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Treating my fibroids - coil or surgery Treating my fibroids - coil or surgery

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Unread 09-14-2021, 04:56 AM
Treating my fibroids - coil or surgery

I'd love to hear from ladies on here who have struggled with fibroids and had to make decisions about how to deal with them.

I've had dreadfully heavy periods for over 5 years, was on Tranaxemic acid and Mefenamic acid for several of these but these have now stopped working and I'm now on the mini pill (whilst I wait to get something properly sorted). I'm also anaemic because of the bleeding so am on Iron tablets.

I've been recently diagnosed with at least one 4.5cm Fibroid and a bulky fibroid uterus 15weeks size.
I'm waiting for an appointment to have a hysteroscopy to find out more but my currrent options are getting a mirena fitted, Novasure/TCRF, uterine artery embolization or hysterectomy.

I'm wary of the mirena because I had one fitted that perforated my uterus and escaped into my abdominal cavity. I know it's the least invasive but can be painful to fit and may not solve the issue.

The other 3 elements are reasonable operations and I'm looking for other people's experience to learn more. I don't want an operation where there is a chance the **** thing grows back and I have to have another op.
I don't want anymore kids and I don't need contraception. I just want my heavy periods to stop.

I'm based in the UK.
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Unread 09-14-2021, 07:38 AM
Re: Treating my fibroids - coil or surgery

Hi Rainbowferret

Welcome on board. I’m also in the UK. I had a 25 week uterus and fibroids that were 13cm when they were removed (after Prostap to shrink them a bit).

You’re likely to have a longish wait on NHS for surgery and they usually want to have tried the noninvasive stuff first. There’s no harm in trying the coil again while you’re on the list (it ticks a previous treatment box). Although the fact that one escaped before would make me wary too. Did the fibroids stop it embedding properly?

Can’t comment on ablation as it was offered to me due to the size.

I thought about UFE but my consultant felt that due to the size, it might not shrink enough to reduce my pressure symptoms. A grapefruit bouncing on the bladder isn’t that much better than a mango. If it had been smaller (ie likely to get to lime size), I might have gone with it alongside some active monitoring. In theory, that would allow any future occurrence to be dealt with in a less invasive fashion.

I considered myomectomy but I’m about to take redundancy and become self employed so, like you, I decided that if I was having surgery, I’d rather only recover once while I have good sickness cover. I’m 3.5 weeks out from an abdominal hysterectomy and recovering well, slowly but steadily. I was very nervous but feel I made the right decision and expect to be able to get back to normal life towards the end of the year. The list of side effects can be daunting but after careful reading, I realised that they are relatively rare and that many can be mitigated against with diet, exercise, care.

Do shout if you’ve got any specific questions I can help with.
Unread 09-15-2021, 07:43 AM
Treating my fibroids - coil or surgery

My uterus was 22 week size, and my largest fibroid was a jumbo grapefruit pressing on my bladder. When my surgeon recommended a hysterectomy, to say that I was shocked would be a major understatement; I asked if UAE or a myomectomy would be possible, but was told that because of the fibroid's size, and because it was deeply embedded inside the uterine wall, a hysterectomy was my only option. If I could turn back time, I would have sought a second opinion from an interventional radiologist, who would have the specialized training to determine if UAE would be feasible for me. As it stood, I ended up with a hysterectomy, preceded by 2 monthly shots of Lupron to shrink the fibroids so I was able to have it done laparoscopically; if you're being told that you need an abdominal procedure, then I recommend seeking an additional opinion from a fibroid specialist, like my surgeon, who may be able to offer laparoscopic surgery as an option. My main post-op issues were related to the pain medications messing up my GI tract, which quickly dissipated after I was able to discontinue them around the second week. I recommend that you do your research, and seek out additional opinions, so you can decide on what's best for your individual situation. Best wishes for whatever you decide!
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Unread 09-15-2021, 10:19 AM
Re: Treating my fibroids - coil or surgery

Good Morning/afternoon/evening Rainbow,

I have two fibroids, one the size of a lemon(7cm) which with its placement, and size was not a candidate for surgery, and a much smaller one that could be removed. I also have adenomyosis, and I have a muscus sac on my cervix. I really did consider UFE, and was almost 100% certain that would be the treatment I chose. What changed my mind was that it was almost impossible to get my bleeding under control. I’ve had 4 depot lupron shots (one a month), a blood transfusion, and 4 iron infusions. I tried birth control to help get my symptoms under control (causing blood clots in my lungs), but that just seemed to honkerblonk off the fibroids and uterine lining since my bleeding would not stop. I was going to try the Mirena, but my doctors were concerned that it wouldn’t sit properly since my uterus was so enlarged, and because of where my fibroid sat. My doctors also believe that the fibroid is sitting on a vessel or something because my heart rate is elevated for someone who is not currently anemic. Who knows. I chose a hysterectomy, which is in two days because I, like you do not want these growths to ever come back. I also never want to almost bleed to death again, and I don’t want to have to repeatedly heal from surgeries. I’ve read a lot of post on this site, and it’s not for everyone. Some want to exhaust all options, some of them work and some don’t, some skip right to hysterectomy. It all depends on what you’re comfortable with. Get a second opinion, do a lot of research on what’s available to you, ask a lot of questions. I could t have made my choice without the knowledge I currently have, and without my bleeding to push me towards hysterectomy.
Unread 09-21-2021, 09:40 PM
Re: Treating my fibroids - coil or surgery

Hi Rainbowferret,

Hello from the US. I have a similiar story - at 48 I was diagnosed with multiple 4- and 5-cm fibroids based on very heavy periods. Eventually I became anemic. I didn't want to preserve fertility, but I also didn't want to go through and recover from a hysterectomy if at all possible.

First I tried the mini pill, which sort of tamped down the bleeding a bit briefly. After about three years, I had an endometrial ablation that ended the bleeding forever. Woo hoo! About 9 months after that I did experience a hematometra, blood trapped in the uterus, and that was pretty painful. But my gynecologist treated it with an in-office procedure to open the cervix, and it has not recurred over the last three years.

Personally I am happy to have kept all my parts in their places (fingers crossed).

I highly recommend the book "Uterine Fibroids: The Complete Guide," by Elizabeth A. Stewart MD. It's a few years old now, but it's a good walk through all the treatment options and it's easy enough to get updates through Google.
Unread 09-22-2021, 12:17 PM
Re: Treating my fibroids - coil or surgery

I had fibroids for more than 10 years. In 2011 I had a laparoscopic surgery (myomectomy) to remove a crop of 15+ fibroids (in addition to endo excision, D&C, and removal of ovarian cysts). My 8-month recovery (assisted by a pelvic floor physical therapist) really knocked me off my feet and was much more difficult than I ever expected.

Then by 2015, several fibroids had already grown back, so I had a hysteroscopy to remove only the largest fibroid. There were more fibroids to remove again, but I only "let" the surgeon remove the largest fibroid because I didn't want to have such a long and intense recovery again. And so the 2015 surgery was pretty easy to recover from.

But by the time I had my hysterectomy in May of this year, everything was back (fibroids, endo, ovarian cyst), plus a new condition, adenomyosis, which can develop as a result of uterine surgeries. And it was all back with a vengeance. I was in the worst condition of the past 10 years, by far, and could barely function in my life at about 15%.

The coil and ablation were never recommended for me due to the size/location of my fibroids and other factors. The mini pill just made my pain and bleeding worse.

The only way to be permanently done with fibroids, as far as I know, is to have a hysterectomy. But I'm not gonna lie. I'm still recovering after 4 1/2 months, but am seeing progress in recovering bit by bit. This hysterectomy recovery, for me, is very comparable to the the 2011 myomectomy, etc. in intensity and length of recovery.

It's a deeply personal decision though, and everyone is different. Best wishes for whatever you decide is right for you! I was just unfortunate that everything would always grow back. Maybe there are some for whom that junk doesn't grow back after previous surgeries. Who knows?!
Unread 09-22-2021, 08:06 PM
Re: Treating my fibroids - coil or surgery

My embolized fibroid has not grown back, at least not yet. I was very careful to pick a very experienced Interventional Radiologist. My Embolization was done via the uterine artery to control blood flow to the uterus until it measured normal. Then the fibroid was embolized because it had established blood lines to feed the ravenous tumor. Once fully embolized which took about 2 hours and required twice the amount of particles expected, my bleeding stopped. Over time the fibroid shrank approximately 90%. I was down for one week but was tired for many weeks as my body worked to right itself from the effects of a large, dominant fibroid. No matter your choice, obtain the best practitioner you can find because experience matters.

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