Ok - Starting to panic now.... Husbands View

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Hi All,

I haven't posted on here for a while, hope everyone are well.

Last time we spoke my wife was starting Prostab and HRT patches and I was panicking about side effects and whether we were doing the right thing.. A couple of years on and we are about to go through a full Hysterectomy, until now we have had a daughters wedding and a holiday to divert our attention but now the next big thing is the operation.

Shes late forties, in good health and means the world to me, I guess im hoping for some re-assurance that it should relieve the pain she is in, but also are there any "I wish someone had told me prior to the OP" stories, what can I do / get her to help. Anything we can do prior to the op? How long the recovery is likely to take. Just anything really that would make the whole thing easier and as simple as possible.

Shes having the op done laparoscopically 

I've read a lot on line but think you cant beat it from the horses mouth, (not calling anyone horses ;-) )

Really hoping this is the right decision for us.... but she seams to have been in pain with Endo forever so we need some relief

Cheers

Paul

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7 Replies

  • Posted

    Hi Paul

    The first question is whether this will be a hysterectomy, remove uterus only, or whether they'll remove more. Tho it's got another official name, women who have everything removed (uterus, cervix, ovaries, tubes) often call their surgery a "total hysterectomy." The reason for the question is that the more organs that are left behind often equals more problems. If they do the infamous "leave one ovary" trick, they'll be coming back to get it out in a few years. More surgeries = more scar tissue & adhesions = more problems down the road.

    Sadly, there are no guarantees with endo. I had a total hysterectomy at 27. After about a year of some intermittent pain, i had 26 great years. At 54, endo came back & i needed a bowel resection. That was 10 yrs ago. I'm having some problems now, might be endo, might be all the adhesions, might be my colon at the resect. Problems aren't that bad & i can't have another big surgery so I'm ignoring it.

    Other women don't have as good a result as me. My personal suspicion is that docs can't see as well with the cameras as with their eyes, especially when it comes to trying to check all the intestine for spots. All i know is that those of us who had hysterectomies back when they were only done via large abdominal cuts had better outcomes. Of course at that time they also removed spots only by cutting them off rather than burning them; many women here have a strong preference for cutting off the spots that are on organs which must remain.

    Laparoscopy makes the outer healing easier. There will still be the post-surgical discomfort of having things removed, and from all the gas they pump inside during surgery. Your wife has been thru the latter already when they did her diagnostic lap. It will be worse this time: longer surgery, more things to take out, more gas needed.

    As to the rest of recovery, all i know is that it gets a bit more difficult with each passing decade of age earned at the time of the surgery. Even when all those little cuts heal there will probably be inner discomfort for a while. The remaining organs must adjust to a new arrangement after 45 years in the original model. That passes off with time.

    One tip from my surgeon: she should wash her entire front with antibacterial soap for 3-4 days before surgery. This is the only time that kind of soap is allowed in my house.

    One thing's for sure: your love & loving presence will make it all so much easier. I wouldn't have survived that bowel resection (&infection) without Himself.

    Hope all goes well.

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  • Posted

    Hi there,

     Thanks for the info, yes shes getting the full works, I mentioned about the soap, we'll definitely be doing that. When you mentioned the pumping full of gas, Im pretty sure My wife hasnt had any procedures that this was involved to data. She has had a ct scan to identify the extent of the Endo, I think they have decided to take the whole lot out due to her being late 40s and we are definitely though having kids, 

    Was thinking of getting a cool pillow  / cool mattress top sheet,

    Think ive had my head in the sand up to this point starting to feel pretty reel.

    Shes already been on Injections to stop her ovaries working and patches for some time but still getting pain especially when the next injection is due

    Hoping this is going to be the miracle cure and the recovery isn't too difficult 

    Thanks for your help

    Paul

     

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    • Posted

      The cooling bed items are good for when the hot flashes start. Ikea sells some cooling bed pads, to take off some of the heat buildup between body & mattress. I use those, below cooling sheets & along with my cooling gel pillow, for 6-10 months a year here in Texas. If she wears any form of PJs, silk would help some. All these things will help a bit but there will still be a period of nightsweats & changing sheets in the middle of the night. Anathema to Americans from the south and west but i know many people believe that if you drink hot drinks your skin will feel cooler. Can't hurt to try IF your wife can bear the thought. Impossible to predict how long the sweats will last. I hope that you are north of the equator & summer is over or will be soon. You might try a small fan on her side of the bedroom. If you're in the States hunt that down now while you can still find some in stores.

      They use the gas in laparoscopic abdominal surgery. They pump it in so they can see & get some separation between organs. Unfortunately they can't or don't pump it all back out. It's been 14 years since my last lap procedure so i don't recall which helps & which makes it worse: staying upright or lying down. Sometimes chewing gum helps but it should have sugar rather than any sugar substitute other than monk's fruit as all the fake sugars cause gas & bloating. Mint tea might help, and it doesn't matter whether it's spearmint or peppermint. Ginger tea may help. You must ask doc/surgeon/nurse if it's okay for her to have tea or gum.

      You are a good husband, Paul. The two of you will get through this and one day you'll both laugh about the nightsweats. To some extent, the hormonal rollercoaster will be a bit like when your wife was pregnant, but probably without the pickles & ice cream cravings.

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  • Posted

    I don’t know about anything about a hysterectomy but just a month ago I had a laparoscopic cystectomy to remove a 10cm “chocolate cyst” endometrioma. I have three incision scars that measure about a half inch each. My recovery time was about two weeks. I’m only 22 though. For me the worst pain was the gas that took forever to go away. My dr told me to buy some gas x extra strength and it helped so much. He also told me to get some throat drops to help with the soreness that only lasted 3 days for me. I also was taking a stool softener everyday because constipation after surgery is extremely painful. My spouse got me a shower chair so bathing would be easier and a shower head with a hose because movement was minimal for the first week. I was also bought a pair of house slippers that had rubber soles because a fall is definitely not something a person who just had surgery wants. My dr told me the most important thing is to rest for two days max then get up and move. Even if it’s just to the mailbox some sort of movement helps the healing process. For me I struggled to go grocery shopping even a week after surgery. I was tired after a few moments so make sure you go grocery shopping. Get things that are easy to make if your wife will be home alone. I had my mother stay with me for a week but I have dogs and I WAS NOT allowed to walk them per the drs orders. Anything one sided (sweeping, mopping, vacuuming) is not allowed for a week and lifting over 5lbs was a no as well. Now as for the endometriosis....... my dr told me he couldn’t get everything. I was closed up with endometriosis all over my left ovary. This is common. Sometimes the dr has no choice but to leave some behind and that’s because in the drs opinion removing it would cause more harm then good. Some endometriosis might be left because getting it all would risk bleeding and the loss of some organs( appendix but they might just remove it if needed, parts of the bowels or intestines) having a little endo on those organs is better then having those organs removed. I went back to work after 2 weeks and was on restricted duty for another 2 weeks. Compared to the pain I was in I feel so much better. I’m only a month out from having the surgery but I feel great. Drs don’t know and can’t tell you if your decision is the right one. Drs don’t know when the pain will end when it comes to endo. I hope the best for you and your wife and I hope that this helps a little. Good luck!!
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    • Posted

      Sorry, Madison, but i would question any doc who says it's better to leave organs such as an ovary or an appendix with endo on them. For whom is it better? More fees for the person who will repeat that surgery in a couple of years?

      Paul, if this philosophy is out there then that's a conversation you & your wife should have with your medical team. Not much point in having a total hysterectomy if they'll leave a covered appendix in & refuse to remove spots off intestine, which most definitely can be done. I understand not removing a bladder, but they should clean it off as much as possible.

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    • Posted

      I’m only 22. The drs left my ovary because I want kids. It was a decision I am okay with. I’m not saying that’s what every surgeon does but mine did what was best for me. Taking out the appendix is no big deal the appendix has no function. But taking out parts of the intestine or bowels could cause the need for a colostomy bag and a changed diet. It’s up the the person having the surgery and what the surgeon recommends. My decision suited me. It’s not right for everybody. 
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  • Posted

    Thanks for all your help, We're in the UK so relying on our beloved national health service. They aren't taking the bladder and she's already had her appendix out. Reading up on it it looks like the Uterus, Fallopian tubes and Ovaries are being removed

     

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