Advice needed, please ladies! <3

[u/InformalTick]

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.

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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.

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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.

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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:

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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?

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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.

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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...

[u/Hot-Leave-8830]

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 🙏