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Surgery again before continuing TTC?

I have had four endometriosis surgeries in total. I just had one on December 26th. Since then I have developed the worst periods of my life and that's saying a lot as I have suffered since 14 with horrible horrible pain during my menses. Several times being unable to get off my bed and one time ending up in the E.R. I feel like my insides are turning to liquid. The only thing different with this most recent surgery is my doctor (new) decided to do a burn rather than cut. I still have little to no feeling in the area around my belly button. my entire belly was bruised horribly. Now I am back to being bent over in pain worse than I was before the surgery. I am going to start my second cycle of letrozole tomorrow. I was wondering if it's worth going in for another surgery or not. I have tried everything from a hot showers/ baths to medicines and yes medical marijuana. nothing has helped yet. I am at a complete and total loss. I don't know what to do.

  1. I am so sorry to hear you're going through this. I can't give you medical advice. But I will say that my last surgeon, who operated on me this past March, told me that if my pain continued or came back 3 months after my surgery — that's how long he told me to give myself to heal — then a second surgery within a year wouldn't be a good idea. He says that's because surgery itself causes scar tissue and other problems that can lead to pain, and if it didn't help the first time, he didn't feel confident it'd help so soon after.

    With that said, I would definitely bring up your concerns with a medical professional. You can see a different doctor to get a second opinion. I'll admit that I'm not familiar with letrozole as a treatment for period pain and/or endo. But every doctor seems to treat each patient differently. That's one of the unfortunate things about endo — there is no real consensus on the best way to treat it when pain continues after surgery.

    I'll also say that my surgeries (I've had 3) have helped ease pain with sex and exercise, but they've never helped my period pain, which is severe. My endo specialist thinks that's because I likely have adenomyosis -- it runs in my family, along with endo. And right now, the only way to treat that is with a hysterectomy, which I'm not willing to do. Has your doctor ever talked about adeno with you? If you have very serious bleeding with your period, there are medications that can lessen the bleeding and clothing. That sometimes helps with pain. Though, that's not something I've tried. Currently, I'm on a preventive pain regimen that involves ibuprofen, which is anti-inflammatory and helps slow down blood clotting . My GP has suggested I take it for the 5 days leading up to my period. So far, it has really lessened the intensity of my pain. My periods are also easier to manage.

    I'm hoping you find answers soon. Whether you decide on another surgery or not, ask your doctor to come up with a pain management plan. That's what I did with my doctor even though my last surgery did help with other issues. If your doc doesn't give you a plan that works, ask to see a pain management specialist. They have all kinds of tools to help. Keep us updated on how everything is going. In the meantime, wishing you well! - Keri ( team member)

    1. Oof, this all sounds like a lot. I'm so sorry that you are feeling worse after your last surgery, so frustrating. If you haven't had a recent check-in with your endo doc, a follow-up may give you a chance to get your questions answered and to make a plan to address your pain. If this physicians is not an endo specialist, seeing one for another opinion may be helpful for you. This section of the site has a bunch of articles on ways that our members use to deal with their endometriosis pain:
      Please know that you are not alone. Endo pain is just HARD. Please let us know how things go for you. Sending best wishes! -Audrey ( team member)

      1. I can only imagine how stressful this must be for you. I want to reference a study performed in 2019. In the study, women aged 18-40 with endometrial-like symptoms were exposed to cold and heat extremes. These women had decreased thresholds to such stimuli. They were more sensitive to extremes.

        But the more interesting part of the study found that over 50% of the women with suspected endo DID NOT HAVE IT UPON LAPAROSCOPY. Yet these women responded dramatically to stimuli and it was concluded that they were in a persistent state of pain..

        The study suggests that people with endo may not need repeated surgeries. Instead, they need their persistent pain states to be managed more effectively. I hope this sheds some light on the fact that your surgeries haven't had lasting results and that your pain may be mediated by the brain and not necessarily caused by endometrial lesions. Just some food for thought. Here is the study:

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