After UFE

Women's health
1

I am grateful that this group exists. It really helped me to make decisions that were so difficult, and I promised I would share to help too.

I had always had a little fibroid, since I could remember. Luckily, I had a baby and was not impacted by it at all. When I turned 45 though, all hell broke loose.

It started by a regular ultrasound, and learning that I had grown another fibroid, and my original one tripled in size. The doc said it was about 6 cm - and the other one was small. He told me not to worry, and to wait. Can I share, hindsight is 20/20 & waiting

cost 2 years of agony.

The first year went by, and I waited. But I couldn't help but notice how "large" I was getting. At first, I attributed it to middle age and thought that this is what happens when you get older. Truth is, I workout regularly & always eat healthy, so in my mind, middle age made sorta sense. That was how the first year went.

A couple of months after my 46th birthday I got my first bladder infection. It was March and I remember being so uncomfortable - running to the school's washroom literally, 2-3 times an hour. I am a teacher so I was really lucky to have good support to cover my classroom.

I took the antibiotic, and it helped, but it came back in April, July, August and September. Each time the doc prescribed me antibiotics. Convinced it was resistant to the antibiotics, I asked the lab to provide me with the exact bacteria name so I could ask my doc for the right antibiotic. I became my own doctor at that point, and started researching. ibaskef my docif the fibroids could be having anything to do with my utis. He said, doubt it. I shared with him that I didn't understand how I could be gaining so much weight, when I eat healthy and exercise all the time? He told me to cut out carbs. I literally begged him to send me to a gynaecologist for an opinion my fibroids. So he did.

The gynaecologist didn't even physically exam me. He read my ultrasound and told me that the only surgery he would consider was a hysterectomy, because just cutting out the fibroid tissue would be too "morbid". Stunned, I booked for the hysterectomy six months away.

November came and I got another uti. The doc put me on antibiotics, and it went away. I had about a two week turnaround, and it came back! I went back to the doc and even though my test came back positive, he told me he wouldn't treat the infection. I was told to take Tylenol and wait for my own antibodies to break it down. So I did.

By December, I had a mini seizure and ended up in the hospital. While there, a urologist put a camera through my bladder. It felt like rape - it hurt so badly. It was there though that I saw my bladder on a tv screen, with a huge fibroid pushing down on the wall! The doc shared that my uterus was healthy & he couldn't understand why my gynocolgist wouldn't recommend ufe. It was later that I understood that the economics of removing a uterus is much more profitable for a gynocolgist then trying to save it.

So I went for ufe. It was March when I was able to go. Here is how it went:

The procedure itself was okish. The uncomfortable part was when they attached a clamp in my femoral artery. It felt like spaghetti being stretched, but not in a good way.

Recovery over the first week was horrible. I think it was made worse by the opiates they gave me. I developed a reaction to them and needed to be put on oxygen. I do remember some cramping, but for the most part, I have very little awareness because I was so out of it.

After I stopped the opiates, I ended up regaining my mind a bit. By the middle of the second week, I tried to even work out - but I was not good and decided to wsit the extra week. I began working out after a full 2 weeks, going slow and working my confidence level up because I was very afraid of the clamp. I felt it while I worked out (really gross).

I had my normal period two weeks after the procedure. Loads of severe cramping, well contractions really...I saw a bit of grey matter in the toilet, and I figure it may have been some of the fibroid. It makes me feel yucky thinking about it too much. Anyhow, normal blood flow, but extreme cramps.

My tummy went down before I left the hospital. Not all the way, but siginificantly that people noticed. It has been 7 weeks now and I am literally melting without trying to diet. I have shrinking pains because my hips are contracting. Again, I'm not trying. I think it is a combination of being able to pee properly and suffocating the fibroids.

I was supposed to get my period again last week, but all I got was severe cramping. I mean, contractions. Still no period & I am thinking I may have just skipped & I hope that it will come back.

On a brighter note, I have had no bladder infection for 7 weeks!! I can pee again!!! It has not taken away all the discomfort I have had with my. Ladder but about 80%. That's good enuf for now

Good luck with your discison. Know that it is getting better for me and I trust it will continue. I will keep you posted !

Best,

M.

2

Wow!! Thank you for sharing your story. I am so grateful I stumbled across this place... many women helped me along the way. I'm 7 weeks post op myomectomy. I was diagnosed with 4 small fibroids however when my doc went in he found one large one pushing against my bladder 😲Size of a grapefruit. (Reason for the bulge). He removed it and decided to leave the others because they are close to my Fallopian tubes. I'm 40 with no children and he said Removing them would compromise my Fallopian tubes because of the location and scar tissue. He also did not want to cut into my uterus So I still have a few :-(. I pray they stay small and I realize that if I want a child I need to to move turbo quick. Good luck with your continued recovery and thanks for the info.

3

Wow! I too had uti's more often than normal and my dr (male) insisted I wasn't wiping properly. He kept telling me I had to be wiping from back to front. I was relieved when I was told I had fibroids causing my problems. I have a 6cm fibroid four 4.5cm fibroids and 10+ smaller ones. Too many to really count on the ultrasound I guess. I have had a myomectomy in 2006 to remove four fibroids but they do just come back bigger and bladder than before. Your post was very informative and I hope you continue to improve. Your bladder issues were awful, way worse than mine seem to be. I am scheduled for a hysterectomy on May 16th. Hoping I am pain/problem free once this is over.

4

Thanks so much for sharing and glad things are working out OK, it's so difficult to decide what to do when every gynae seems intent on doing a hysterectomy! I have been taking Esmya on and off to shrink my fibroids, but every time they have grown back. Too numerous I think for any myomectomy, I am 59 so it's unlikely to be offered. My bladder is fine but when they grow I get bloating, back pain and bleeding. Some people seem to have good results with UFE and others not, so again it's a difficult decision.

5

Update 8 weeks post ufe:

Well, I got my period. Albeit, a week late, but I am grateful that it made its regular appearance. I don't plan on having any more children, but just having my period makes me feel like I am functioning like I should.

The period itself is pretty clotty, and quite heavy. I have had severe cramping, but I figure some of the fibroid tissue is sludging off. I still don't have any utis and I can't tell you how great it feels!

So far, my tummy has probably reduced about 20%. Keep in mind though I had stretched to the size of a 7 1/2 month pregnancy. So it seems like a lot, but there is definite room to continue.

I'm amazed that there isn't any follow up with the surgeon until 3 months post op. It seems that although there are no visible scars, there are a lot

of changes happening to me on the inside. 3 months is a staggering amount of time to be left on your own.

I will definitely keep you posted!

6

Thank you for your kind words. I appreciate them greatly.

I want to share, I am not a doctor - but I learned that consuming flax seed (fresh ground/organic) helps to bind with the excess estrogen in your system. Fibroids are estrogen driven, and so it may help to shrink them.

I tried this, but it wasn't too successful. It slowed mine down though.

Good luck keeping them down. If they do start to grow, I would act very fast. Mine tripled in siZe in a year.

Best of luck

7

Yeah, those amazing male doctors who tell us to wipe properly....I gotta say, after the pain I endured it is really difficult for me to trust another doctor now. Mine told me to cut out carbs to lose weight. Honestly, I didn't even eat any! Lol. Bunch of crackers.

I'm sure your hysterectomy will go well. Unlike myself, you won't have to wait to feel a better bladder. Keep strong and good luck. I will be thinking of you xo

8

Hi Christine,

It is a horrible decision and a very difficult one. Funny, in doing research I learned that high frequency ultrasound is another option - using sound waves to break up the fibroid tissue without any intrusive measures. You literally walk out with out a single incision.

It isn't done yet in my country because again, it is all about how docs make more money taking out our uterus'. But it is something that I'd definitely do if it was available in my country.

Good luck in whatever you decide to do. Keep me posted!

9

I'm really cautious about taking flaxseed now - after my fibroids were first diagnosed I used it all the time as I wanted to lose weight and eat a low-carb diet. Well the diet  worked but the bleeding never stopped and my fibroids grew really quickly. There's a huge amount of conflicting advice out there about flax and other phyto-oestrogens, some women saying they have shrunk their fibroids using it and others the opposite effect. Also some medical sites suggest it is beneficial and others say not. 

10

Hi Christine,

You are right, there is so much conflicting advise it leads to us to try and figure it out. Isn't it sad that this is not a priority of sorts? So many women get fibroids but they still don't know what causes them!

About the flaxseed, did you only take it for the first two weeks of your cycle, or all the way through?

11

I took it all the time - ground and used in a breakfast mix with cream and egg. It was very difficult to tell when my cycle was anyway, I was bleeding most of the time, and was peri-menopausal.