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Mental Health

Has anyones mental health been
impacted by living with endometriosis?
If so how are you coping/dealing with it? (Doing a dissertation on this)

  1. Mine certainly has. I'm thankful that I've had good therapists over the years who have helped me and friends who are willing to listen and support. When I'm feeling well enough, being outside for walks helps and so does meditating. ~Katrina, Advocate

    1. Thank you so much for your reply, this is really helpful for my work

  2. Hi Abby,

    I am not sure if you still need some help with this but here are some ways my mental health has been affected:
    Before endo:
    - not being listened to/like you are imagining your pain
    - they are told to try every type of pharma contraceptive if endo is suspected. These have some terrible side effects. ie I put on stones of weight and went into depression
    - suicidal thoughts/efforts - the pain is so bad when you are trying to work and build a career. You need to take time off work and it affects promotions. You realise nobody is helping and it is not worth living when it is mostly in pain. It becomes a rational decision. Life is just not worth the suffering alone.
    - anxiety - you do not know when the pain is going to come. There are times of 2 periods a month so you dont get time to get over the exhausting prev. period. It is hard to plan anything fun as you worry you will let people down - yet again!
    - The exhaustion caused really low days and they had me try multiple different types of anti-depressants (also to try to stop the suicidal thoughts) Yet it was the pain that needing to be solved and my mental health would have been fine.
    After Diagnosis:
    - I had a fibroid in my womb and 2 specialists said this was the issue - I spent over an hour on the phone to one and insisted that as my back was so bad the prev 8 months I wanted keyhole to look for endo.
    - Ten mins before my operation my specialist came up to me outside the theatre and said "sometimes it can be all in the head and we may find nothing"
    - After hours and removal of growths from both pelvic sides, rectum, bowel and womb had a film connecting them....the specialist didnt come afterwards but another lady did to advise they were not removing my ovaries (!)
    - after surgery I was advised to go back on yet another contaceptive to try to stop it getting worse - I cannot do this due to the side effects.
    - You get told there is no cure and even after the op I am still in pain, even with all the medications I have tried. I was told the last option would be to get to the doc when it starts for a very strong injection.

    I know dissertations are difficult so let me know if there is anything else that would help 😉 Best of Luck

    1. we just wanted to say, we truly are thankful for you for sharing your experience with us. It saddens me just how much so many of us go through and deal with. Sending you big hugs warrior <3 -Kimberli (team member)

  3. hi there Abby. Yes, my mental health certainly has been. Like Katrina, I have found good therapists along the way, family, my husband and friends (and this community!) to really be helpful in getting me through. Taking walks outside to clear my head or the treadmill if I can't get outside, are also helpful. A few other things I really enjoy to help cope-

    -writing out my thoughts in a journal
    -blasting 90s music and having dance parties
    -traveling (even though it is difficult sometimes with a chronic illness, being away just always seems to make me happy and keep my mind occupied)
    -meditation, affirmations, prayer, and yoga

    Hoping these are helpful for your dissertation! Here to chat if you need anything other. Hugs <3 -Kimberli (team member)

    1. Thank you both so much for your reply, these comments are really helpful for my dissertation and hopefully the results will show that our voices need to be heard

      1. Of course! Truly, reach out if you need anything other! We are here <3 -Kimberli (team member)

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