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Managing endometriosis

Hi
I recently was diagnosed but had no follow up yet. I feel a bit helpless because I find the emotional side along with the pain unbearable sometimes. I just wondered if anyone had any tips or things they might find helpful when they have a flare up. I have been prescribed co codamol which helps with pain a bit. Thanks


  1. Welcome,dealingsomethingsome
    While you are waiting for more information, there are things you can do at home to help you manage--this article describes some different things that our community members have found helpful:
    When you do see your doctor to discuss options, I'd really recommend taking a support person with you if you can. It can be so much information, and it helps to have someone with you to help you get all your questions answered, and to remember what was said.
    And until then, know that you are not alone. The community here can help support you as you move through this new time. Please keep us posted. Best wishes to you! -Audrey (endometriosis.net team)

    1. You're so right that the emotional side can be tough to handle. For me, it's almost worst than the pain. Personally, I've found a lot of benefit from all kinds of things, including counseling. I met with a behavioral health counselor who treats people who live with chronic conditions. She didn't get rid of my pain, but she helped me reframe life around endo. She also gave me homework to help me identify my most unhelpful and anxious thoughts.


      I've also worked with other counselors and taken medication given to me by a psychiatrist. Talk therapy and antidepressants have been very helpful for managing the day-to-day ups and downs.


      I also mediate (almost every day) with the headspace app, which has been a huge help for my stress. And I always have to mention exercise. I know how hard it is to get moving during a flare, but physical activity always helps my mood, even if it's just going for a 5 or 10 minute walk. I'll leave you with some links that you might find helpful. Wishing you well!

      https://endometriosis.net/living/meditation-pain


      https://endometriosis.net/living/best-worst-exercise


      https://endometriosis.net/mental-health/coping-psychotherapy



      1. Hi Keri. Firstly can I just say thank you so so much for your lovely, kind and helpful reply. It means so much that you took the time to help me and it helps to not feel so alone.
        With regards to the emotional side I have had therapy in the past but I haven’t necessarily considered cbt in relation to chronic pain. Can I just ask when you say you’ve taken medication to you mean anti depressants ?
        Also what pain medication do you find helpful if you are taking some? Just don’t find co codamol does that much.


        Also thanks so much for the links I will check them out for sure! Take care x

        1. You're very welcome! And I'm happy to share my experience.


          I've taken several different kinds of antidepressants over the years — for anxiety, depression, pre-menstrual dysphoric disorder (PMDD), nerve pain, and focus/brain fog. It can be quite the journey to find the right one because they don't work the same way for everyone. And there are also annoying side effects sometimes. With that said...


          My PMDD responded best to selective serotonin reuptake inhibitors (SSRIs) (Prozac, Zoloft). Though, that didn't help my overall mood. My nerve issues, depression, and PMDD both responded to an SNRI called duloxetine (Cymbalta).


          https://endometriosis.net/living/pmdd-treatment; https://endometriosis.net/living/antidepressants-pain


          However, I'm currently taking what's known as an atypical antidepressant. It's called bupropion (Wellbutrin). It's often prescribed for depression features like low energy or brain fog. I've been on it 6 months, and I can definitely say it helps me with things like motivation, concentration, and fatigue.


          As for pain, many endo warriors swear by their TENS unit. (Hi Jessie!) But I've never used one. My doctor prescribed me an anti-inflammatory for period pain. It's a cox-2 inhibitor called celecoxib (Celebrex). It really helps with period-specific pain. Definitely ask your doctor about it if you have bad period cramps. Otherwise, I find scheduled over-the-counter ibuprofen to be helpful. My doctor and I came up with a plan for my pre-period week. And I also have an appointment with a pain specialist this summer to go over other pain management strategies. (Yes, this summer. It's a long wait!).


          Here's a bigger overview of the other things that have helped me during my 30 years with endo: https://endometriosis.net/living/symptoms-experiences


          I hope this helps! - Keri (endometriosis.net team member)

      2. I found a heating pad helped with the pain. I had endometriomas that ruptured and I took NSAIDs and used a heating pad. I also created what I called a "serotonin playlist" for myself that included songs that stimulated my vagus nerve. For me, that feels like really nice shivers starting in the back of my head and going down my spine. I listened to my favorite tunes (when I wasn't in acute distress) and whenever I had the tingly response from the song, it went on the playlist. Now I go to that playlist whenever I'm struggling and it helps me calm down.

        I'm also a huge fan of the Insight Timer app and I seek out song bowl meditations there, because they elicit a similar calming response in me. Finally, I will watch comfort tv that helps distract me from the pain.


        Best of luck to you! ~Katrina, Endo.net Advocate

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