Help please

I have endo but I also have problems with my bladder I'm just wondering if anyone else suffers with pain full bladder syndrome at all?? Also I'm taking a lot of codine does anyone else take a lot of pain killers and still function?? I find that I sleep for 12/13/14 hours sometime more does anyone else?? Sorry for so many questions at once I just need someone to talk to someone that understands what it's like. X

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  • Hi there, taking codeine will make you constipated and not be able to go to the toilet properly. I would suggest that going to a chiropractor to do some soft tissue work on your bowel and stomach would be very beneficial. I suffer from bowel and bladder problems linked to my endo, this has helped. Also  use something called Oxy powder it is a natural medication to cleanse your large and small intestine and will rid out all the medications currently in your system and make you not constipated. If you are taking codeine this will constipate you as said and then will affect your bladder etc. Try also purchasing a tens machine, you can get these from eBay they are great and are good for pain relief.

  • also with endo you can also have chronic fatigue which is part of the condition, best method is to take vitamins and nutrients to try and balance your body. Go to a natural store to get these as they can assist you.

  • It might be an idea to try and get a referral to see both a urologist and your Endo specialist (at bsge centre). Explain to your gp how you're suffering and say you want further investigation.

    As for pain killers - I used to be on cocodamol or straight codeine as well my nickname for it was co-coma-mol!!! Made me very sleepy and constipated. I firstly tried NSAIDs and paracetamol - very bad idea, causes damage to tummy. Then switched to tramadol and paracetamol predominantly. You can still take doses of codeine alongside this if necessary but you don't have to take it religiously unless pain is very severe. Tramadol could be an option for you - the side effects I had were firstly I felt a bit out of it, but you get used to that with time and secondly I was itchy - you can get an antihistamine prescribed if this happens. 

    Hope that helps xx

    Ps agree with above poster re. Vitamins etc. 

    1. Try the Endo diet (see Endo resolved website via Google)

    2. Take a multivitamin - vitabiotics brand or multibionta are good 

    Chronic fatigue is def part of Endo. Ask go for lactulose or similar if you stay on the codeine. 

  • Heya Hun, 

    I can relate to how you feel don't worry. I have a blog with some useful hints and tips - I'm due to update it with tips for a laporoscopy but I'm only out of surgery the other day. 

    Check out the castor oil heat pack. I found it relieving. 

    Here if you need me,

    dvcblog.simplesite.com  

    Xxxx

  • Hi there, sorry to hear you are having such a tough time. I am an endo sufferer but also have interstatial cystitis (painful overactive bladder syndrome). I had a lap just over a week ago and it really kicked off my bladder symptoms. I was prescribed codeine but I had to stop after two days as I couldn't function. I take an antihistamine at night when my bladder is bad and it does help to reduce the symptoms (it is recommended on the ICS website) and it does help. You also need to be wary of your diet and cut out triggers such as caffeine, alcohol, tomato, citric fruits and fill up on foods that act as natural inflammatories. Do you see a urologist? I would highly recommend that you get a referral. Painful overactive bladder syndrome is a chronic disease with no cure like endo so you really need help with a specialist to get on a treatment plan. I have had interstatial cystitis for seven years now so if you have any questions will try my best to answer them for you xxx

  • I have bladder urgency and incontinence which comes and goes and seems related to my endo. For instance, I had surgery that removed adhesions and separated some of my organs, and that seemed to help. However, the surgery wasn't actually on my bladder, and the doctor wasn't able to explain why it would have helped. I don't feel like the medical world totally understands what's happening in my body.

    I experience fatigue at times and sometimes I need to sleep a lot, sometimes I don't. I deal with it by allowing myself to sleep a lot if I need to, and generally trying to eat a nutritious diet with plenty of veggies.

    Good luck to you in figuring out how to manage things :)

  • Hello. I had a laparotomy for my endometriosis  which was actually  a right side adnexectomy ( excision of the  uterine tube and ovary on my right side) because I also had a very, very large cyst and plenty of adhesions. These adhesions had also caused me pain in my bladder, and during the surgery  my doctor discovered that the adhesions had stuck together the bladder and the front side of my uterus. Thank God, my uterus and my bladder were separated, the adhesions removed, so I still have my organs. Yet, there was a great danger to loose my bladder, a danger I had not even thought of. This is the reason why I dared to post this comment (my first comment on Health Unlocked), to make you aware that bladder pain while having endo may mean a  problem of very dangerous adhesions. Why dangerous? Because I cannot imagine life without my bladder. If you ever undergo surgery to remove adhesions (the cause of the pain, I think ) I suggest signing beforehand for also keeping your bladder, not just your uterus, ovaries and uterine tubes. Furthermore, an urologist should be present during surgery. I can't even think of painkillers as an answer when I know they only alleviate the pain and don't remove the cause of the pain. The cause of my bladder pains almost cost me  my bladder - a nightmare scenario. You don't really know what's happening in your pelvis until you have a laparoscopy , which I think it is the only certain method for diagnosing endometriosis. Every person  is different and maybe you don't have lots of adhesions, but an early surgical treatment is the only answer I can suggest. When the doctor is a good doctor, even God helps. Hence, I hope you get better soon. Godspeed!

  • Hi. Thank you for your comment. I had a laparoscopy and a bladder distension done a 2 years ago and they found a spec of endo it think it's in the muscle and in the bladder 3 inflamed parts of it but they can't treat it other than something called alluir (or something like that ha ha). I'm so fed up of being on a months worth of pain meds in a week and even more fed up of the pain.  No one gets how bad it is and that its constant one or the other it both at the same time.  I just don't know how I can deal with this for the rest of my life.  

  • Hi. I am sorry that you go through such pains. I think you should keep seeking answers -- if classical medicine can't give you more than painkillers with uncomfortable side effects, try looking into the alternative medicine (phytotherapy, naturopathic medicine, homeopathy etc.). For example, while I do find relief with plants treatments, some people use homeopathy (which I do not use) and say they are way better. Who cares what they choose for  treatment as long as the pains are  relieved or even gone? (of course, treatments given by accredited naturopathic doctors). Ask such a doctor if comfrey roots local poultices can alleviate pain. Some say they can ( if done several times, not instantly- and don't heat them in the microwave).

    Don't give up! Try more treatments! Hope   you'll find something without side effects and get better soon.

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