im struggling with my endrometriosis please help.

hi my names katie im 26 year old and i was diagnosed with endrometriosis and polycystic ovaries last year from a lap. i had the cysts removed and the endrometriosis burnt away 2 months later i was again in agony. ive tried everything from the implant , the combined pill, gnrh prostap injections and the coil. i have lost my job due too 6 hospital admissions within the last year and been too the doctors that much that they must be sick of seeing my face. i take 6 different painkillers a day just too stop me being bed ridden.i have also been diagnosed with depression due too this and finding it very difficult too cope at the moment. i was very lucky too carry and birth a little boy 7 years ago. but now ive been refered too and endrometrial specialist and have too have another lap due too possible spreading. after i have had my lap ive been told i have too a hysterectomy. im really scared. please could all you ladies help with coping stratgies non of my friends or family understand when iam in pain and cant move they just tell me too get on with it and ignore it. iam at my wits end. thankyou. katie :)

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  • Hi Katie, I couldn't go to bed and not reply to your appeal for help. Bless you. I'm so sorry for you. 😔 Your symptoms are worse than mine but I too have experienced the totally awful pain of endo. People do not get it. They don't understand. I try and feel compassion for them rather than anger. I can't imagine how tough it must be to raise a young son with such terrible endo. My hat goes off to you. You derserve a medal xxxxx I really hope the hysterectomy gives you relief from the pain

  • thanku so much it just means alot that i can relate too others. it can make u feel so lonely as noonee understands unless u experience the pain as its an invisible illness. i dont deseve a medal i just want the pain too be gone. i just try too get on with it i have a family too take care of. thankyou for your kind words. katie. xxxxx

  • Hey hun I'm really sorry that you're going through all this at the moment. I'm your age and have a 5 year old so I can kind of relate . As for the hysterectomy are you planning to have more children as I would seriously consider this option as it isn't a cure for endometriosis. I am shocked that your gynae have jumped to this after a laparoscopy. Especially so young.

    I was recently diagnosed and as I am trying to conceive I can't be put on the hormone therapy has this been offered to you at all?

    As for your family some members of my family don't understand either and it's hard especially with an 'invisible illness' I have been told to just get a hysterectomy and asked questions as to why I can't do things as well, I find the best way of tackling this is to educate them. Show them forums leaflets websites and tbh learn to ignore it sometimes this is a pain only you are experiencing and sometimes you need to put your foot down and put yourself first. Explain that it's just as annoying and mind baffling to you as it is to them.

    As for coping strategies I can only really give you what seem to helps for me. I try my best at the endo diet and I know my limitations although it took me a while to come to terms with and my partner helping. For example I'll do the bigger parts of housework over two days ie hoover Monday mop Tuesday or my partner will help. Try to work out when my period is and try to get as much rest as possible with a young child. Hot water bottles and tbh talking I think the greatest help is not bottling things up.

    Hope some of this helps hun x

  • hi i have tried everything and goin for another lap at preston hospital and then a hysterectomy at my local hospital.im on oramorph, zomorph, tramadol, codiene, cocodamol,ibuprofen, paracetamol, mebeverine, mitrazipine and diazepam just too get me through the day. ive had gnrh injections ,the implant, combined pill and currently have the coil and nothings worked. i want too be able too get a job and keep it because i wont be in hospital or stuck in bed in pain. as for children i would love another one but i want the pain gone more and would like too adopt in the future. thankyou so much for your advice and support it means alot too know that i can relate with others as ive felt extremley lonely up until now as no one understands what the pain feels like unless u have endo urself. thankyou again for ur support and advice kind regards katie. xxxx

  • I'm really sorry that you're going through all this at such a young age.

    How is your situation now, have you gotten better now?

    People do not get it. They don't understand.

    Good luck with you.

    (Edited by admin)

  • its getting worse. im finding it hard too even do the simplest tasks. i just want the pain gone and have tried gnrh prostap injections, implant, combined pill and currently have the coil and nothings worked. its going too be my second lap. and then im having a hysterectomy in my local hospital. thankyou for your advice and support. kind regards katie. xx

  • Hi Katie

    I am writing this while recovering from a full hysterectomy due to grade 4 endo, which I have had for 20 years. My biggest frustration over the years is not feeling listened to , being treated like "a hypo who can't cope with heavy periods" and the lack of understanding of the impact on my daily life and person relationship with my husband that this has created. My advice is believe in yourself ...you know your body better than anyone else and secondly don't be afraid to ask for a different opinion, I did this after 18 years when I heard of a specialist in the city near my home town that specialised in endometriosis and it was the best thing I have ever done ! I cried with tears of joy after my first appointment because I felt like he was the first person who understood me the relief was beyond compare! You have my full empathy people don't understand how this illness makes us feel and how we have to learn to cope with everyday , not just a few days a month. Stay strong :0)

  • ive had a second opinion and iam having another lap in preston and a hysterectomy at my local hospital. i can completley relate too people thinking im a hypo they dont understand what the is like as they have not got endrometriosis and as it is an invisible illness people do think your a hypo and its awful. thankyou so much for your support and advice it means alot. kind regards katie. xxx

  • Good luck Katie I hope everything goes well for you xx

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