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  #1  
Unread 04-17-2002, 06:38 AM
New and need support

hello everyone,

New to this forum and board and have read so much that is helpful, yet overwhelming. Looking for support here because none of my friends have had hyst surg before, so I need help
sorting thoughts and questions.

I am 37, soon to be 38 I !!! I am married for 20 yrs and have 3 boys (by c-section).:hair: No, they are wonderful and worth it. I have a history of menstrual problems. In my first year
of marriage I coudn't have a period, so I was giving meds to start me so I could get pregnant. I tried the pill later and all of them made me sick. So I d/c it and got pregnant with 2 and 3, in which the 3rd one, I had a tubal. I endured lots of infections, skipped periods, then heavy ones and abnormal paps in which I now have every 6 months. Displasia, to which they pinched off part of my cervix to correct that??? The older I got, the more heavy and painful my periods were. I then had those phantom periods, and then prolonged heavy periods and severe PMS.

Over the last 3 years I have endured more stress than anyone needs to come close too. Troubled marriage, health problems and issues, and I began to fall apart literally. I have allergic fungal sinusitis, no cure, but only steroids, and other meds that affect my body, plus 5 surgeries the past few years and more to come. After getting off all steroids, I started displaying signs of FMS and CFS, in which my doctor says I have now, and am treated with meds for that. Then the same ole periods became worse now than ever. I started in Feb and have never stopped!

He gave me hormones by mouth, in which I tapered some but then flooded right after, and then a hormone shot, which didn't help, then a d & c which didn't help 3 wks ago. All tests were normal. He says he didn't feel any this or that, no infection, no cancers, etc.....
He suggest the hyst and didn't go in alot of detail, just to seriously think about it, cause he knew I did NOT want this. He urged my hubby to talk me into it, stating I NEEDED it. He referred me back to my ob/gyn who I am seeing tommorrow.
Meanwhile I am bleeding to death!!! Where does all this come from since Feb!! Since the d & c and the pelvic last week, I am hurting, bachache, cramping, and heavy flo w/ tons of clotting. Not sure what they will find or why I am doing this. He didn't say much unless it was hormone imbalance. If so, can't that be corrected and me keep my parts? How do they know about the size of uterus, fibs, or any of this adenomyosis others talk about? Will they ck for anemia??? Being I am tired more so than the fibro or CFS I have, the dizzy spells. How do they know if your uterus is adhered to uterine wall? Till they get in there??? What pretesting is done prior to this hyst?? Is the question list here enough to take with me tomorrow? How will know about scar tissue?? They did say there were tons of tissue when they did my d&c, so what does that mean? Scar tissue? Any thoughts out there, going crazy here. I am so nervous but holding it together because my hubby is so upset and has nobody to talk to about his fears but me??? Is that good? I hate seeing him worry.

kaymac
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  #2  
Unread 04-17-2002, 06:51 AM
New and need support

kaymac,
Please take a good deep breath. I know it is hard, but try and calm down. This is a wonderful site with lots of wonderful support and information. I will leave all that stuff to the post ops and the pros. I am having my hysterectomy in 6 days. I've known I needed on in the back of my mind for years. Finally went through all the tests and have been dx'd with adeno and fibroids and lots of adhesions and a belly button hernia. I am having a total (tah/bso) hysterectomy.
I had a physical last week to clear me for my surgery. My primary doctor did it.. he took lots of blood and a chest xray and urine tests.... If you aren't healthy enough for the surgery, they won't let you have it until you are.... I had an MRI, a vaginal ultrasound, and lots of hormonal blood tests. some people get lap surgery which I can't have because I've had 3 c sections and a gall bladder done (the old fashion way)
hang in there, do some research and ask your gyn/surgeon lots of questions... the gals here will give you lots ideas for that...
take good care and take one day at a time....
kara
  #3  
Unread 04-17-2002, 11:02 AM
reply

Hi, you actually sent me a pm earlier that I replied to as well but I wanted to reply to your post as well. I don't know if you have any other options besides/before hysterectomy. Talk to your dr about it tomorrow. From my own experience I can tell you that I spent over the last 2 years taking several differnt kinds of hormones and birth control pills to try and regulate the bleeding all to no avail. I don't have any idea where it all comes from! I too have extremely heavy periods (there are many days during the month when I can't places because we live in a rural area and I literally can't last the drive to the Wal-Mart without bleeding thru) and lots of clots in it, even after my D&C in February. In fact the bleeding after the D&C was much worse than before it! Nothing showed up in my D&C either so the cause of my problem is unknown. However my mother and her mother both had hystrectomies as young women due to excessive bleeding even though my dr says there is no scientific evidence to support a genetic link he says he's seen a family history in his experience quite a bit. I am thankful that I have a dr who is going to help me. My ob/gyn who delivered my 3 kids and was absolutely wonderful with that and was great getting me through the eclampsia wouldn't pay attention to the fact that bleeding for 10 to 12 days twice a month, every month was a problem. He felt that if there was nothing "wrong" that could be the cause then I needed to deal with it. After several more months of problems I finally went to my family dr (a female nurse practioner actually) who told me there was absolutely no reason to live like this. She is the one who put me on the different hormones and finally recommended another ob/gyn and the D&C. So please make sure you exhaust the other possibilities to your satisfaction but when it comes right down to it you are the only person who knows how bad you feel and you need to make the decision that is right for you. As scared as I am I really feel that surgery is the best option for me. You have to feel good about it for yourself. It can't be just because the dr. or someone else feels it's right. I've not been getting a lot of support from family about the surgery. My mother is ok with it but lives far away, my mother-in-law is dead set against the surgery and keeps trying to scare me out of it, she is only now starting to come around a very little, and my husband is terrified that is going to ruin our sex life. I personally think that I feel more'in the mood' when I'm not bleeding 3/4 of the month even if my hormones are different. I want my life back so even though I'm scared, I'm not turning back. I am having abdominal hysterectomy removing both my uterus and my ovaries because I have severe problems with pms (migraines, backaches, leg aches, diarrhea, etc) that the dr said would continue most likely if my ovaries were left. He says HRT will keep the hormone levels at a constant level and that is the fluctuation in hormone levels that causes the pms stuff to happen. Going for pre-op appointment soon so I will ask LOTS more questions then. Good luck to you and let us know what happens at dr. tomorrow.
Take Care,
Kathy
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  #4  
Unread 04-17-2002, 11:46 AM
Hi Kaymac

I am sorry you have had to go through so much.

There are a number of tests than can be done to try and determine what is going on such as: ultrasound both external and internal, endometrial biopsy, pap, visual exam, blood tests. And there may be others. Those are the ones I am familiar with.

The blood test can tell if you are anemic and the doc can tell you how much Iron you should be taking. This is important as many of us develop anemia from the heavy bleeding. You would also want to build up your blood prior to any surgery if that is the case.

The other tests should give an indication of whether or not you have fibroids and their size, or cysts and their size, endometriosis or any atypical cells. There may be other things that can show up in the tests.

I had alot of the above show up in the tests. I also had things that they did not find until they were performing surgery. I also had scar tissue "adhesions" and they were removed during surgery. As everything was coming out anyway for me it didn't matter.

I had a period that started Nov 10 and did not end until my surgery on Feb 23. Boy was I glad to be done with that.

Please make sure your doctor will spend sufficient time with you to answer your questions. I would recommend just asking him to explain what you have and what procedure he is recommending and why. Sometimes it is actually best to just let them talk and listen and take notes. If you have any questions or something does not seem clear then ask it. I was lucky with my second doctor (I ditched the first one). He told me everything all up front. It was like he had memorized the HS pre-op question list. It was great that I did not have to play 20 questions with him.

I hope this helps. Good luck to you. Let us know how it goes.

  #5  
Unread 04-17-2002, 04:51 PM
New and need support

Hey girls, and thanks for replying. I guess I will find in the morning what pre tests if any he will do. My bleeding has increased so bad. The past 2 day horrible. Scary. Going thru more pads then when on a actual period that is heavy too! Gross, but I know you all understand, that it feels like a faucet running, and when I sit on potty, you would think I am peeing or having loose bowels??!! This can't be good right? I am hurting now more than I have. Both sides cramping and extreme lower mid ab is pulling bad. Make sense??

How far do you think they will schedule my surg ahead? Would this warrant one asap?

I too have had 3 c sections and so I am sitting her wondering if I will have to have the incision again, and that means longer recovery, right???

I really think I have become anemic, my headache and dizziness all weekend, then it cleared for 2 days, but coming back. Does that mean my count gets low, then builds up shortly and then goes back down? Anyone else do that?

Kathy, my bleeding became more heavy after my d&c too. I do feel as if I exhausted my options too. I tried the shots, the pills, and the d&c, then now I feel more awful than before all these. I was real anti-surg till these 5 days now, and I am so tired of this, since Feb. Not stopped for 1 day. I think my hubby is concerned about sex too. Poor guy, has forgotten how. Nothing since Feb, and he is antsy. Now maybe 3 - 6 wks more!! But my family and friends are very supportive, but not all of them agree with my choice of ob/gyn, but I am ok with that. I am sorry that your family is not pulling as much as you want. That is so important.

Karah, how did they diagnose the adeno, fibs, and adhesions? By what test or exam? that is what I am curious about.

seeshelly, thanks for your reply too. So do you think this 2nd dr who is doing my surgery will run test tomorrow too? Will he just set the time and do the surg without? Do you think he will do it soon, because of my symptoms, or will they wait and run more tests???
And health?? I think I am, but lately everything is falling apart, sinuses, allergys, the new fibromyalgia, etc.....

I'll ck back in later..........Gosh, my boss will be so worried if I have to be off 6 wks. I have only been these new doctors in our eye clinic for a month. I love them and my job, and they think I am really good, but 6 wks?? They'll learn to do it without me?? :sad:

kaymac
:eagle:
  #6  
Unread 04-17-2002, 05:12 PM
Hi

I don't know what to tell you to expect at the next appointment. It is possible they will want to go ahead and schedule surgery and do additional tests at the same time. Just hang in there a little while longer and let us know how it goes, okay?
Recovery from this surgery is definitely 6-8 weeks. In some cases, and with doctor's approval, women return to work a little sooner on a part time basis. But, please think about yourself here. Your office will survive. And you only get one chance to heal right.
Also, prepare DH that in terms of sex, there can be no penetration for 6 weeks after surgery. And then only when cleared by your doctor. Outside touching and stimulation including orgasm is usually okay though.
The good news is all of this will be behind you one of these days soon. You will be able to enjoy your DH, life, and new job without all the muss, fuss, pain, bleeding, fatigue etc.
Life is good from this side.
  #7  
Unread 04-19-2002, 06:36 PM
New and need support

As someone else said, they disgnose fibroids a couple of different ways. One mentioned was ultrasound, which was how mine were dx. I had both an internal and external ultrasounds at the same office visit. An internal one involves you flat on your back while the ultrasound probe is inserted vaginally so they can take pictures. External one is just like when you were expecting (and the pictures are about the same too, fuzzy.

Hope that helps a bit.
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