Acessa for fibroids 2013 - UPDATED - procedure repeated 2015

So I have had Focused Ultrasound four times, YES FOUR, followed by Acessa (Radiofrequency Ablation) for fibroids, and can tell you pretty much everything you want to know about those two treatments in particular. I am 40 years old and have been suffering from heavy periods (severe anemia), pelvic pressure, frequent urination, hemorrhoids, etc. all from my fibroids.

I began with two tiny ones and one large (at its biggest 8-10 cm) intramural fibroids. My worst symptom was the heavy bleeding, which I tried to control via various types of birth control pills, but none of them worked. When hiking on a pretty easy trail, I suddenly got very dizzy and nauseated, and had to sit down. It was discovered my hemoglobin was only a 7.8, and I actually had a blood transfusion at the recommendation of my OB, but I have since discovered that was probably unsafe and unnecessary.

I then had a vaginal myomectomy, but they were not able to remove any of the fibroids, only two small polyps. I had a terrible recovery, as I bled profusely for two months afterwards. I had acupuncture treatments, which seemed to help a tiny bit, but didn't fix the problem.

I had terrible diarrhea, especially around my periods, and had two hemorrhoids that popped out and had to be cut open (most painful and embarassing thing I have ever experienced). I had a colonoscopy and it was discovered I also had an anal fissure which took two months to go away and was also very painful. My periods were so heavy that for 10 days plus every month I bled through multiple pair of underwear and pants, onto my office chair, onto my car seat, had to leave work early with a sweater tied around my waist, etc. It was an absolutely nightmare. When dating somebody new, I had to worry constantly about whether or not they had a garbage can in their bathroom that I could dispose of my feminine products, etc. I felt like a disgusting ugly undateable mess. Forget having a sex life.

So the first good procedure I had was Focused Ultrasound. I battled with my insurance for three months and they would not pay for it, even after an appeal and a third party review. My dad footed the bill ($9,000) and I was in and out of the hospital in one afternoon. It was totally painless, and I felt better almost immediately. My periods got better in about 3 months' time. But it didn't last. And I had a weird side effect where I was leaking clear fluid all the time (apparently this can happen).

Ten months after the procedure, my symptoms had returned, the fibroid had grown, and <> hospital agreed to treat me again at no cost. This stopped the fluid side effect, and seemed to bring me back to a good place again. My cycle was much shorter and not nearly as heavy, my hemorrhoids went away, etc. This time it lasted about 14 months. Then one by one, my symptoms returned. <> was then doing a clinical trial for focused ultrasound, and even though I had already had it twice, they agreed to let me into their trial.

This time I had the fibroid treated twice (two weeks apart). It hurt a lot more, but this was because the ultrasound waves were stronger than in the past. I was still able to return to work in a couple of days, and my symptoms went away for about a year and a half. While my main fibroid did shrink to 5 cm and was much more managable, two others (which were not treated with Focused Ultrasound) had nearly doubled in size and were now pushing forward and causing heavy bleeding yet again. So this time I found out about Acessa, and a woman at <> got me into a clinical trial. The idea of being able to treat 100% of all of the fibroids appealed to me. I flew to California and had the procedure on August 28, 2013.

I was NOT prepared for the recovery. Unlike the other person who posted on here that she had no pain and an easy recovery, I did NOT. Granted, it was obviously easier than I'm sure recovery from a myomectomy or hysterctomy would have been, but I was in a lot of pain for at least five days, and I could not go back to work for a week (and even then I didn't feel ready to). The incision above my belly button hurt like hell and every time I laughed, coughed, sat up or down it hurt. I was unable to have a bowel movement for four days after the procedure, and ended up cramped up in a ball on my bathroom floor with laborlike pain for about 12 hours before giving myself an enema. The "dissolvable" stitches never did seem to dissolve right, and pieces of them were poking out and my incision got infected. The infection did not go away for four months. I still have a very ugly scar the size of a quarter which I am getting pulsed dye laser treatments to improve. I wasn't able to wear any pants with zippers or buttons for three months, as the incision is exactly where my pants button up. I couldn't wear a seatbelt for a month and a half. Nobody warned me about any of that prior to the procedure and there was almost no follow up, and no other women to call and speak to who had had the procedure. The so called "patient advocate" for <> was a raging ***** and clearly cared about nothing other than her company's liability. She was cold and heartless on the phone and offered me no support or solutions to speak of (other than having the doctor call in a prescription for antibiotics). Her dog was barking loudly in the background and her kids were screaming every time she called me back. Every time I complained about being in pain or my infection, she would make it seem like I was just abnormal and most patients did not have that problem. While the pelvic pressure did go away, I continued to bleed heavily for the first four months. It's only this past month that I saw a difference.

I have heard that Philipps company is making a new and improved focused ultrasound machine, and I would highly recommend patients to try that over Acessa, if they can get into a clinical trial or get their insurance to pay for it. Focused Ultrasound is a much easier recovery and involves no cutting (and there is no limit to the amount of times you can have it done if you need to more than once). It just needs to be perfected so that it lasts, and I am convinced that someday that will happen, and then insurance companies will start paying for it. Acessa is still a decent option, but you should know the facts and what you are getting into before you have it done.

Jeez. That does sound like a nightmare. My insurance would not cover Acessa so I did the UAE and it was more painful of a recovery than I expected. 3 straight days of pain I can only describe as freddy kruger's razor fingers pulling my inner abdomen into a ball. I won't know if my 13+cm fibroid is shrinking until June when the next MRI is. They also found 3 smaller ones while in there. Hope you get the relief you are seeking! I was NOT impressed with the Acessa's contact woman in one doctor's his office. Terrible follow through and rude. Not impressed.

Wow vandertyson, it sounds like you've been through A LOT!!!!! I'm sorry that you've had such a difficult time and what seems like a bunch of bad experiences!
I flew to California and had Acessa surgery August 28, 2013 also. It seems that my experience was quite different. I hope things start looking up for you

Wow. Vand .. When I read the details of your recovery from the Acessa procedure , I chuckled. This is/was surgery. Laparoscopic surgery. I was off work for three weeks. I couldn't wear jeans for weeks. I was sore and bruised and my belly button hurt. My hubby had to help me in and out of bed for three to four days. I was constipated for six days All normal after effects of laproscopic surgery.

I'm sorry you had a painful recovery and no one advised you of it and you didn't get the info beforehand to advise you. But you did say your symptoms are improving. Right?

I would think that's worth it.

My symptoms are improving too and I also realize it may be a year or more until the fibroid has degenerated all it will. Mine was 13 cm.. acessa only shrinks them down to about half their original size.

I would redo all of it in a heartbeat. I hope you keep getting better!

So Hardin5, was bleeding your main symptom, and if so, did you get relief and lighter periods quicker than I did? Did Dr <> perform your surgery? Did you feel prepared for the recovery? I have looked online every day for months and so far you are the only person who has had Acessa done that I have had contact with. It's like <> did a clean sweep of preventing patients from comparing notes. In fact, their patient rep <> even promised me she would put me in touch with another patient but never did so. I asked Dr <> to send me his notes from my file, and he wrote that I told him my bleeding was much less since the procedure, but those words have never come out of my mouth. Kigaro, I can still feel the big hard lumps of my fibroids in my tummy, so I don't think they have gone down much, and I still have at least one day of super heavy flow - changing an ultra sized tampon and pad every hour, bleeding onto my clothes and sheets. With focused ultrasound, not only was my recovery much faster, but my relief from these symptoms was too. UCLA treated me much better than <> has, preparing me for what to expect, and being honest And helpful in wanting me to get relief. I have never felt that from <>.

My main symptom was heavy bleeding. I just finished my fourth period since surgery, it was the first period that I noticed a significant difference in bleeding. Yes, the doctor you mentioned did my surgery. Yes, I felt prepared for recovery.
I did A LOT of research about Acessa before the surgery, in upward of 100 hours of research. I had been in contact with 3 people from the medical company and I even reviewed the clinical trial study results...how severe symptoms were before surgery compared to after, the length if time before noticing a difference, etc. so I felt I knew what I was getting into. I knew going in that this was not going to be fixed immediately after surgery. When i went for my ultrasound 2 months after surgery my fibroids were only slightly smaller than before, they were just beginning the shrinking process. I go for another ultrasound March 11. They sent me all of my info...surgery reports, etc about 4 weeks later.
I had some pain after surgery but extremely minimal. 24 hours after surgery I was laying poolside and going out for dinner, 48 hours after surgery I was walking the hills, the third day after surgery I was flying back to Arkansas. Surgery was on a Wednesday, I returned to work the following Tuesday.

Sounds like our experiences were very different. I really am sorry yours wasn't as plesant as you expected and hoped for.

Wow, well I certainly appreciate you sharing this with me! I did research on my own hours on the Internet, but I found the studies that were published to be very technical and none of them broke down anything into lay terms - just numbers and percentages and no real details. I am AMAZED that you were poolside 24 hours later. I was in severe pain. Perhaps yours were smaller? How many did you have and what size/kind/location? Is it an age thing? I had mine on a Wednesday and went back to work on a Tuesday as well, but I did not feel like I should have. I knew the bleeding might not be better right away, but I thought by the third or fourth cycle it would be. Did your belly swell? Mine was swollen for two months. Did your stitches dissolve quickly? I haven't had an ultrasound to check on the size or if they've shrunken yet, but I guess I should, or better yet, an MRI. I'm about to have my sixth cycle, and am crossing my fingers I spoke several people from Halt in the weeks before the procedure and after, but it would have been much better to speak with actual patients who had been treated and who shared my symptoms. Thank goodness for the Internet, or I still wouldn't have communicated with anybody who'd had it done! Thanks for sharing.

I was surprised to hear Hardin was pool side too! I was still needing help out of bed the next day

Well, got my sixth period since Acessa today, and there is ZERO difference in the amount of heavy bleeding. Sigh. I just can't believe it still hasn't helped! Right before my period, I can still feel the big hard lumps of my fibroids in my belly, making me think they haven't shrunken in the least bit. I had $16,000 worth of iron injections last fall, and I'm literally watching them drain down the toilet. It's all so upsetting. After TEN years of exercising so many different less invasive options, I think I'm finally going to have to get a hysterectomy. It makes me sick. I really thought I could preserve my uterus and I liked the possibility of some day having a child, but ten years of bleeding and anemia is just too long. I think I'm done.

im in the same boat as you tried everything gave acessa a shot as my last option before hysterectomy I am 4 months out and cant tell if my periods are better as i havent stopped bleeding since been off and on provera no help there and the dr doesnt seem to know what to do with me finally went for a third opinion and was told hysterectomy asap the follow up care from the dr who did the acessa was useless every question was met with we dont know and lets wait and see Im done waiting hysterectomy scheduled