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Hysterectomy? Is it worth it?

Hello everyone! So I've struggled with endometriosis since age 9. I got my first period at age 9. and then didn't bleed anymore but every month i experienced excruciating cramps. i didn't start bleeding again until age 11 but the cramps never went away. For years i thought this was normal. I was diagnosed with endometriosis officially at 25 but again thought nothing of it i have lived with this pain so long that ive just learned to manage with the pain and developed a ridiculously high pain tolerance. I've also experienced terrible stomach pain for the past few years and i mean absolutely horrible itll last a few days and then be gone and ive gone through GI docs and no one can ever find whats wrong. Well come to find out that can be a symptom of endo. Im 28 now with 2 biological kids and 2 amazing step daughters. I am 100% done with having kids. My doc actually suggested a hysterectomy i was both shocked and relieved. but i wanted to know do you ladies think its worth it will it help? or????

  1. This is a really good question! The decision to get a hysterectomy is such a personal one. And it affects everyone in different ways. My doctor, an endometriosis specialist, told me getting rid of my uterus would likely help with my worst period pain. But he said there's no way to know if it could make my stomach issues or other endo-related issues go away. I've decided to keep my uterus. But here are some stories from other community members that may help. Wishing you well! - Keri (team member)

    https://endometriosis.net/living/story-hysterectomy

    https://endometriosis.net/living/hysterectomy-stories

    https://endometriosis.net/clinical/hysterectomy-when

    https://endometriosis.net/living/why-hysterectomy

    https://endometriosis.net/living/my-hysterectomy-recovery

    1. Hi , Keri left you some really great words and articles. I completely second her that the decision to get a hysterectomy is a deeply personal one. I also wanted to leave this forum page for you where other endo community members have discussed the different surgeries they've had, including hysterectomies, for you to check out. Please feel free to comment there and ask them what their thoughts are/were about all of it. I hope that helps and I will be keeping you in my thoughts. We're always here for you if you ever need a little bit of support or love! 💛 Warmly, Kayleigh, Endometriosis.net team

      1. You are basically asking is it worth it to not live in constant life altering pain. Yes. You deserve to have a normal quality of life. If you have endometriosis then that is only going to get worse without treatment and you deserve to not live in pain. I can't say that enough times. You deserver to live without pain. I highly recommend getting multiple opinions on treatment options and to be sure to meet with and endo specialists. I saw over 10 doctors and many told me constant pain and bleeding was normal for a 48 year old woman and to wait for menopause. That is just awful and nto necessary. I found good doctors who cared about my quality of life and already feel 300% better than 6 months ago, but still need surgery to remove the cause fo the pain. Getting a hysterectomy is not guaranteed to stop endometriosis pain because endometriosis is defined as growing somewhere other than the uterus. If you have endo on your bowels then it will still hurt even without a uterus. It may be part of the treatment but is unlikely to fix everything if it is the only treatment. I am having endo excision next week and decided to also have a hysterectomy because I want the pain and bleeding to stop and to have as few surgeries as possible. I'm 48 so I'm not having kids. I absolutely HATE having periods but somehow it is still a little bittersweet knowing it isn't possible to have them anymore. Emotions are really weird and not rational at all! You deserve to be pain free. Make the decision for yourself that you would make for your daughters. Would you tell them to live in pain?

        1. Very well said!! No one deserves to live in pain. And sadly, like you know, it can take getting several opinions in order to find someone to actually listen to you and not just blow you off!! I am so glad you found that dr. I hope surgery goes well for you!! I asked for a hysterectomy probably four or five years ago but my dr said I was to young(I was 31 and have multiple other chronic health issue including lupus so kids was on the agenda) and might change my mind. She suggested trying an iud instead of doing my fourth excision and it has been a game changer for me. I can totally relate to it being bittersweet that having kids is off the table. It’s really hard. Please check in once you are home and doing well and let us know how your surgery went. Big hugs!

          Amber (endometriosis.net team moderator)

        2. this was very well said dear warrior. Just wanted to thank you for sharing your words and thoughts. Multiple opinion son treatment options is certainly a good idea, that's for sure. Sending you big hugs <3 -Kimberli (team member)

      2. Keri left great info to check out. And other community members have left such great thoughts as well. I just wanted to chime in, too. Hysterectomy is certainly a personal decision to make. It certainly is not a cure. But there are some who have found relief from it and some who have not found relief from it. So that is a hard question to answer on if it is worth it or will help out. Endometriosis can grow elsewhere and can always come back. Even if the uterus is removed. However, I do believe those who also have adenomyosis, could find a huge bit of relief from having their uterus removed. So there is a lot to factor in for sure. I am in the stage of deciding if I should think about getting one. I know it isn't promised to help but I feel I have exceeded every other option at this point. Whatever you decide, make sure it comes from your heart and gut feeling. Not what doctors or others are telling you to do/not do. And also know, we are here for you. So please reach out anytime you need to chat about it (or anything at all). Sending you good thoughts either way that you are able to find relief and comfort <3 -Kimberli (team member)

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