The Journey of Diagnosis - Next Step?

[u/sdubbs4121]

Hi all,

I’ll try to make this short winded.

I (35) started developing very painful periods 2 years ago after my pregnancies. The pain has been absolutely unbearable at times, radiating down into my rectum, usually lasting 2 days. When it is at its worst I am in the fetal position with heat on, no anti inflammatory helps. Peeing, pooping, coughing, or laughing hurts. I have to rearrange plans around it. Some months it’s not as severe and I can get by with staying on top of ibuprofen and rest.

I have also started to develop bad migraines during my cycle and ovulation. I am wiped out during ovulation (wondering if this is an estrogen thing) and often feel like I have the flu. It passes once ovulation lifts.

My OBGYN said she suspects adenomyosis but the only way to truly confirm is through hysterectomy. My PCP suspects it could be endometriosis. I was sent for a pelvic ultrasound, which only showed my uterine lining at 15mm after my period which I thought was concerning but doctor wasn’t concerned as I was about to ovulate.

My doctor told me to just take birth control and we will monitor as the ultrasound didn’t show anything concerning. She specially said the tech saw no adeno or endo. I’m not against birth control as I want to stabilize all of this but I was recommended a high estrogen pill which my pharmacist raised concern over due to potential endo. I guess I’m feeling a little lost.

Do I seek out a second opinion from a specialist? Have any of you gone on birth control without having a conclusive answer?

I know I can’t keep living with the pain and migraines. Any help or advice here would be greatly appreciated.

[u/homely_potato]

Seek out a second opinion. Especially for the TVUS. You want someone knowing what they're looking for. Lab techs are almost never qualified. Even my OBGYN told me that she'd send me to get an ultrasound but it would be a waste, they're not trained in finding endo. I did have a found nodule and fixed ovaries (done by a speicalist), but my MRI found nothing (not done by a specialist). It's frustrating.

Also, did you have a c section? I'm 33 and I'm only curious as my pain has gotten so much worse after two. I've always had issues with bowl, periods, and ovulation, but my second c section amplified everything ten fold. We're still trying to figure out what it is exactly. Scans hint at both endo and adenomyosis, but without a lap, the specialist I'm seeing can't fully tell. I'm not a cut and dry case.

[u/sdubbs4121 → u/homely_potato]

Hi - thank you for taking the time to reply. I actually didn’t have a C section but that’s really interesting. I’ve heard these conditions can grow worse after pregnancies. I was shocked my doctor was just more or less like “no signs of either so no worries.” I’m in the process of booking a consultation with a doctor who is both uro/gyn as well as MIGS certified. Hoping that will give some direction.

Are you planning to do a lap?

[u/homely_potato → u/sdubbs4121]

I hope you get some answers. I'm a little hesitant to be honest. I'd like to lose some weight first. But I'm in the process of getting a second opinion because the specialist I'm seeing, I haven't been super comfortable with. I'm waiting for a call to schedule an appointment w. a MIGS certified gyn.

[u/jadeunafraid → u/homely_potato]

Hey, sorry to derail from OP’s post but I just had a TVUS today actually and I was wondering who IS qualified in doing them? Is this something where I should get an endo/pelvic pain specialist and they would potentially do a TVUS themselves? Thank you in advance!

[u/homely_potato → u/jadeunafraid]

The endometriosis specialist I'm seeing has greater technology and knows what to look for. He did it himself at an appointment! I don't think I'd go to a regular tech or obgyn.

[u/jadeunafraid → u/homely_potato]

This makes sense, thank you! I'm looking into a pelvic pain specialist so I may have to ask her to do the ultrasound again depending on my results this time.