27 yr old, upcoming hysterectomy...scared

Hello everyone. My name is Kelly and I am going to have my surgery in less than two weeks. I have had lap ablation and failed, also BC failed. I am young and have been advised by my brother not to have it, he is a pharmacist. I have a heart condition and have had 4 cardiac ablations. The pain from the endometriosis is causing cardiac episodes. I am scared bc of my age and the effects afterwards...mainly emotionally. I luckily have a 5 yr old but with the heart condition I could not have any more kids...but with my uterus I feel I could still get lucky...I just feel too young. I am scared of how I am going to feel? Just plain scared and being in the military- family is far away. Advice?

(Background) my husband is in the military so alternative opinions is difficult. I am comfortable bc I cannot take BC bc of migraines and it took 4 years of me dealing with this pain before anyone even saw me. Kept telling me I had hemorrhoids. I finally I almost got in a wreck with my son during a painful episode then I demanded to be seen. They all dismissed me and said I cannot have it bc it would have to be really bad to be so painful and I was just too young. The lap proved them wrong and me right...not like I won a great prize.

Hi Kelly!

I don't have any wise words of advice to you except to assure you that being scared is nearly a "universal emotion" all of us have experienced. In fact, the feeling is so common that we have an article in our Pre-Op Articles archive that may be helpful to you as your surgery date approaches:

Coping With Pre-Op Anxiety & Fear

I'm sending positive thoughts your way for a successful surgery and uneventful recovery.

Many s to you,

I will pray for you. So young to have this procedure. I will be having my surgery the day before yours. God Bless.

I am 35 and had heart failure associated with the birth of my daughter last year. Oh, I also have endo and we are a military family! I just had my TAH on Tuesday, Nov 14. I was a bit leary beforehand also and had differing opinions about it because I am young. But, like you, it would be extremely dangerous to have more children, so I needed permanent sterilization. Turns out after surgery they discovered I also had adenomyosis (endo of the uterine muscle that causes much pain).
Do what you think is right. I'm so happy I did this, even though recovery is tough. The hardest part is relying on my husband for everything now. I have no family nearby either. But I know that in two months this will be a distant memory and I have my whole life ahead of me. I actually feel so fortunate to have this while so young. I have many many young, pain-free years to live!!! All the best with your decision. You are not alone.
Holly, TAH Nov 14, 2006
Endo, adeno, PPCM

millertk7,

I have no idea if your fear and apprehension is because you are not sure you really want to have this done or if it is just normal pre op jitters etc.. I am not trying to persuade you one way or another, but I just wanted to let you know that you do not HAVE to do this right now if you are not 100% ready and willing. You can change your mind up to the last minute. If this is what you really want and need than that is ok too. I can't judge what your medical situation is really like. I know it is frustrating when you do not have access to many options. I didn't either and believe me I fought with my HMO to see a specialist out of network (not too many doctors in my network that really know how to deal with endometriosis). I also have many regrets post hysterectomy and post op complications I am dealing with (see my signature at bottom of my post for partial list). I wish I would have taken more time to be 100% ready for this. I was 33 years old at the time (15 months ago). I had mine for endometriosis also but it didn't seem to be as severe as what you describe. I could not tolerate bc either, and tried Lupron for 4 months which helped some but caused me horrific headaches. I could not find a doctor who was willing to do another laparoscopy to just remove the endometriosis itself. I didn't know there were special diets and alternative approaches to dealing with endometriosis either. So not having exhausted all my other options first and not having educated myself enough about the risks and potential consequences of hysterectomy and removal of my ovaries probably contributes to my frustration and lack of preparedness and acceptance of my fate (I also have never had children). I had one year between actual diagnosis (although I suffered five years prior) and hysterectomy.

For many women hysterectomy does provide a tremendous relief of the unrelenting pain of endometriosis and gives them a much better quality of life. They are willing to deal with whatever problems the hysterectomy or surgical menopause may bring. If you are educated about the risks and potential effects of hysterectomy and surgical menopause as well as the benefits, then it may be easier to weigh that against the pain and suffering of endometriosis and decide which is more acceptable to you. Unfortunately it is difficult to predict how your body will respond or what the other side will really feel like for you, especially long term. We are all different. That is why it is important to seek several opinions from at least several different doctors who have access to your medical history and can help you figure this out.

Because you are so young and already have heart problems, have you discussed with your doctor about whether to preserve your ovaries? Surgical menopause can increase the risk of heart problems, especially without hrt. If you have decided to have them removed, have you discussed with him/her whether to take hrt or not, especially in light of your other medical issues? The issue of whether to use hormone replacement, specifically estrogen replacement after hysterectomy and ovary removal for endometriosis is a sticky one. Some doctors prefer to have a woman wait for six weeks to six months before allowing estrogen replacement to give any remaining endo a chance to die off (estrogen is the hormone that "feeds" endometriosis growth). Others will allow hrt right away insisting that the dose of estrogen is too small to interfere with any possible remaining endometriosis, and the risks of surgical menopause, especially in younger women, are too great without hrt. Others will prescribe progestins along with estrogen replacement to inhibit endo growth. Knowing whether you will be having your ovaries/ovary removed and what hrt regiman you plan to start with can help alleviate some of your fears as well. With endo some doctors will automatically remove both ovaries to lessen the chance of more problems later (a hysterectomy is not a cure for endometriosis but removal of ovaries lessens the odds of it flaring up again). Others will try to preserve an ovary if it is healthy. I was also not prepared to have both ovaries removed. I knew the left one was damaged, but woke up with both of them gone after surgery. Instant menopause is no picnic at our age (although there are women that seem to deal well with it and have few problems), but it is doable if you have a support network and doctor knowledgeable about hrt and what your body needs at your age.

I hope you will read the many articles, resources, and forums offered here! There is so much information here and it can be overwhelming, but it can help put things into perspective. Good luck with everything and stick around and reach out for help as much as you need to! There are other women here your age so just know you are not alone with this!

They will be taking my ovaries. I will discuss my post hyst treatment with them tuesday. I am scared, but I think that it is due to previous surgeries that have failed (referring to my heart). I might be very fearful but there is something inside of me telling me this is the right thing to do. Just as it did when I knew something was wrong and no one else would listen. I believe I know my body best and I have to listen to it, no matter how scared I may be prior to it. But like I said, surgeries scare me by them self. I had bad experiences with long surgeries and bad recoveries. I am not trying to complain, just explaining. Does anything I say making sense to anyone-bc I know my husband thinks I am crazy!!!

What does your cardiologist say? I think you need to listen seriously to what he/she says. You have a very legitimate concern to factor in.

,
Kay

My cardiologist wishes me luck and since my cardiac problem is uncommon agrees that I should have this done. He would only have a problem if I were to be able to have kids but since I cannot not then he agrees. The cardiac issue that occurs with the pain episodes, that is my main reason for having everything removed.

I do want to thank everyone for replying to this. It makes me feel better, somehow. I know I am going to need you all for the next few week. My husband is also glad I came upon this site. He noticed when I read him your replies that I seem more confident with my decision. My brother is my main family, the one blood relative I can trust, and him not supporting me really threw me for a loop...but you girls have let me be comfortable with MY decision. Thank you. I look forward to chatting with you all.