Join a Community That Understands You

Get answers from those who share your health journey

Left Image 1Middle Image 1Right Image 1
avatar

Talie

Updated 10mo ago

Dealing with Unexplained Gynecological Pain

I've never posted on here before but wanted to give it a shot: last night my gyno advised me to go to the ER for evaluation and workup after 5 days of off and on pain and discomfort in my lower abdomen. The pain started Thursday, as did my period, and was easily a 9/10 in terms of pain. I almost passed out. Friday I called my gyno, and they said they'd get back to me Monday. Fri was probably a 8/10. Then the pain started radiating to my back and thighs. No medications worked, heat was a Godsend temporarily. Long story short, the ER found nothing wrong and just said I was mildly constipated. But im having a hard time because everytime I would said "uterine pain" they would look at me funny, like they didnt understand what i was saying. I just keeping picturing their faces in my mind. I wasn't kept in the loop at all and didn't even know what tests they were running. I feel like I waited for 6 hours for them to tell me I'm crazy. My own gyno said there is no explanation for my pain based on the bloodwork, urine, and ultrasound. So, I guess now we just wait and see if it happens again? I feel like I'm going insane.

Can you help? Connect today

avatar

Sd123

2y

Im so sorry you had that experience! Your pain and feelings are valid. I’ve never experienced that “pass out from the pain” kind of feeling before my endometriosis got bad. If it’s persistent, Dr Kanayama is an amazing endometriosis specialist in New York. I traveled from California to see him. He finds hidden endometriosis and or adenomyosis in so many women that have been ignored or dismissed by other providers. He even will find hidden lesions that we’re missed on previous laparoscopic surgery with other big name hospitals etc. Not sure where you are but he does virtual consults and he definitely changed my life.
avatar

Talie

2y

cool! I'm in Pennsylvania so that's awfully far. Thanks for the response, I will look into it.
avatar

jamin90

2y

My endo didn't show up on an ultrasound either. But my doctor went ahead with surgery. He found some little tiny spots of endo tucked behind lots of tissue. I was almost passing out before I went on birth control at 16. Then after surgery at 20 my periods have been getting better and better. Before I switched doctors my gyno looked at me crazy when I asked them to do something about me possibly having endo since my mom had it. You gotta advocate for yourself and don't stop until you get a real answer.
avatar

Talie

2y

this helps a lot. Thanks for responding 💕
avatar

amandaMarie19

2y

I'm so sorry you had to go through all that. I completely agree, I ended up in urgent care nine times and the ER twice for the same exact symptoms. Everyone thought it was my appendix, but when the test came back, they didn't really know what to do with me. Some nurses and doctors thought I was faking the pain for meds until I came back from an ultrasound sobbing. This really gives me deja vu, and I'm so sorry because you must be so frustrated. Especially with how much time and money you spend in the ER. But I would partner with your OB and bring up endo. It took me six months to finally be diagnosed, and although there's no true cure beyond medication, I at least finally knew what was wrong with me. I remember feeling crazy too listening to the doctors tell me I'm fine time after time and you're not crazy. You just have to speak up and put be your own advocate with what works and what doesn't. Hell, with most doctors, endo doesn't even get brought up as an option. I was told appendix, miscarriage (wasn't pregnant) and then cancer as their theories 🙄
avatar

Talie

2y

the worst part is I made my parents come with me so I made them sit for 6 hours for nothing, too. I have anxiety so I didn't want to go alone. Also seriously, they were like "oh you aren't pregnant!" and I was like awesome, great, thanks. I know they have to rule it out but they sounded so excited. This really helped me. Thank you for commenting.
avatar

EatenByWormy

2y

I have 100% experienced the same level of pain and it was endo. My OB-GYN was mortified when she operated on me in 2018. If it is, there is FINALLY! a medication to treat it that isn’t birth control.
avatar

EatenByWormy

2y

OH and I forgot to mention- the size of the endo lesions has nothing to do with how much pain you experience. There’s no known reason for it. Some people could have serious endo w no symptoms, and some people have smaller areas but be in agony.
avatar

Talie

2y

that's a really insightful comment. I've been spending time thinking "oh, people have it worse pain-wise" . I think it's also difficult bc I do have hypochondriac tendencies but this time i KNEW something was different. This is just the beginning of my journey, I guess. Thanks for responding!
avatar

Zelda_Ziggy

2y

This pretty much happened to me last night!!!
avatar

100Percent_K

2y

Highly recommend you look into Nancy’s Nook Endometriosis Education group on FB. They have a list of vetted surgeons in each state. There are some listed for Pennsylvania already

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

feed-footer-0

Free unlimited access

to all community content

feed-footer-1

Find others who are

medically similar to you

feed-footer-2

Pose questions and join

meaningful discussions

pp-logo

Alike is a transformative platform that goes beyond just bringing together patients; it meticulously connects individuals based on multiple critical factors, such as age, gender, comorbidities, medications, diet, and more, fostering a community of knowledge, support and empathy.

appStoreBtngooglePlayBtn

© 2020-2024 Alike, Inc