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new w/ a decision to make new w/ a decision to make

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Unread 07-14-2004, 12:40 AM
new w/ a decision to make

Reposting mostly from what I wrote in "Introduce Yourself", so if you think you've read this before, I'm sorry for being redundant! =)

I'm still not sure if I'm going to actually be having the hysto or not, as I haven't fully made up my mind. I'm still hesitant, even though I've had pelvic pain for nearly two decades. Pain started in my lower right quadrant, and the first diagnosis was endo, hysterectomy. Well, I was 17 at the time, so I got another opinion, and I never heard the endo diagnosis again till lately. Since then, I've had a laparotomy/appendectomy, two D&Cs, a lap cholecystectomy, a cesarean w/ cystectomy and partial oopherectomy (8+cm cystadenoma in right ovary, smaller one in left), and a beautiful daughter. I've also had a splenectomy for ITP, unrelated. I hemorraged for about 4+ hours immediately after the cesarean, then again 10 days later (massive clots and a 24-week uterus), and then 8 months afterward, the pain really kicked up, along with heavier/more painful periods. I ran the round of docs again (having moved), and was passed off again and again as drug-seeking and didn't even get return phone calls from some. I landed a great doctor who proved that I actually have pain (although even he can't say for sure why) through a pain mapping procedure. Everything under the sun has been investigated, with no real answers, even down to the Lupron I'm now coming off of.

I'm coming up on my 34th birthday, and I have been given the decision to go ahead or not with a hysterectomy and bilateral salpingo-oopherectomy that has a 50-70% chance to at least "dramatically improve" my everyday pain. It does seem to be more closely linked to hormonal issues, and with the hemorraging surrounding the cesarean, we're thinking adenomyosis/microscopic endo. However, the 3mo Lupron only moderately improved the pain, so there's no "for sure". I did still have one normal period, two weeks into the Lupron, and it has been wearing off somewhat early, so maybe a stronger dose would've given a better answer. Sex was much better during the Lupron, the pain has been getting worse again in the last 3 weeks, and my belly looks like I'm about 5-6 months pregnant and still swelling (although doc didn't note it during the appt last week -- not sure it was this big then) . . . so, every day, I'm getting closer to making the decision. I'm really sick of the stupid painkillers and want to get back into my life again! It's just that I've already had two other surgeries and umpteen tests to "see if it would work", and they obviously haven't . . . and this is the hugest "try" of them all. What if it doesn't work? What if it does? What is the recovery like? Should I leave my cervix? Abdominal (since the cesarean?) or lap? Will I need someone to help me take care of my 2-1/2yo during the recovery? ack!

Thanks for any advice, calming words, or links to info. And thanks for this website! I have virtually zero support (except for DH, who's sick of hearing about it! ;-)), and this is a wonderful site. I haven't had the chance to cruise through much, but that's on my list for tomorrow! I'm going to bed now. G'nite!
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Unread 07-14-2004, 09:44 AM
new w/ a decision to make

Just because the Lupron didn't cure the pain doesn't mean a hysterectomy will be a waste of time. Trust me, Lupron did not help my pain. I am less than 4 weeks post op from TAH/BSO and feel better than I have in ages. I am already back to taking care of my kids by myself. Is your little one still in a crib? If so, now might be a good time to try a toddler bed or even just putting the mattress on her floor in her room. You won't want to lift her in and out of crib, on/off changing table, or in/out of highchair, carseat, etc. But she should be able to get herself in her highchair or carsear. Couches work wonderful for changing diapers if she's not potty trained... my 2 1/2 yr old DS isn't potty trained yet, so I know. The cervix is a personal decision, only you and your dr can decide that. Mine went along with my uterus and ovaries. I didn't want to take the chance of having to have yet another surgery to remove it later if it became problematic. Most likely since you have had a cesaerian they will opt to do your hyst abdominally... but that is up to the dr.
Feel free to PM me here anytime with questions, etc. I will be happy to talk to you and answer anything I can. I would recommend that you start stockpiling extra easy meals to prepare for yourself and your DD. I would be happy to offer some suggestions for stuff to fix ahead and freeze for later. Then all you have to do is stick it in the oven to warm up. Do you have grandparents nearby for your DD to stay with for a few days till you get on your feet a little better. Also explain to her that you have an owie tummy and she will have to be careful not to hurt mommy. My son has done a lot better than I thought he would. When he gets too rough I holler ouch and he remembers to be gentle with mommy.
I definitely understand the wanting your life back without the painkillers. I was afraid my dr would think I was a druggie for asking for pain pills. One gyn I went to acted like that. He gave me the Lupron and when it didn't help he said well it should have fixed the pain you must just be a wimp. I haven't been back to see him. I have had four kids, 2 of which were without any pain meds. I AM NOT a wimp!!! How many babies has he had without drugs, or with them for that matter! I wound up on Percocet 10 2 every 6 hrs for pain prior to my surgery. After surgery 1 every 6 was more than enough and within a week I was down to taking them only at night and taking Advil during the day. My GP prescribed my pain meds and ordered my surgery, after I explained to him how the gyn had treated me. I cherish him so much... he is a wonderful caring dr. His wife and he took care of my youngest 2 kids while I was in the hospital and for a few days after. My mom and dad took care of my other 2 for a week. Then I was back to doing it myself. Just don't lift any more than absolutely necessary.
I do not regret my surgery at all. I think you will feel so much better after it is done and over with. Think how much more energy you will have for your DD when you are not in pain or drugged out. If I can be any more help, please let me know. God bless!
Deb in KS
Unread 07-15-2004, 04:39 PM
new w/ a decision to make


First off...please do not feel alone!! We Hyster Sisters are here to help you if we can.

I am older than you. In my 40's. I had a hyst due to fibroids. Would I do it again?? In a second.

A major thing I looked at was my level of energy and my overall health w/ fibroids. I can ask you. Do you feel healthy?? When was the last time you did not experience pain?? What is your energy level??

With my hyst, I got my health and my energy back. And, no more fibroid pain and pressure, no more periods, no more b.c. And my bladder and my colon work better than they have in years.

You sound happy about having your daughter also. I have a biological DD and a step DD. They entered into my hyst decision too. Especially since I had had the miracle of childbirth.

My Dr. told me a uterus is good for two things: making a baby and a period. If you do not want either, why keep it?? My Dr. also said a uterus is like X-mas time. Why keep the box when you already have the package??

So...just some thoughts that helped me to cope.

Good Luck. The decision making can be tough. We all have been there.

P.S. I went on lupron shrink my fibroids for surgery.
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Unread 07-15-2004, 05:50 PM
new w/ a decision to make

A hysterectomy can be a life altering experience, for the good or bad. There is no predicting if you might be trading one set of problems for another. Therefore it is in your own best interest to research as much as possible, get a second or third, or however many medical opinions you need so you can be as certain as possible, in your own mind, that this is the best decision for you.

If you haven't already, please check out the great list with links to all kinds of alternatives located at the top of this forum.

There is also an awesome resource link directory you can get to by clicking here or click Resources at the top of each page. You can find almost anything relating to hysterectomies, surgery, hormones, diagnoses, books, the list goes on and on. Check it out.

Read and research as much as possible to help you, in conjunction with your DR, make the best decisions for you.

Best wishes!

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