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ablation or hyst. for pain (adeno/endo)???? ablation or hyst. for pain (adeno/endo)????

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  #1  
Unread 03-10-2007, 07:00 PM
Help! Ablation or hysterectomy for pain (adeno/endo)????

Hi there. I've been up for a day and a half stressing about this, and I need to make a decision--ablation or hysteretomy before I feel I can relax!
My main issue is pain. I've tried depo lupron which worked great, but which I can only take for a year. The pill has been a disaster--3 or so painful periods a month! And now my doctor has offered me the choice between Nova-sure ablation or a hysterectomy (she'd take both ovaries, I am 44, but I need menopause to acheive pain relieve (proven by depo lupron). The ablation could be tricky--I have a uterine septum which will probably have to be removed in one proceedure, followed the ablation at a second proceedure. Doesn't sound fun, and from what I'm reading this proceedure is targeted at woment with heavy bleeding, not severe cramping.

But I've worried myself to death with what Ive read on line about hysterectomies. So glad to have found your site. (I've been obsessed with reading way too much over the last 24 hours--there's stuff out there that can scare the pants off you!).

My dear husband is ALL for the hysteretomy. He has seen the pain I've been through over the last six years. I have not had lapro for the endo to prove it's existence, but an ultrasound this year showed adenomyosis (there is no positive test or way to see adenomyosis until the uterus makes it to the lab). I also have an ulcer from taking too much Advil, so now am in bed with my heating pad today, just wondering what to do, and for some reason, quite teary (unusual for me).

I have two great kids (plus a "fixed" husband), so I'm pretty much done with my uterus, unless there are health reasons I should keep it for that I don't know about.

My mom says she's never met a woman who had a hysteretomy who didn't think it was the best decision she'd ever made in her life (she's had one, and as a OBGYN nurse knows many others who have). But for me, I'm concerned about depression/anxiety and sexual side effects (our sex life has suffered enough!), plus the long term health effects. I sure do want to get hysteretomy, but I want to make sure I'm doing the right thing.

Also, what is the general recovery been like for people with laproscopic hysterectomy? (my ovaries will be gone, but she'd like to leave my cervix to give me a little support structure as I grow older)

Any and all imput greatly appreciated!
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  #2  
Unread 03-11-2007, 03:32 PM
ablation or hyst. for pain (adeno/endo)????

Only you and your medical team can decide what is right for you. But I would like to comment on this:
  Quote:
My mom says she's never met a woman who had a hysteretomy who didn't think it was the best decision she'd ever made in her life (she's had one, and as a OBGYN nurse knows many others who have).
We have many women on the site who do regret their hyst, some even say they regret it "with every fiber in my being." As a hyst is a major surgery, it is not without risks. Complications can and do happen, some lasting a life time. I have seen more than one woman post "I traded one set of problems for a worse set, I wish I had my old problems back and did not have a hyst."

So I think you are doing the right thing asking questions, doing research, and making sure this is right for you.

I had my hyst because of I bled almost daily for two years, even after a D&C. During a lap we discovered my problem was endo, which is not cured with a hyst. Because I had not stopped bleeding and my uterus was so covered in endo, it had to be removed.

While I don't regret my decision, I still deal with endo and endo pain. However, I did keep my ovaries as I was only 25 at the time of my hyst. But because I did have complications with my hyst, my health has never been the same. I feel much older physically than my 31 years.

I dropped the link to our Endo and Adeno resources in your other thread. The more you know about your medical conditions, the better able you will be to make the right decision for you.

Also, you will want to learn more about permanent surgical menopause. While the Lupron did bring you pain relief, surgical menopause could be a whole different story. And with an endo dx, HRT might or might not be an option to relieve the surgical menopause symptoms.

Another thing, have you had at least a second opinion about what might be best for you? You may even want to consider seeing an endometriosis specialist.

A hyst is permanent, so if there are alternatives and options available for you, it might be a good idea to try them. But whatever you decide, I hope you find support and information here on the site!
  #3  
Unread 03-11-2007, 04:51 PM
ablation or hyst. for pain (adeno/endo)????

I had an ablation in Oct. 2006. I had polyups and heavy painful periods. I had major complications after the ablation. I ran fevers for 4 months straight, and started to have intense pelvic pain. A new dr. finally did a lap and found I had a chronic pelivc inflammation and endo, some from before but I had been asymptomatic. A bunch of new endo had come from some living tissue the dr. had left behind after the ablation had become trapped, and with no way to bleed out (my uterus had closed up after the scarring from the ablation) it started back bleeding into my pelvis causing all the endo there before to act up, and the new endo ate holes in my pelvic floor and caused canker sores on my uterus. The dr. tried to fix me up, but I continued to have fevers and pain. I couldn't make it through the days anymore and lupron and other hormones are just not an option for me. Like you, we were done iwth kids and hubby fixed, so I went ahead with a TVH. He left my ovaries, and we are hoping that won't make the endo act up. He told me that 75% of women do ok with just the uterus out if the ovaries are clean. I had some on my ovaries, but he said they looked good when he did the TVH, so we left them becaue I didn't want to deal with hormones if I don't have to.

I guess all that to say, do not let the doctors tell you an ablation is a cure-all with rarely any complications like it was presented to me. It needs to be done in a hospital setting, not as an in-office procedure. And please ask the dr. if they go back and double-check with the hysterscope after the ablation to make sure they got all the living tiusse out. An ablation also will not help completely with endo or adno pain. Even with fibrioids and polluyps there is a chance they will come back.

I'm glad I tried the ablation first (but that was also before I knew I had endo and adno.) I know some women who I worked wonders for, but they also didn't suffer from endo or adno. I wish you the best of luck with whatever you decided. Keep us updated!!!!

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  #4  
Unread 03-12-2007, 10:30 PM
ablation or hyst. for pain (adeno/endo)????

I had an ablation in Oct/04 and although it did help with the heavy flow, it did nothing for the pain. (endo and adeno) If your main issue is heavy periods then I say go for it, however if the issue is pain then in my opinion it would be a waste of your time.
An ablation 'burns' the uterine lining, best outcome is no more periods altogether or for most, significantly lighter periods. It does not eradicate endo or adeno.
My periods were significantly lighter for at least a year. I needed only a pantyliner with my periods lasting only a day or two. Whereas pre ablation I was going through a super plus tampon with a super maxi every hour for the first two days, then super tampons for the next five or six days. I am not exaggerating here. It was HORRIBLE. I was basically under house arrest for the first two days of my period. For the last year or so, my periods have started to increase in flow and duration. The pain has become unbearable to the point where I end up at the ER every other month.
Bottom line....I wanted to exhaust all my options before resorting to a hyst. I did and now I am ready to be done with it. I am going into it armed with information and knowledge and am at total peace with my decision.

Good luck with whatever route you choose to take. All I can say is do your research, ask ALOT of questions, then review your information and decide what is ultimately best for you.
Best wishes!
  #5  
Unread 03-13-2007, 12:04 PM
ablation or hyst. for pain (adeno/endo)????

Ablation can make adeno worse. It is not recommended for someone with adenomyosis. In Nov. I scheduled an ablation. After getting home and researching and posting on some forums (specific for ablation) I called and cancelled. I was then referred to a pelvic pain/lap clinic for non-cancerous gyn conditions. It took that dr. just a few minutes to take my case and recommend a lap hysterectomy. He is high demand and doesn't take all cases.

Heavy bleeding was not too much of an issue for me. I pass large clots and have heavy cramping, as if I'm in labor. I will find out tomorrow at post-op appt. if I had adeno or not. I was told it couldn't be diagnosed except by MRI (sometimes) or pathology after the uterus was removed. It really doesn't matter because the pain in my lower back (rt side) and rt buttocks is gone. I have not had any knife like spasms either.

Good luck to you. Only you know how much this is affecting your life. I would definitly get another opinion. I got 3. If I would have chosen the first 2 I would have had to have a TAH. Since I kept pushing I was able to have a TLH. It has been difficult getting my strength back but I had very little pain to deal with.

Sherri
  #6  
Unread 03-13-2007, 12:41 PM
ablation or hyst. for pain (adeno/endo)????

sherri428 -

I was just like you...they suspected adno, but I got the pathology report yesterday and it was a bunch of fibriods hiding in the lining of the uterus. They had caused my heavy unmanageable periods before , but my dr. said that the ablation had really made them mad and for the past 4 mos. after the ablation it felt like someone was driving daggers into my pelvis all the time. The only relief I got was from taking vicodin everyday. So yes, an ablation can make the pain worse, even if it does take care of the bleeding. I would just caution anyone to get a second opinion!
  #7  
Unread 03-13-2007, 01:49 PM
ablation or hyst. for pain (adeno/endo)????

When I went to see the pelvic pain dr. he was real adamant that I was not a candidate for ablation. My mother in law had it for heavy but pretty much painless bleeding and she swears by it. It was difficult trying to get her to understand that it works great for some but it is not right for everyone or every condition. I don't think she gets it. I have not heard one word from her since she tried talking me out of a week prior to surgery. Its okay, I have heard from dad regularly and he is who matters to me.

My suggestion to anyone considering any kind of treatment is for them to RESEARCH, RESEARCH, RESEARCH and get 2 OR MORE MEDICAL OPINIONS.

Sherri
  #8  
Unread 03-15-2007, 12:26 AM
ablation or hyst. for pain (adeno/endo)????

(((Katew)))

I'm sorry you are hurting and sorry you are losing sleep. These are big decisions, but they don't have to be made immediately. Take some deep breaths, and allow yourself some more time to think - (and not to think, for that matter.) < Not easy, I know!

I agree that doing your research and getting another opinion or two would help you with your decision. Even if you trust and adore the physician you have - getting another professional opinion might really help.

I tried several options before deciding on my hyst. When they failed, the hyst was a no-brainer. I figured if anything went wrong with my hyst, recovery or menopause, then by trying the alternatives I'd know they couldn't have been avoided. Some women are better candidates than others for the alternative treatments, but when you don't know what you're dealing with (possible endo?/adeno? -etc) then it makes the decision even more difficult. Having a laparoscope could help with an endo diagnosis - but probably not the adenomyosis possibility. Sometimes other issues factor in to the decision mix as well - Co-pays, deductibles, time off work, family & childcare issues, etc.

As your mom mentioned, most women who have a hyst do very well and are satisfied with their decision. We just don't have a crystal ball to know if we'll be among those that do just fine, or among those unfortunate few who have problems &/or regrets.

Best wishes & s to you as you decide which path feels best to you. Whatever you decide, we'll be here.

Gentle s
Beth
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