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Scared & needing support Scared & needing support

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  #1  
Unread 03-24-2002, 11:32 AM
Scared & needing support

This site was recommended to me by a nurse, so I hope you can help. Things have changed awfully fast for me in just a week.
I am nearly 42 years old, never married, no children, a virgin to boot, & never used tampons even, nor had a paps test. During 2001 & thus far in 2002, my periods suddently turned erratic after being like clockwork--everyone said, "It's menopause". On February 21, 2002, I started what I thought was a period. It would ease up & then seemed to start again, going on for about 3 weeks. Still everyone said "It's menopause". Then, on Sunday, March 17th the bleeding was very heavy (a pad every 2 hours), so Monday, I went to see my doctor. There was so much blood he was unable to see anything even after inserting the speculum (which nearly drove me off the table). So he sent me for an ultrasouind, but the ultrasound was blurry so they used a probe into my vagina & uterus. I ended up being scheduled for a D&C on Wednesday, March 20th. That morning the bleeding stopped, but the Dr. still did the D&C. After the D&C my doctor said I have numerous fibroids in the wall of my uterus & it has expanded to the size of being 4 months pregnant (now I know why my clothes weren't fitting!) & he sent in biopsies, & is recommending a hysterectomy, but first I am to meet with April 1st to learn the results of the biopsies. Furthermore, my mother probably took DES when pregnant with me (she'd had 3 miscarriages before me, her only live birth), &, in trying to find out more about DES now, I read it may cause cancer. I'm sad about this loss of childbearing ability, I'm scared about the surgery, I wonder what alternatives there might me, I'm worried about cancer, & I'm worried about the recuperation time as I have a demanding job as a juvenile & adult probation officer & my time is not my own, but is the Court's, & I care for my elderly parents too, on the farm where we live. I've read through the Bedtime Stories & that just brought up more issues--the swollen tummy, gas, how long I'd be down & off work, etc. I work under a male ogre, so how do I explain any of this? By the way, who is the King suppose to represent? I just need some words of wisdom & support right now on all of this! Thanks! Jeandre
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  #2  
Unread 03-24-2002, 11:53 AM
Scared & needing support

Jeandre,
My heart goes out to you. While I am 10 years older my story is similar. I am married but after two years of no bleeding all of a sudden I started spotting. Then it increased. I was treated with estrogen in the hopes it was just vaginal dryness. Nope. A full blown period started and has continued. I am still bleeding after 3 months but not as heavy.
It is scary. I go Apr 2nd for my hysterectomy. For you I can understand how bad you feel if you still had hopes of marriage and children. The marriage is still possible(there are many loving men out there who don't want children., my husband included) But the child bearing possibility is of course is out.

Some women try to hold out till they do go into menopause. For some the fibroid issue resolves. But for many it does not.
You really have to have a in depth discussion with your doctor. As for the cancer, we all worry about that. I had an endometrial biopsy that came back negative, but that is no 100% assurance there isn't cancer elsewhere.

The recovery time varies. We are told minimum of 6 weeks of no strenuous activity. Many of us have to go back to work within two to three weeks. Many have sick leave they can take. My nurse practitioner told me they have to give you the time off. I just laughed because i am self-employed. If I want to eat and pay bills I have to be there to earn the money.

As for your parents. Home health may have to come in and help you all, if you have no other relatives or friends that can help.

And the ogre you work for...Sic your doctor on him.

I wish I could be more help. This is a tough time. We are all scared and the prospect of recover is daunting. I know many others will respond to you. I hope they have more suggestions and helpful advice.

Here's a big for you.
  #3  
Unread 03-24-2002, 12:44 PM
Scared & needing support

Jeandre -

I don't have too many words of wisdom, but I do have a hug and words of support for you. Virginia made some excellent points, and if you do proceed to surgery, you will need to get some time off from work and help to care for your parents.

We all understand and relate to your being scared - it is very normal. And the emotions - the feeling of loss of childbearing ability, is something many many women go through as well. And having had a year of wondering if I had ovarian cancer, and now wondering if I have thyroid cancer, I can absolutely relate to your fears about that. There are SO many unknowns, and that is scary.

I would definitely suggest that you do as much reading as you can, talk to your doctor - get a second and third option if need be to explore your options. If you have family, friends, neighbors, or any other people who can give you support in this hard time (surgery or not), please reach out for it. And continue to tap into the wonderful support that exists on this board. Glad your nurse suggested it!

If you do end up having surgery, I would like to say that it was honestly not that bad - the worrying about it beforehand was worse than the reality of it. I suspect other hospitals are like mine in that they bend over backwards to ensure that you are not in pain.

I hope all works out well for you in this difficult time!
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  #4  
Unread 03-24-2002, 12:47 PM
scared

I am so sorry you are so frightened. I am 18 months out since my total vaginal hysterectomy. My bleeding was allowed to go on like that for nearly 3 years with d&c's, hormone therapy, birth control pills X4 daily, etc. etc. etc. until I finally found a wonderful female doctor who performed my surgery almost immediately. My biopsies always came back negative, so my HMO was reluctant to treat my symptoms, leaving me with a hemoglobin level of 5 by the time I got surgery, requiring 6 units of blood to be transfused. It is so sad and unfortunate that you have not had children. But, you won't be very healthy if you allow this type of bleeding to continue and won't have much quality to your life. I wish I had listened sooner. It took me a full year to recover from the anemia. Let me know if I can be of any other help to you! God bless!
  #5  
Unread 03-24-2002, 01:26 PM
Scared & needing support

Jeandre, I know it's all frightening. s!! You will be all right. I never wanted kids, but it was still weird for me to close that door. Reminding myself that I don't even know if I could have gotten pregnant anyway helps a little.

As for your ogre boss, he doesn't get to call the shots regarding your health care. I believe you have a legal right to medical leave (not sure if you have a right to paid or just unpaid), and they have to take you back afterwards. Your boss may not like it, but that's his problem.

You've certainly come to the right place. This site saved my sanity as I was figuring out what to do, and then waiting for the surgery.

Good luck to you! It's such a difficult decision; I waffled for a long time before making mine. Just remember: it's your life. It's your decision.

More s --

Melissa
  #6  
Unread 03-24-2002, 01:36 PM
Also a DES daughter!!

Dear Jeandre,

I am divorced, (Was married for 11 years), childless, due to infertility and also a DES daughter. You do not see to many mentions of DES daughter on this web site, but you will find a great deal of support. As far as DES, Diethystilbestrol, I had
many of the signs of des. My cervix was shaped abnormally and I had pap smears that came back abnormal and the infertility. I was followed by an oncologist for 2 years and thankfully no cancer. IF you do a search on Diethystilbestrol, you can find some info.

I am now 24 days post op and I am so glad that I have had my TAH/BSO. I also thought that I was starting menopause. My periods were getting longer and more frequent when they use to be 5 days long and 35-40 days apart. Then about a year ago, They started to get longer and more frequent. I keep saying to myself. It will stop, but it never did. I finally broke down and saw a new doctor since I had moved.

He first did an ultrasound and sonogram and found a poly and fibroids. Then he scheduled me for a D & C and hysteroscopy and found a mass in my uterus and removed the polyp. Next came the TAH/BSO which he found multiply fibroids, endometerious, which I was DX with 15 years ago, and aendo. I was one of the lucky ones who had very little pain. The Dr is amazed that I had so little pain. The only real pain that I had was from my back and 4 Dr, including my current ones all told me it was because of my weight. 24 days post op and I have no back pain. With all the laying around I have been doing, I should be twisted like a pretzel.

Before you have your surgery, you need to make peace with yourself as far as not being able to have children. I had 15 or more years to come to peace with that issue, so when the Hyster was recommend to me that was not an issue. It is very hard to make peace with that, but there are many children out there that would love a loving home. Review with your Dr what other options you many have.

I see that you work for the Courts, so you will most likely qualify for Family Medical Leave Act (federal law). You will be able to take up to 12 weeks off. Check with your benefit department for info on it and what your company offers.

Good luck and


Nancy
  #7  
Unread 03-24-2002, 02:02 PM
Scared & needing support

Hi, Jeandre,

Welcome to Hystersisters. I'm sorry you're having problems with fibroids and heavy bleeding. I had those symptoms, too, and I know the distress they can cause.

While you're waiting for the results of your biopsy, I'd like to invite you to visit the Hysterectomy Options and Alternatives forum, where I'm a Hostess. Assuming that those results are negative, there are other options to hysterectomy, and sometimes a hyst can be avoided. Here's a link to that forum:

http://www.hystersisters.com/vb2/for...p?s=&forumid=4

I'm always a little concerned when a doctor suggests a hysterectomy immediately, without also offering other options. I'd encourage any woman who's considering a hysterectomy to get at least two medical opinions, before choosing any surgery.

Good luck, and please do research before making any decisions. You're welcome to join us on the Options and Alternatives forum, and please let us know if we can provide information for you.

Best wishes,
Helen
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