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Desperate Husband How can I help

Posted , 5 users are following.

paul31197
paul31197

Hi All,

New to the group, not sure if its a forum for men but could really do with some help, my daughter has had Endomitriosis for a number of years and has managed to get it mainly in control (other than about a week each month where she still suffers) My wife has suffered with symptoms for about 6 months now, shes recently seen the specialist and had biopsys which we are waiting for results on and have a scan in the pipeline, apparently with here being older it is a different set of problems from my daughter who started with some injections that she can take for a number of months to give here some releif and works well for her,

I am being told that for my wife (47) this is not an appropriate treatment due to potential complications (breast cancer, menapause and osteo perosis)

My wife is now in pain all month which intensifies for one week of the month, pain killer dont seem to touch it and shes getting very down and depressed. I have bought them both heat pads which does help a little but feel completely useless, we havent really had any guidance on pain relief for her, she is already gluten free as she has an intollerence which doesnt help, Im not looking for a magic solution but any tips you have would be much appreciated.

My family means the world to me and my wife is the type who always puts herself last (whe probably suffered to long before seeing the doctors) Shes tried Co-Codamol, My Naproxyn and the usual Iboprofen and Parcetamol. Ihave just joined so will have a look through all the posts in here but if there are any quick wins out there let me have them ;-)

Appreciate your help

2 likes, 25 replies

25 Replies

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  • laura-lee86160
    laura-lee86160 paul31197

    Posted

    Hello! I have had some luck with my endo going completely vegetarian. I only eat a bit of a fish. I also try to avoid caffiene, dairy products and gluten. I am awaiting surgery which will hopefully help - the Dr prescribed me visanne which is a progestogen only pill......it stops my period, however, the side effects were too nasty for me to live with, so I had to stop taking it. I would push to see a gynecologist specialist, hopefully someone who is experienced in endometriosis. My regular GP is useless but luckily she referred me to a specialist who knows what he is doing. Also, it's really great that you are being so supportive as my husband isn't - which causes a lot of stress and can make endo worse (stress). All the best!

    • paul31197
      paul31197 laura-lee86160

      Posted

      Thanks Laura, my wife is also gluten free as she is also Celiac and only has dicaf, I will mention to her about the meat thing, hopefully this will help, although on a positive note, she has had a new pill witth increased strength that she is getting some releif with but I think she can only take this one for 3 months so not a long term answer

      Thanks for the support , hope you get some relief soon

      Pau

  • paul31197
    paul31197

    Posted

    I know it breaks my heart, we need to do something we cant go on like this. I'll keep in touch

    Paul

  • emily270891
    emily270891 paul31197

    Posted

    Hi Paul,

    Sorry to hear about your wife and daughter, I am currently on my third month of the temporary menopause through three monthly injections which has left me pain free. Im having hot flashes like they are going out of fashion but the when you conisder the alternative its great. I had endo removed from three areas in Feb this year and it helped but didnt rid the pain. There is alot more pain relief out there and different painkillers work for different people. I would reccomend a few things, some may help some maybe useless.

    1. Look in the endometriosis UK charity website and find a support group (im not really one to sit and talk about my feelings but they couldnt be further from this) The relief you feel when you speak to other people who have the same symptons and issues is massive. My group is for partners and family members too and have experts talking regularly.

    2. Do not give up and continue to push the GP into sending you to an endo specialist in my case this took my partner to come with me and insist. When you are dealing with an endo specialist things are alot clearer.

    3. Every person is different and so all the side effects and issues that are there as a disclaimer dont worry about them until its neccessary. The medication i am on which is working for me worked for 1/5 in my support group. Its unfortunate but thats how it is.

    4. Meditation. I know eye roll and deep breath. Exactly what i did and said and still feel stupid saying and doing it however this week i spoke to a chronic pain specialist and for 10 minutes a day listening to a mindfulness video on youtube has a large impact on how you feel pain. It helps to stop the nerve telling the brain im in agony, if that makes any sense.

    Hope you get some real help soon

    Emily

    • paul31197
      paul31197 emily270891

      Posted

      Thanks Emily, sorry for the late reply but I just dip in an out of hear, there some really useful info in your message thanks for taking the time to note it down, I will look for a group as we are not very knowledgable on this as some of my posts will demanstrate.

      Were going to push to get back to the specialist before xmas and push for the next steps,

      My wife has had to come off the codiene completely as it was sending her dizzy which obviously doesnt sit well with her work. we have a few additional questions for the specialist but think were going to go down the injection route, she needs some relief from the pain.

      Were both in our 40s so fertility isnt an issue and I guess she wouldnt be far off the menapause anyway so it wouldnt be the end of the world, its good to here from you the the side effects havent been too bad, my daughter got the best results from the injection but because of her age could only use them to get her through her degree.

      We could do with some tips on pain meds, as I said shes not tollerating the codine and Ibrobrufen is causing her stomach problems so shes not taking them either which only really leaves paracetamol which is only enough to take the edge off. We going to discuss with the doctor

      Thanks for your info and time

      Paul

    • aitarg35939
      aitarg35939 paul31197

      Posted

      You and your wife probably already know this but I'm going to say it anyway: unless a medicine says otherwise, always either drink some milk or eat some food with every dose. This especially applies to ibuprofe and other pain meds. The food should never be a piece of any citrus fruit and there are some meds which don't work with milk.

      For some of us this solves the stomach upset that comes with ibuprofen.

    • paul31197
      paul31197 aitarg35939

      Posted

      Yes shes pretty good I think its just the volume of tablets shes taking. I think the doctor said there is something she can get to protect her stomach well check when we go next

      Thanks Paul

  • emily270891
    emily270891 paul31197

    Posted

    The best thing to do is do your research and be prepared to fight because for obvious reasons the GP Is not going to give out stronger medicines without you really persuading them its neccessary.

    There are so many that may help and have such a different effect on people. After speaking to others from the group and they have told me some of the medication they are on.

    Tramadol is a common one, to my knowledge it is strong and they will not allow you to be on it long term but it may give some relief short term.

    Naproxen Ihave used this and still do and highly recommend it but as I say remember horses for courses.

    Amitryptiline this worked great but left me asleep most of the time I was taking I just could not shake the drowsiness yet I know some that feel energised on it.

    There are so many options and maybe others attached to this thread can recommend some but you need to suggest some and make sure you do your research on them first.

    Please remember that no GP is going to give these to you without you really hammering home how it is effecting your life. The side effects are going to sound scary but each medication will affect different people in different ways.

    I cant stress how important speaking to others with the same condition because it will give you ideas and advice you wont find anywhere else. Seeking the specialist help and make sure again you stress the importance of the effects to your lifestyle.

    The best of luck with everything please do let me know if you have anymore questions, also if either your wife daughter or yourself need to talk you can always email the group I am a member of or try the endometriosis charity website talking helps more than you know.

    Emily

  • paul31197
    paul31197

    Posted

    Ok, so just an update on my wife, she had her first prostap injection last week and no has to go monthly for updates. shes been weened off her other tablets now jst down to one a day. this week has been a bit of a bumpy ride (painwise) but today she as saying she is feeling a difference and less pain, the least pain shes had for months.

    I know its only a day but were hoping its the start of the imporvement as we head towards xmas.

    Would you expect to see it starting to work this quickly or do you think it is just a coincidence? Also, if she was like to have some sort of reaction to the prostap do you think it would have hit us by now (ie within the week)

    Sorry for getting a bit excited but its been the first positive weve seen for ages,

    Paul

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