Desperate Husband How can I help

Posted , 5 users are following.

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

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  • Posted

    Wow can I just say how sweet you are, not many husbands would bother to sign up to a forum in aid of getting their partner some help.

    I cant offer much help but I though ladies could take the progesterone only pill right up until menopause (not the combined estrogen & progesterone). I didnt think that they carry the same risk, I know the deprovera injection has a higher incidence of osteoporosis but I thought the mini pill was ok, I know Cezarette (a mini pill) is supposed to work by stopping your period altogether, i think it stops ovulation where as noriday (norethistone) (another mini pill) can either stop ovulation or changes the endometrium lining.

    The NHS website says: If you are healthy and there are no medical reasons why you should not take the progestogen-only pill, you can take it until your menopause or until you are 55.

    The mini pill is the one prescribed to people with higher risk factors like migraine, smoking, etc.

    The other option could be a mirena coil which also has progesterone in it, i personally found it caused me to much pain so didnt stick with it but others swear by it. It contains less progesterone i think than the pill.

    The other thing I would advise which i have only just learnt is that a few days prior to menses even when not in pain you should start taking a NSAID (Ibroprufen, Naproxen etc) as these stop pain by proventing prostaglandins being released, if you take them in advance then the pain in theory should never escalate to the point of being torturous, i now do this with some mixed results.

    There is also a NSAID you can get from the Dr which i was prescribed for excrutiating periods, its called Mefenamic acid, i had to give it up as i had an allergic reaction after taking it for a couple of years but i think it worked fairly well.

    Good luck

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    • Posted

      Thanks for replying Charlotte really appreciate it, my wife had a coil fitted when she was at the specialist so can only assume this was the mirena coil but if i'm honest Im not close to this, my daughter and wife tend to talk more about it. Its just things seem more painful recently and more prolonged and its difficult to know when to but in and when to leave well alone, I was thinking of making an appointment to go to the doctors together so I can support her more. Id hat to think she is going though all this when there is something were n ot doing (our doctors arent the best)

      Once we get the result of her biopsy and scan hopefully we will have a clearer path, im just hoping to get clarity on the pain meds to give her the best relief, I'll print off your suggestions and share with her tonight

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    • Posted

      Hi Paul,

      The best form of pain relief will defintely be to stop her periods, there are also surgical option like ablation where they burn off all of the lining of the inside womb and she could also have a laparoscopy which is keyhole surgery where they go in and look and whilst they are in there they burn off some of the endemtriosis which has escaped the womb and is attached to the outside of the womb and surrounding areas. It can even get into the shoulder!

      My mum had an abaltion and no longer has periods so that worked for her, I have had a laparasocpy for a huge cyst which was an endemetrioma (the endometriosis lining trapped blood on my ovary), they removed it and also unadhered some endemtriosis from my womb to my bowel. Have to say my periods are no better after and i wouldnt do the surgery again but some people have great relief after, it just depends i think on the person.

      You should defo go to the GP with her and demand to be seen by a gynae, they have some more expertise on endo.

      There is also a organisation called endometriosis UK which may be able to offer some additional help and they have a helpling which i will PM you.

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    • Posted

      Thanks Charlotte

      My daughter had the scrape it it helped her, her endo is near the bowel but it sounds like my wifes is near her ovaries, I'll get us an appointment at the doctors and get more involved,

      Thanks For your help, its an awful thing, my heart goes out to anyone who suffers from it,

      Paul

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  • Posted

    Hi Paul

    I think y'all must have a fantastic marriage and I'm very sorry for what you're all going through. Charlotte is right, your wife needs a referral to a gynecologist.

    The only suggestion I have is this: When any intractable abdominal pain materializes, go lie down on a cool or cold floor. Your wife & daughter may k k at you as if you're nuts, but it was the n st effective thing for me. You could always lie down on the floor with your wife.

    You are all in my prayers

    Aitarg,

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  • Posted

    Hi All,

    Just an update on this , my wife had her confirmation yesterday following scans and Byopsies that it is Endo in the Uterus (Nothing more sinister thanks god) shes been given different pain killers as she was taking too many cocdomol and going dizzy. Shes also been given an alternative pill in conjuncture with the coil, no real relief yet, shes working all day then fighting off sleep by 830, im feeling useless,

    Next step is some sort of injection to stop everything but apparently this has its own issues.. I guess you all know far more about this stuff than me. Just useful to be able to talk about it. Theres not many outlets to discuss with anyone as a bloke. To be honest find it difficult to talk with my wife about it even..

    Thanks For listening

     

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    • Posted

      Dear Paul

      I'm sorry for the diagnosis but glad there have been no worse complications.

      Yes, it would be very hard to talk to other men about this. But who knows, you may have just found yourself a new calling, offering support to men in the lives of women with endo. But you are most welcome.

      Sometimes it is very hard to talk about the nightmare one is living. I can't speak for your wife, but I know that that has sometimes stopped me from talking aloud about this stuff. Sometimes I'm afraid that if I say anything I'll start screaming & never stop. Maybe just hold her hand?

      You are a blessing.

      Aitarg

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    • Posted

      Thanks Aitarg,

      She is getting some relief from a new pill (contraceptive I think) that is stronger than the one she was on and its combined with the coil but If ive heard her correctly its very much a short term solution until she sees the specialist again in 2 months, I think next step is a scrape,

      Thanks for your support hope you are feeling better soon

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    • Posted

      Hey Paul! The pill may be what I was on....Visanne......if it is, the good news is that I felt a lot better within about 2 weeks. Unfortunately, the side effects were too much for me. The injection is probably "lupron" which will simulate menopause (from what I understand).....I would research that thoroughly before taking it. There's lots of information on the web, of course! All the best smile

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    • Posted

      what sort of side effects if you dont mind sharing, would be nice to know whats coming, I can look on the net at what others have experienced. Really hoping she gets a bit longer relief than 2 weeks, Lupron sounds about right as she did talk about it triggering the menopause, they were also talking about a potential hysterectamy were both mid 40s so have had our children, it just sounds like such a big thing, I assume its not such a bit procedure as it used to be
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    • Posted

      I would highly recommend that you do some research online......I did, and feel a lot more educated than I first was. My specialist is great but really rushed so doesn't have time to tell me everything. Visanne.....I started feeling better after 2 weeks, but then went off the meds. I really liked how it took away all my pain though. Side effects were: extreme lack of energy, increased hunger, acne and weight gain/bloating. I couldn't fit into my clothes and every part of me was swollen. Horrible feeling. Lupron is supposed to be worse though......do research, as some have reported losing bone density and having problems that last years. As for a hysterdectomy, also research that as there are reports of it not fully stopping endometriosis pain. Lots of women are told it is THE cure but still have pain afterwards. Right now my game plan is to try to control it through diet, I am having laproscopy to remove my fallopian tubes and hopefully endometriosis growths. I may go on  birth control after that. I would consider going back on visanne if the pain got out of control. For me, I don't want to do lupron or a hysterectomy yet.....again, knowledge is power.....lots of info on the net! smile

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    • Posted

      No problem! keep me updated! It sounds like me and your wife are in the same boat......I am curious as to how she makes out. It's really difficult to know what to do and pretty depressing when you're in pain all month. I am still relatively young and healthy, definitely wasn't expecting this! xo

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    • Posted

      Paul, not everyone gets any side effects from any given medication. With exercise and supplements/diet, even osteoporosis is reversible in someone your wife's age. I know this because I had osteoporosis bad by age 42, maybe partly as a result of my total hysterectomy at age 27 but more (I think) as a result of being in bed so much for years after an accident at 35.

      Hysterectomies: often for women who've borne children they do them vaginally, which means recovery is much easier than from the long bikini-cut abdominal incision I've got. As with any surgery, recovery is governed to some extent by age but also by one's overall health before the surgery. I wonder, though, whether it isn't easier for docs to find & remove all the spots when they're looking directly into that big incision as opposed to trying to see everything with tiny cameras from the vaginal approach.

      Another thing to consider about hysterectomies is how much is removed. It always sounds so wise & reasonable when a doc says, "let's save everything we can ,,, if we leave one ovary you'll have your own hormones ,,, blah blah blah"

      Reality IMHO is that they almost always have to go back in to remove that ovary in a few years. Ditto if they've left tubes, etc. In those few years endo can work very hard again. Or maybe it won't, but it took 27 years for my endo to come back after my total hysterectomy. Given that I've got the kind that keeps coming back, I felt l damn lucky and still thankful for that decision I made on my own at 27 and had to fight to get the docs to take everything out - and had close friends infuriated with me.

      As to diet, everyone is different. Eating or not eating meat never made a whit of difference for me.

      Pain after hysterectomies: one cannot make a sweeping statement unless one knows whether all those with continuing post-surgical pain had total hysterectomies or had literal hysterectomies so that the only thing removed was the uterus. I had some post-surgical pain which I came to view as pain from surrounding organs trying to adapt to a changed landscape. If I were doing it now, I would have acupuncture to see if that stopped the pain. In women who don't have total hysterectomies but whose ovaries, etc. get scraped & cleaned in the surgery, of course there will be pain from that cleaning. And then if endo starts up again ... More pain.

      There aren't any easy decisions here unless one belongs to a group which refuses all surgical & medical intervention. That's where counseling, individually & as a couple, might help. I'd make sure the counselor or therapist was well-versed in endo and in dealing with families making tough medical decisions.

      A counselor whose only advice is that we must never use the phrases "you never ,,," and "you always ,,," with/against our spouses may not be much help (though of course that advice often works wonders). And again, I keep hearing the faint tattoo of a possible call for you to start an in-person support group somewhere down the road.

      Your wife has been to find her path here and you have to support her. Keep your eyes & ears open in gyn offices in case there are other blokes there which see wives have gyn problems. You might find someone to share a beer with.

      Aitarg

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