Not sure what to do. TMI.

CA.Giraffe

I don't have a huge group of girlfriends to discuss this with, so I thought I'd throw it out there and see what experiences/advice/etc y'all wanted to share.

I have uterine fibroids, and they've progressed to the point where I'm unable to function for 7-8 days out of the month due to the relentless bleeding. The doctor has given me two options - Mirena (IUD) or a hysterectomy. She is advocating the hysterectomy based upon not only the fibroids, but also three years of abnormal Pap smears and a family history of poor reproductive health. She feels the hysterectomy is inevitable, and that I'd recover more quickly by having it at a younger age (I'm 33). The IUD would be an option to try and control the bleeding, but isn't going to make me "better" in the long term and she's not sure it will control my level of bleeding. I'm not crazy about being on any kind of hormonal BC - I tried several pills in my younger years as well as Depo-Provera, and couldn't tolerate the side effects of any of them.

A hysterectomy is incredibly invasive, and I worry about the recovery and side effects. That being said, I can't handle the bleeding as it is, and it's hugely impacting my work and home life. I cannot have more children as it is (nor would I want to), so that's not a concern. Part of me thinks I should try the least-invasive treatment first and go from there, and another part feels I might as well nip this problem in the bud so I can move on with my life.

Thoughts? Anybody want to share their experience with either option?

LisaA2014

One of my girl friends just had a hysterectomy at age 31, she had early stage cervical cancer. This happened literally just last Friday. She is recovering well, the only complication was she had to have a blood transfusion. This is apparently pretty common for this surgery but the doctor elected not to take her own blood prior to surgery. He said he didn't "think" he would need it. Well he did and he didn't have her blood and had to use donated blood. Just an FYI if you decide to go with the surgery.

If it was me I would elect to have the surgery. I would definately research Mirena in detail before starting that as it has some very bad reviews online. I assume you've gotten a second opinion and both say surgery is inevitable. My friend was able to leave her ovaries in tact to prevent early menopause.

These are MY thoughts but are in no way any sort of advice. God bless you!

Maggie0829

I think Liatris had some great advice about getting a second opinion before deciding anything.

However, if it were me and my doctor had provided me with a great deal of information and was someone I have trusted for many years with my gynecological health I would listen to my doctor.  If they said that the best course of action to solve this health issue would be to have a hysterectomy I would have the hysterectomy.

But I would get a second opinion and I would have both doctors describe to me in depth what both options would do in regards to the health issue at hand.

Jessa617

I have had the Mirena for about 2 years now. I switched from regular BC pills because my bleeding and cramps were getting really bad. I don't have the same problems as you do so I can only tell you my experience with Mirena. My bleeding and cramps immediately stopped. I have not had a period in 2 years. It was very painful for me to have it put in but the cramping only lasted an hour, then it was fine. The one bad thing I can say about the Mirena is that I started to have an extremely bad reaction that caused major breakouts. I don't want to gross you out, so I will refrain from describing them. I tried regular facial cleansers, proactiv and nothing worked. I finall applied topical anitbiotics and that seemed to take care of it. All in all I had really bad acne for about 2 months and I've been fine since.

There's a lot involved with surgery, not only physically but emotionally as well. In the end it's your choice on when/what to do and I would ask your doctor about the pros/cons of doing each. If a hysterectomy is inevitable, it may be best to get that out of the way and over with. If you're not ready for it, try the Mirena for a little bit.

happyfor25

As other PPs have said, if I had confidence in my doctor, I would follow his recommendation. 

I had very heavy bleeding for years and had a uterine ablation done several years ago and it has helped tremendously.  Has this been offered as an option?  If so, it is noninvasive and you wouldn't have the concern of potentially needing hormone replacement.

CA.Giraffe

Thanks, I do appreciate the responses.

I had to switch OB/GYNs when I moved last year, so this doctor is really the second opinion. My prior OB/GYN I'd been seeing since high school, and she told me in 2007 I would be facing a hysterectomy in the future due to the fibroids. At that point, though, there were things I could do to mitigate the effects of the fibroids - the biggest one
being weight loss. That OB/GYN, whom I trusted completely, wasn't
willing to consider an IUD for the bleeding; she didn't feel the chances of
it controlling the bleeding were high enough to warrant the risks or
potential side effects. I lost just over 90 pounds and I've kept it off. In 2009, I had a D&C which did no good. In 2010, I had an ablation, but my cycle returned within 6 months.

I do have excellent health insurance, which will pay 100% of either the
Mirena or the hysterectomy. I've had two abdominal surgeries in the past and
recovered amazingly quickly; overall, I'm an excellent candidate for the
surgery. Thanks for mentioning the blood transfusion, though - I'd certainly
want to donate my own ahead of time, if for no other reason than I'm a rare
type.

One of my fears is waiting too long to have the hysterectomy,
such that the procedure isn't as successful as it could have been. My mother was
told for approximately 15 years to have a hysterectomy due to her fibroids, but
steadfastly refused. Long story short, her uterus ended up impacting her
bladder, and she's on a catheter now. Hindsight is 20/20, I guess.

mcda04

If you cannot or do not want anymore children; I'd get the surgery.

I've had the Mirena IUD for almost 5 years now and I love it. I used to have very heavy bleeding that lasted about 10 days combined with back and abdominal pain. After Mirena, I had two periods and they completely stopped after that. The procedure was painless and quick; I called my Gyn, on a Monday and had it inserted on a Wed. now I have Kaiser so I believe they have a longer lead time to order and insert but I already started the process for this April.

MrsMack10612

I haven't read all of the responses, but -

Abnormal Paps:  I had this problem about 10 years ago.  My Dr. couldn't figure out.  The Pap would be abnormal, but the biposy would be fine.  Final solution?  LEEP/Cone procedure.  I cone shape piece of your cervix is removed and then it is cauterized (LEEP).  It is not invasive, can be done in the doctor's office and is only slightly more painful than a pap.  I have not had an abnormal PAP for years.

Fibroids:  I was in a similar position about 3 years ago.  My body changed and my periods were horrendously painful, heavy and long.  I final said this sh*t has to stop after I one last for 21 days.  My doctor recommend hysterectomy or ablation.  I weighed the pros/cons for a long time before making a decision.  I went with the ablation.  It still renders you unable to have children (which a hysterectomy will do as well) but, you keep your uterus, hence not sending you into early menopause.    The ablation cauterizes the uterine lining, therefore no more or lesser periods.  This means the fibroids no longer can cause issue.

It was the best thing I could have done.  The procedure I had done was call NuvaSure.  Look into it, it may not be right for you, but it has made my life 100x better.

Oh and I'm 39, so this all took place between 29-36.

ETA:  I've always had fibroids, they are hereditary in my family.  Three years ago is when they decided to become a problem.

CA.Giraffe

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_chit-chat_not-sure-what-to-do-tmi?plckFindPostKey=Cat:Wedding BoardsForum:14Discussion:4f2ae48a-cfd7-44b4-96b6-becb5733cedcPost:0f8d4855-da9c-4eff-a851-27b5e651ff2c">Re: Not sure what to do. TMI.</a>:
[QUOTE]If you cannot or do not want anymore children; I'd get the surgery. I've had the Mirena IUD for almost 5 years now and I love it. I used to have very heavy bleeding that lasted about 10 days combined with back and abdominal pain. After Mirena, I had two periods and they completely stopped after that. The procedure was painless and quick; I called my Gyn, on a Monday and had it inserted on a Wed. now I have Kaiser so I believe they have a longer lead time to order and insert but I already started the process for this April.
Posted by mcda04[/QUOTE]

I miss my Kaiser coverage! I had them when I lived in both NorCal and SoCal. Unfortunately, now I live in SLO County and the closest Kaiser is in Ventura :( so I had to change...they did AMAZING work on reconstructing my son's facial bones due to a birth defect.

MrsGandthebeag

I'm sorry you're experiencing these issues.  In December I tried to get an IUD, the paragaurd.  It was the worst pain I've ever experienced in my life.  I almost passed out a few times in the doctor's office and they kept me for an hour afterwards.  I also almost went to the ER when I was home as I was so sick/in pain.  A week later I had an ultrasound done and they told me it was placed too low in my uterus so would not be effective in preventing pregnancy.  My options were to take it out or reinsert.  I just had it taken out and went back on the pill.  For this reason I would never recommend anyone get an IUD.  I've also heard a lot of bad things lately about Mirena.  At any rate, if your dr is recommending the hysterectomy, I'd go with that.  Good luck whatever you do.  

mcda04

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_chit-chat_not-sure-what-to-do-tmi?plckFindPostKey=Cat:Wedding%20BoardsForum:14Discussion:4f2ae48a-cfd7-44b4-96b6-becb5733cedcPost:e844ea25-eac2-4b76-8746-cc6c09088b4b">Re: Not sure what to do. TMI.</a>:
[QUOTE]In Response to Re: Not sure what to do. TMI. : I miss my Kaiser coverage! I had them when I lived in both NorCal and SoCal. Unfortunately, now I live in SLO County and the closest Kaiser is in Ventura :( so I had to change...they did AMAZING work on reconstructing my son's facial bones due to a birth defect.
Posted by CA.Giraffe[/QUOTE]
I've only been on Kaiser for two years and just started going to the Dr's office. So far, I love it. They've found all the issues and gave me diagnosis for all of em within a week.

I hope these posts help you make your decision. Good luck.

CA.Giraffe

One of the bonuses to having it done now would be that I could pick the procedure. I could have it out vaginally if I wanted, and that sounds like the way to go vs. abdominally. I would keep my ovaries, neither doctor has recommended removing them. I have another appointment next week to discuss the options, this time with DH. I'm thankful to have some perspectives of others!

LizM61409

Mirena is really awesome to help with a lot of bleeding problems. However, it is not as good at treating bleeding due to fibroids because the etiology is impaired venous drainage of the endometrium rather than hormonal problems. Also, you may not be able to have it placed if the fibroids distort the inner lining of your uterus.

Ablations also do pretty well for bleeding problems but less well for fibroids. Again, it may not work if the fibroids distort the inner lining of the uterus due to the way the ablation device works.

If you want a hysterectomy, vaginal is definitely the way to go. You go home the next morning, no skin incisions, and it has the lowest rate of complications. Good luck with your decision

dtbluv

I'm sorry you're in pain!

I've never dealt with anything like what you're describing, but had a somewhat similar circumstance where there was temporary measure that might work, or a more difficult, long term solution.  I did the temporary thing first, and it didn't work, so I had to do the more difficult/invasive option anyway.  I wish I had just skipped even trying the easier temporary solution.  I had to take time off work, which was difficult (even skipping out for an hour here or there is stressful for me), scheduling all the appointments, having to keep track of appointments, insurance information, et cetera stressed me out, especially because the temporary solution wasn't yielding positive results.
Even though insurance covered everything so paying for the procedures wasn't an issue, I feel like going with the long term solution that I knew would work the first time around would have saved me a lot of worry and stress.

I say go for the hysterectomy.  T&Ps are sent your way! 

zantster

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_chit-chat_not-sure-what-to-do-tmi?plckFindPostKey=Cat:Wedding BoardsForum:14Discussion:4f2ae48a-cfd7-44b4-96b6-becb5733cedcPost:255f9496-021b-4f1f-a438-759741f509e3">Re:Not sure what to do. TMI.</a>:
[QUOTE]One of the bonuses to having it done now would be that I could pick the procedure. I could have it out vaginally if I wanted, and that sounds like the way to go vs. abdominally. I would keep my ovaries, neither doctor has recommended removing them. I have another appointment next week to discuss the options, this time with DH. I'm thankful to have some perspectives of others!
Posted by CA.Giraffe[/QUOTE]

You are amazingly brave to be confronting this head on and I admire you for that.  It's also good that you would be able to keep your ovaries.  My mom had fibroids before having me at 36 years old and was able to avoid a hysterectomy. 

I have not had any similar issues.  But I have read articles that spoke of an over reliance on hysterectomies in some cases where less invasive alternatives such as: myomectomy, hysteroscopy or uterine artery embolization might be better suited for the condition.

These articles spoke of a higher insurance payout for hysterectomies than some other procedures. I am not saying that is your situation or your doctor's motivation. Since I am not a doctor and your medical history is a very private and complex matter. I would just continue to urge you to do as much research as you can before making a final decision and perhaps see if there are any specialists that have a lot of experience using the less invasive ways to handle your situation who might have another opinion. I'm sure they would also tell you if they believed the other methods were not suitable.

As a rule of thumb I am always more admittedly biased towards anything that might allow a woman to keep as much of her reproductive capabilities as possible.  And since there's no way to tell what the future might bring in terms of children, it would be great if you could retain as many options as possible.  My mom also had fertility problems for five years in addition to her fibroids before having me and my brother.

No matter what, I'm sure you'll choose what is best for you.  You have all of our support with whatever you decide.  Best of luck and get well soon!