Experience with fibroids? Horrific pain

[nobabiesyet]

Being diagnosed with a huge fibroid. In horrific amounts of pain and bleeding. Seems impossible to get an appointment with my doctor to discuss hospital findings. Just being precribed variety of tablets via phone with no explanation of their use. Referred me to gynae but appointment not through til start of Sept. Has any one else had this. Pain is spreading through to band from stomach and I'm very concerned about being in increased pain for this time. Has anyone had similiar? Thanks for any thoughts

through to 'back' from lower left stomach area

Yes. I had a hysterectomy 5 weeks ago. Paid to go private in absolute desperation after nearly two years of pain, bleeding and being bounced from one telephone 'appointment' to another.

I'm so sorry you're going through this. Have you been offered Zoladex? It's the only thing that helped me.

Hi just wondering how you got diagnosed? I have the same symptoms & I am on the waiting list to see a consultation.

I am in agony most of the month!

I had horrendous bleeding due to fibroids. I've just had them embolised. I saw someone privately although the embolisation was done on the NHS.

Thank you all for messages. Re: getting diagnosed - a few years ago after similiar pain I had an ultra sound and it found many small fibroids. No action was taken and things setttled down. The other week I had such intense pain and a haemorhage that I ended up in hospital. After a second ultra sound they found a huge fibroid. I've just been palmed off with pain killers and have a gynae appointment start of Sept. Not even a follow up doctor's appointment. I'm off work and worried. I feel for you Mixitup
Roses in my garden - any advice for going private. How are you doing? It's a huge operation did they suggest other things first. How long til you are recovered? I can't believe you had a 2 year wait? How long once you decided to go private? I havent heard of embolise - my worry is that as I have a lot then others might replace the large one.
It's awful. I think its a very hidden condition. Any other advice? Those that went private - how did you do this? I don;t have private medical insurance and a recent house move means funds arent great.
Sending support to all x

Hello.
Sorry you are going through this. I had absolutely horrific bleeding and pain from fibroids. I became very anemic and had iron infusions. The treatment will depend on the size and location. Mine was growing within the uterus wall. I had them removed laparoscopically. Gynae then inserted a mirena coil to prevent uterus walls from collapsing and sticking together after surgery. During surgery, he found deep endometriosis on my bowel too and my ovaries were twisted, which explains some of the pain. Surgery has been life changing for me. I get the usual period cramps but nowhere near as bad as before. I also have hardly any bleeding but this may be because of the Mirena, which I will keep for now.
I went privately through insurance and it was all sorted very quickly. I had referrals to hematologist and endocrinologist to check my hormones.
If you can have privately, I would try.

It's horrendous, I swear if men went through what some women suffer with they would take it more seriously!
I've had ongoing issues with my fibroids for a couple of years now which were diagnosed following increasingly heavy and more frequent bleeding.
First line of attack was tranexamic acid which helped reduce the heaviness but gives me a really groggy headache. Then I head a mirena fitted which made the bleeding and pain heavier! Also tried the combined pill which gave me a migraine so had to stop taking it. The mirena bled itself out while I was waiting for a gynae referral appointment. When I finally saw the NHS gynae they had a 26 week wait for a hysteroscopy examination (this was before Covid!) and were really pushing some drug, the name of which escapes me, but it's banned in some countries due to the risk of liver failure!!
I then went privately using medical insurance through work and had my fibroids treated with embolisation which has apparently worked in that the blood supply to them has been shut off but my womb is still larger than normal and I was still getting quite heavy bleeding and needing to take the tranexamic acid. I've recently tried the progesterone only pill but after 10 weeks of daily bleeding I decided enough was enough last week and stopped taking it! Today I've got that "looming period" feeling so awaiting to see what my womb has in store for me this time!
The problem is that some of these treatments work very well for some people and others try everything but nothing really helps so the issue can drag on for years.
I'm starting to wonder if there's something else e.g. hormonal that means nothing works for me. I've got a GP call next week so I'm going to make enquiries about endocronology etc.

Thanks for messages everyone. I'm shocked this condition is not more well known and shocked the impact its having on our lives. I feel I cant plan anything and fear being away from home. I also feel wiped out. Love to all (flowers) .

Is it just me or do you think men would put up suffering like this?

Is it just me or do you think men would put up suffering like this?
no, they absolutely wouldn't!!

@nobabiesyet

Thank you all for messages. Re: getting diagnosed - a few years ago after similiar pain I had an ultra sound and it found many small fibroids. No action was taken and things setttled down. The other week I had such intense pain and a haemorhage that I ended up in hospital. After a second ultra sound they found a huge fibroid. I've just been palmed off with pain killers and have a gynae appointment start of Sept. Not even a follow up doctor's appointment. I'm off work and worried. I feel for you Mixitup Roses in my garden - any advice for going private. How are you doing? It's a huge operation did they suggest other things first. How long til you are recovered? I can't believe you had a 2 year wait? How long once you decided to go private? I havent heard of embolise - my worry is that as I have a lot then others might replace the large one. It's awful. I think its a very hidden condition. Any other advice? Those that went private - how did you do this? I don;t have private medical insurance and a recent house move means funds arent great. Sending support to all x

To cut a long story short, I had a big fibroid removed privately last November and also had an ablation. This failed and within 3-4 months I was in even worse pain and bleeding constantly.

Despite several A and E admissions, the NHS did almost nothing to help me and I had my hysterectomy 5 weeks ago privately.

I was able to book an appointment with the consultant within a week/10 days of phoning up both times.

I waited about 4 weeks both times for the surgery from the date of seeing the consultant.

I am 5 weeks post laparoscopically done hysterectomy where he removed everything except my ovaries and although the first week or so was rough, I am so so much better now. Almost back to normal.

All in all, the two surgeries, consultations and scans have cost us nearly £12,000 from our savings.

I am self employed, and had this gone on much longer I would have been unable to work and we would have ended up losing our home.

It took 18 months for the NHS to 'see' me via a phone consultation, At which time they prescribed me some medication I had already tried unsuccessfully and sent me away for 6 months. 9 months later (and after my surgery) I got an appointment for a Zoom consultation. I never even got as far as being on the NHS waiting list for a hysterectomy, despite this being the only option.

Oh my goodness Roses. How horrific. How long to be ill. And what a huge amount of money to spend - I know there's no price on health, but what a vast amount . Presumably you struggled to work whilst this was ongoing?
It seems that eventually most people see to have hysterectomys in the end? I suppose they try other things first - but do you think people would be better pushing for it first of all?

oh jeez @rosesinmygarden ablation was potentially my next (only) line of attack, you're not selling it to me!

It does make me think - should we go straight for hysterectomy? If that ends up being the end result anyway?

Sorry - one more question. All of you who have suffered this. What have you done about work? At the moment I'm off work - my job is full on, face to face, and I can't rush off to the loo. I've barely left the house in the last few weeks.
I can't be off indefinitely? How have you managed to work? Do I need to look for a less full on job? Husband works, but my salary and job is important . Really worried.

I think ablation can work very well but apparently with my type of fibroid they can recur, which they did with a vengeance!

@nobabiesyet I don't think it would be an option on the NHS until the had exhausted every single other (cheaper) treatment on their list and made you try them for 3-6 months each before moving on to the next one. It is barbaric and I am disgusted at the way I was left in horrendous pain for over two years despite having a letter from the private consultant (who is also the lead gynae man at the local NHS trust) saying that I needed a hysterectomy.

I did get given a Zoladex injection after one of my desperate visits to A and E and this did work, albeit with horrible side effects. I was referred back to them for a repeat injection by my GP as it has to be done every 28 days. My 'emergency' referral got ignored and I was refused further treatment within the 28 days meaning I would have been back in pain and bleeding out again before long so my only option was to go private.

I worked throughout all of this because being self employed I had no choice. But to be allowed the hysterectomy I had to have 2 iron transfusions at a cost of £700 each as my iron levels were so low by then that surgery was too big a risk. These were the same iron levels which I had when I was last admitted to A and E and then sent me home telling me to eat more leafy greens and take daily exercise as my iron levels were 'a little low'.

My consultant was very very angry at the way I had been treated and ignored but says it is happening to many many women. Apparently the current wait for a hysterectomy in my area on the NHS is about 2.5 years. That's once you are allowed on the waiting list.

I am so very pleased I did it. I am angry that I had to pay for it and angry about the way I was treated but my new life has now begun. I can now leave the house without wearing an adult nappy and I am no longer collapsing in agony on a regular basis.

Bless you. Thank you for responding. Of course, I want to work. I need to. But I'm bleeding through everything -Tena, and doubled in pain. I do wonder, thinking about cost effectiveness if it is best to straight towards that soultion.
I feel so bad for you. What a battle, and fiancial and life cost. So pleased you are okay. If you have any tips for working through, practical please do give me them. I'm bleeding through a nightime pad and tampon in less an an hour x

Sorry that means 'okay now'

I've got 3 fibroids and they cause me to have the most horrific painful periods. Spent years asking the doctors for help but they would only offer pain killers which didn't work or to go on the pill which isn't and option when TTC.
Did a bit of research and found out that alternative medicine had absolutely amazing results with blood and "flow" related issues like fibroids. Had accupuncture and it worked a treat, my periods aren't painful at all any more. Maybe worth a try?

These are amazing and meant I was able to leave the house and see clients without bleeding through my clothes and leaving puddles of blood on the pavement.
www.amazon.co.uk/dp/B00D6EEWLU/ref=cm_sw_r_cp_apa_glt_fabc_8KZHWDRE6CM11ZWE78YV?psc=1&_encoding=UTF8&tag=mumsnetforu03-21

I also got my doctor to prescribe me codeine. 30 mg. Its the only thing that worked for the pain. But its addictive.

Ask if they will give you zoladex. It does work and the side effects may be worth it.

Thank you for all your thoughts. I will update you all. I appreciate everyone's contribution. I have found an online facebook group which is supportive too. Thank you, all

Contact your nearest GU clinic & go there. They cover stuff like this too & were a godsend to me when dealing with something similar. They moved really fast too, I was in, scanned & more in-depth scanned again at another hospital & operated in within 3 weeks

Yes I had one mahoosive fibroid, the size of a 5 or 6 month pregnancy. So much pain, flooding, blood loss every month. It also pressed on my bladder and was causing issues with continence.

Hysterectomy was the best option for me, had to be a full open procedure as the fibroid was too big to be removed keyhole or vaginally.

In my experience you need to keep up pressure on your GP, too many dismiss it as "just one of those things", I had my hysterectomy at 44 and had to fight for it, some doctors thought it was reasonable to expect me to continue potentially 10 years to menopause with all the symptoms.

On the private thing - it really is night and day compared with the NHS. I was covered through DH's work. Saw a consultant of my choosing. Plenty of time to talk through options. Chose date for my surgery. Had the op late afternoon on a Tuesday. Tuesday evening was very rough but mainly because i'd reacted badly to the anaesthetic and vomited repeatedly. Had a catheter in too.

Wednesday morning - catheter out, encouraged to get up and out of bed, had a shower. Very weak and couldn't stand for long but was shuffling around my room. Also discovered that morphine makes me vomit too....

Thursday - much better. Saw surgeon who said she would discharge me, or I could stay another night if I wanted. I stayed another night! The week after that when I was home I was tired and couldn't do much, but just pottered around the house. Then after a few days was able to walk to the corner shop ad back, and gradually built it up. I think I was back driving after about a month.

Wow thanks for the support.

I had this too with a huge fibroid and bleeding through even nighttime Tena pads, flooding at work, etc. NHS said I should wait to past menopause and should resolve then as fibroid would shrink. Never mind that would have taken years of suffering, it also doesn’t work if you take HRT. Used my private health insurance, got everything out - cervix to ovaries - via keyhole surgery. Seen within a month, overnight stay and back home. Absolutely life changing. Can’t believe I had to put up with that for a decade. It is an absolute disgrace that it isn’t offered routinely when it leaves you in terrible pain and suffering embarrassing floods on a regular basis.