United States of Motherhood: At Least I've Got Options: Choosing Hysterectomy, Novasure Endometrial Ablation, or Mirena IUD

Monday, May 18, 2009

At Least I've Got Options: Choosing Hysterectomy, Novasure Endometrial Ablation, or Mirena IUD

We all know that Scout (that's me) has some serious gynecological problems.

Dead serious.

Life-altering serious.



If that's not hint enough to my male readers to skedaddle, I don't know what will. Don't say I didn't warn you, m'kay? You were warned that this will be a mighty bit of too much information if you are male, squeamish, or both.

Now, if you have a wife or partner or girlfriend and this information pertains, by all means grab a cup of Joe and come on in to the crazy we call a woman's body.

If this helps anyone to realize that what they have and what they are feeling needs medical assistance then by all means, please come on in.


I finally got that appointment. Yes, that appointment.

I was assured my hypermenorrhagia (there's a name for it) is unexplainable by my small fibroids and definitely not normal. It could be hormonal.

It often occurs in women who have pale skin (me!), blond/red hair (me!), and have light colored eyes (me!). I won the triple trifecta.

However! It is most assuredly not normal.

Really not normal. I was instructed on what is typical and that has convinced me that since the age of 14 years old, my period has not been normal.

Not normal is blood clots (I told you TMI) larger than quarters. Erm me? How about lemons? Apples? Pint sized? As in when the blood flow is so strong and fast that the body does not have the time to release those compounds that prevent coagulation.

Also, the length of 7-10 days, the flow requiring me to sit on commode for an hour or longer at a time and using yes TWO super tampons and an overnight pad which is soaked in less than 45 minutes, is not normal.

Finally, the anemia and soul destroying fatigue of bleeding out and the life-altering part is also not okay.

I was presented with 4 options:

  • Do nothing. (I laughed bitterly at that one)

  • Meridia IUD which is coated with hormones. It helps 40% of the time to minimally lighten period. It also makes women gain mucho weight. and can cause hair loss, infection and more spotting mid-cycle. Oh, and there's a 60% chance it will do nothing. End result: I'll still definitely have my period and it is unlikely to have more than a minimal result.

  • Uterine ablation/ Endometrial Ablation via Novasure. Yep, fry my uterus up in a pan of it's own juices. 90 seconds of a fanned out laser instrument at 360 degree. Risks do include perforation of the bladder, possible decreased sensation during the horizontal mambo, and oh, this: Due to insurance coverage, it would cost $2500 and only cost me a co-pay. My doctor says she only offers this option to those who have gone through childbirth because they can handle the pain. Yes, pain. As in local, Valium, etc. will not cover the feeling of having said fried uterus steak and eggs. Ack!

  • Get an Novasure endometrial ablation in the hospital with general anesthetic. Have I mentioned that Malignant hyperthermia runs in the family which basically means increased risk of death due to anesthesia? I fear general anesthesia. Also, this procedure costs $10,000 and it depends on my insurance whether they will cover this procedure in the hospital versus in her office.

So, I'm having problems deciding. Some of these seem to drastic and risky. Others seem like bringing a tissue to a flood. I know I need to make a decision in the end. Part of me says get it done right and get the hysterectomy. I am so tired. My quality of life sucks. Then there's the fear that I die and won't be there for my children.

Help! I want to get off this crazy machine!

What would you do in my place? I need some words. I seem frozen in indecision.

Thx for the flickr pic by DaveNeukirch, by kevindooley, and by avlxyz.


JamaGenie said...

I vote for the partial hysterectomy. It'll have to be done under general anesthesia, right?? Keeping you alive under a general is what anesthesiologists get the big bucks for (not to mention the long title).

Seriously, if you aren't using it anymore, no reason to keep the uterus and spend 7-10 days a month in Depends.

No way would I go for the laser thing. Who can *guarantee* only the bad stuff will get fried?

btw, a neighbor had the uber periods too. Couldn't believe she waited so long to get it fixed, except like you, she didn't know her periods weren't normal. Thought everybody's was like hers.

Sometimes TMI is a good thing.

Shala said...

I didn't want to have to have a hysterectomy, but it was necessary for health reasons, the other options weren't viable for me. Hormones of any sort screwed up my cholesterol levels terribly, and my condition doesn't do ablation well. I wanted a 3rd child very much.
All that said? I'm glad I had it done. I'm healthier, like, healthy enough that I realize exactly how sick I was before, how weak, and how much it affected my life. I'm able to do more with my children, my hair is longer and healthier than it's been before in my life, and I'm not anemic anymore and my cholesterol is under control. The rest of the options have worse possible complications if you aren't planning on more children.

Dumblond said...

First off, the next time you are talking about uterine ablation, do not include a picture of food!! That was so wrong! Ick! I am never going to be able to look at steak and eggs the same way again thankyouverymuch!!
Secondly, I don't know how much help I can be since I have not had to deal with anything even remotely like your situation but out of all the options, the partial hysterectomy seems like your best bet. That "h" word is a little scary but your condition also sounds very scary and if I were in your shoes, I would opt for the "done once and for all" choice. Especially since you are not interested in more kids.
Whatever decision you and your family make, I hope that it works for you so you don't have to put pictures of food up with talk about your lady business.
Ever. Again.

Brandi said...

I'm sitting here with my ultra tampon and my overnight incontinence pad (about twice the size of an overnight menstrual pad) sharing in your misery. Luckily mine only lasts about 7 days, but I can't even leave my house for three of them.

I would definitely have the partial hysterectomy. I'm actually working on getting one myself.

In January I had gastric bypass surgery, and when they first went in, they found an 8 pound, bowling ball sized ovarian cyst. They called in an OBGYN, and they removed the cyst. They thought about removing that one ovary and my uterus, but since I was under anesthesia they couldn't ask me if I was O.k. with it and as it wasn't life threatening, they left it all.

So, now I'm begging for them to go back in and do what they should have done the first time they had me knocked out.

Oh, and in addition to abnormally heavy flow and clots the size of Montana, I get searing pain (not cramps--it's more like my flesh being torn apart) at my old c-section incision.

Anonymous said...

Due the seriousness of the situation you face .I would encourage you to do as you feel best after long deliberation. The hysterectomy seems like the better choice in some ways especially if it helps to alleviate the problems you currently experience. God will bless and keep you ! You won't die! focus on living ! not dying ! I recently had a tumor removed. My left lung is still hurting but i know that in time things will be better.Focus on living dear friend . Make the choice that your Spirit is comfortable with and all will be well . Believe it , Trust it and Have Faith . You will make it.
God bless you

Beth said...

Easy for us to say but have the hysterectomy. Be done with it! Is there an option to have either a spinal or an epidural for the operation instead of having to face the uncertainty of anesthesia?
Best of luck, Scout.

Luce said...

I had the same problems and in the end, after I exhausted all the other options, had to have a hysterectomy. Believe me, it was the last option and I was scared to death, also I had an emotional connection (duh, I know), with my uterus. The pain and the bleeding was just too much for me.

15 year later and I can really say it was the best decision I made. I should have had it done in the first place.

Good luck!


Lisa said...

I vote for the whole enchilada. Better to be done with it once and for all. The death thing is the only problem...but surely they can take extra precautions since they know you have a higher risk?

Anonymous said...

You have had symptoms described in medical terms and been given 4 choices, yet it seems that no one is sure what are the causes of these symptoms! I would investigate this a little further, when you have a better idea about what the causes are, you can have a more informed and focused solution to the problem.

You may be presented with assured options but it is you body and your life. This does not appear to be a life threatening condition although it is obviously having a huge impact on your life. A little more investigation may ultimately provide other less drastic options or more appropriate surgical techniques.

Good luck

sharalyns said...

Ok, so I can't tell you what to do (although I would *dearly* love to as an RN), but as for the chronic anemia, are you on iron supplements? If so, I have a suggestion for a *wonderful* supplement that (shockingly) doesn't bind you up!

It's called Blood Builder, and you can get it at Super Supplements. It's made from whole foods and contains the absorbable iron along with the vitamin C to help it absorb and B vitamins for energy in the meantime. I was on 3 tablets a day for 9 months with no "ill side effects", if you know what I mean..

Anonymous said...

I had the laser surgery done back in the early 80's for cervical cancer. My issues were totally different than yours, but I can say that it wasn't bad as I was awake during the whole thing. My procedure was done with local anesthetics and went off without a hitch. I can go into more detail if you like. I was surprised as I had two kids roughly 10 years afterwards. We weren't sure if I could get pregnant after being BBQ'd.

Beki from Stumble

js said...

Hi! I introduced you to my vagina when you posted about your appointment awhile ago. I would go for the partial hysterectomy. I have similar issues, and many of your options were presented to me. I refused the IUD, because it just sounded like a nightmare, my doctor said she didn't like the thought of an ablation, and "doing nothing" was a joke to me as well. I'm having the cysts removed surgically soon, and hopefully they won't have to do a hysterectomy. I'm 30 and would like more babies! I wish you luck with whatever option you go with! I know how much this sucks (the clots, the INSANE bleeding, the exhaustion...) it's a total mindfuck!

Donna Hull said...

I had a partial hysterectomy (for endometriosis rather than your condition) at the age of 31 (already had two children, youngest was 18 months). It was the best decision I ever made. Before the surgery, I was dragged down by fatigue and pain. What a way for children to grow up, with a mom who is tired and feeling bad all the time. So I had the surgery and never looked back. There are risks in everything you do. Weigh your options and choose what feels the safest to you. Good luck.

imhelendt said...

Malignant Hypothermia runs in my family too. Don't worry about that. I've had 3 surgeries since I found out about the risk as have 3 surgeries between the kids. As long as they know about it (make sure you keep saying it right up until they wheel you into surgery) you'll be fine. They give you a different kind of anesthesia, and you're the first surgery so the machines have been flushed. Literally done this 6 times. It's fine.

One Crazy Chick! said...

Honestly, I'd do the hysterectomy if it were me. Just get rid of the problem all together. I hope you find the answer that is right for you!

Anonymous said...

After reading your 4 options and not knowing everything - the hysterectomy sounds like your best. They has to use anesthesia? There isn't a different way to guess sedate you? There are risks with everything in life. And sometimes going for it makes the outcome that much better. What is the chance of death? There are always risks of infection, and you already have tons of blood loss (j/k), but I think you'll be okay. If your quality of life sucks and you have the opportunity to improve it - why not? Just be careful about the anesthesia. But I am sure you are. Hope all works out. And while I can see the favored response from your readers - ultimately the decision is yours and your husbands (he gets a little say).And I'd go with your initial instinct. What your subconscious immediately thought, but was drown out by your mind beginning to over analyze it. Subconsciously you already knew. If you think about it too much - it is going to grow into a massive issue and time is going to keep moving and your going to over and over your options instead of putting your foot down and choosing one. Good Luck!

Anonymous said...

I would really hesitate over the hysterectomy and try the IUD first. The weight gain and hair loss is probably only in some women (like the pill?) and infection is only a small risk I think. Given your very real and extreme problem you may well be in the 40% who are helped. If it doesn't work you would still have the other options.


pinkpackrat said...

Well, Scout I would start with the least invasive( the IUD) and work up to surgery from there. I had the kind of hysterectomy you are talking about( cervix and ovaries left in, uterous removed) in my late 40's because of massive fibroids. If you need to do it it is certainly an option and the good news is no more periods(yayyy) but it does take a while to recover from and I found it did affect enjoyment of sex some and leave me with a bit of a pot belly. There is no perfect answer, but I'd start slow if I were you. Whatever you do it will be OK in the end and you will have more energy, less pain and a better quality of life soooooooo good luck. Isn't it fun being a girl???

Robin Easton said...

Oh my dear friend, I am so sorry to hear that you have gone through such suffering. I think before I did any of these I would find a good Gyn-doc who also practices alternative medicine. I realize this is very serious but I would at least find out more options from docs who practice both regular medicine and alternative med. I've had friends who have done this with similar conditions and had good results but I don't know what the treatment was, all I know is that it was non invasive.

Whatever you choose I do not judge you in any way, because I know debilitating something like this can be. I really feel for you having to make such a serious decision. You must feel somewhat a lone. I admire you for posting this and asking other women's opinions. Good for you!!! I am sending you lots of hugs and much courage. You are amazing.

Anonymous said...

Cut, it out. Then you could at least get your life back, in the pool and out. :)

Sandhill Sis

Chris said...

I think that I will not venture a recommendation. You've got quite a lot going on and it must be hard to sort through all of the information. I'm sorry.

carrie said...

You know my story, had the ablation done under anesthesia because it was combined w/other "procedures."

That was in December.

If I did it over again, I'd do a partial hysterectomy. What good is a fried up uterus anyway? I mean, really? I don't need it, it is just a pain - and most likely I'll be staring down one of these (hysterectomy) within 10 years so why not kill 2 birds w/ 1 stone?

Best of luck to you H. I am here if you need to talk.

Dianna said...

I have gynecological issues as well and was offered the same options. I first opted for ablation, but that failed because my uterus was 'too large'. I then opted for Mirena. I did not gain weight, in fact, in the 5 months since getting it - I've lost 13 lbs. Though for other reasons, I'm not yet convinced it's the option I'll stick with. My severe cramping has subsided (after laprascopic surgery couldn't find a definitive cause for the crippling cramps that required percocet to relieve). Bleeding has lightened, but I'm not convinced I'm losing less blood per month, because I'm now bleeding for 30+ days at a time rather than 3 (unfortunately, for those 3 days, I was confined to a bathroom). My GYN did tell me it could take 6 months or more to know for sure if the Mirena is for me - so I will give it another 30-60 days before making a final decision. So, obviously, if this fails, I may have no choice but to get the dreaded hysterectomy. Good Luck!

undecided said...

Sue Says

At last..someone with the same issues as me!! I just went to a new gyne yeaterday and my options are the same...still have no idea what to do but this madness has to STOP!! I feel like I am going crazy with all of these body issues. Thanks for sharing your story and letting me know there are others out there. I think I am going to go with the partial. It will be peace at last...I hope!

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