Are my symptoms typical of fibroids and what options are available

Women's health
1

Hi to all, I'm new to this forum and relieved to find that there is support and unbiased information available. My situation is that I was diagnosed with multiple fibroids after an ultrasound 18 months ago. They weren't giving me too much bother at the time apart from slightly heavy periods. However, fast forward to six weeks ago and I had a very heavy period which basically didn't stop and I have essentially been bleeding non stop for almost six weeks now. My gp put me on Provera a synthetic progesterone to stop the bleeding, it helps a little but hasn't fully stopped. I'm awaiting a transfer vaginally ultrasound next week to see what's going on. I am extremely worried, firstly that it's nothing more sinister than fibroids and secondly if it is fibroids that I can be offered an option which will preserve fertility.

I would like to ask you ladies if this non stop continuous bleeding from one period to another is normal? Also I would really like to get some advice re best removal methods which will preserve my fertility? I have read that there is a new focused ultrasound treatment which is very successful. Has anyone had this and is it available in UK or Ireland? Other than this I have read that laparoscopic myomectomy is the only other option which is non invasive. I would love to hear from anyone who has had this.

Thanks for reading, look forward to hearing.

Belle101

2

Hello, I too had a 4 week non stop period and was put on Norethisterone to stop the bleeding and iron tablets as I became anemic. An ultrasound showed I had three fibroids: I am 25 and so like you are concerned about my fertility. After multiple appointments with my consultant he stated that the two options are UFE and a myoectomy. He stated that for younger people he advises that they opt for the myoectomy as the UFE is a relatively new procedure they are not fully aware of the effect it has long term on fertility so I have opted for the myoectomy. Hope this helps.

3

Thank you for reply, much appreciated. It's a relief to know that the continuous bleeding is not an unusual symptom of fibroids. Also please excuse the typo in my post. The ultrasound I mentioned is trans vaginal.

4

hello,

Sorry to hear about your difficulties. I'm no expert, but from what I know, it does sound like your symptoms could be due to your fibroids but I get why you would be worried about other things (I was too). I have 2 fibroids but they're outside my uterus so don't cause bleeding problems but I do think they've contributed to the long list of physical problems I've had over the past 2 years. I ended up having a laporoscopy to rule out endometriosis, I didn't have it and because I don't have bleeding problems, I felt I had come to the end of the road medically. 

I looked into what causes fibroids and it seems hormonal issues/imbalances come up a lot. I then looked into what can cause hormonal problems and I have done everything I can to change all the things in my life that can cause hormone issues- so I've changed to natural beauty & cleaning products, reduced stress through daily meditation and yoga and become vegan. I also take supplements like magnesium, licorice and things that will help with high stress and cortisol leves like ashwagandha. I know these are quite drastic changes but I was desperate to get my life back.

I don't know what's done it but i could feel one of my fibroids easily before and now it's quite difficult to feel it, I'm sure it has shrunk. All the symptoms I was having have either massively reduced or disappeared. If you're looking for something that might help that is natural, it might be worth considering. (I still have cheese and ice cream for an occassional treat so it's not ALL bad! smile ) 

I hope this helps and you get to the bottom of what's going on for you. 

5

Hi Belle, sorry to hear you're going through this, the continuous bleeding is really distressing. I too had that a nearly two years ago, along with stabbing pains and bloating. I was put on Esmya, which did ease the bleeding eventually - it takes a few weeks to start to shrink the fibroids - and have been on 3 courses altogether. My situation is different to yours as I should be in menopause at 58, but the fibroids have persisted. You could suggest Esmya while you decide your options for removal. I am surprised you are on synthetic progesterone as I thought progesterone causes fibroid growth - Esmya is a progesterone receptor blocker. I guess the gp is just addressing the bleeding.  Good luck!

6

Hi Christine, thank you for reply. I will look into Esmya. I know that there is another type of hormonal treatment which basically brings on a premature menopause which I definitely don't want. Does Esmya have an anti oestrogenic effect do you know? It's interesting what you were saying about the progesterone, I will have to contact gp on this as it's obviously not working with bleeding starting up again last two days. Is fatigue a symptom of fibroids? I have been feeling exhausted despite my last blood test showing that my blood count was ok. I know it's possible that it may have dropped in the three weeks since I was last tested.

7

Hi, Esmya does cause menopausal symptoms but they stop as soon as you finish the course. I would discuss with your gp whether they are suitable for you. For me the side effects were worth it, just to get relief from the bleeding and bloating, and although mine have grown back between courses, I have never bled like that since. It is over 2 months now since my last course and so far they have not grown back significantly, and I have no bleeding.

Yes I was fatigued as well, no one ever said my blood count was really low, but all that bleeding can't be good for you. The treatments all seem a bit of a lottery as there are conflicting opinions and of course everyone's case and experience is different.

8

Thanks Christine, yes it really is a lottery and it's very difficult to decide on the best option as they all carry some element of risk. I just want to equip myself with as much knowledge as possible before ultrasound so that I can make an informed decision rather than being rail roaded into the easiest option for the gynaecologist which can often be the case.

9

Hi Betty, thanks for info. I admire your discipline, not so sure I could do it. Yes, I sincerely hope that I'm not dealing with anything more sinister. Tuesday can't come soon enough. As I'm bleeding constantly I would imagine that I'll have to make fairly rapid decisions. Generally not feeling great in myself at this stage and the worry doesn't help.

10

Hi Betty, I'm also trying to regulate my hormones with diet, and with supplements ( I take DIM, milk thistle and curcumin). I have cut down on dairy foods and red meat significantly. I am trying with the alcohol but that's harder! Only time will tell if this is making a difference.

11

It is so difficult! I think just a massive reduction in itself is great and then not be too hard on ourselves if we do decide to have the occasional treat. It's been about 2 months for me now and I'm really benefitting from it. My main symptom was fatigue and bloating plus rashes and skin issues and I've not bloated or had a rash in such a long time and my skin has never been so clear. The fatigue is improving gradually and I'm now starting to get my life back. I'll look into DIM, milk thistle and curcumin. Good luck! 

12

Thanks Betty, good luck with all, whatever you're doing it seems to be working.

13

Hi, due to numerous fibroids which were found on normal ultrasound and then 2 further transvaginal ultrasounds, i had a myomectomy earlier this month for the one that was considered to be the one causing post menopausal bleeding the past 2 years.  The ultrasound should show the size of the fibroids and obviously location, although i also had an MRI after the transvagina scan as the first consultant was keen to do a hysterectomy and i wasn't.  I was able to have a myomectomy by hysteroscopy as fibroid was less than 10cm.  Esmya is usually used to shrink fibroids before surgery.  Best wishes.

14

Hi Anne, thanks for reply. Well hopefully mine is less than 10cm as a myomectomy would be my preferred option also the more research I'm doing. Hope you're making a good recovery. I have read a lot about focused ultrasound treatment also but I don't know if that's only available in U.S.

15

I was very nervous about having it done but the actual procedure with a general anaesthetic went well. I've had a lot of gas and bloating since but i understand this is usual, overall i'm doing fine, apart from a severe dose of diarrhoea 2 days after op which may be due to drugs given to me during procedure, but not sure.  Thankfully this is all resolving now.  Sure you will be fine, I was such a wuss about it all but apart from one night when i had quite severe cramps no pain, think this was more due to the stomach upset. Take care.

16

Dear Belle101,

I have fibroids and have had my periods last a whole month. My hemotoligist told me that sometimes if you are low on iron, you will bleed more. So, I take 56 mg of iron a day and I also take 2,000 mg of fish oil a day as an anti-inflammatory. They have slowed the bleeding down to 5 days, only 2 of heavy bleeding. As far as shrinking, I do not know how to accomplish that successfully. Hope this helps. I do not have any pain and I am 48. Hoping for menopause soon.

17

Hi

I am new to this forum as well.I am 50 and started my periods at a very early age and bled for weeks at a time and had a great deal of pain.In 2003 I was admitted to hospital with severe pain.It was discovered I had a large fibroid and had a myomectomy.After that I was fine,I had light periods which came every 28 days.Last year I started getting my periods all the time often lasting 7 weeks at a time,the bleeding was very heavy and the pain was so bad I was in bed all weekend.I had a scan and they found over 25 fibroids the largest was 5cm.I went to the doctor who referred me to a gynecologist.I opted to have a fibroid embolisation.It is now three weeks since I had it and am still in the same pain I had before I had the surgery.My stomach looks like I am 7 months pregnant. but have had no bleeding.I have to have a scan next month so am hoping the fibroids have started to shrink.The actual procedure was ok,you remain awake and are given morphine throughout the surgery which last one hour.If you want children I would have the myomectomy.

Regards Millie

18

just to say, the fibroids can grow back but then again might not.  I postponed my op on 3 occasions as i was so unsure what to do.

19

Hi Belle, we're in a similar boat, so here's my 10-pence worth fyi.

First, I just wanted to reassure you that irregular and extended bleeding is definitely one known side-effect of fibroids. I had exactly the same thing as you: non-stop bleeding which the doctor prescribed Provera for, then sent for an ultrasound (or rather, I demanded one). Anyway, the bleeding was shown to be because of problematic fibroids.

Like you, keeping my fertility is important, as I haven't yet had children. I am going to be getting a myomectomy, however, my specialist has put me on Zoladex (another HRT like Esmya) in order to shrink them before I get a myomectomy. There are limited ways of dealing with fibroids if you want to keep fertility, because some things like UFE are not recommended, and I understand that MRI-guided ultrasound is still an unknown quantity as far as fertility is concerned.

Esmya and Zoladex DO help shrink fibroids, but are both short-term solutions, because you cannot be kept on it indefinitely due to serious long-term side effects such as bone-density loss. They're generally prescribed in order to manage symptoms before surgery.

I imagine you'll be offered a myomectomy, but depending on where and how big your fibroids are it'll be laparoscopic or laparotic. I'm going to have to have laparotic, which will be fairly major surgery. You might be asked if you want a hysterectomy, but you should not feel pressured to consider it as an option unless there is a serious malignancy which needs addressing (but that is VERY rare, so don't worry yourself needlessly by looking up the worst-case possibilities online, believe me, it's not worth it or necessary, wait to hear back your ultrasound results.)

Finally, just want to reassure you that what you're going through is actually pretty common, so don't worry too much! Stress is bad for your health, and some people even think it plays a part in fibroid-growing hormone imbalance. (I don't know if it's true, but I DO believe stress is as bad for your mind and body as any illness). Like some other commenters here, I changed my diet to cut down and then out meat and dairy which are known to contain hormones. I have no idea if it'll help long-term, but I want to give my body the best chance to eventually have kids. Unfortunately fibroids can grow back after myomectomy, so I am trying to implement changes which are thought to help prevent hormone imbalance. So...yeah, that side of things is a personal choice, just do what you think is right for you.

But as far as surgery, insist on hearing ALL the options, and get a second professional opinion if you're still feeling unsure.

Sorry for the long reply, but I think we have lots of similarities in our cases, except I'm now nearly a year into this. Anyways, best of luck, and feel free to ask if you have any more questions.

xox Rosie

20

Hi Rosie, thank you so much for your very informative reply, it was very helpful. Yes, we do share a lot of similarities. I am hoping that I will be a candidate for myomectomy also, all will be revealed next Tuesday. Dreading it but also really want to get to the bottom of it at this stage. I've been bleeding non stop for almost six weeks now despite being on 5mg Provera which was helping ease it a little initially but not anymore. I actually contacted my gp this morning to see if maybe I need to go on a higher strength. I also have to get a smear test done to rule out any sinister cause but that can't be done until I'm finished bleeding for one week which I haven't had. I'm waiting for her to come back to me. I gather that both of the medications you mentioned put you into a temporary state of menopause which scares the life out of me. Have you been prescribed either? You're so right regarding stress, I'm trying to manage that a little better but it's difficult with everything up in the air at the moment.

Xox