Serious second thoughts... a letter I faxed to my gyno...

Hi everyone,

So I haven't stopped thinking about my decision (or increasingly lack thereof) in literally one week. Its all I think about, night and day. I have been reading like a madwoman, trying to weigh it all, the good stories, the horror stories... I am leaning right now towards asking for diagnostic lapascopy and insertion of a Mirena IUD. If this whole thing is endo it is different than fibroids or adeno and is there a cyst on my ovary or not? I kept getting conflicting reports from ultrasounds about both fibroids and cysts.

Should I get further diagnosis and try to deal with whatever comes out of that? And then go for the hyst if it doesn't improve by the fall? You'll see what I mean when you read the letter to the gyno... I haven't had a laparascopy in seven years when they saw nothing.

My symptoms are insanely heavy bleeding but very regular and lasting 8 or so days of the month, and resulting anemia, debilitating sharp cramps on the lower right side of my abdomen for the pre-period (I take percoset for it and NSAIDS), pain that can shoot from that place right down to the back of my ankle, and near constant discomfort on the right side of my vagina, but not on the inside, not in the vagina itself. On the other side.

I just don't want to have my uterus removed and then find out that it isn't in my uterus and I could have had endo or fibroids excised. On the other hand, my periods have been wretched my whole life.

I am really resisting hysterectomy at this point, and I really need to let my gyno know by Tuesday so she can adjust things from her end.

Thanks so much, I'm really losing it!


Dear ____,

Your receptionist suggested that you call me instead of me coming in with questions , so again to save time I thought I’d write everything up.

So, I guess the bottom line is that I’m feeling unsure about a hysterectomy. I thought I was 100%, but the past few days I had been in a big black hole of depression about it. I’m sure that second-guessing is often normal. Though I am pretty sure I don’t want to have another child, I guess the nagging thought of ‘what if’ is haunting me. Can you imagine that someone as tortured by her uterus as I am wants anything to do with it?

On the other hand, I have experienced such debilitating periods that I really have to address this. I have some lingering concerns about my last diagnostic procedure being about 7 years ago, and what I am basing my decision on today largely rests on the fact that ‘nothing’ was seen and so adenomyosis was one doctor’s guess. I am not really grasping at straws - i’m pretty sure that that is probably what is going on. But I am concerned that maybe it is endometriosis that was missed back then, and I’d hate to lose my uterus and find out that it wasn’t necessary.

I wonder about one thing I didn’t try but that was on the table as a possible treatment, which is the Mirena IUD. After reading up on it and seeing how many women were negatively affected by it, and after giving continuous birth control a couple of tries without success, I figured hormones probably wouldn’t make the situation better. Do you have any experience with woman having adenomyosis and trying this therapy? Do you think its worth a shot? Is there any other possible thing I may have missed before hysterectomy (barring (Gn-RH) agonists that throw me into premature menopause, as this is really not desirable and as I understand, doesn’t have a long-term benefit anyway)? I just really want to make sure that I am making the right decision. Some women probably don’t think twice about it, I know… but I am.

About the cervix, I am still leaning towards keeping it – was the biopsy ok?

Will other questions I have about the ins and outs of the procedure itself be answered at the pre-op appointment? If so, I’ll wait till then. Basically, I want to know how long the stay will be, if I have to do ‘bowel prep’, and stuff like that.

Thank you for your patience with me!

enoughalready,
I am so sorry you are going through such a hard time right now. Deciding to have a hysterectomy is not an easy decision for anyone.
In the days prior to my LSH I kept telling my DH that I didn't want to do it. He gave the same reply every time "what is the alternative". And then we would discuss how at this point there really wasn't a better option for me. (I had large fibroids and less symptoms than you have. But my fibroids were growing and my chances of having the less invasive LSh were rapidly dwindling. ) The waffling is normal.
I think your doctor can help you make your decision. She won't be able to give you absolutes, but she should be able to give you percentages. As in she is 80% sure that you have ando and the hysterectomy is the only cure for that. She might also have some other diagnostics that can be done so the decision is more cut and dry.
Your symptoms sound horrible and completely debilitating. I think sometimes we want to stay with what we know vs. the unknown so it seems easier to live with the symptoms than have the hysterectomy. Looking at it 3 weeks post LSH I can tell you that for me it is better than I could have imagined.
Remember to do what is right for you and you will be fine.

Hi,
you sound like you are in quite a dilemna and dont feel bad, because we were ALL there too. its normal to have doubts and lots of questions, I did too.
I had my surgery due to endometriosis, large ovarian cysts and smaller ones in my uterus, I waited until the doctor said it was time for a hyster. have you considered going for a second or even a third opinion?
ask ALL the questions you need, get the opinion of a couple of doctors at least, and make the best decision for you, one that you are comfortable with......May the Lord help you and guide you in your decision making....

Making the decision to have a hysterectomy is truly a difficult decision. I think we all wear our minds out about whether we should actually go through it or not. I found that once the decision was made, I had more peace of mind realizing that it was the best decision for me. No one can tell you what to do. The best that you can do is talk with your doctor about your issues, concerns, questions and options. Just weigh them all out and make the best decision for you. Wishing you all the best!

I am one year out today. But I am 48 and had cervical cancer plus ovarian cysts, hard with vascular activity, and was haemhoraging for months. Reading your letter I feel you need to make an appointment to discuss these other options, you indicate you are uncertain regarding more children, this is not an emergency surgery and it is important that you do not have this surgery nor feel pressured by your Surgeon, you need to be really 100 % certain before proceeding.
If you don't have a second opinion I suggest you seek one.
This is your life, no-one else's and the best way to make any decision is to have full information, as well as know expected outcomes plus how you actually feel about it.
Serious second thoughts do have to be fully addressed.

For ME, the pain and not being able to do ANYTHING but sit on this couch is worth the surgery.
I believe that if God wants me to have another child, He will plunk one into my life. He can do ANYTHING.
After surgery, I will go back to mothering any child I have in front of me, in school, at church, wherever they are. Even if they're not mine, I'll use that time to be a good example and for a positive interaction.
Colleen

If your having doubts get a second, third or fourth opinion. See if there are any other options for you. If there are other options try them. Just make sure this is what you want. There is no going back once it is done...believe me regret is a feeling that you don't want to carry.

I am also having all the same thoughts..and have all the same symptoms as you except I bleed for 14 -21 days and heavy for half of it.

I go in on monday. but then I think how much better life will be wit no cramps and no bleeding. and How much better my kids lifes will be when I can spend more time with them without worring that I need to stay close to the bathroom. I cant go swimming anymore when they ask I have to tell them that im am not feeling well or I just say no and try to do somthing differnt and it kills me inside.
My dr can find nothing wrong with me but my lining is a little thick.I have done the Mirena IUD twice and with heavy bleeding it can just fall out with the flow.so I said enough is enough take it out.and he was fine with doing it .
you can only do what is right for you take a big breath ........now asume you dont go for it ......what will your life be like .....bleeding ....pain.....no more kids....(sorry about that) but you have to think it all out..and the constant worry if will it start today where is the bathroom , did I bring enough pads/tampons (I have tampons in every bathroom in the house ,in every purse ,in the truck in the quad,and in every jacket I own)
Now think if you do go for it...........No bleeding.......No Pain.......No worring.....More chances to up and go where ever you want without thinking about it......more quality time with your child to do mabey more and differnt things.

We love to camp and I cant even do that now I want to be near a flushing toilet lol

Now what sounds better to you???
I know you are freaking out so am I .I try to look at myself as another person what what would I tell her to do????
take a step back take a big breath ..
good luck.

Please take more time until you are sure you want to do this. I did so much research I could have performed the hysterectomy myself! I absolutely had NO choice -- my uterus was so huge with fibroid tumors that if I had waited I would have had to have an incision all the way down the front of me like a zipper, instead of just a TAH which I had. But I STILL wasn't sure until I had done tons of research. This is NOT a minor surgery, this is major major surgery. I think it got a reputation of being "not that big a deal" because it is happening to WOMEN instead of men, frankly, but it IS A BIG DEAL.

Do not do this unless you are sure. Second opinion, third opinion, try other things first. My favorite question to ask every doctor is this, "What happens if I don't get this surgery?" Make them sell you on why you "have to" do this.

And stick to hystersisters, it is THE BEST website and got me through my ordeal.



Your sisters are with you!

Ladies... thank you so much. My gyno has been away so I have been unable to talk to her. Everyone seems to agree that I should wait till I am 100% sure. Since I've not had a laparoscopy in 7 years, I really feel unsure about what is exactly in there. Probably adeno. If she goes in with a laparascopy and says she sees nothing, or that my uterus looks seriously mishappen, then I will get it removed. If it is something else, I would want it fixed first and see what happens. The worst thing would be I suffer a few more months.

I am lucky in that my bleeding lasts only 8 days (only) and is regular like clockwork unless I try the continuous birth control pill (makes me bleed constantly). I do have pains more than that, but honestly, I can feel the difference in the pain between when I am really stressed out and when I relax, and when I take care of myself, and when I don't.

I may change my mind and just go for it after talking to my gyno, we'll see by tomorrow.

Thank you so much for your input!

Hugs,
Steph