Bladder retention, fibroids and hysterectomy

Yes, exhausted, constantly feeling I need a wee, tender even what appeared to be blood in the urine, leading to all of the bladder cancer scans, but seemingly break through bleeding, lodged uterine clots with size & shape of fibroid being pushed out with the force of urine, depending on position or amount in bladder, or position of uterine clot. My back is quite an issue, my spine is now not great prolapsed discs, so any kind of abdominal surgery is a risk to that, but what do I do, if I UFE isn't for me so I'm told. Keyhole myomectomy? That would involve hours on the operating table, have a larger risk for blood clots due to the time on the table & blood loss, I've also had a C Section so there will be that scarring to take into account too, which may cause complications. My main worry really is about back pain after an open procedure, well any procedure, like the teacher said destabilising the spine with hysterectomy, one consultant already told me of a lady struggling with that after hysterectomy, but the alternative is?

Well I’m thinking with being on Esmya now this might change things. Whatever I choose to do surgically I’m not going to be wanting to repeat it again or something different, in a few years time - because the fibroids come back. It’s a one hit cures all for me, I’m not messing around, this is just a personal choice of course that not everyone will share. I just think I don’t need my uterus anymore -  six weeks later problem solved, full stop. Obviously I will discuss again all the options with my gynaecologist when I see her in December.  

I totally understand this Sophie, not an easy decision but one that at least solves one problem, no more fibroids! But of course may cause others, but then again may not & might be the right thing. So many gynie's I've seen have said if the lady has done with children then it's the safest thing, as there is more blood loss, time on the operating table, chance of re-growth & more operations with a myomectomy. A major op, not taken lightly but as you say no messing around. That's what I feel I've done, messed around trying this & that in the last 3 years. Esmya was great for no periods for me (some people still bleed but I didn't) but didn't reduce the size of the fibroid tumour, neither did Zoladex. When they are bigger & been there a while it seems more difficult, seemingly mine has the appearance of reduced blood supply on MRI. (But is this because of the Zoladex or Esmya, because the scans were taken when on those drugs which with all the necessary cycle & breaks has been going on since August 2014. Really after the birth of my one & only son (as I would have liked another child) I should have been MRI'd a couple of years after him & given the options. As I was told at C Section, they couldn't see a fibroid, so I thought I had maybe gone! But no my is in the lower posterior uterine wall so likely stretched at that point with being pregnant, & when all got a bit more back to normal after the birth of my son, who is 10 next week, it would be there again but I was thinking it had gone! No such luck!

How big were your fibroids & where were they?

You sound like you’ve really gone through it. I wonder how things would be if men got fibroids?!

What are you going to do now about your fibroid?

Not good news about the Esmya either for you. I feel it just eases things maybe for some people especially if surgery is on cards makes it smaller.... but ultimately it’s only a temporary fix as you can’t be on it forever.   Maybe you should do more hysterectomy research and at least you’ll be rid of it for good although I imagine you probably have already x

Hi Toni,

Did you just have the one big fibroid? Where was it? You had open abdominal hysterectomy? Were you not a candidate for keyhole because of the size of the fibroid? How long did your operation take? Did you/ do you suffer from back pain or have any spinal problems? I have seen consultants from the South to the North of England, over 7 different ones, to see about different options, but it would seem hysterectomy is the only way to be sure. Myomectomy is a option but, longer on the table, so more chance of clots, more chance of blood loss. I don't know why I have fought for so long to keep my uterus, maybe when I was 37, the pipe dream of another child, but now at 47, I have to think of the one child I have & the life I can give him. I do worry about the state of my back though, as I didn't suffer from back pain until I had a C Section however, I am now also 10 years older & having a melon in my uterus isn't helping my back either is it! How do you feel now? Pluses/minus?

And would you say the hysterectomy was the best thing you did?  How do you feel now, back to normal?

Xx

Hi Heather,

As far as I know I had just the one Cantaloupe melon sitting on my bladder!!  I fought for 2 years to try and save my uterus.  I tried everything from Apple Cider Vinegar and Black Strap Molasses 😖 to Esyma to try and shrink the blasted thing, but nothing was going to shrink that!  I had an horrendous period that lasted 6 months; I was put on Northisterone to stop the bleeding but even that didn't help.  I was so anemic and then the retention happened so I was booked in for an abdominal hysterectomy.  They wouldn't do keyhole as it was too big.  I managed to keep one ovary.  

As far as saying am I glad I had it done, oh yes, indeed I couldn't carry on like that, it was a must.  I was a slow healer, especially still being on the catheter when I came out and the constant trips to Urology dragged on.  I have to say, I haven't bounced back as it were, the menopause kicked in pretty quickly for me and I've put on a stone in weight and I don't sleep anymore.  I'm only speaking for myself though, lots of women do bounce back.  I'm not sure about HRT, maybe I should give it a shot.

The one real plus point is no more bleeding!! 😀 and being able to wear white shorts in the summer, albeit in a bigger size!!!

xx

That's it Toni, like me you tried, who wants major surgery! Why do you not sleep that doesn't sound good. I take it they took one ovary because it had a cyst on it or something like that? But great about the bleeding as anaemia has so many other side effects. Being on the pill or the pills they give to reduce bleeding are never great, some are linked to other issues as well the most known of which is breast cancer. Great about the bleeding though, fibroids have an effect on hormones too as well as the obvious effect on hormones when having a hysterectomy. It's a battle to carry on weather it be 2 years or 10 years with a fibroid. HRT is once again a personal choice but I have a very good GP friend who has had special training in it & she is going to use it for herself when the time comes after being trained fully on it. As I say its a personal choice but for some becomes a necessity for quality of life. Did it take a while for your bladder to revert to normal? When you had your melon sized fibroid (same as mine) did you feel like you needed to go just after you'd been. I had an ultra sound this morning & drank the water they needed me to have but had to go, twice within 10 minutes of going initially, I can't take large capacity. Anyone who says a fibroid 13cm doesn't effect your bladder must surely be wrong! I have had one gynie say it didn't but other who said he did. xx

Oh yes definitely Heather; felt like I needed to go the loo just after I'd been, and then only a trickle came out!  What was your ultrasound for?  Have you actually been put forward for a hysterectomy or are they monitoring you with taking the Esyma?

My bladder recovered pretty well actually.  I had to have a cystogram a couple of weeks after which is like an x-ray of the bladder from different angles.  You are lying strapped to this table being moved round, it was like being on a fairground ride!  Then I was referred to Urology for check ups.

They took the one ovary as it had endometriosis (didn't know I had that).  I was hoping to keep them both for the little bit of estrogen that may be left.  As I said, straight into menopause; I think that is why I'm not sleeping too.  I just can't get off to sleep and I am exhausted.  It's a weird feeling.

Let us know how you get on.  Enjoy your weekend xx

Just a wee check of it al, but they can never see everything anyway because of the size of the fibroid, gynie appointment later in November they want to do a hysterectomy, but even though its 13cm they are considering keyhole. x