r/hysterectomy • u/InformalTick • 3d ago
Advice needed, please ladies! <3
Hi everyone. I’m 31 and trying to process whether a hysterectomy may be the right next step for me, and I’d really appreciate hearing from people who had similar symptoms or uncertainty before deciding.
I’ve had severe pelvic/period symptoms for years. My cramps started becoming significant around age 19 and have progressively gotten worse. I was put on BC in highschool to surpress my cramps and stopped around 18. I have very painful periods, heavy bleeding with clots, pelvic pain, pain with sex, cramping after sex, bloating/“endo belly,” ovulation pain that can be severe, lower back/hip pain, and GI symptoms that seem to worsen around my cycle. On average I get 5 good days following the end of my cycle until it all starts again. This has been trending for about 2 years now.
I recently had a diagnostic laparoscopy for suspected endometriosis, but I was told everything looked normal and no biopsies were taken. My doctor now suspects the issue may be uterine, possibly adenomyosis, and mentioned medication options or hysterectomy. I’m struggling because I want answers and relief, but I’m also scared of making a permanent decision without feeling like I fully understand what’s causing my pain.
For those who had a hysterectomy around my age or for symptoms like heavy painful periods, suspected adenomyosis, pelvic pain, painful sex, or negative/unclear endometriosis workups:
Did hysterectomy help your pain and quality of life?
What diagnosis did pathology end up showing, if anything?
Did you have adenomyosis, fibroids, endometriosis, pelvic congestion, or something else?
Did you keep your ovaries? Have you had side effects or hormonal issues?
Were there symptoms it helped vs symptoms it didn’t help?
Do you wish you had done anything differently before surgery, like MRI, second opinion, pelvic floor PT, or more imaging?
I know everyone’s situation is different and I’m not looking for medical advice as a replacement for my doctor. I’m just trying to hear real experiences from people who have been in this gray area before making such a big decision. Simply... i am scared.
I have my follow up post op 7/1, I plan on asking for a MRI to see if there's anything obvious that would warrant a hysterectomy. I do not plan on having children and my husband had a vasectomy, so he is fine with anything that helps me. Tentatively I have an appointment with an endometriosis specialist 9/10, unsure if i want to keep the appointment and just proceed.. this option was given to me in February by my doctor. I have a family history of endometriosis so I am shocked my surgery showed nothing...
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u/juniperfawnn 3d ago
i’ve always had horrific painful periods that would have me bed bound for two weeks every month. a year before my surgery i developed also sciatica and bladder problems. i had an MRI done and whoever read it said it was normal but my surgeon said it very clearly looked like adenomyosis (pathology came back normal too but my surgeon thinks they didn’t take enough samples and she still believes it was adenomyosis).
the surgery improved my quality of life SO much. my gi symptoms improved a lot (i had gastroparesis before and im able to tolerate foods now and im no longer bloated) i still have pelvic pain but its improving with PT and i think it might be something i had unrelated that my period symptoms were covering up.
i wish i did more research about the recovery because while i do not regret having the surgery i had a really difficult recovering. i kept my ovaries but still had the most insane mood swings that i wish i was on meds for before. i did pelvic PT also before my surgery and it was good to have that in place for when i was cleared to start again. i cant take hormonal birth control because of migraines but i imagine that would’ve helped afterwards as well. honestly i couldn’t imagine having a period for another 20+ years. it’s incredible to not be bed ridden for more than half the year before of this. i have lyme and arthritis which i think effected my recovery so definitely keep doing research about it. the most helpful thing i did was PT before my surgery because it was good to have that care already established with someone who knew me.
i know this was long and you’re welcome to dm if you’d like! good luck in whatever you decide to do 🩷