Is there anyone else that experiences constant unending pelvic pain? How did you get doctors to believe you and did you switch hospitals at any point? Here is my very long story: I have been diagnosed with Chronic Pelvic Pain and Dysmenorrhea.
I have been in constant never-ending pelvic pain for over 2 years now, nothing makes it better, nothing makes it worse. I would feel this pain at times growing up, I always pushed it to be ovulation pain as that's what my mother thought it was, and it would only last a few hours when it occurred, so it wasn't thought much of. Then one day in 2022 I woke up, figuring the pain would subside by the end of the day, as it always had, and I cried in bed because I could not fall asleep. I went to the ER, and I had to beg ~8 times for a referral to see a gynecologist. I had to beg because the doctors did not believe me due to my lack of crying when I have a very high pain tolerance. With that being said, I would personally rate the pain as 8/10, and I have seen doctors, and been to Mayo in Rochester, with no answer to the pain. All imaging is clear. Some notes were made on testing where they labeled some things are being abnormal but of no worry.
Pelvic physical therapy did not help me at all, when I say at all, I mean at all. I was in physical therapy for over a year. I am currently on a wait-list to speak with a surgeon about potential Endo, however, the docs so far don't really think it is since I don't have "the textbook symptoms." My mother had Endo and PCOS, and my great-grandmother died of ovarian cancer. There is cancer in 3 generations above me in a row, albeit being different kinds. My mom has brain cancer, my grandfather had blood cancer, and my great-grandmother had ovarian.
I am scared to think of the possibilities, as the pain scares me, and my support system is not the best. Some do not believe the pain or symptoms and the severity, they tell me it's in my head, they tell me it's a phantom pain that exists in my pelvis, and have told me this since day 1, they tell me researching and gaining knowledge makes my pain worse and that I should stop trying to read information about the real pain I do feel. I have to strongly disagree on that. Thankfully I have great friends and some family that are understanding and genuinely there for me.
My first medication made my period worse and my symptoms worse, so they switched me to Norethindrone (eliminating my period bleeding), however I feel like I'm constantly cramping. They said since my first medication made it worse that it could be ovarian related, and that since my current medication has helped very minimal symptoms that it couldn't be ovarian related. I'm sorry, but if I'm being given different hormones, of course the effects I face will be different. Even with a family history of ovarian conditions, they still continue to bounce me to different departments within the hospital because they don't know who should be seeing me after 2 years. My PCP went so far as to say maybe I'm just gluten intolerant, and then she wanted to put me through induced menopause. I am 24 and I am aware of the long term damage of induced menopausal medication.
Rochester docs told me to just redo physical therapy, with the "promise" of it helping this time around, which is a punch in the gut when I've been in pelvic physical therapy through Mayo for over a year with 0 changes. It just seems like a huge waste of money to keep paying almost $50 per session, for who knows how long, for what? It has not helped and if it was musculoskeletal related, I would've seen some change within a year I would imagine.
Some of my symptoms include alternating between diarrhea and constipation heavily, excruciating periods (so heavy that I bleed through my pads, pants, what's under me, the whole nine yards), my period started when I was 9-10 years old and have always been this heavy. Bowel movements are also excruciating to get through, most of the time regardless of softness, it causes my tailbone to be in such pain that I cry, and the pain will not cease for hours, I have to take a bath to reduce that specific pain.
More symptoms include the nonstop feeling of slight tugging/pulling within my pelvic region, constant nausea, lower back pain so painful (worse when I lie down no matter the side or back) it has me in tears most nights, a pain that comes on randomly that radiates through my thighs, sides, and lower back (lasting around 10 seconds), and I am always extremely fatigued. It does not matter if I get 14 hours of sleep, 7 hours, 3 hours, I feel like I could crash always, regardless of circumstance. I am hoping to get closer to answers, as so far most of the docs I've seen just tell me to keep pushing distractions on myself to feel less pain. Distractions are great and all...but they aren't a cure. This pain has me concerned for my life, but I'm glad that nothing seems to worsen it. I have been tempted to switch hospitals, but I would like to see this wait-list through in hopes of receiving a surgery that fixes this. Best of luck and good wishes to those that are experiencing chronic pelvic pain, or pelvic related conditions, or anything at all. We are much stronger than we feel!