advice needed please

hi all, my lil sister who is 28 has been in pain now for about 9 months and it is ruining her life, tonight i went to see her and she was talking about suicide, she was in the bath for over 2 hours,crying and said this is how she spends most of her free time

she is on painkillers and laxatives and has had some tests done at the hospital. ive spent this evening trying to find out some info as someone said she could have this. she hasnt had a laparoscopy, would this be the next step?

the pain started over a year ago and was worsened when she had some dangerous cells removed from her cervix,

the doctor sees her monthly but just gives her more pain killers and now she is worried itll become an addiction to them.

it breaks my heart to see her like this and i dont know if/how i can help her

am going to go to the dr with her tmrw and was wondering if anyone had any advice on what we should be asking him

also has anyone got any non medical remedies that could help her suffering,

thank you in advance

sonya

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21 Replies

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  • Hi Sonya - please get help for your sister -If she is talking about suicide this is an emergency and she needs treatment right away. Please call emergency Gp,out of hours or go to A and E.A and E may be best as they will then treat her pain and get some investigations done.Other options are Samaritans helpline?Is she ok to be left alone??

    Endo is the most horrendous disease to cope with and I know many get depressed -not only with the pain,but the struggle to get taken seriously,treated etc.

    There are lots posts on here with non medical helpers -type pain relief into the search box in green title bar.Things that help me - TENS machine,hot water bottles(front and back),castor oil packs.Some ladies find ice packs can help. Hot bath with Epsom salts is fabulous for cramps.Rubbing abdomen with arnica and or calendula oils is very soothing( if you can bear to touch it)

    Can your sister come on this forum?There is so much great support on here-we all hold each other up.

    Please take her seriously -she is crying out for help,but maybe is too depressed to get help herself?Can you step in and take her to hospital? Please let me know how things go.

    Sending you and bug hug - you and your sister are not alone.

  • thank you for your reply, she is with our dad at the moment and is going to the dr tmrw so i will mention it to him then, she promised me she wouldnt hurt herself but the thoughts keep coming to her and she said she wont want to live if she will have it forever.

    in the past year we have taken her to A and E at least 5 times inc boxing day, they give her more pain killers and tell her to see the gp, one even suggested she was making it up and needed psychiatric help.

    is she really gonna be like this forever? i cant bare not to see my sister laughing anymore, and watching her crying all the time is breaking my heart

    also will she struggle to have kids? im too old to have them for her now and she has always wanted them

    i will try the remedies you suggested, will stock up on stuff tmrw for her, thank you very much for your reply, have emailed her the link to this web page so hopefully she can speak to others in same situation as it will help her too, thank you again

    sonya

  • I'd recommend to also have a look for the endo diet - she may find it helpful to try that while trying to get medical help.

    Ask the GP for a referral to a gynaecologist. If the pain meds they keep giving her are not working, perhaps a referral to a pain clinic would be useful as they can review what she's on and whether it can be improved etc.

  • I had endo for 4 yrs before being diagnosed. The pain every month was awful like someone was twisting my insides round. At some points it was so bad i could only go to bed .I had pain i my pelvic area hips leg. I was tired. Worn out. I would ask to see gyno. I had all sorts of tests before I finally got a lap done. I has swab , ultra sound, blood tests just to rule out eberything else. Hope you get the help you need.

  • Also im 2 weeks post op and hopefully at the mo pain free.

    I also want kids see my consultant in 8 weeks but he said it should improve my chances. This site really helped me just knowing someone else understands xx

  • I feel for your sister. You're amazing to try to help her in this way. I would insist that she has a laparoscopy to investigate what is going on. If she is diagnosed with endo then she can try lots of things to help. I definitely think that diet and exercise make a difference - particularly diary and wheat. Exercise really helps even though you feel you can't. I try to go for a walk if in agony, sometimes I can't but if I can it helps.

    Get your sister on here and in touch with the endometriosis society - all helps.

    Be strong with the doctor - they can be too dismissive.

    Good luck

    M x

  • Hi Sonya, I have in the past felt exactly like your sister! Pain drives you to think all kinds of things but please tell her to get on this forum! It was the support from here and talking to others that pulled me out of that frame of mind! I'm still in pain everyday but am coping with it better.

    You sister can PM me if she likes but please so many people are ready to help her on here.

    Sending you love Toral xxxxx

  • You really are not alone but you need to be strong with the doctors as some can be very dismissive I would go onto the endo site print off the information and take it with you unfortunately I believe it's luck of the draw when it comes to getting a good gp who actually

    Listens..

    Good luck and keep us posted don't be fobbed off you may need to be the one to do the fighting for your sister as when you are in pain and depressed it's very easy to just take what they say. Xx

  • I had endo for over 15 years before getting a diagnosis, your sister needs to be referred to gynae and the G.P needs to listen they can fob people off a lot! The Only way to get a diagnosis for endo is a laparoscopy, best wishes to your sister I hope she gets the help she needs x

  • Hi, you are an awesome sister! I can somewhat relate to how your sister is feeling. Although, I was not suicidal I was very depressed due to the symptoms and the continuous lack of support from medical staff and family.

    If she is talking about suicide, get her help. Talk to her. Don't leave her alone. It probably would also help her to come on to this forum -- I am somewhat new myself, and I am so relieved that I have found a forum where there are other people dealing with similiar symptoms and circumstances because I don't get much support or understanding from my family (barring Dad to the most part) and friends. I still have the symptoms but it is a big help to have a support group like this site.

    Best Wishes to you and your sister.

  • Oh goodness me, this has really upset me as I know precisely how your sister feels, have been there myself. Can only echo what the ladies have said, ask her to come on here and chat to people, it really can help. The one word used to describe this illness frequently is 'isolating' and that's precisely the problem. You can't do anything to lift your mood because of the horrific pain and it feels like a neverending nightmare. People on here will help if she comes on and messages, like others your sister can message me too. It will help her feel she is not alone and that makes a lot of difference. Life seems bleak but she will get advice and help from people who have been, and are, exactly where she is now. Thank goodness your father is with her and she has you! Sending best wishes, she will get help and overcome this, all the best xx

  • Hiya, I think we are all short of a sister like you. I went through the exact same I suffered horribly with pain and had ultrasounds, blood tests, went to a and e numerous times, went round different doctors and was basically resulted that it's in my head. I turned into a miserable horrible person crying all the time, it was wearing thin with my boyfriend that I didn't know what was wrong. I would sit and think what have I got in my life to live for (although I have great family, Freinds and boyfriend a job I enjoy, house etc) many times I would go for a drive and think of just purposely crashing. I've never been a depressive person and didn't feel I could talk to anyone without looking crazy. I went to the doctor, again, broke down and almost shouted at her that I need something done and that seemed to work I was sent for lap, had it a week ago they found endo, removed it, I can't explain how much better I feel already and wonder what the hell was in my head. I'm lucky compared to many on here as to how far it had got so you must push for a lap for your sister, you won't look silly if you get demanding with the doctor as I'm pretty sure your not the first. Personally I feel they only take it serious if you complain you have been trying for children for a few years. Good luck for your sister I hope she gets sorted soon x

  • hi to you all, thank you sooooooooooooo much to each and everyone of you for your replies, help, support and kind words.

    today we took mum to the dr with us and ganged up on him and he agreed,eventually, to refer her back to the clinic to see if it could be this. he increased her pain killers as well and told her to take them every day(not just once the pain has started)

    we got her a tens machine, some heat pads, heat gel and some epsom salts....the oils suggested are a bit harder to come by so thats tmrws mission. def wanna get her to try the castor oil pack but couldnt get hold of any of that today either.

    the fact that she may have to change her diet didnt go down well as she is the fussiest eater i have ever met, but i told her carrots were all she could eat and she would have to live on them(still gotta have my fun)

    hopefully, thanks to you guys, she can feel a little relief and has now gone home to try these new things, fingers crossed

    it does strike me strange that with so many women suffering in this way that it is not more widely known and acknowledged and more research should be done to help this...some of you suffering for years and years is disgraceful

    thank you again, i cannot thank you enough.....her name is Jamie (just in case she is brave enough to come on here)

    sonya

  • Hey everyone I am Sonya sis jamie. Thanks for your input and support as I am finding life so hard right now I don't know where to go next I just want to be tested instead of one of my doc think I have it and the other not sure what it is. So thanks you as I really do need help where to go next as I can't carry on like this xx jamie xx

  • Hi Jamie-welcome to the forum.I am so very glad your wonderful sis has led you to the forum.You are not alone and there is lots of help out there.Sadly we still have to fight for it.I am in my late 40s and have had endo since 14yrs.It was only diagnosed officially on 2000 and like you and so many other ladies I was fobbed of with "normal womans pain" IBS,anxiety and then sent to a psychiatrist -which mum refused.Like you I was so very depressed at the pain and just not being taken seriously for so many years.

    Great that you have got somewhere with your GP and got better painkillers -this is the first step and life will get better. Try everything and anything to help the pain and the endo diet is also very helpful to many.Feel free to get in touch with anyone posting here.You can privately email anyone here by clicking on their user name,then when you see the profile page you click send message.

    Hang in there Jamie -you have lots of ladies on here and we will all try to help.You can talk about anything here.Sometimes we just need to share with people who understand and are going through similar pains.

    Sending you and your sister a big hug.Please let us know how you are feeling.xx

  • G'day Jamie! You are so very fortunate to have such a wonderfully kind and supportive sister who has introduced you to this forum. I know that it is hard but try to stay strong. You are not alone. Last year, I was diagnosed with endometriosis through an emergency op, and like you, I was ignored regarding my concerns as it was "every woman has her period" -- it didn't help that I also had my Mum saying this too. She thought that I was being dramatic, when in actual fact I was in sheer agony. I become very depressed from the lack of support and the pain, I began to feel as though I was being pathetic and although I did not think of suicide, I did self harm. It is such a relief to find out that it isn't all in my head. It's good that you have received some help from your doctor, and gotten better painkillers. If you're being ignored by one doctor, go find another doctor until you meet one who will actually take you seriously. Best wishes to you. = Kat=

  • Hi Jamie and welcome to our club... You will find all the advise and support here and hopefully the knowledge that you are not suffering on your own will help.

    As you will read from different posts there are lots if different things to try from pain Managment to hormone therapy however your first step should always be a lap, I advise you to insist on a referal to an endo specialist to get the process of diagnosis started.

    There is light at the end of the tunnel, after 2 years of severe pain and fatigue I had another lap end of April and feel so much better for it, I am not psni free but very much able to cope with this level if pain with the help of pain killers when needed, but I have days now when I don't require any medication which is such a relief, I also had the mirena put in same time as lap just one of the options to consider.

    I wish you all the best and hope to get pain free asap xxxx

  • Yeah It's a lot to take in and give up on all the food I love I only drink water now I have to say bye to sweets & steak lol

    I just don't know where to go next as I am so weak right now, I aren't my self and so fed up with bloody pain killers I live on them which I really don't like doing!

    I have many of times ask to have that lap but he keep putting it off and last time I went up the hospital was a waste of time they didn't use a camera or anything just look at it and said it look normal . I had cat scan outra scans and loads blood tests etc and it always come but negative.

    I been on the waiting list for months for the pain management it was last August I was ill and my pains are only getting worse.

    I know my body just wish a doctor would take me seriously and get me tested it for it as for once I final know what's up with me.

    And work could be more understand and I could have my life back and plan stuff not live like a 90 year old lady which this isn't me. Xx .

  • Hi angel

    I hope you get the help your sister needs, it's very distressing for all of you.

    I have a special poem that I give to people who are in need of some comfort and support and you both are definitely in need!

    When angels sense you need them

    And angels always do

    They come unseen from everywhere

    To help and comfort you

    They hover close beside you

    Till all your cares are gone

    Till they can see you're ready

    Once again to carry on

    Then some of them fly away

    And take their gentle touch

    To other hearts that need the love

    Of angels very much

    But one at least stays with you

    As your constant friend and guide

    For guardian angels never leave you

    They are always by your side!

    Print it out and put it where you can get most comfort from it!

    Take care and angel blessings xx

  • Doctors said if you have this it don't matter what you eat and trying to thob me off.

  • This condition does not show on scans ultrasounds or blood test usually so the fact yours have been negative does not mean you don't have it, if anything it kind of prove that you do because everything else has been ruled out.

    You must get a lap it is the only way to have endo diagnosed and treated, if you can't get anywhere with your Gp try another one failing that make an official complaint, you have a right to get the treatment you need!!!!

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