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Pain after hysterectomy….

I had a hysterectomy last July. It was not a full hysterectomy, they took everything out but my ovaries. I’m still having extreme pain every month. I’m in my thirties, and was diagnosed with severe Endo in 2020. The bleeding is gone (thank goodness) but I still have the unbearable pain. Has anyone else had extreme pain after hysterectomy? I know it’s not a cure, but my doctor and I had tried everything with no luck. Just wondering if anyone else has experienced this? I’m thinking it might be surgery time, yet again…..

  1. Hi there. We are so saddened you are still experiencing pain. I know how frustrating that is especially after a big surgery like that. But definitely a plus the bleeding is gone, I know that is a frustrating symptom as well. However, I know still feeling pain is not pleasant. I have not had a hysterectomy before, so hopefully others can chime in with their experience, but I will say from what I have read and learned from others, many do still have some pain afterwards. Like you said, because it is not a cure, there is a good chance endometriosis can be growing elsewhere, which is causing you the pain. I have seen that a lot in some of my friends who had a hysterectomy as well. I do hope you can find some answers and relief dear warrior. We are here for you and sending you all the good thoughts we possibly can. <3 -Kimberli (endometriosis.net team member)

    1. yes I had a hysterectomy back in 2004 somewhere in there he's back then they thought it was a cure and I still experience pain to this day with sex I'm even experiencing pain with an orgasm and I'm to the point that I am put off by sex I don't want it and it's been very hard on my relationship with my husband, he just doesn't understand I have been married to him for 4 years and cannot get him to understand how bad it hurts.

      1. Like I appreciate you sharing your experience. I have had a similar experience of being put off by sex and having pain with orgasm and I know how much it can negatively affect a relationship. Please know we are all here for you and do reach out if you want to vent or share further. ~Katrina, Endometriosis.net Advocate

      2. I hate that you are dealing with so much pain still. I can totally understand why you wouldn’t want to have sex. No one wants to do things that are guaranteed to cause pain. I begged for a a hyst a few years ago but I was “to young and I might change my mind!” Which I haven’t. But I have an IUD and it has helped with a good portion of the pain.

        Thank you so much for sharing this part of your story!

        Amber (endometriosis.net team moderator)

    2. @endo-warrior2020 I had my tubes and ovaries removed, so a different situation to you, but I still have pain. Not extreme, but it's there. I'm having an MRI next week to investigate, and I've been doing pelvic PT. I have experienced pain with orgasm as well and it's the most awful thing...I'm so sorry to hear you're experiencing that as well. I'm sending you good wishes for finding an answer and getting relief. ~Katrina, Endometriosis.net Advocate

      1. PT helped somewhat; I unfortunately had to stop because the office I was going to closed abruptly and now life circumstances are making it challenging to get back to it. I had a great practitioner, though, who was excellent with trying to understand and learn more about my gender (non-binary). And the exercises did help me relax some. I will likely try again in the future. ~Katrina, Endometriosis.net Advocate

      2. I am so very glad you had such a great experience! I feel like that would not always be the case. I hope you can get back in to it. I really need to look Into starting!


        Amber (endometriosis.net team moderator)

    3. Did they do excision of endometriosis or just the hysterectomy?

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