I'm done with this Uterus! AIBU?

[emmathedilemma]

I'm prepared for you to tell me I am BU but quite frankly i am done with my uterus!! It is causing nothing but pain and trouble and I'd quite happily get rid of it. Yes, I know that in itself has implications but the prospect of potentially 10 more years of it being "functioning" is filling me with dread.
I had increasingly heavy bleeding over a couple of years which led to me being diagnosed with fibroids. I had a good old "miracle cure for heavy bleeding" mirena fitted with led to another year of hell with even longer and heavier bleeding until it bled itself out. Then I eventually got referred to gynae and cashed in my private medical cover (thank you work!) to get seen quickly and had uterine artery emblisation to supposedly treat the fibroids. I had a few months of lighter periods after that but once they've got back into a "normal" rhythm (every 23 days, bleeding for 8, if i'm really lucky) they are back with a vengeance and I'm flooding through super tampax every couple of hours on the worst days. I'm tired, cranky, bloated, crampy, and wearing 2 forms of protection just to make it through work meetings that last over an hour. I'm currently awaiting a follow-up scan and subsequent consultation with gynae again.
I am done with this!! My uterus has nothing to offer me except pain and discomfort and a large bill for sanitary protection!
Sorry, i needed to vent!

I feel the same. I’ve been having issues for the past couple of years, finally have an appointment with gynaecologist this week and I’m hoping they will tell me I can have a hysterectomy.

I’m in exactly the same place as you OP, including bleeding out the mirena.

I had polyps removed but this hasn’t helped. I still bleed heavily every single day even with provera. Since the polypectomy, I have additional pain (sort of like cystitis, nappy rash and a strange prickling and tugging sensation all at once ). I would love to know what’s going on there, it’s driving me crazy.

I am so sick of it. I’m seeing the consultant again this week and I’m scared to insist on a hysterectomy but I really really need this bleeding to stop and despite a lot of googling I’m not sure what’s best.

urgh, why do women go through this? It's just ridiculous! I wonder how many other women are suffering in silence thinking these things are "normal". I've now had a headache for the past 2 days which i'm sure is caused by the tranexamic acid.

I had bleeding and pain for years from fibroids. They tried everything with me and nothing worked.
Two years ago I had a total hysterectomy with bilateral salpingo-oophorectomy.
That basically means they take everything away. The womb,cervix,ovaries and Fallopian tubes.
I had two worries. Was it going to hurt? And would I feel any different?
I was in hospital for two nights. It was a bit uncomfortable for about five days. For a while after I had to take it easy.
I didn't feel any different in myself except I felt confident that I was never going to get caught out again with bleeding.

I've never regretted it.
😊

It’s awful isn’t it?
I am meant to be having a procedure tomorrow to see if I have endo, a scan conformed a couple small fibroids but nothing big enough to be causing the heavy bleeding and pain. A couple weeks ago I had such bad ovulation pain that I couldn’t leave the house for 3 days, my gp prescribed me some really strong pain killers. I’m bleeding 75% off the time, I’m single and unable to look for a new relationship because I’m embarrassed about bleeding all the time (I’m sure no ones going to want a relationship with someone that can only have sex for a couple days of the month and has awful PMT). I have days where I’m bleeding so heavenly i can’t leave the house or go to work.

I’m now worried my procedure won’t go ahead tomorrow because I am bleeding and passing clots 😭, I have waited a year for this appointment.

I've never heard of anyone regretting a hysterectomy @SummerOfComedy! I appreciate it's major surgery but for 10 years of respite from this every month it seems like short term pain for long term gain. How did you get on with the subsequent outset of menopause? Again, I figure you're going to hit that at some point anyway!

@SummerOfComedy it’s really good to hear your experience. I’d also love to know more about how you experienced the onset of menopause because it’s that (and the possibility of prolapse) that worries me most. I’m so desperately fed up, and as we’ve been certain since way before all of this that we’ve completed our family, I can’t imagine regretting the actual procedure at all unless something weird and hormonal kicks in.

@Lovemusic33 my experience has been that they go ahead despite bleeding but I’m keeping everything crossed for you 🤞🏻I hope it all goes well.

@emmathedilemma are your iron levels low again? I always know when mine have dropped because the headache kicks in first.

i never thought about iron levels @MickeyHICMoose I had them checked a few times when I was first being diagnosed with fibroids and they were apparently at the lower end of normal. Although I am usually quite active and other people have said that the low end of normal range isn't always high enough for people who do a lot of exercise. I was putting it down to the TA and staring at a computer / ipad / tv screen for most of my waking hours!

emmathedilemma

Was a myomectomy op never considered for the fibroids?. These can certainly cause heavy blood loss leading to anaemia.

I would push them hard for answers, after all they're supposed to be helping you!.

@Lovemusic33

Would think your procedure tomorrow will go ahead and I hope you get some answers. They should give you some sort of follow up appointment to discuss the findings. I would not be all that surprised if endometriosis was not readily seen however, as this is usually determined by laparoscopy. I absolutely sympathise re the heavy bleeding and clots because I had the self same from late 2019 to early 2020 when I had ablation surgery (the excessive bleeding was caused by an estrogen/progesterone imbalance). I was initially diagnosed with endometriosis around 20 years ago now which also played a role re continuous bleeding.

@AttilaTheMeerkat i think myomectomy was another, but least preferred option, because it's more invasive surgery and depending on where your fibroids are it's not always that easy. Maybe the uterine artery embolisation has worked and the bleeding is being caused by something else, or that's just my "normal" but it definitely didn't used to be this bad a few years ago. I had a hysteroscopy before the UAE and nothing else was found apart from a couple of polyps that were removed. Is this just a perk of getting old maybe?? Or peri-menopause? I was tested for that a year ago and it came back negative.

Yes I hear you. I spot from mid cycle to my period every single month because of fibroids. It’s soul destroying.

I’m due to have them removed next month and I’m going to ask my gyno to do ablation at the same time. Hopefully it will mean really light or no periods.

I still have a submucosal fibroid and thickened lining and can’t work out if a myomectomy and ablation would be an option. It’s one of my questions this week.

How will you have yours removed @LongPauseNoAnswer?

My friend had similar to you op and her consultant agreed to a hysterectomy when she was 41.
Best thing she done, she says.
YANBU!
Good luck.

It may well be the UFE did not work as effectively as it could or should have done. When are you due to see a gynaecologist?. Don't put up with this whatever you do and seek more answers from the medical profession.

My hormone levels were tested re perimenopause by the GP and came back as "normal"; never accept "normal". If they were indeed normal my progesterone and estrogen levels should have been far more stable than they were. The only other thing GP offered prior to blood tests was the Mirena and I refused that on the grounds that it's not a treatment for endometriosis (which he accepted as a reason). He could not readily answer why and how it would help me re the blood loss. I also thought it highly likely my body would expel this.

In desperation I self referred to a gynae at the local private healthcare hospital and after more internal scans got a date for ablation surgery. No more bleeding since!.

@MickeyHICMoose I’m having the fibroids removed not a hysterectomy. The ablation literally burns the surface of the uterus so it can’t build a lining or very much of one anyway.

Oh I'm sick of hearing about how the mirena is the cure to all women's problems @AttilaTheMeerkat! I don't know when I'm seeing the gynae again, he's put in an MRI request for me before I see him to discuss the results. He told me to ring and book an appointment and when I rang she said they'd ring me......that was Monday.....I'll chase them up tomorrow if I've not heard from them. I thought going private was supposed to be easy but I had chase the consultant up when he hadn't actually sent the request form in so that's two weeks now since I first contacted him.

Having a hysterectomy was the best thing I ever did for myself. I bless the day I had that done ! When I saw the gynaecologist, I thought he'd try to talk me out of it, but he simply said " Were you planning on using it again ?" When I said NO, he said well lets get it out, and get your life back.

Life has been wonderful every since - I can plan to do things and go places and never have to worry "what is the date ?"

Best wishes to you - I hope you can get this done soon .

Good luck. I had fibroids removed and a uterine ablation about four years ago. I still bleed for four days every 24, and bleed through protection on the heaviest day. I wish I'd gone straight for hysterectomy because now I'm not 'bad enough' for one, but it's still a worry every single month. I was bad enough before (bleeding 10 days out of 24, anaemic, flooding through 30+ ultra tampons every month) but cautious!

I hear you OP and my issues aren't as severe as yours.

I have crippling ovulation pain that floors me for 24 hours a month (doctor won't investigate, just says it 'can happen') My periods are horrendously heavy and painful and last at least a week.

I've had 3 DC and I'm just done with it. I'm 35 and DM didn't hit menopause until she was 55 so I could have another 20 years yet. Urgh!

sunnydaleslayer

Would urge you to see another doctor (no-one should have to put up with those symptoms) within the practice. Don't accept what you've been told to date, you're being fobbed off. If they remain unhelpful complain to the practice manager.

Ovulation pain should not be like described at all.
What you're describing here could well be attributed to endometriosis; its a common cause of severe period pain alongside heavy bleeding. Its also the second most common gynae issue seen in women after fibroids. This all necessitates a gynae referral. Do not be fobbed off and seek one of those from the GP. Never accept being told " it can happen" because the person who told you that, quite apart from being wrong, would not want to put up with it either.

I would also suggest you keep a daily pain and symptom diary particularly if you do not already do this. This will give the gynae clues.

emmathedilemma

I think the Mirena has been offered because it is cheap and has proven effectiveness. However, its certainly not suitable for all women and some women develop further issues stemming from its insertion. That side of the coin was never mentioned by my GP who wanted me to consider it further. That is also why I refused it.

Do chase them up tomorrow and let us know how you get on.

yep, definitely because the mirena cheap n cheerful, and to be fair, for a lot of people it does seem to have great benefits but the more I read the more I wish they would make the side effects and risks more well known!

@AttilaTheMeerkat

Thanks, I will look into it and pursue further.

The reason the doctor gave for not referring me was because I don't get the pain when on the contraceptive pill (well duh!) so she urged me to try that first but I don't want to pump my body full of hormones anymore. Had enough of that from years of hormonal contraception and three pregnancies. I think she was miffed I refused her 'advice' to be honest.

I've have 3 hysterosvopies to reduce fibroids/polyps and while having those they failed to notice alarge and growing ovarian cyst.
I've now been on the waiting list for a total hysterectomy for 8 months,have had a preop but no date.
I was persuaded to have the Morena and it had stopped the bleeding and it means I just use oestrogen gel for hrt.I was resistant as if it works it's great,if it doesn't then a disaster.But bleeding out all the time was too much.
It's the cyst causing most problems now!
Just need an op date!

I had my hystoscopy this morning and biopsy, was interesting to see my insides on the screen, I had a joke with teen dd this morning saying “they will probably find cobwebs” 🤣 it did in fact look like cobwebs. They found a couple small fibroids but not much else. I was given the choice of having the coil or endometrial Ablation surgery, I have opted for the surgery as the success rate is higher and I don’t want anything hormone related places in my body. I now have to wait for the biopsy results and then I can go ahead with the ablation.