I'm so done with this fibroid 😢

Women's health
1

Hi everyone ... I do don't really know if this post is me needing a shoulder to cry on, or just searching for confirmation that all will be okay.

Sorry in advance if this turns out to be a novel!!!

I'm 29 and was first diagnosed with a fibroid at 21. It was discovered because I had a full period for 32 days. Docs said to leave it be, the bleeding would settle, and so it did. I went back to having a regular period for 11 days full flow. Every year at the same time for 7 years I had a 30 day full bleed.

2 years ago is when I came to blows with my fabulous fibroid. It had grown significantly but not enough to "qualify" for any procedures to remove it. It was about 7cm X 7cm as far as I can remember. The bleeding was horrendous and the pain was really bad.

Today, my fibroid is 20cm X 19cm. It's huge. Over the course of the last year basically, they've had me on 2 courses of esmya, 3 courses of decapeptyl (which is awful and puts you into temporary menopause, @28 yrs old), a laproscopic myomectomy and mountains of pain killers...obviously nothing has worked.

I'm now scheduled to have UFE on 26th sept. I was discharged from hospital on Tuesday gone after 6 days hooked up to drips and morphine. I'm done with this fibroid, I'm really done!! I can hardly walk, the pain is horific and I feel 9months pregnant... something I'll probably never get to experience???

I have no kids, I have no partner. Yes I would like kids but let's be honest, this womb of mine isn't showing signs of wanting one now is it!!!

I'm petrified of this procedure to come, the radiologist has warned of the pain of it and what's worse, this won't be the end. They've kindly informed me that i will most likely need a surgical myomectomy afterwards. Pfffft, seriously, I'm done!

I have begged for it to just be removed, just do it, take the bloody thing out (no pun intended). But they won't, too much of a risk of severe bleeding because of its size and likelyhood of a hysterectomy!!!!! JUST DO WHAT YOU'VE TO DO....PLEASE!!!!!

Well isn't that fantastic, why the hell did you people let it get that big in the first place instead of monitoring it more closely!

I'm so sorry to have ranted on for so long but I'm just so... sad, I'm actually sad and heartbroken tired and fed up!

Would love to know if other people feel or felt this low??? Thanks in advance for your words of experience ❤❤❤❤

2

OMG

U poor thing. Yur post has only just come through to me .

I thought I was suffering but omg .

No wonder yur at yur wits end.

I was weepy last week and at the point u need major TLC

Why on earth hasn't it been removed before now bless u.

Yur periods for one r not normal for a young woman.

I'm 44 and bleed normal for 2 /3 days.

My doc isn't concerned about my fibroids as they small (3.2)

But yurs is clearly growing with heavy blood loss .you must feel absolutely dreadful.

You need to get a second /third opinions. Don't give up hope yet .I'm sure they can get get rid of the nasty fibroid without your uterus.

The only glimmer of hope I can give u is that when you do in the future get pregnant, it is NOTHING like fibroids. I've had 2 children and I would rather be pregnant with quads than have fibroids. So try and turn your frown upside down and carry on fighting the damn fibroid! !☺😊.as I found out last wk by writing on here it gives u a little lift with everyone replying with there stories so don't apologise. Just keep writing ☺☺

3

Dear Erie,

it is a problem that takes a woman to her wit's end. I have know about my fibroids for about one and a half years, and I have tried many things, all the natural remedies, all kinds of questioning (WHY did I get this problem?), and also Esmya for 3 months. I have often been completely hopeless, yes, feeling that low, tired, fed up,  without any possibilities for action. 

I had an open myoctemy done two weeks ago. I cannot say anything about the future, of course, but I had a really nice surgeon that I trust and I told him, just before disappearing into the anasthesia: Please take care of my uterus. And he did. He took out 14 fibroids (total 1.1 kg!), but he took care of the uterus.

For me now this was the right step, I cannot say anything about anybody else.

I did bleed a lot, and afterwards had to accept a blood transfusion. But I already feel quite strong, at least to me surprisingly strong, and the pain is not as terrible when you are feeling it as when you are fearing it. In some ways, it feels like a hopeful rebirth (even if I know about the statistics saying that the fibroids will just be back!).

I think you should really look into all possibilities, also other doctors, if you have this option (I realize there is also often an economic question). Find someone you really trust to be listening to YOU, and relating to YOUR point in life. Don't let anyone do something to your body that you are not 100% wishing for them to do. 

The doctors adviced me to get rid of the uterus, but they respected my wish (or even : need) to keep it. 

I don't know if this is useful. After all, it is a very lonely problem, somehow eternal and impossible to solve totally. But sometimes I manage to make it part of my life, without the desperation. I say to myself: this is my difficulty, I will live with it and learn from it.  

I hope you will find the right solution for you.

Anna

 

4

Hi erie1987,

I so feel for you - please hang on in there! It is incredibly frustrating and most of us on here have had journeys similar to yours. And feeling low and fed up is totally normal! One of the positive things I can take from your experiences is that they've caught it whilst you're young enough to go through the procedures and treatments. It's a shame that it's gotten that big but see how the embolization goes and then push for the myomectomy once you've recovered from that. I know from being on these online support boards that people have gone on to have successful pregnancies after myomectomies. 

Even though I had really heavy periods from my teens and have been on iron tablets for years, my own fibroids didn't get diagnosed until I was 34. I've had one myomectomy to remove 20 plus fibroids (my womb was the size of an 8 month pregnancy by then) and I've got a new consultant who doesn't want to do a repeat myomectomy as she says that it will be too complicated and I will be left with adhesions. I agree with her, so we've doing things to prevent the hysterectomy which I know is in my future. I've just finished my second round of Esmya, I've had a hysteroscopic resection procedure and I'm going to be put on a third Esmya course whilst my UFE appointment comes through. I'm 42, no kids and no partner. I totally feel your pain. My quality of life has been so bad that sometimes when I've seen my consultant I've been like "I want a hysterectomy..!". She's great as she's talked me down on those occasions! It's tough but hopefully we'll all get wherever we need to get to - better periods, improved quality of life, maybe even a healthy pregnancy. 

Take care x

5

Hi Erie1987,

Reading your story is almost like reading my own. I too am roughly the same age as you, with a similar size of fibroid and symptoms. I'm sorry that you are going through this too.

I find that age is an issue with regards to treatment for fibroids, as my experience is that gynae seem to struggle to find any kind of solution when menopause isn't on the immediate horizon. I find being young and having a fibroid is a very lonely place to be.

I am seeing a specialist soon so I am hoping to get some treatment options then. I completely empathise with you feeling that the fibroid was left to get bigger, I too feel let down the exact same way. I have been back and forward to hospital over the last 2 years and only by chance was my fibroid discovered finally, at a grand size of almost 15cm. It certainly didn't get to that size overnight!

The pain, flooding, fainting and relentless bleeding have certainly taken their toll on my physical and mental health. I wish that I could be more positive in my story, but all I can say is that you are definitely not alone.

This forum and the ladies in it have been so helpful to me in the last few weeks since I joined. I only wish it weren't a public forum.

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Hi, so sorry you've had to put up with this, I can't believe you've been made to suffer so long. I've heard positive things about UFE really helping to shrink the fibroids, although for everyone the pain level is high. Not many other options that work though, and it will probably make the surgery, if you need it, much safer. Hope it works out for you.

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Hi Erie. I sympathise with you I had a 10cm Fibroid which has shrunk to 7cm after UFE which was done on 18 Jan. I would recommend it but I'm sure the Radiologist advised not to get preganant ( even though I'm 49). Just worried it may not be suitable for you for that reason.

So sorry you have been through this. It's the most horrible thing I have ever had to deal with. If you do go ahead with the UFE feel free to message me. Yes there is pain but it's not that bad. Good luck .

8

Hi Erie, I'm so sorry to read your story! You're going through so much, it doesn't seem fair at all. So much for the old "watchful waiting" approach, these things spiral out of control so quickly! I truly feel for you.

I'm going to try to give you a couple of things to look at your situation a little more optimistically, even though I know you feel like you're at rock bottom right now. I've been trying to do the same for myself, and it does help me a little, on the mental side of dealing with this.

Firstly, in a way it's good you ARE so young, so time is on your side to get this fixed and still have plenty of time after to start a family if that's what you want. I'm nearly 36 without children, and like you, the specialists don't want to operate because it could be too dangerous. I really wish I had been diagnosed several years ago, so I would have a bit more breathing room to get myself fixed before my fertility declines.

Second, I know it's hard to accept the lack of control you have over your options for dealing with it, but at least you're in a country where a solution IS being offered, and you're not having to pay exhorbitant amounts for it. I've read so many heartbreaking stories on the net of women in the States who simply can't afford to have the surgeries and medications they need, or they feel like they're being experimented on with the meds they are offered. Then there must be countless women in non-first-world countries around the world who have literally no solution to the problem. So I guess that's another plus for us in the Western world.

Unfortunately, if you're under 40 (or it may be 35 in some countries) doctors will simply not allow you to choose hysterectomy, or to put you in danger of it, unless there is a serious, life-threatening malignancy. I know you would rather put up with the risk of hysterectomy just to get sorted, but it's simply not an option at your young age. However, the plus of this is: well, at least you don't have the life-threatening malignancy! This hit home for me when a question came up about one of my fibroids, and I was packed off to an oncologist for a biopsy. I was so scared it could be a sarcoma, but it came back negative, thank goodness. However, when I'm starting to feel emotional or angry about what I'm going through at the moment, I think back to that time when I was essentially told I could have an aggressive, fatal cancer, and it reminds me to be thankful that it's not worse. ....You know?

Anyway, I don't want to sound like I'm lecturing, I'm just trying to share some coping mechanisms that have worked for me. Everything passes, and this will pass too. You may have a rough journey ahead of you for the next year or two, but once it's sorted you'll feel so much better. Try to focus in on those few positives, and not be overwhelmed by the negatives. Something you could consider doing is keeping a jornal or video diary of what you're going through which you might be able to share later to help other women in your situation. It's something I started doing recently, and it really feels good to talk out (even just to myself) what I'm feeling, and all the crazy twists and turns of this journey with fibroids. I haven't shared it, and don't know if I will, but it does help me feel a little more in control, and gives me another positive way of looking at my fibroids, like, well, one day I might be able to share this and help someone else. Idk, just a thought!

Best of luck hon, sorry for the long reply, I just really felt touched by your story. 

xox Rosie

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I know you are upset I was diagnosed with fibroids at 27 and had surgery to have it removed and they left one in because it was small over the 7 years now that one grow to be 6cm and I don't how much bigger and a also grew another one in the same spot as the one I had removed because they dont tell you that if you have a myomictomy wgich is a cesection then one will grow back in that open space real quick, so five days ago I had a UFE where they cut off the blood supply, I went that route because a fibroid will not grow back and it is like a grape but not the same size and it just dry out like a prune. The pain will go away and the heavy pressure a blood flow. I would just contact a IR doctor that specializes in embolization. He will tell you if he can perform the process. It is a 30min to 1 hour process. I was in pain for a few hours but you have pain medication that will put you on cloud nine and you can work the next day. I had one IR doctor say no but another said yes. If I was you I would try this it last for 10 yrs because they get back big.

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Best way to go if you want to get pregnant embolization.

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I reread your post yes UFE hurt just tell them you want a pain pump. I have never taken any pain medication wirh my two fibroid that are the same size as 6cm each but you will be fine at the end. The IR process doesn't hurt at all but just let them give you medication on IR even of it doesn't hurt cause I did and after I was in post ip that is when it all breaks loss the gates bust open and the cramps start. It will take over your body to where you feel like someone is taking your insides and twisting them at their best ability and there isn't nothing you can do about it, so take the medication left to right two days later you feel energized like weight is lectin off you.

Take care be safe I am tell you the truth. God will bless you.