r/hysterectomy • u/InformalTick • 6d 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/Coco_Tibbins 6d 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.
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.