bicornuate uterus, heavy bleeding - ablation? (2011) UPDATED 2016

I'm almost 42, with a bicornuate (heart-shaped) uterus and heavy/abnormal bleeding. It has always been heavy but is now what my husband and I call "Old Testament" in magnitude. The worst happens for about 24-48 hours, in which I saturate everything.

I also have a disability and use a wheelchair, so I've been concerned about down-time from surgery. I have tried synthetic and bioidentical hormones, but they seem to cause me to bleed continuously, gain weight, and feel depressed. I also have celiac sprue, but dietary/supplement changes didn't seem to help the bleeding either.

The OB is suggesting an HT ablation, with the option of having a simple hysterectomy if I want to, since I don't have any other issues (fibroids, etc.).

I am right on my heavy day right now, so it seems really like I have to get this done. I keep losing more and more blood, and I'm worried it will get out of control. I have the anemia fairly well controlled with iron picolinate, the only form I can tolerate, but I know that's a band-aid.

I meet the doc again tomorrow to decide -- or at least attempt a decision. I have read about the procedure, and while I know that most of the time you hear from someone when it goes wrong, it would be nice to hear both sides. The bleeding after ablation and thought of needing a hysterectomy anyway are really scary.

I am also worried about long-term issues with ablation, even if it works. Does it damage the uterus etc.?

I wonder about screening for ablations, like if they know what circumstances, risk factors, etc. are likely to result in failed ablation.

I have my list of questions for tomorrow, but I'd love to hear from anyone with similar circumstances.

jojo69

I’m sorry you’re having problems that bring you here but am very glad you’ve joined and hope you’ll benefit from the wealth of information and support.

You're very wise to ask questions since a hysterectomy is a big decision, and major surgery, which should only be considered as a last resort after all other options have been exhausted. You may find further medical opinions very useful indeed, if you've not already sought them. If not, then please take a moment to visit www.givemea2econd.com to find out how a second opinion could help you.

Browsing through our Alternatives/Options Resources should be useful and you may also wish to visit www.endometrialablationdiscussion.com for more detailed information and insight regarding ablation.

Please take your time researching and we're here to support you ~ every step of the way!

Hi jojo:

How did your doc appointment go? Here is a link to our Options Success forum, where you can find some positive results from ablation: https://www.hystersisters.com/vb2/forumdisplay.php?f=216

I hope you are able to find the right answers soon. I am sending huge cyberhugs

Thanks for asking! We decided the HT ablation was best at this time, especially because I have a long scar from a Nissan fundoplasty done when I was 17 that might complicate a robotic hysterectomy. I think I'll be having it done late May or early June, based on when my ever-changing cycle ends. I am nervous but hopeful. He claims a 95% success rate with ablation because he is careful with screening candidates, but he hasn't done one on a bicornuate uterus yet.

	Quote:
Originally Posted by jojo69 Thanks for asking! We decided the HT ablation was best at this time, especially because I have a long scar from a Nissan fundoplasty done when I was 17 that might complicate a robotic hysterectomy. I think I'll be having it done late May or early June, based on when my ever-changing cycle ends. I am nervous but hopeful. He claims a 95% success rate with ablation because he is careful with screening candidates, but he hasn't done one on a bicornuate uterus yet.

How did it go?

Wow, it's been so long ago! I tolerated the procedure well, didn't even fill the ONE oxycontin he prescribed, and was back at everything the day after. However, it didn't work and may have made the problem a teensy bit worse! The doc said afterward he had his doubts because he didn't feel he could reach all the "pinched" parts of the uterus properly. I ended up back at his office right before Christmas the same year, and he just flat-out told me, from my questions and hesitancy, "I don't think you want a hysterectomy. You've found a method of keeping ahead of the anemia that works for you. It might not work forever. But I don't want to push you into the procedure because I can tell you have big doubts and concerns." We left it at that. I am 47 now, seem to be perimenopausal (fingers crossed), and the periods are irregular and not quite as bad. So I'm hoping to make it to menopause with everything still intact.

	Quote:
Originally Posted by jojo69 Wow, it's been so long ago! I tolerated the procedure well, didn't even fill the ONE oxycontin he prescribed, and was back at everything the day after. However, it didn't work and may have made the problem a teensy bit worse! The doc said afterward he had his doubts because he didn't feel he could reach all the "pinched" parts of the uterus properly. I ended up back at his office right before Christmas the same year, and he just flat-out told me, from my questions and hesitancy, "I don't think you want a hysterectomy. You've found a method of keeping ahead of the anemia that works for you. It might not work forever. But I don't want to push you into the procedure because I can tell you have big doubts and concerns." We left it at that. I am 47 now, seem to be perimenopausal (fingers crossed), and the periods are irregular and not quite as bad. So I'm hoping to make it to menopause with everything still intact.

Thanks Jojo. I'm just browsing along and found this post. Glad you're doing well. I've scheduled an appointment to get tubal and ablation done. Totally didn't even dawn on me to tell the gynaecologist that I have a bicornuate uterus and now I'm reading about it. my sister got it done without a glitch but she is not the one with the bicornuate uterus. I am hoping to speak to my doctor more. Do you think it improved your situation or no change or worse? Would you recommend it to others that have the same issue?

I think it made my issues slightly worse. However, I think a lot depends on the shape of the bicornuate uterus. I was told them that the only option was HT ablation because other types wouldn't work with bicornuate uterus. However, the doctor said he didn't think he could get to all the areas of my uterus due to its shape. I don't know if there's imaging that would help identify that beforehand. Good luck!