Fibroids, anyone?

[SickofSoup]

I’m sure there are plenty of other women here dealing with fibroids but am feeling quite alone with it at the moment, as I don’t know anyone in my personal life with them, though it’s hardly a conversation starter!

I’ve had a 18 week size intramural fibroid confirmed (but waiting on MRI to determine best cause of treatment). I’m not worried about preserving my fertility, but do want to get off progesterone which I’m taking to stop the horrendous bleeding (currently having no periods).

I’d love to hear from others who find themselves in a similar situation or have any experience to share?

I’m just glad to have sorted out the anaemia and have a new lease of life! Best wishes!

Thank you! What treatment did you have, if you are happy to share?

By the time the anaemia had been picked up my periods were getting quite erratic and actually not quite as bad as they had been. The gynaecologist suggested that there wasn’t anything other than an abdominal hysterectomy that could be done so I had no actual treatment apart from having a polyp removed.
I wish now I’d gone for a mirena coil years earlier.

I just took ferrous fumerate every other day for about three months then a few more when I had my last period. It probably was the last but it’s not that long ago.

@WhatWouldJeevesDo I am glad you’re in a much better situation now. My fibroids actually pushed my mirena out during a massive bleed! I am expecting total hysterectomy to be the end result too but that obviously brings its own challenges!

I've a very small fibroid causing a lot of problems! Well, I have a smattering of bigger ones in the muscle that aren't currently causing a problem, but one of only 1cm that's caused me to bleed heavily for almost 3 months since I started hrt. The mirena wasn't doing much to minimise bleeding before i started hrt, but at least it wasn't constant. Gynae has offered a few solutions but the only one to guarantee I can keep taking estrogen (which has been very positive for peri symptoms) is a hysterectomy. I really don't know what to do. Estrogen is both giving back a quality if life I didn't realise I'd lost but taking it away with the never ending period flooding.

Have you been advised about possible resection? Gynae has offered it as a first line option but warned it could take two or even three attempts to clear even such a small one, and given I'm only 45, and seem to be prone to fibroids (they've come and gone since I was first pregnant 15 years ago) she warned me I could be back in the same position at an unknown time in the future.

Me
Suffering at the moment and have requested to have an embolism. I have several but I know someone who had embolism and its been life changing. Periods are horrific i can't leave the house for days. It's debilitating :(

@PuneorPlayonWords I'm sorry you’re having such an awful time, I’m grateful that the progesterone has stopped my periods altogether but it really was miserable when I was getting them.

Consultant is getting some second opinions on options regarding resection and embolism but has said given my age and being done with family that hysterectomy may be the way to go (due to previous dvt I cannot take hormonal contraceptives).

@MrsMiagi that sounds horrible, I hope you can get your treatment soon. It really is debilitating, I don’t think people realise until they experience it themselves (like most things I imagine!)

Me. I've had various treatments to deal with mine over the past 15 years, inc a myomectomy, a couple of minor shellings, Uterine Artery Embolisation, etc. Am now 49 and they're still there, after all that, but calcified, so not breaking down as the UAE was supposed to trigger. I was always assured that menopause and the turning off of the hormone tap would wither them for good, but I've since started HRT and am concerned that the new source of oestrogen is giving them a last hurrah.

Incidentally, this medical categorisation of fibroids in terms of pregnancy size is something I feel strongly about, as someone whose fertility outcomes were blighted by the fucking things. It's pretty upsetting to be told by your consultant that your 'bulky uterus' is the same size as a 16+ week pregnancy when you've never managed to get pregnant in the first place.

I had a hysterectomy (abdominal as the fibroids were large and numerous by then). Most life-changing (in a good way) thing I've ever done. The surgery and recovery were a walk in the park compared to the suffering I had before it.

Bulky uterus is such a horrible phrase. I wasn't ever told the gestation age of mine, just the sizes in cm which was shocking enough.

I'm almost exactly a year on from an open myomectomy after 18 months of 3 a day iron tablets and 6 months of chemically induced menopause. I can not emphasise enough how much it changed my life. And, the recovery was surprisingly easy.

I'm going for dinner with friends tomorrow on day 2 of my period. 2 years ago, I was unable to leave my house on days 2 and 3 of my 10 day bleeds.

Interesting. I can't take the combined pill because of high dvt/tia risk. I am done with having kids. Fibroids made my last pregnancy awful. I'm sure my iron count is none existent at this point!
I wonder if hysterectomy will be suggested in my case.
The mirena coil has been suggested o manage how bad my periods are but I tried the progesterone only pill and bled daily. Also made me so depressed I couldn't do that again.

@beigerage I’m sorry I referred to the size in that way, you are right it does seem incredibly cruel. I’m also sorry that your fibroids are seemingly having a party, very out of order.

@GCAcademic and @ConfusedGin I’m so glad to hear about your positive surgery and recovery experiences. I too would have to have an abdominal procedure due to the size of the fibroid. The vertical scar sounds miserable but improvements to life sound great, even though I don’t know the extent of the impact as the progesterone has stopped my periods together.

@MrsMiagi I am sure it will be, it’s the only 100% effective treatment as far as I’m aware (but obviously quite a big step!)

You wouldn’t necessarily have a vertical scar. My surgeon had to make a decision on the day and managed to do a horizontal cut. I’d taken a drug called Ryeqo for three months prior to shrink the fibroids in the hope that she’d be able to do this.

@beigerage my consultant put the wind up me that as long as I'm taking estrogen hrt (which I really do need) it will "feed" the fibroids. She also said that even post menopause, fibroids can cause bleeding which needs a hysteroscopy to check that it's "only" fibroid related rather than anything more sinister. While she wasn't pushing a hysterectomy, she was really selling the downsides of not getting one 😩

@GCAcademic that's good to hear your recovery was so good. I've had 2 sections so I have an idea of what would be ahead, but I also have pregnancy related pelvic damage so I'm worried that the surgery itself and parts of me being missing won't help that any.

I'm 52 and have had heavy periods all my life, but got heavier in the past 15 years. It was due to polyps and later fibroids. The first time I have a polyp removed the surgeon came out and told me it was the largest one she had ever removed!
I tried a Mirena and it too was pushed out by the fibroids.
I've had a few procedures to remove the polyps, three I think now, and a d&c at the last one. Apparently my fibroids weren't large enough to cause problems, but something was.
I have had at least 4 iron infusions and one blood transfusion over the past 5 years and my ferritin was 3 at its lowest and was when I felt the illest.
I had a hysterectomy on 15th as I couldn't cope with the heavy bleeding, flooding and huge clots any more and feeling so poorly from the low iron. So far, for me, I have felt pretty good and am so glad to have had the operation.

I also have a horizontal scar. I took GNRH which stopped the bleeding for a total of 9 months (inc 2 post op) and shrunk the fibroids. A vertical incision wasn't even discussed with me as an option.

I went for a fertility assessment this morning including an intravaginal ultrasound and some blood work. I had never had heavy periods until about 1.5 years ago and just assumed periods change as we grow older.
Well, l came back from my appointment to be told I have many fibroids and they couldn't even see my left ovary. Am not sure how to feel at the moment as I was hoping to start my fertility treatment in December.
Will have more details in Friday and a better understanding of the treatment options. I know fibroids are common but at the same time am worried about whether it's more than just fibroids. Sigh.

Hi OP; I had an 11cm round fibroid that was causing anaemia and physically protruding. I had a UFE last year and it wasn’t totally successful but has reduced to about 4cm so successful enough! Bleeding has reduced significantly and op was fine. Def worth considering.