Questions
Hello! I'm Amy & new here. What a warm & caring community you all seem to be! I've been dealing w/ issues (obviously) & totally new to all of this. Starting to wonder if what I'm experiencing could be endo. ? My Story is that I started heavy bleeding 2 years ago...non-stop for almost a year. After many obgyn/Dr visits, I had an ablation & a D&C. (small fibroid only) I didn't have a period for over a year. But during that time, developed IBS-type problems. Intense cramping & diarrhea. Pain lasted for 4-6 days, sometimes w/ constant lower stomach pain. Totally disrupted my life. Had a colonoscopy & diagnosed w/ ibs. Right before Christmas 2022, I started spotting again...most days. That led up to starting my periods again in February. WORST PERIOD OF MY LIFE!! Heavy, clot-filled bleeding (baseball size) and no meds took away cramping! The pressure all over was intense as well as heaviness and bladder pressure. Back pain (upper & lower) and neck & shoulder pain. All of this lasted about 7 days as well as bleeding. My periods before were 3, maybe 4 days. I'm noticing when I ovulate, I have severe ibs symptoms, nausea, dizziness, etc. Of course, I have all that with my period too. When I called my obgyn, she immediately scheduled a hysterectomy. (May 31st) OVER THE PHONE! I haven't even been seen & would honestly like to ask about endometriosis, but can't get in to see her. Any advice? Should I insist on being seen asap? Should I just wait until my pre-op visit in May and ask my questions? Any advice & insight is MUCH appreciated!
Sounds like bowel endo,some of the symptoms I have experience with my cycles too before I was told endo including on my bowel. Unfortunately the only way to confirm endo is through surgery.it’s not something u can cure but managed unfortunately if you do have it .I hope you find ur answers.
just wanted to say thank you for being here for our community members <3 -Kimberli (advocate)
I’m so sorry to hear you’re going through all of this. I definitely don’t think you should wait until you pre-op to ask questions. And I have to admit, I’m surprised to hear that your doctor would suggest a hysterectomy over the phone without ordering imaging or other tests or explaining things better. My advice would be to ask your doctor right away — either over the phone, with a video visit, or through something like MyChart messaging, if possible — why she’s suggesting this surgery and if she plans to do an exploratory laparoscopy to check for endometriosis at the same time. If she won’t answer that question ahead of time, then I’d take that as a big red flag. You should never feel pressured to get a big surgery like this if you’re not sure exactly what’s going on.
In the meantime, I would try to get a second opinion from another OB-GYN, preferably an endometriosis specialist, though i know those come with lengthy wait times. You can check Nancy’s Nook on Facebook or the iCareBetter website. I hope you find answers quickly! - Keri (patient leader)
Ladies, THANK YOU for your replies! I so appreciate it! Keri Wiginton I just sent a note to my obgyn on MyChart, per your advice. Great idea! Hoping I actually get a response. We'll see.
Natrat94 I sure hope it's not bowel endo! I definitely want answers, but hoping it's not either endo, of course. So so sorry you have to suffer with that! Thanks again, ladies. Bless you both! 🙏Amy, just wanted to chime in and welcome you to the community. I hate that you have been going through all of this, but I want you to know you are in the right place. You are not alone here and so many of us can absolutely relate. I absolutely agree with Keri, I would not wait to ask all these questions and I would maybe consider definitely a better explanation as to why pushing a hysterectomy first before looking at any other types of testing. That's a big surgery and decision to make and definitely not one a doctor should make over the phone without any other work ups!
I hope they answer your MyChart message soon! If they seem to be pushy about it, definitely try to get another opinion if you can before going through this. If of course doing this surgery isn't 100% what you want right now. Please keep us posted and do know we are here for you every step of the way!! <3 -Kimberli (advocate)
As someone who's had bowel endo, I would definitely recommend being seen. I was seen by a gastroenterologist, my gyno, I had a colonoscopy, and I had an ultrasound and an MRI. On the MRI, we could see my rectum was tethered to my uterus. I don't say that to scare you, but in order to let you know that imaging can help, and I, too, am surprised that your doctor ordered a hysterectomy without an exam or imaging. I also agree on the point to get a second opinion. I hope you are able to get some more answers! ~Katrina, Endometriosis.net Advocate
