Tried everything, want hyst, but too scared

I've been reading posts here for four years, ever since my gyn advised a hyst for a 10cm fibroid. My friend's mom had a hyst at 49 and died from a pulmonary embolism, so I have a huge bias against having this surgery. I tried focused ultrasound - didn't work. Tried UAE three years ago, which sort of worked (fibroid down to 7cm, bleeding less, but still have two days of huge clots and then a week of spotting after my period, as well as frequent uncomfortable pelvic pressure). I am SO fed up. I want this organ out of me and I'm not afraid of pain, but I have two little boys and I can't get over the fear that I could die from a surgery that isn't 100% medically necessary. I almost feel like it's my duty to put up with the discomfort rather than put them at risk of being motherless! You all will probably think I'm crazy, but thank you so much for letting me vent!

(((LMKD)))
I'm sorry to hear you're having such a struggle with this fear. I had the normal amount of apprehensions that most women have, but nothing that stopped me from being able to go through with it.

I don't think you're abnormal to have some fear. If most women are honest it at least crosses their mind. The truth is that the possibility of death is very, very small, as with any surgery there is some risk of something unforeseen happening. Have you talked to your dr about your fear? A dr would probably be best equipped to calm your fears and give you facts that might help you over come them.

You're probably going to have to do some assessing of your own life and how your health issues affect your ability to live and do what you need and want to be doing with your boys. For me it was a quality of life issue. The constant bleeding and resultant anemia, plus the pain were dictating too much of my life. My whole family was being affected by it. Any apprehensions I had were balanced out by the need I saw to be healthy and able to care for my family as I needed to.

I hope you can work through your fears. I don't think you're crazy at all. I only hope you won't allow fear to keep you from doing something that would probably improve your life in the long run. We all have to weigh the chances of a complication of any kind with how necessary we feel the surgery is for us. That is probably different for every woman. Only you can decide when and if you come to the place where you know in your heart that this is the best thing you can do for you and your family. I wish you well in your decision making. We're hear to help in any way we can.
's, Rita

HI LMKD

You are not crazy it is very scary to have surgery as there could be complications with any type of surgery I was so nervous and anxious with my hys my heart doctor cancelled my first as i needed to make sure my heart was strong enough to have the surgery I had 3 heart attacks between the age of 38 and 41 and have a heart stent . my surgery was reschedule to the 23rd and thank god all went well. I read a lot on this site and i didnt feel so alone I will put you in my prayers and i hope you will feel better soon. Talk to your doctor about your fears the nusrse with my experiance was very informative and helpful to me. My personal expiriance i am glad i had mine I went 3 years with a lot of pain and periods that lasted 21 days pluss had ade and endo with fibroid tumors. Im working on my recovery and i hope to be back to normal for the first time in years. good luck and god bless.

Hi LMKD,

I might suggest a 2nd or even a 3rd opinion.

I too think you are having normal fears. I cannot speak for all Hyster Sisters but many of us experience a feeling of being frightened about having a hyst.

For me...my decision came down to my ~quality of life~. I had 2 large fibroids and 24/7 pelvic pressure. I had bladder incontinence, my periods were getting *scary* heavy and I was tired all the time. I felt 85 yrs old. My life was beginning to revolve around my monthly.

You mentioned you have an approx. 7 cm fibroid. Have you checked to see if you are a possible candidate for a less invasive hyst?? 3 types are the LAVH, TVH and the LSH, the surgery type I had. Generally, a less invasive hyst can have a shorter recovery time and with two small children - you might consider it. My fibroids measured 9.1 cm at the time of my LSH and I am still *very* pleased with my LSH results.

Mary

I think the chance of dying in surgery for a hysterectomy is very low (I forgot the number). If you don't have health problems, the surgery should be safe. Of course nothing is 100%, a woman was killed taking her kids to school a few months ago.

I had to take the approach that if I worried that I would die, that I would have to worry every day about something (actually I have anxiety issues so I do).

Best of luck. At 49, you may go into menopause soon and your fibroid will shrink. Maybe if you wait, you will not need surgery. Ask your doctor!!

Hello,
Boy, Have I had the same fear. I had to have a lap last May (in which I was diagnosed with endo stage 3, adeno and pelvic congestion) and a pulmonary embolism was my greatest fear and it is also been the fear keeping me from scheduling. But, now I have. I decided if I made it through the lap my body will take me through the hyst.
I finally came to terms with tthe fact that there are risks in life for everything, driving, flying, drowning, violent crime, etc. Yes, there is a tiny risk for an embolism but it is TINY. Additionally, if you are in good health, not overweight your risk diminishes. I talked to my Dr about my fear and it was a wonderful thing to do. He did not think I was crazy but put me at ease.
I also have two children and as a mother I have also thought I can put up with the pain. However, I finally decided that I would be a much better Mom if I was not in pain constantly.
Now, I do know as my date approaches (I scheduled for after summer vacation)I will get nervous and I will visit this board frequently. I may even ask my Doc for some meds to keep me calm the few days ahead.
Good luck with your decision and feel free to contact me. we could support each other through this time.

It's nice to hear that you all don't think I'm overly neurotic. I try to put the odds into perspective, but whenever I ask someone if they would get in a plane if they knew it had a 1 in 1500 chance of crashing (the mortality stat for routine hyst), they always say NO! (Can you tell I don't like flying either? I'm just a little on the anxious side in general )

But this bowling ball in my pelvis is becoming more and more a drag on my quality of life, as you all have experienced too. I think about my stupid uterus several times every day! I have to face that fact that the time to do something is probably sooner rather than later. (The woman I knew who died from her hyst was 49 - I'm actually 38, so it's too long to wait for meno, unfortunately.) I'm due to see my gyn for my yearly checkup in June, so I'll bombard her with questions about it then. I did manage to survive two C-sections, so maybe that means I'm not prone to pulmonary embolisms?! (Doodlebee - if I do it, it will also probably be at the end of summer vacation - or in January, if I chicken out - I'll be rooting for you!)

where did you hear 1 in 1500? When I did a quick search on the internet I came up with 1 in 100,000. Maybe you were looking at a study where some of the subjects had significant health problems (cancer, heart problems)
does anyone else out there have current numbers, I do not think 1 in 1,500 is correct.

Unfortunately, 1 in 1500 is the generally accepted stat for hysterectomy for fibroids (not due to cancer), although there are some that say 1 in 1,000 or 1 in 3,300. Here's some links: http://www.rand.org/pubs/monograph_r...r1280.ch13.pdf
http://findarticles.com/p/articles/m...37/ai_85591428
http://findarticles.com/p/articles/m...8/ai_n10777225
http://www.clinicalevidence.com/cewe..._I10.jsp#REF38
If it were 1 in 100,000 I'd be on the table tomorrow! 1 in 1500 is still considered to be a "safe" operation, but it still makes me too nervous.

However, have you looked up the stats of dying in a plane accident OR heck just driving down the road. If you look at life that way, all life is dangerous and you should just stay at home. But oh, yeah, pretty high stats for dying there too. Yes, putting yourself at risk if there's nothing wrong is not a good decision. But you DO have a major issue going on in there. As others have mentioned, how is that affecting your life and the lives of your kids?

As to the stats you quote: Stats can always be manipulated one way or the other. I'm not sure about the sites your quoting, but you do need to take into account if any of them have a bias one way or the other about hysterectomies. MANY of the sites I came across on my initial searches were incredibly biased AGAINST hysters. for ANY reason. They had stats that showed incredible risk of all sorts of things from hysters. I took those Stats with a grain of salt because I suspected they had been manipulated toward their bias. That's not to say where you got your stats IS biased, but you should consider it. I've found hystersisters to be pretty unbiased in that account. They do obviously support hysters. but I feel give a good balance of considerations for AND against doing them. They also offer lots of resources for alternatives.

I wanted to add a couple other thoughts/suggestions.
As to recovery times: just because you do a "less invasive" surgery does not garuntee short or easy recovery. Mine was a "simple" TVH -- supposedly the easiest to recover from. It still took a good 6-8 weeks to recover. How old are your kids? That can make a big difference on recovery timing as well. Also take into account how you'll get them to school, the Christmas holidays, etc... before deciding on the fall option if you do go for it. Summer may be better: less time to dwell on fears, and you and kids can sit and watch movies all day together. I find fall school time very stressful as it is, adding surgery (which I ended up doing with the breast biopsy) made it VERY difficult and an added stress on an already stressful time of year.

As to the fear: a couple things to look into. My Dr. suggested we do mine under a spinal/epidural to avoid the complications of general. We weren't able to because of difficulty starting spinals on me, but it is an option. While spinals have risks too, I understand it's less so than general. As to the embolism fear: hospitals are MUCH more aware of that risk now a days and actually take great pains to reduce that risk. In surgery almost everyone has ted hose put on them. These are pressure stockings/hose that keep blood from pooling in the legs (the biggest cause of blood clot/embolisms). Many also have pressure boots they put on for the first 24 hours post surgery to keep circulation moving in the legs. For the same reason as the hose.

Of surgeries done, hysterectomies are probably one of the most done. 1000s are done (probably daily) and the greater number of them come out fine. I'm not saying to necessarily get the hyster. BUT don't let fear drive the decision.

It's a hard decision. Get all the information you can. Good luck on it! LJC