For the last 6 weeks since I got an abnormal pap smear result, I have been in and out of my gynaecologist’s office and the hospital having various tests and procedures - colposcopy, hysteroscopy, D&C, punch biopsies, large loop excision, all of which have eventually turned up that I have cervical cancer. Fortunately (?), it has been diagnosed early enough that it can be treated by hysterectomy, and I won’t need radiation. My gynaecologist also plans to conserve my ovaries so I won’t have to deal with early menopause.
I am only 36 years old and was kind of hoping to have another baby next year. I have been going through a kind of mourning process this last week, mourning the loss of a baby I will never have, a sibling my 2 year old daughter will never know. I have good days and bad days - today was a rough day. Ultimately, I think I only have myself to blame for this, since I was a heavy smoker for many years (I only quit the week before my pap smear) - that combined with HPV made it exponentially more likely for me to develop cervical cancer.
Enough of the backstory though. I am asking for general info and friendly advice on how other hysterectomy patients coped - pain, recovery, convalescence, post-hysterectomy sex life, etc. I just need a few people who have been there to reassure me that this is not the end of the world and I will pull through all this okay.
Well, it’s not my story, it’s my aunt’s story. I have an aunt who was diagnosed with early stage cervical cancer many years ago, when she was in her late 20’s (in other words, younger than you). She underwent a hysterectomy. She is now in her mid-70’s and has never had a cancer recurrence. That’s almost 50 years you know. So, what I’m saying is, although mourning the end of your childbearing potential, and understandably upset about having cancer, this treatment really can get it all and you might well live a long and healthy life after this. It’s not the end of the world, you will get better, and of course best of luck to you and your family.
I will tell you frankly, the second night after my hysterectomy was pure hell. That’s when they took me off the painkiller drip. Plan for at least six weeks of feeling pretty puny. This is the time to call in favors, especially babysitting favors. Two year olds are mobile and active enough that your daughter can and will need a lot of supervision. Many women that I’ve talked to say that it takes about six weeks to really get back on your feet, and a full year for full recovery.
However, it was worth it. I didn’t have cancer, just a lot of problems in that area which were mostly solved by having my uterus and ovaries removed. I was a few years older than you are now, and I certainly didn’t want to get pregnant again, so my reaction was basically one of relief. However, I think in your case grief is appropriate.
My sex life afterwards was different from before, but I had my ovaries removed, so I think that most of that difference was because I no longer had nearly as much estrogen floating around in my system.
Sorry for what you are going through - what an awful shock.
I don’t have any experience of the surgery you are about to have, but I did have an ovary and tube removed last year via a laparotomy (to remove a very large benign ovarian cyst). Although I imagine this is an easier operation to recover from, it still took a few weeks until I was about 75% back to normal, and another 9 months to a year to get back to almost 100%, with no pain after excerting myself. You may bounce back, but be prepared to take it easy for a while and try not to get down or frustrated.
I did wonder whether there was a possibility that, because your ovaries are being conserved, you could look into gestational surrogacy at some point in the future? I know this isn’t exactly a simple option, and it may not be possible for many reasons, but I just wanted to put it out there.
Good luck with the surgery and recovery. This just sucks for you for so many reasons and you have my sympathy
Thanks for your replies so far. I really appreciate getting some honest advice on what the recovery process will be like. Thanks BigBertha for the link too - I will have a look through there now.
If anyone has some advice on the emotional rollercoaster I am now on, I would appreciate it.
I’m a guy so my knowledge is second-hand, but you have to prepare yourself for the grieving period that follows a hysterectomy. Four or five women I know have had it after having kids (and even grandkids) and after their menopause, but their sense of loss was evident even for my low levels of empahty.
I reccomend grief counseling even before you go through it.
I’m trying to compose a condensed version that may help you. I had a hysterectomy due to ovarian cancer. I had a little chemo, no radiation.
I can’t use hormone replacement therapy due to previous breast cancer.
What I wanted to share with you is my biggest continuing issue, that I got kicked from the mother/breeder group into crone phase before I was ready. I’m 53 and I’m still not sure if I’m ready for crone stage yet. You will be able to find good support groups either on-line or through your doctor’s office or ACS, and I suggest you do so.
If you are able to use HRT you will probably have a better experience than I have. I am healthy and still alive so I am thankful, and consider myself to have had an outstanding outcome. But still, I don’t feel that old…
I’m sorry for your loss, Dottygumdrop. If you’re really set on having another child, I would look into harvesting your eggs and doing it via surrogacy. Perhaps a relative would be willing to carry the child. I volunteered for my brother but then they decided not to have another.
I second the counseling - for both you and your husband. And don’t skimp on the pain meds - that’s what they give them to you for. Good luck with the surgery.
Sympathy for your grief. There’s been some good advice and information given, here, and I hope it helps you.
I’ve heard that some hysterectomies can be done vaginally, now, and that this method has a much quicker recovery. Your doctor should be able to tell you what type will be done. I had to have the old fashioned kind and the ovaries went, too.
Even with the ovaries gone, there was no hormonally related changes that I could see. None. It was the same for my mother. I’ve heard of other women who swear they had their first hot flash in the recovery room. So it’s evidently a very individual thing.
Expect the nurse to ask you if you’ve passed gas yet. And it may feel like gravel when it comes.
Hystersisters is a message board for women having various types of hysterectomies, and they mail out cute little emails at various points in the pre and post op phases. and they have a lot of good advice from people there.
My advice?
If at all possible, get it done via davinci robot, i had almost no pain [small dose of pain killer right after they hauled my fat ass upstairs and hefted me over to my bed, and a small dose of vicodin when I got home the next day after a 75 mile drive on crappy roads.] I literally had less post op pain than my menstrual cramps gave me.
Make sure that you have someone to help out around the house for 2 weeks, and pretty much stay in bed except for bathroom visits. Put ice, drinks and snacks in a cooler by your bed, thermos of hot coffee, whatever, if nobody will be there during the day. Get up and move to the sofa, make your home there as a change of scenery. Make sure that if you have a low pain threshold, you have water and your painmeds at hand.
Make sure to get something like milk of magnesia to make #2 soft and easy, you no not want to strain, trust me.
I had mine surgically along my caesarian scar (mine was weird and dr. was being safe) from navel to hair line.
Standing up, it felt really odd. That lasted a couple days. I had morphine the night of because whatever painkiller was in my iv didn’t work. It was excruciating until the morphine started, and then I was fine. Stopped the morphine the next day and took some aspirin (or equivalent), and then was fine. Depends on your pain threshold, of course.
I had everything removed at once, as I was 51; not wanting any children (!) and was going to use an HRT patch. That made me an emotional wreck and I stopped after the second week. I had had hot flashes before the hysterectomy, so having them subsquently didn’t bother me. They were short-lived and not frequent. I also found high sugar intake increased my hot flashes.
I was off work a month and yes, took a year to really be back 100%, but, of course ymmv.
Hang in there and get assistance as needed, once you’re home. Coughing and sneezing are what scared the hell out of me, but other than that, it was the getting up out of a chair or bed, that was a challenge. Have lots of pillows for bed, if you’re having an incision, they help support the tummy.
First thing is to stop blaming yourself - my sister’s story is almost exactly the same as yours, except she hasn’t had the kids she wanted yet, and didn’t smoke. Laying blame for this is fairly useless. Things happen.
I don’t want to make it worse for you than it will be, but be prepared for it to be a fairly serious recovery, and that you will need help for a while. I haven’t had a hysterectomy, but I do have a history of doing too much too soon - try not to do that. Surgery is a big shock to your body, and it takes time to get over it.
I’m sorry that you’re having to go through this; I’ll echo that you need to stop blaming yourself, and that it is very understandable to feel grief for the pregnancies you won’t have.
Ok, Recovery Room nurse hat is now ON. This is going to sound like a no-brainer, but be prepared for quite a bit of pain when you wake up. So many of my hysterectomy patients wake up and seem surprised that they are hurting; I think the doctors just don’t prepare them for it. So don’t let it frighten you, ok? Secondly, if you have any history of motion sickness or nausea after surgery, tell the nurses before you go to the OR. They can give you anti-nausea meds before you wake up. Third, listen to the people who are telling you to arrange for some help after you get home! An active 2 year old can be exhausting on a good day; you will definitely want someone around to help you in the first couple weeks after surgery.
Thanks for the support and advice. I am currently looking into whether I might be a candidate for a radical trachelectomy, which will involve travel (probably home to Australia) since my gynae cannot offer this treatment here. It will at least enable us to possibly have a second child and put off the hysterectomy for a couple of years. I think the usual approach is, once you are done having the baby/ies, they usually book you for a hysterectomy at some stage post-caesar.
No hysterectomy here, but I popped in to mention this also. A friend of mine was diagnosed with a very rare form of cervical cancer… when she was 2 months pregnant with her fourth child. Because it was a slow-growing form, she carried the baby to pretty much full-term (36 weeks), then they did a combined c-section / hysterectomy.
A couple of years after that, her marriage broke up. She later remarried and she and her second husband have two children together via surrogacy.
If they were planning on taking your ovaris as well, I’d imagine they’d suggest trying to harvest / fertilize some eggs at that point and freezing the embryos. Since they’re leaving your ovaries, you’re not under a time crunch for that. So if you chose, you could do as my friend did. She said it was very expensive of course, and there were a number of issues with legality and the states the carrier can deliver in.
Re sex: Again quoting my friend, it apparently was NOT an issue
The hysterectomy is cancelled for the time being. I will be going home to Australia likely at the end of next week for treatment, either cold knife cone or radical trachelectomy. Thanks for the advice everyone.
Hope everything goes well with the alternative treatment plan, and that you don’t have to go through with a hysterectomy in the future. This sounds like a positive turn of events.
