how do I continue with unbearable pain?

hi guys! i'm new to this. so a little info- i'm a 16 year old girl. I have had chronic headaches for about a year now along with endometriosis. together, I can barely move. I have tried EVERYTHING- vitamins, TENS, massage therapy, physical therapy, psychologist, ENT, allergist, neuro, chiropractor, GP, er visits, eye doctor. they cannot figure it out. I finally got a pain management appointment and he prescribed me nerve blocks & a pain patch & when I came in for my script (after waiting TWO hours, he goes "oh you're too young) i'm seriously at wits end. everyone says i'm too young & leaves me in pain. I lost who I was. I cancel plans last minute, I have done everything in my power but unlike emotional pain, you can't just distract yourself. I feel like i'm mourning the death of who I was because I know i'll never be happy & healthy. it'll never happen because no one wants to treat me. i've had x-rays, every blood test imaginable, ct scan, nothing. I can't live like this. I can't

15 Replies

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  • Hi Ashlausmi,welcome to the forum. Sorry you are suffering like this at such a young age.i was diagnosed eith endometriosis when I was only 18 so I understand it can be a very painful condition and you also have the headaches on top of it no wonder you are struggling! What treatment are you on now for the endometriosis? Who changed their mind about the nerve blocks? Where is your pain?

  • I am currently on birth control, depo, but I still have cramps everyday. They refuse to help with both. I asked about the blocks & they kept saying my age, my age. It is SO frustrating.

  • Whats the next step then with pain management people? Have you got a family to help you fight your corner?

  • Hang in there, make a plan and I know that is hard when you are in so much pain all the time. Hopefully you have support from your family and they can really help at times like this. Ask someone to keep a daily diary for you, how the pain is effecting your life and how it is stopping you studying and having a normal social life. Take it with you to GP and pain clinic as a record they can add to your notes.

    Get in touch with the Migrain Association in London they can offer really good advice on treatments and management of head pain. Let of steam and remember you are not on your own, take all the help you are offered.

    Good luck

    nutty

  • A helpful video here:

    nhs.uk/conditions/endometri...

  • Sorry to hear about your problems.

    You are going to have to find someone to chaperone you when you see the various specialists. The adult with you will have hopefully enough experience to be helpful.

    The change in the laws on vulnerable people has created a situation where many health specialists are terrified of giving you appropriate treatment because of possible repercussions.

    The adult with you will enable you to get a better response from the professionals.

    Alexander teachers can help.

    stat.org.uk/

    They will not cure the problem. They will help you develop ways of making the problem less of a problem.

    Other therapists would be masseurs and reflexologists who will help make you aware of areas of tension which can be reduced.

    hope this helps

  • Hi Ash

    Sorry to hear you are so young with these problems.

    Have you tried meditation? it changes the brainwaves you use, and in doing so, you can reach relaxation both of body and mind. It's perfectly safe. It stops all the negative thoughts which hold you back and when you are back in normal mode, it's easier to cope with the pain. There are many to choose from online, find one you like, but start with one that talks you through it. After a wee while you can use the music ones and do your own thing.

    When at home, listen to study music. This comes in all different types but again, it is designed to calm the brain and allow study. It will relax the body and mind without meditation.

    Finally there is affirmation. At a set time each day, repeat 5 times, " every cell in my body is healthy. Every cell in my body is working properly". Do every day without fail.

    Have you had your eyes checked? migraine can result from failing eyesight. Also wear sunglasses when sunny, the bright sunlight can trigger it.

    Finally, have you tried Chinese medicine? They give you a treatment specific to you, again its safe.

    All these things take time, a few weeks at least. Once you get into a daily routine using them, your body notices when you miss one. Try one at a time, till you know its working, then add the others one at a time.

  • You will find you again, someone you come accross, or something you do and it will all click into place. It's just a phase, part of chronic pain.

  • I had it too. So sorry sweetheart. I found that I couldn't take lot's of strong pain med's. I started taking Soma and it helped. I know you are so young but, you have every painful disease. Try changing doctors some are lot more compassionate than others. I had a total hysterectomy at 30. It's a miserable process. I hope this helps and you find some doctor who is willing to help. A female OBGYN maybe more considerate. Hope this helps!!! xxxx Mitzi

  • Hi mitzi, I had a hysterectomy aged 29 for endometriosis but they left my ovaries in so although I had some improvements it continued to feed on the oestrogen afterwards.Then you have all the scar tissue adhesions to deal with.I saw great improvements as I got older and I suppose my oestrogen levels started dropping. I was diagnosed aged 18.I remembet feeling the odd one oit as friends were planning babies and starting out on their lives and I was talking hysterectomys.Felt like old before my time x

  • I'm so sorry sweetheart, I had one daughter before I had any troubles. A year later I went to the ER with my first of many kidney stones, found out I was pregnant at the same time. About a month later I lost the baby, they didn't do a D&C and boy did I start having problems. It took me close to 3 years before I was told what I had. Then I tried to fight it, but it won. I had to have the scar tissue removed about 9 years later as it had pulled my colon out of place. It's a nightmare to deal with. The worse part was not knowing what was wrong and everyone thinking I'm nuts. Kind of like the fight I've had with Fibromyalgia. Hope you are feeling better now. By the looks of your picture, you are gorgeous!!! xxx Mitzi

  • Thanks Mitzi, I also managed to have one daughtet before my hysterectomy and I also saisef two stepchildren grom a young age so I was lucky to have the family life I always wished for.Thanks but its just a good pic! X

  • Hi Ashlausmi

    I'm sorry to hear of your problems,but you will be very surprised at what you can cope with no matter how much pain you are in.

    All I can suggest is to learn how to compartmentilise your mind, in that way you can seperate your pain from the rest of your body, it is not very easyto do as I have been doing this for over 30 years and still have bad days, imagine a very large box with many smaller boxes inside it, in each smaller box place a part of your personality.

    In some of the boxes are your education, childhood and in one box you must put the pain. In this way you can live and still function although this does not remove the pain it does make your life more liveable.

    Youwill still have bad days but this will give doctors the time to help you.

  • Mention nortriptyline to your doctor its given often for migraines its not a pain killer not narcotic and minor side effects. How about getting on a progestin only birth control so you don't get your period but three times a year

  • Hi ashlausmi, so sorry you are going through this, I know it must be hell. I was 17 when all my pain started too, so I can empathise, and equally, have no diagnosis even now. If you ever need to talk, please do send a message! I'm not sure how to help as I feel utter despair at times too but... the first thing is, surround yourself with people who you are close to and who care and understand (as much as they can do) about what you are going through. People who dismiss you, you do not need. Secondly, do not give up hope; I am sure that there will be some way for you to be helped even a bit, in the future, and you need to keep hope and keep fighting for that even if it's hell. And thirdly, do what you can to make yourself feel as good as possible. For me, I dance whenever I can, even though it's a fraction of the capacity I used to be able to dance it, but it takes me mind off things. So try find something, maybe crafting, painting, writing... anything, that might distract you a bit. I am so sorry, I wish I could help more. Stay strong, we're all here for you.

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