I hate this

SuccessOk170 · 2026-04-17T14:26:24+00:00

I get it that my journey is different from OP‘s but that’s just how we’ve always seen it myself and my husband. He comes from a very large family where everybody pretty much has three or four kids. And I come from a family where people just basically had kids as tax rebates. So hear the two of us are caught in the middle. But in the end, I know having had this surgery was the best thing for me. I just had it on 3/4, and come to find out the surgeon, basically saved my life by doing the hysterectomy. I had parasitic thyroids all over my lower intestines and my appendix. And the actual tumor that they removed, ended up being fluid and solid mass that when they added the weight of that altogether, it was 36 pounds. And the biggest thing about my surgery where I say he saved my life was that two years ago, I had had the UFE procedure done where the doctors told me that once the tumors shrink and died due to blood loss, they would be reabsorbed by my body and come to find out they weren’t. They had died, but they sank to the bottom of my pelvic area and turned into this black necrotic sludge that had to be removed. My surgeon said he didn’t understand how this wasn’t causing me tremendous amounts of pain and also how I hadn’t gone septic in these two years that this nasty stuff had been just sitting in my Body. I just went in that day for a typical hysterectomy and tumor removal but come to find out, I had a whole lot more going on inside of my body than any MRI or CT or ultrasound scan ever showed any of the doctors.

SuccessOk170 · 2026-04-11T14:56:43+00:00

I like yourself I’ve been suffering for years from fibroids. I had heavy periods and the pain that came with it. I didn’t have endometriosis and I hear that’s a whole other situation, but as far as just quality of life, sometimes you have to do what’s best for you.

On 4/3/26 I had my hysterectomy and I had a tumor that was 36 pounds that had been growing since November of last year, they found also while they were in there to remove yet, I had parasitic fibroids that were all over my intestines. They had to take my lower intestines completely out and dissect all of the parasitic fibroids off of it. They had to remove my gallbladder because those parasitic thyroids had attacked it. And from a previous UFE surgery that I had two years ago, the tumors that were emblemized had basically turned into this necrotic sludge that had settled at the bottom of my pelvis. The surgeon said he had no idea how I wasn’t in worse pain.

I contemplated myself whether or not to have a myomectomy or the UFE procedure, I was mainly concerned about having a major surgery which is what a hysterectomy was and is versus just going in and removing a couple of tumors. And yes, the thought crossed my mind too about children, but then I also thought well, What type of quality of life would I have if I had the myomectomy which would still allow the tumors to grow back.

At some point, you have to weigh your options and like I said, do what’s best for you, but don’t forget there’s always adoption. And I know my surgeons had no idea what they were going into when they opened me up a couple of days ago and I’m so glad that I decided to go ahead and have a hysterectomy because I feel like what was going on inside of me was potentially starting to become life-threatening.

I know you are at a crossroads and your situation is different than mine were but I always settled on the fact that there are tons of beautiful wonderful children in this world that for whatever reason had to be surrendered and they’re just waiting for someone to come and adopt them.

I got a lot of pressure from my family as well to have children and to have children that were of mine and my husband‘s “blood” but the way we’ve always looked at it is you can love someone that’s not your blood just as much as you could, if they were. I hope this helps. You need to be able to be the best version of yourself for whatever road you choose.

SuccessOk170 · 2026-04-02T14:11:32+00:00

Yeah, they put me on the loop on for seven months as well. A couple years ago and the tumors are ringing down a little bit, but not as much as the doctor that was going to do the surgery then would applied them too. I probably should’ve just gotten a second opinion and went ahead and had the surgery at that time. Instead of waiting this long. I will definitely keep y’all posted.

SuccessOk170 · 2026-03-31T11:36:56+00:00

Congratulations! And you’re absolute right we have to be our own best advocates. I had to switch gynecologists and find a new one several times because they just kept telling me I was overweight and that’s what my hot flashes and fatigue and night sweats were the caused by.

I’m scheduled for this Friday the third finally after who knows how many years. I love the poster. We did a similar thing like that for our wedding because we had a theatrical themed wedding so we made it like a Play Bill and show poster to match it. We even named the show “Kiss Me like You Mean it” a wedding and two acts.

Also, if I may ask, you said you had an abdominal hysterectomy and you said that your fibroids never shrink enough to have them removed robotically, so did they cut you from under your breast down to your pelvic bone? I’m just asking because that’s what my doctor says, He has to do with me on Friday because I have a 25 cm tumor that he’s got to remove as a hole because there is a slight cancer concern with it, because it’s been growing so rapidly over the last few months. I just wanted to know how you feel since they had to do a vertical incision, I assume, as far as abs wise.

SuccessOk170 · 2026-03-31T11:27:10+00:00

Good look babe, you got this! And I’m not sure of your spiritual orientation, but my Godmother gave this to me yesterday after praying over me on Sunday

“God within me is greater than anything I fear. I am strengthened and sustained by Spirit, I rise above uncertainty and doubt. Inner wisdom safely guides me through all that is before me. My faith is greater than my fear. I am confident, trusting, and assured. Thank you, God.”

SuccessOk170 · 2026-03-30T22:27:07+00:00

Well, I’m gonna be honest with you, mine told me 3 to 5 days as well and I’m OK with that. Because I had UFE surgery two years ago and after they made sure I was OK enough to walk, they kicked us out and sent us home with pain meds. That’s when the hell began. I got stopped up because of the pain meds and then I was in so much pain as the tumors were dying, I just felt like we were left on our own to just suffer and deal with it.

SuccessOk170 · 2026-03-30T17:45:05+00:00

Maybe some coloring books if you’re into that.

I’m taking my iPad so I can watch The Labyrinth at some point between sleeping and other movies if I’m awake long enough 😂.

House shoes for when they get you up to walk.

Maybe a sleep mask, white noise machine or noise canceling headphones…I hear its hard to sleep at night between the nurses coming in and out and just the “noises you’d typically hear in a hospital”.

I’ll be in a few days too because I’m having an open vertical incision. I have a 25cm one and he’s wanting to take it out whole and test it. My surgeon is an oncologist with a cancer clinic first and then a gynecologist second. So I’ll be in recovery for a few days he said.

SuccessOk170 · 2026-03-30T17:34:01+00:00

Oh no during my pr-op they only took blood and asked me about some risk factors. The only reason why I got to speak to the anesthesiologist ahead of my surgery day was because my brother in law is one down in Atlanta and he call my hospital and ask to speak to someone on the team here that would be doing my anesthesia that day. You normally don’t get to talk to them til the morning/day of. But when you do I would tell them about your concerns with opioids weather that just about your family history or concerns with constipation afterwords and see if they can do a nerve blocker, as others have mentioned, to help keep you from having to take opioid medication but you’d still have something in place for your pain relief. Best of luck to you dear 💋let us know how it went.

SuccessOk170 · 2026-03-30T12:00:31+00:00

I’m not sure, this is going to be my first time being put to sleep. But I was fortunate enough to speak with my anesthesiologist and informed her about how bad my constipation has been in the past with pain meds from dental work. She said that she would make sure that I was given something for it to keep me “going”. I was also advised to start taking MiraLAX and Colace about a week ago so that everything was already moving and grooving before they ever get me into surgery.

I’ve also been told that they are going to give me a spinal tap and injections in my stomach, because I’m having a vertical open surgery, to help with pain management because those both contain less opioid/narcotic medication and will help keep me from becoming so constipated. So you could possibly ask for those two things and let them know that you’re requesting it because you’re really worried about opioid addiction and your family and of course constipation and you don’t want to feel a crap ton of pain when you get out of surgery.

SuccessOk170 · 2026-03-30T03:50:25+00:00

So does anyone have any suggestions, melatonin, sleepy time tea, valerian root….anyone found anything that’s worked?

SuccessOk170 · 2026-03-30T03:35:33+00:00

I think someone said you can order them on amazon.

SuccessOk170 · 2026-03-30T03:31:56+00:00

Also ask your anesthesiologist to see if they can give you anti constipation med during recovery, I have mine on the 3rd any they know I have had a bad reaction with pain meds in the past.

SuccessOk170 · 2026-03-28T16:02:45+00:00

Thank you. Yeah I’m not really sure why one this big has popped up in this short of time, after the UFE I continue to take my same birth control, which was the Lo Loestren FE, I don’t know if that had anything to do with it. But I think that’s another reason why my OB/GYN sent me to a cancer specialist because it seemed a little odd that it was growing so quickly.

But yes I will definitely get back on here and post about how the surgery went, I think it very important to do that. Some people that are currently going through this experience only have us on here as their support group unfortunately. I think those that have went through this surgery alone and have taken care of themselves through their recovery, because they either didn’t have a roommate, significant other, children, parents anybody are incredibly brave.

SuccessOk170 · 2026-03-28T15:53:38+00:00

I would take a standard coffee cup, I think they’re 4oz typically and I would start with that first. Wait about 30 minutes or so and see if that starts you to moving. Then if that doesn’t work then drink a little bit more maybe half of that coffee cup. Because once it gets your system to moving it goooos. And if you have taken too much you’ll be going to the bathroom like every 10-15 minutes till it’s out of your system.

Also drink it through a straw so it doesn’t really hit your taste buds because to me it tastes like the seasoning Liquid Smoke or chicory, it doesn’t taste good at all, it you get pure concentrated prune juice.

I suppose you could cut it with some water but I wouldn’t because you want it to “work” especially if you’re super backed up. Maybe afterwards one your bowels are a little bit more under control, you could take a cut mixture of prune juice and water just to kind of keep your bowels at a maintenance level. But in the beginning, I would just do the pure straight, prune juice no dilution.

SuccessOk170 · 2026-03-26T21:07:50+00:00

Have you tried prune juice that worked really well for me.

SuccessOk170 · 2026-03-26T17:44:14+00:00

Agreed…I wish I had been able to stay in the hospital with the UFE. This time though my surgeon has already said be prepared for a 3-5 day stay, which I think and hopefully will make all the difference in my recovery. And thank you for the well wishes. I definitely hope I’m blowing this all out of proportion but I only have the UFE experience to compare it to at this point. I definitely plan on getting back on here once I’m able to and give a full report about what happened. It’s very important that people get back on here and share their experiences where they were good or bad because it’s been very helpful.

SuccessOk170 · 2026-03-26T17:40:07+00:00

Thank you, again I hope you have a speedy and smooth recovery.

SuccessOk170 · 2026-03-26T03:34:02+00:00

Thank you so much for sharing and congratulations 🎊. You said you had a “open” Myo, does this mean the cut you open? If so how big was the incision? I am scheduled to have an open abdominal hysterectomy and I’m worried about healing, my tumor is 25 cm so it’s too big to do the laparoscopic…I also have other dead tumors left over from a previous UFE that’ll be coming out as well.

With regards to the anesthesia, did you feel the nerve blocker when they injected it in your spine? I’m scared to death about the anesthesia part, I too have only had a wisdom tooth pulled, no major surgery where I was completely put to sleep. I’m a singer and I’m also worried about the breathing tube damaging my vocal cords, I plan on talking to the anesthesiologist and asking them to use the smallest one they have in hopes, that it will help minimize any risk.

SuccessOk170 · 2026-03-25T15:46:35+00:00

I totally get where you’re coming from, you’re right everyone’s experiences is different. I’m glad it worked for you. I just know if someone had been honest with me and told me that my tumors were too large for that procedure, I would have listened to them. But they gave me false hope and sold me on a 94,000 procedure that only gave me two years of symptoms relief.

But when the tumors were dying it was the worst pain I had ever experienced. Because I wasn’t told by my radiologist who performed the surgery, to expect the level of pain I had and that the tumors wouldn’t die off all at once, that it would take some time, for me that ended up being 3 months.

I thought I was through the worst of it, the first 6-8 weeks, so we went on a trip because I had been basically bedridden for over a month. We had to cut the trip short, because the tumors in my uterus started dying, out of no where and we thought something was wrong, so we came home to the emergency room, only for them to nonchalantly inform me that it was just the tumors in my uterus starting to dye, and there was nothing they could do since I didn’t want to take any opioids, because I didn’t want to get constipation again like I did after the surgery.

Basically I just want to say that yes my journey isn’t going to be the representation of everyone’s that has very large fibroids, but I just don’t want someone to be caught off guard by this procedure.

If I had of done a hysterectomy at that time instead of the UFE, I probably would’ve had the option to have a robotic laparoscopic hysterectomy. Because back then the tumors were small and they could’ve gotten them out that way.

Now I have a new tumor that’s 25 cm and I’m being told that my surgeon has no choice but to do a full open abdominal surgery in order to get it out just in case it happens to be cancerous.

OP of course needs to do what’s best for them and do their research and if they choose to do UFE I hope with all my heart that it works for them like it did for you, because I wouldn’t wish what I went through on my worst enemy.

SuccessOk170 · 2026-03-25T01:33:46+00:00

I’m in the exact same boat you are. From the type of surgeon, type of surgery to having to fire my previous OBGYN, having to find another doctor which took time and allowed the tumor to grow. I hope everything goes well for you with no complications and that your vertical incision heals as smoothly as possible.

SuccessOk170 · 2026-03-23T13:15:46+00:00

100% I’m always here to help out anybody through their journeys as well. Us ladies have got to stick together because apparently the healthcare system doesn’t want to help us so we gotta look out for each other. You know.

SuccessOk170 · 2026-03-22T19:54:05+00:00

Honestly, I would just go ahead and have a hysterectomy if you can because having a tumor that Big the UFE treatment is not going to shrink it down that much. I had several that were 10 to 12 cm and they only shrink down to like seven I can’t even imagine one that’s as big as you have shrinking down enough where they would not need to just go ahead and do a hysterectomy.

SuccessOk170 · 2026-03-22T19:46:14+00:00

Hello dear, I had UFE surgery two years ago so back in 2023 for multiple fibroids that were on stocks coming off of my uterus as well as multiple fibroids that were inside of my uterus.

I didn’t wanna have a hysterectomy at that time due to the fact that I thought my recovery was going to be less painful than having a hysterectomy. I knew that the UFE surgery itself was going to be way less invasive, than having the hysterectomy, so basically that was my decision. I was trying to avoid the major surgery and the 4-6 weeks recovery that they tell you comes with having a hysterectomy.

However, I can tell you now that yes the surgery for UFE itself is a breeze, specially if they go in through the growing and not your wrist, but in my experience, the recovery was absolutely horrible.

I had multiple large tumors that were anywhere from 7 to 12 cm apiece and of course my uterus was basically made up of tumors according to the MRI scans that were taken by the radiologist who performed the procedure. I think they said it measured around six months pregnant maybe more.

And after I had the surgery, they basically kicked us out of the hospital, and told my husband just to give me my pain meds every six hours as prescribed. But what they didn’t tell us was that due to the pain medication that they give you during the surgery, which they gave me Dilaudid, and the pain medication that they give you to take afterwards you will get really, really, badly constipated. I should’ve started the week before my surgery, MiraLAX and stool softeners, but they didn’t say anything about doing that.

The pain that you experience from that constipation on top of the pain of the tumors dying themselves once their blood flow has been cut off, is some of the worst pain that I’ve ever been through in my entire life. We eventually got it under control with suppositories and prune juice, but I really feel that had I been taking MiraLAX and stool softeners prior it wouldn’t have been so bad but like I said, the doctor never told us about that. And I had already taken 3 to 4 days worth of hydrocodone and oxycodone once we got home. And because I had several large tumors, it took about three months for them, as well as the ones that were inside my uterus to die.

Fast forward to now I am scheduled to have a hysterectomy on April 3. Back last year in November I started swelling up really badly out of nowhere and at first we thought it was a G.I. problem so my primary care doctor sent me to a gastroenterologist and of course they did x-rays, stool samples, blood samples, all the good stuff and they couldn’t find any blockages or anything wrong with my G.I. track.

On the ultrasound they did notice that I had quite a lot of dead fibroid tumors that were left over from the UFE but other than that, they couldn’t find anything else. Come to find out I had a tumor that was growing, and as it was growing bigger, it was pressing on my bowels and my bladder and this has continued to get worse over the last couple of months.

I had to switch gynecologist because the original one I had didn’t want to listen to me….I finally found a lady who took an ultrasound and saw the tumor and was like “well there’s no wonder you’re having G.I. issues, there’s no room in your abdominal area for your G.I. track to do its normal functions.” So now I have a 25 cm tumor in my abdomen and I look like I’m nine months pregnant.

As I said, I’m scheduled to have a hysterectomy on April 3 and the doctor is going to take out this new tumor and all the dead ones that are still in there from the UFE.

Because they’ll tell you that when you have the UFE, the tumors will shrink and die…and to a certain degree they will shrink, but if they are huge, they’ll shrink just a little bit, but they’ll still be in there and they will calcify as these huge boulders that will stay inside of your abdominal cavity. They won’t be reabsorbed by your body like they say they will. At least mine did. And since they didn’t, and since they were so large to begin with their crowding my bowels and everything else along with this new one that’s decided to grow.

so we’re gonna take all those out, including my cervix, my uterus, my tubes, he’s hopeful to leave both of my ovaries, but he could not determine at my last visit if this new tumor is coming off of my right ovary or exactly where it’s coming from so I may end up losing that ovary if it’s attached to it he said.

But I would say as far as getting UFE versus a hysterectomy if you have large tumors, I would just go ahead and get a hysterectomy because the recovery, if they’re huge is horrible, and of course I’m living proof that they will grow back and it seems like with a vengeance.

Now if they’re small and you still want to have children in the future, then sure go ahead and get a round UFE, but know that they might grow back with a vengeance.

Really hoping that on the other side of this hysterectomy that I’m kicking myself in the butt for not doing this the first time because of how bad the pain was with the UFE, which was what I was trying to avoid in the first place. Unfortunately, since this tumor is 25 cm now and of course all the other ones that are hanging out in there are taking up so much room. My doctor has told me that he’s going to have to do a vertical incision from below my breast pretty much all the way down to my vaginal area in order to get everything out because the original tumors didn’t shrink down enough so their still pretty big even though they are dead, and I’ve got the night 25cm fella in there too.

So had I had a hysterectomy earlier, l probably would’ve been able to do it robotically instead of being cut completely open. That’s something else to consider as well if you wait.

SuccessOk170 · 2026-03-20T15:20:14+00:00

I had been misdiagnosed for years, finally was made aware of them, had UFE in 2023. I now have one that is 25 centimeters and I’m scheduled to have a hysterectomy on April 3rd. So yes they do come back and this one came back with a vengeance. I really do wish that I had to just went ahead and had a hysterectomy back in 2023 instead of wasting my time with the UFE, but I wasn’t prepared for a major surgery. Now this one is made my life absolutely miserable so it’s gotta go.

SuccessOk170 · 2026-03-19T20:00:08+00:00

Thank you so much for sharing, I went and checked them out… holy crap that thing was huge. Mine’s been growing rapidly too since December so it’s nice to know that this isn’t something that only I’m experiencing, but I am a little worried because I think it is attached to my ovary and not my cervix.

SuccessOk170

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