Dealing with the fear of endo

I feel so frustrated because not only has endo robbed me of my physical well-being, it is affecting me so much mentally too. I have only around 1 good week a month. But I do have a few good hours here and there. The problem is that I am always so worried about the pain coming back, which it inevitably does. I cannot enjoy the few good hours I get because I am analysing every twinge that I have, becoming hypersensitive to every minor cramping sensation, expecting the pain to start any minute and I just keep waiting for the pain to arrive. Then I take painkillers and suffer through a few killing hours, and when the pain subsides somewhat, I start worrying again about the pain returning and the timing of my next painkiller. I feel like I am driving myself insane....yet I cannot get over this fear of pain. I don't go out anywhere even when I am feeling relatively ok because of it, I don't have a social life, I don't have a life..period. Does anybody have any strategies to deal with this fear?

25 Replies

  • I have always suffered from panic and it's a horrible feeling. Maybe you could try and make yourself go out next time something comes up, especially if it is during a week where you are feeling better than normal, then if you go out and are fine it will make you more confident to try going out again. Once you are out and enjoying yourself it should help you take your mind off worrying about pain. Or you could start by inviting friends round your house then at least you know if you do end up in any pain you will be at home.

    You could also look up relaxation techniques which might help keep you calmer in general and you can also use them when you are feeling worried and anxious.

  • Thank you so much, these are very helpful ideas. I think I should start by inviting a friend or two home, I am definitely not brave enough to venture outside right now. And I will look into relaxation techniques, that's a good idea.

  • Poorni - I'm in the same situation as you. I'm also drenched with guilt - my incredibly supportive and loving partner is a god-send - but I do wish we could just be a normal couple in the first year of being in love!

    I am listed for surgery - but have no date yet - I have just quit my job because of the pain. I need to adjust my life to fit around the symptoms and it's all feeling terribly unfair!

    that said- I have an amazing surgeon - the delay in getting the surgery is because she's so good and in such demand - and I'm in central london. She has enrolled me in a pain management study that involves meditating for 10 minutes everyday. When i can nail myself down to do this is helps immeasurably! I would look at what you can find in terms of free meditations on you tube and via apps on your phone. Headspace is a great teaching app and has been a great help to me.

    Yoga - if you can move at all is also very helpful. Look up yoga for endometriosis on you tube too - 10/15 mins in a quiet place with some basic positioning of your body puts you back in touch with it - instead of fighting it you become a collaborator in getting it better!

    Best of luck! Lou.

  • Thank you so much. I totally hear you about the guilt. I was made redundant from my job because I was taking too many days off. I freelance when I can but I feel so guilty because I am neither contributing much financially nor physically to the household. My husband has a decent job but I hate feeling so useless. On top of it, I am in India where there is absolutely no support from the government either in terms of healthcare or benefits.

    Thank you for the suggestions, they are very helpful. I did look into relaxation techniques as suggested by aimez and I downloaded an iphone app for it. I will also look into free meditation apps, I am downloading headspace as I type this. I have considered yoga but I am so scared that all the twisting and bending will make the pain worse :( I somehow need to get over this fear.

    I hope surgery works for you and you are able to get back to a normal life. Not having a date can be frustrating but please do take solace in the fact that you have a good healthcare system and there is light at the end of the tunnel. All the very best to you too....

  • I have found (gentle) yoga to be helpful. You can start slowly and build up to more intense twists.

  • Thank you, I am looking at youtube today to see if I can find some gentle exercises not lasting more than 5-10 minutes. I don't think I can manage more than that right now. I will give it a try.

  • I'm the same with pain and suffering with a suspected hernia and also ovarian remnant and bowel adhesions, every pain I'm thinking my bowel is obstructing etc

    I'm sorry you have similar thoughts it's such a horrible disease, 23 years I've suffered and thought after my hysterectomy i would be cured ! Xx

  • I am so sorry you are going through this :( I am going to try meditation and relaxation techniques like others suggested, maybe you could also try them if you haven't already. I hope you manage to find some relief somehow, life with constant pain is such a struggle.

  • I have tried meditation but didn't last long with it Perhaps I should try again ! I hope it works for you xx

  • Hi are you being seen at a bsge specialist centre, ???

  • Sorry, was this meant for me? I am not in uk, i just joined the forum hoping for some support and interaction with women who are in the same boat. So the answer is no, i am not being seen at a bsge speciality centre :(

  • Ask your doc to be referred to a pain management team

  • Thank you, i've visited a pain specialist twice in the past and it didn't help. I am not in uk and have to pay for everything myself, and its so expensive. But i might just give it one last try.

  • I have anxiety and fear issues because of trauma, I also get panic attacks everyonce in a while.

    My school counsellor is new age, she introduced me to crystals and meditation and I find that a lot of crystals help me to stay calm. I wear some as jewlery and if I'm stressed I'll roll one in my hands or play with the necklace. A crystal for pain, and stress which the Vikings used for teething is amber, I find it helps if I put it on my abdomen or forehead, if your intrested I can give you a list of the different crystals I have.

    Meditation helps too, I find when I'm in a lot of pain all I have to do is close my eyes and listen to a guided meditation, it keeps me calm and takes my mind off the pain, the trick is to make your mind go completely blank (you'll have weird thoughts the first time).

    I also play guitar and sing to help with stress, if your intrested in playing an instrument and don't want to spend that much look at a music store for used insturnments or classifieds.

    I also make essential oil slaves, lotions, and creams for pain relief, headaces, stress, allergies, and colds, here's a recipe that I love:

    1 coffee filter


    Chamomile tea

    Chilli powder




    Dried lavender

    10 drops of each: Peppermint, lavender, eucalyptus essential oil

    2 oils such as coconut and olive oil

    1. In the coffee filter place a tbs of cinnamon, a sprinkle of pepper, a sprinkle of chilli powder, and a tsp of nutmeg, open the chamomile tea bag and drop all contents in the filter. Fold the filter and staple.

    2.In a small saucepan pour in 1 1/2 cups of oil and bring to a light boil, once boiled put in the coffee filter sand turn to meduim low heat and wait 30 minutes.

    3. Once the 30 minutes are up apply pressure to the filter and stir it around then take it out.

    4. Add dried lavender and 1-2 tbs of beeswax, wait for the beeswax to melt and stir

    5. Once melted take off heat and let it cool down to the point where it starts to develop a slight residue on top (like jello) and stir in the essential oils.

    6. Pour or scoop into containers.

    Best wishes xx

  • Wow !! Thats a lot of very useful and very interesting info. Thank you so so much, i am going to try each and everything. I am going to definetely make the pain salve today, it sounds awesome. I hope it can be applied on the abdomen? I have tried rose quartz in the past, i don't know about any other stones. I will look around to see if i can find amber where i live. I would be very interested to know more about this. I already started learning about meditation, i downloaded headspace and i am going to start today. I really feel so grateful for all the suggestions, and to talk to people who understand what i am feeling. Thank you for this, i appreciate it so much.

  • The salve can be rubbed everywhere.

  • I'm going to take a picture of my stones and label the.

  • That would be awesome. Please do share if you find the time, i am sure others will be able to benefit from it too. I think most endo women are ready to try anything and everything.

  • Here's a link

  • Wow, you are amazing, thank you and i love you :)

  • Your welcome, aww thanks:)

  • Hannah, a quick question. Should the amber stone be smooth and honey colored or rough, uncut and yellowish? I am finding different options when i look for it and all of them say "healing stone". Thanks in advance, i hope you continue to heal and find relief from your panic attacks soon.

  • It actually depends on what your more drawn too, the stone chooses the person (kinda like Harry Potter and wands). Also if you can go somewhere to look at them feel a set and see which ones the coldest.

    Healing stones are any kind of stone or crystal, it's just what your more drawn too, is the one you need most.

    However if it says tumblestones those are the smooth ones, if you want something to roll in your hand I reccomemd that.

  • Thank you, thats very interesting. I was planning to order it off the internet as i hardly go out nowadays due to pain, i guess i will go with the smooth ones for now. I am so excited to try all this, makes me feel more hopeful :)

    P.S - i love harry potter, i think i've read the books a zillion times.

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