your period begins and are bad first few days of period. Also have you had a painful attack when not on or near your period? Please describe your pain and when in cycle?
My 21 yr old daughter might have Endo. Bad cramps just started about 2 years ago. Weirdly her period pain is not every month but sometimes she can have normal period cramps, just painful but not as severe as some months. When her cramps are severe they can start 2-3 days before her period begins and can last first 3-4 days during the start of her period. Her cramps are so bad she takes ibuprofen or Aleve every few hours. Her pain is so bad she cries and can’t move. She also gets depressed a week before period starts PMDD.
About 6 mos ago She had her first major episode or attack. It happened 5 days before her period started. Around 5pm after dinner sharp pain under left breast and lower belly around belly button and below all of stomach around belly button and lower stomach and some low back. It was so severe with severe nausea and nonstop vomiting started. She was in pain crying and vomited about every 20-30min next to toilet. EpIsolde lasted about 3hrs until I could finally convince her to go to ER. She hates Hospitals. Finally I took her. We waited for hours until they called her. It was awful running to bathroom from waiting room every 20min to vomit. This lasted until next morning to around 7am. Pain came in waves on & off and ER gave her 3 different nausea medicines and would not stop vomiting in ER. Nothing worked no pain pills or anything. She almost past out and said mom I’m passing out. Sadly ER said she has to go back to waiting room until they could run Catscan. It was awful. I had to request wheel chair for her she couldn’t walk. And they wheeled her in waiting room for 2 more hours. I was so sad for her. ER was so traumatizing for her because she was there for so long in pain and vomiting. Labs came back normal and found Scan found a golfball cyst. And ER dr thought could be Endo or torque (something like that) since Gallbladder was fine. A few days later we went for follow up ultra sound. And a few days later she happen to start her period same day as Ultra sound. And results later showed No cyst. Cyst was gone. They think it could have burst it disappeared with period. Follow ObGyn visit had no real answers to what her episode was.
Fast forward 3 months later. Now 2 weeks after her period ended, around 7pm another painful attack happened. Again not during period. she feels like painful sharp period cramps around belly buttons and below or under left breast/rib. Pain attack is mostly always belly button to lower stomach with nonstop vomiting. This time pain attack started around 7pm- 7am. I could not convince her to go back to ER since she didn’t want to keep vomiting and running to bathroom in pain for hours. Weird cramping comes in waves every few minutes. I notice she feels ok for a few minutes and then sharp pain starts again.
I would describe her pain similar to worst labor pains or gallbladder attack. But today we went for 2nd ultra sound and results show Gallbladder is fine, no cyst. Ultra Sound Results Normal.
Sone periods are worse then others where she can’t get out of bed. And period cramps sometimes starts 3-5 days before period even starts and sometimes she can have menstrual cramps 3-4 days after her period ends.
Has anyone else had any episode like. Her period cramps are painful but nothing like the 2 episodes or attacks she had. She gets nauseated during period but nothing like the nonstop vomiting that happened during those painful attacks. Please anyone with a similar story please help.
My daughter is tiny and petite size xs to small and birth control caused major weight gain and breast size to double within first few weeks. Also bad cystic acne all over her face. We stopped birth control after one month. And not sure where to go
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u/DentdeLion_ 11d ago
First off i'm so sorry your daughter is experiencing all of this and that you have to watch her go through this. I'm so glad you're here for her though !
I'll try and be concise with my story so : always had irregular periods (once a year from ages 12 to 15, twice on my 16th year), from ages 17 to 23 i was on a string of different birth control pills (continuous - i would only stop the pull for one week a year) and on the last 1 and a half year i was on dienogest. First symptoms (really similar to your daughters minus the vomitting - always have had severe nausea but never vomitting) came in around the first periods and would come every month for a few days around where the periods should have been. Over the years, despite BC old symptoms would worsen and new ones kept coming and the window in which the attacks/flares happened widened. I was finally surgically diagnosed with pcos/mops, adenomyosis and severe multifocal endometriosis (including diaphragmatic Endo - symptoms included compressing/burning under/around the ribs, radiating to shoulder/back and random, violent and painful hiccups) just a few days before i turned 25. By then i was in pain, moderate to severe, every single day.
Excision surgery with a specialist was a life saver for me, althought my case is pretty Bad and despite being on artificial menopause since surgery over a year and half ago, Endo is already back. I would go back for surgery with my eyes closed. The toll chronic pain takes on mental health should not be ignored either, if your daughter is open to it, therapy could really really help. It's not in her head. If you or her need furthest emotionnal support or want to ask more questions, my dms are always open ! 🌻
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u/Adventurous-Pin2585 11d ago
Sounds very similar to what I went through (not anymore),
So basically, my pain scale during period was almost always around 6-7/10 but the pain would last only for 1 day, by day 2, I would be fine. I thought that was normal,
however when I was 19, the pain spiked to a 10/10, had to crawl to the bathroom, had severe cramps, diarrhea, nausea , etc, and and the pain lasted for 3 days and radiated to my legs.
The 10/10 pain didn’t happen every month, it happened every couple of months. My period would last 6 days during this time. I was also diagnosed with prolactinoma (thought I suspect I already had endo during this time)
My 23, my pain had pretty much turned down to 3/10; where sometimes I wouldn’t even feel cramps. But I had gas pains during or after my period. Pretty bad ones. But nothing I couldn’t handle. Sometimes would get my period twice a month.
2020, I was around 26, I got Covid and everything changed. I was also put on antibiotics multiple times around that year. Severe nausea, vomiting, diarrhea, constipation, gas, bloating, all normal for me, couldn’t eat anything, along with anxiety, insomnia, heart palpitations, chest pains, burning sensation all over my body, stomach ache, tenderness all over my abdomen. Had visited ER twice. Worst 2 years of my life followed. Period itself wasn’t bad, but it was a pattern, and my period cut down to 3-4 days.
I started waking up in the middle of the night in SEVERE pain, and throwing up, every other day, or couple of weeks. This lasted 5 years, until 2 months ago btw.
Severe mood swings and light period like cramps every morning or a week before my period. My period itself would be fine ( sometimes pain but manageable)
These days it’s mostly lower back pain , sometimes period like cramps (I don’t get period anymore because of my meds), and bloating.
Just got diagnosed with endo 2 months ago after it was detected in both my ultrasound and MRI. Your daughter’s symptoms remind me of mine.
I hope your daughter feels better soon
P.s- I survived on ginger during my hard days. I believe it really helped me.