Large fibroids

[KeepOnCleaning]

I'm not sure what my question is but I just need some support and stories from other women who may have experienced similar. I originally went to the GP a month or so ago after around 3 months continual stomach pains, and feeling a large mass in my stomach. Various scans and ultrasound and I have been diagnosed with several fibroids, the largest being approx 12cm. The GP said I must have had them for years before they started bothering me. However, it all feels very sudden to me. Maybe about 4 months ago I thought my periods were coming to an end as they were so light and infrequent (I'm 50). They've suddenly got much heavier the last few months. I have now been bleeding so heavily for the last 2 weeks that I'm anxious about leaving the house. I'm going away in a couple of weeks and I'm on the verge of cancelling it because I don't know how I'm going to cope with the journey and flight, as well as doing things while away. I have a gynae referral but the appointment isn't until October, and I don't know how I'm going to cope until then. I already have an appointment back at the GP to discuss what I can do in the meantime to cope, so I'm really just looking for reassurance that this is normal, and stories from similar experiences and if this is inevitably going to lead to a hysterectomy. I am at the stage that I will do whatever is required for the quickest possible solution. I can't trial things for months on end that may or may not make a difference, because this is seriously affecting my day to day life and mental health.

Hi, I only have one fibroid but it’s big at 16cm. I have heavy periods too but yours sound really bad. I’m sorry you’re struggling, it’s grim.
I take tranexamic acid which definitely helps with the volume of blood. Have you tried that?
I had a gynaecologist apt yesterday as it happens (2 years, 2 months after my referral!) and I don’t want a hysterectomy as I manage the symptoms well enough. They are making me have another MRI to check it’s not grown.
I hope you get sorted out soon.

Definitely ask for tranexamic acid until you’ve got a plan to deal with it.

I had mine removed by myomectomy. I would ask the gp to expedite your referral and say that you’re really struggling and see if you can have them removed.

I've read that a myomectomy is recommended if you may want to have children in the future. That doesn't apply to me so I wonder if a full hysterectomy is better.

@Malbecmerlot and @MiddleAgedDread , thank you, I will ask about tranexamic acid when I see the GP next week. Have you experienced any side effects with it?

I had huge fibroids to the extent I looked pregnant and was almost continually bleeding. I had a hysterectomy and, once I'd recovered from the op, I felt brilliant.

I had polyps and large fibroids. Horrendously heavy periods that meant I couldn’t leave the house for at least a week a month, and was chronically anaemic for years. Tried everything. Most things worked for a few months then it would start again. Eventually I got a uterine ablation and it totally solved the problem. Got my life back. It was truly life changing. Worth asking about. It means you won’t be able to have kids though, so it’s not something they do until it’s a last resort. Totally worth it for me though as my mental and physical health was really suffering.

That's what I'm thinking from what I've read. When I initially saw the GP, she said my stomach felt like it was carrying a 6 month foetus. I'm finding that I can do up jeans, even though I haven't put on weight and I struggle to bend over and I can't lean against surfaces because of pain from pressure on my stomach.

All that and I needed a wee every 30 minutes. I was 45 and went straight on HRT afterwards as my ovaries were also removed.

I'm 50 with 2 teen children, so more babies are definitely not in my future!

Does anyone know what is likely to happen in the initial gynaecologist appointment? Are they likely to just talk to me about symptoms/options, or actually do something?

I had a huge one removed a few weeks ago via hysteroscopy and the difference is unbelievable. I feel like I've got my life back. I'd been bleeding and in pain every day for 10 months and looked pregnant. My tummy went flat almost immediately although it can take a few months for the uterus to return to normal apparently.
I'd been pushing for investigations since the middle of last year and finally just went to the GP and laid it on thick re the impact on my life. She wrote to the surgeon and I got offered a slot a few days later. Good luck, I hope they sort you soon, it's debilitating to live with.
Incidentally mine was likely caused by HRT as oestrogen feeds them so I can't take it anymore.

I am 50 too and was on the 2 week pathway due to 12 weeks of continual bleeding back in Feb.

Scans showed 2 largish (10cm diameter) fibroids that weren't there 2 years ago when I had scans for my coil to be fitted.

The nurse said that the oestrogen in my HRT (also started 2 years ago) made fibroids grow, so we reduced my evorel patches right down to the smallest ones and the nurse referred my to gynae.
Apparently fibroids shrink when oestrogen reduces in peri-m and menopause.

The bleeding and weird feeling stopped within a month or reducing the evorel, so I'm hoping they are naturally shrinking

Still no news or appointment from the gynae department - it's been 6 months now.

I'm not on HRT at the moment. I'm still on the mini pill as the same contraceptive I have been using since I was in my 20s.

I was late thirties at the time, hence their reluctance I guess. I think I had at least one appointment where various options were discussed, before they decided the uterine ablation route was the one most likely to work with least problems, as there are other surgical routes they can take. I was so desperate to find something that worked by then I was happy to opt for surgery and for it not to be a hysterectomy which I wanted to avoid if possible. I had not heard of an ablation before then so did some research as to likely outcomes. It’s worked brilliantly for me, although I understand that’s not always the outcome. I’m about your age op, so it’s been over ten years and no problems since.

Does anyone know why a woman my age wouldn't just choose to have a hysterectomy in my situation? What would I gain from some of the other options?

Your choices will depend on where and how your fibroids are growing.

None of us here will know that.

Mine was 25 years ago and I wasn't offered any alternatives. It was a very short wait at that time too.

That makes sense as I did go on to have children afterwards. I hope you find a solution soon.

You can have a myomectomy can't you, to remove the fibroids?. Maybe look into that if you don't want a hysterectomy. I second using @KeepOnCleaning Tranexamic acid for heavy bleeding. Also you can get NSAIDs like Naproxen or mefenamic acid to help with the pain as well. Maybe also look into iron tablets as you may be anemic and they can help with energy

They will talk through it all over again, your symptoms (have these listed, in detail and don't undeexaggerate), they will ask all medication you're on (I'd have a lsit including dosage etc) and then go though options: uterine ablation, myomectomy, hysterectomy based on what you want and then maybe recommendations on medication to take till surgery.

On Tranexamic acid, I haven't had any side effects and there aren't many so long as you use it correctly for most people it's fine. Whilst you wait to see gynecology and then wait for surgery I'd definitely get on it as it will massive help with bleeding.

I'm actually having a full abdominal hysterectomy on Tuesday as I have a large 12cm fibroid. I'm 45. The gynaecologist didn't really suggest a myomectomy as I have teen kids and don't want any more and it's only really offered to younger women who haven't finished having children yet. He also said there is a chance of the fibroids growing back if the uterus is left so best to take it out. I'm having my overies left.

I'm not in the UK, but where I live myomectomies are not available to women who are not going to have children. This is because they are more complicated operations.

I have medium-sized fibroids and if an operation is done it will be a hysterectomy. For me that's a very last resort though, but I'm not in the same situation as OP (yet).

I’ve got a big one: 20cm by 14cm in March. It’s growing about half a cm a month. I’m so uncomfortable waiting for a hysterectomy. I look 7 months pregnant.

I had a 12cm one. The level of bleeding was absolutely horrific. Massive clots would just pump right out of me constantly, it was awful. I was put into an induced menopause for 6 months which shrunk it right down to 5cm.

At this point, they then discovered it was a submucosal fibroid which meant it was removed via hysteroscopy. It was a general anaesthetic and I was back at work two days later.

Apparently submucosal fibroids cause the most bleeding but are the most straightforward to remove! So it kind of depends where your fibroid is etc. I had mine removed 7 years ago and I've not had any bother since.