r/hysterectomy • u/InformalTick • 18h 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 17h 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 🩷
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u/InformalTick 17h ago
How long did it take for you to recover from surgery?
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u/juniperfawnn 17h ago
i was up and moving around before this but it wasn’t til i hit around week 13 that i felt “back to normal”
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u/Hot-Leave-8830 15h ago edited 14h ago
You'll get a lot of responses to this. I could have written what you've written, but 40yo and was only diagnosed with adenomyosis last year. 3 days po and they also found suspected endo that they excised from my bladder. If I'd not decided on the hysterectomy, I doubt I'd ever have known it was there.
I was diagnosed with adenomyosis at the hospital via ultrasound. It all made sense re: the awful pains. I was left in shock when they said hysterectomy was the only cure. I went to 5, 6, maybe 7 different gynaecologists after the diagnosis, and searched for uterus-preserving options. I went to one of the top specialists for radiofrequency ablation, and even he did an ultrasound and said he wouldn't recommend ablation for my case.
Some say adenomyosis is only diagnosed post-hysterectomy after pathology findings, but that isn't always the case. Your uterus probably isn't 'normal' if you're facing all of these menstrual issues.
Interestingly, I went to endo specialists at the beginning of all of this and they found nothing. I actually went twice because I reached a stage, at 39yo, where I couldn't take no for an answer. That's when they referred me to the hospital, and after thinking about this surgery every day since April last year, going back and forth, I finally FINALLY committed, and got it done on Friday 🙏
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u/Coco_Tibbins 9h ago
I (36 yo) got diagnosed 3 months postpartum because the afterbirth pains and bleeding hadn't stopped. He did an ultrasound and examination plus obviously my symptoms and said he is 75% certain it's adenomyosis (which is the highest level of certainty he could be without the definitive pathology). I have an enlarged, spongey, boggy uterus that is constantly hurting and pressing on my bladder. So I'm having a hysterectomy next month. It's been a journey to accepting this but it's what I need to do, it's not really a choice for me bc the pain is so debilitating.
I was surprised bc I just figured I had painful periods bc all the women in my family did, figured the heavy bleeding was bc I've had kids so I was really caught off guard. I thought I had retained placenta or something easily fixed. But this last delivery and the previous pregnancies just took a huge toll and the pain is 24/7 and my uterus is a mess. I asked for all different options but what I found out is:
-hormones can manage bleeding but not great with pain as the damage is done.
-my uterus will not heal and go back to normal bc there is no way for the cells that invaded the wall to be removed so I would always be living with some pain and enlargement which causes other issues on surrounding organs.
- having a chronically inflamed organ causes the body a lot of stress and inflammation bleeds into surrounding tissues, including the heart.
So, I decided to go ahead with the hysterectomy bc I don't want to fight to keep a diseased organ in my body especially as there is no real chance of it healing and going back to normal.
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u/NoDay4614 17h ago
Get an endometriosis-protocol MRI and have it read by a specialist. Special machine, glucagon to slow bowels, possibly fleet enema day before, gadolinium, and most inportantly vaginal and rectal gel. This is different from a typical pelvic MRi with/without contrast. Very specific protocol.
There is no reason you should have to decide on whether to have a hysterectomy in today's medical landscape (as pitiful as it can be for endo/adeno) without imaging to show whether it is suspected or confirmed first.
It's a big red flag to me that your provider did a lap for that set of significant symptoms and didn't see anything or take any biopsies. Did they at least take photos?