How do you "forget and move on with life"?

Women's health
1

Hi,

I'm 30yrs old, with no kids yet (no man yet either haha)

I found out a few weeks ago I had a 11 x 11 x 11 fibroid on my uterus. My uterus is apparently at 16-18 weeks.

I've had a variety of symptoms for a long time but I just ignored them because ..well I wasnt ready to acknowledge something was wrong.

Anyway, my gyno didn't really discuss surgery with me as an option. He said it's massive surgery and it should be a last resort. If theres a chance I'll lose my uterus, then it's definitely not an option for me yet.

He mentioned some new medication that will be coming out here in a few months that can shrink the fibroid. I'm not sure if it's just Esyma or something else yet. So now it's just a waiting game.

In the mean time, how the h3ll do I get over this and get on with life? I can't think about anything else. I'm so distracted. I'm so moody and angry that i have yet another health issue to deal with. I'm always trying to research obsessively (although truth be told I'm just reading the same stuff over and over again. There isn't much out there).

At the end of the day, my only real option is "to do nothing" and wait for these meds. So the sooner I accept this as "it is what it is" the better.

So. Any tips? Stories of experience? Virtual hugs? haha

Thanks

2

Jess, Id ask if theres anything he can do in the meantime and might not hurt to get 2nd opinion.

I was told i needed a hysterectomy for 1 fibroid so Fri im going to talk to surgeon for 2nd opinion.

I have had symptoms off and on for 5 years, have been put on meds for freq urination and anxiety, been told it was all in my head, etc until an urgent care dr ordered an ultrasound and found lime size fibroid putting pressure on bladder. I know your pain and frustration. Only you know whats best for you but first get informed about all the options available to you. Hang in there, we are here to listen!

3

Dear Jess, 

Your post has really moved me as I can very much empathise. I'm 33 and found out a couple of years ago that I had a fibroid. However it wasn't until July this year after having a laparoscopy following a nuber of symptoms that it was much bigger than they thought, and intracavity, taking up the top of my uterus blocking both tubes. My symptoms worsened during the summer and I was experiencing really prolonged and very heavy bleeding, horrendous pain and ended up in hospital with severe anemia 10 days before my wedding. Thankfully I had a lot of medication which sorted me out and amd now on monthly zoladex injections before hopefully having an operation in december. 

Like you, it was and at times still is the only thing I can think about but please try to stay positive, as hard as it is. One thing that's not been helpful is the lack of clarity but I have made it very clear to the doctors that they need to explain to me what the hell is going on otherwise they is no way i can manage the situation. so if I were you, I'd get your doctor to explain what the plan is, which you are perfectly in your right to know. Knowledge in this situation is very helpful.  He may be considering zoladex which shrinks the fibroid and makes the operation safer with a very very low risk of removing everything. That's what my route is. 

Try not to worry, It can be sorted but do demand that they put a treatman plan in place. sending lots of virtual hugs! x

4

Hi there! Where are you? In Canada it is called fibristal and you can get it now. And it works! smile

5

I am so sorry you are going through this! I have innumerable fibroids and have pain and bleeding. I am 51 tho and my cycles have become very erratic because menopause is hopefully approaching. I have been waiting for esmya to come to the US. Are you in the US and when did the doctor say it is available? Fibroids .com has great advice on a UFE procedure which I am also looking into. It's really crazy what we go through as woman! Big hugs to you and know you are not alone!

6

Jess, 

you are so young.  you should look into a myomectomy if you plan to have children. My sister did it and had two children afterwards  You cant ignore it, it will only get bigger.

7

Hi Jess,

I'm sorry you've had to join us in the world of fibroid misery. I completely agree with you, having researched them there is very little knowledge of fibroids in the medical world compared to other ailments. I had a different experience, I was unfortunately misdiagnosed over a period of years and my fibroid was found by accident. By which point it has grown to approx 15cm.

Whilst I have a love hate relationship with esmya, it has alleviated some of the horrible symptoms I had. It hasn't been the holy grail of fibroid treatment for me but I'd definitely recommend you try it. The first 4 weeks have some side effects but if you persevere they will subside.

I've been told that myomectomy is my only option, however I've read some recent articles coming out of the United Arab Emirates in favour of UFE. A stark contrast to the advice given in the U.K. So when I meet my consultant next I'll be armed with plenty of questions to make sure that if I have an alternative to open surgery, I'm at least given the chance to consider it.

This forum is really helpful and kept me going when I was at rock bottom so I hope you find the support you need here

8

Hi Jess.

First of all, let me say I am sorry to hear that you are suffering and

I and many of us feel your pain.

I was diagnosed with a large fibroid in September 2015 after a long

time of frequent urination and an ever expanding waist line (quite

often being told it was anxiety).

I had a Uterine Fibroid Embolisation in April 2016. My waist shrunk

my bladder returned back to normal. My periods were still heavy

but I thought that it would become lighter given time.

My third period after was something like a horror scene. I

developed back, bowel and rectal pain. Took in to hospital I was

scanned, xrayed, poked and prodded. All they could find was a large

Fibroid.

Suddenly someone from Gynae came around and told me the

Embolisation had failed. I was offered to have the procedure

done again. Which I refused.

Now I am on Esmya, which I have been on a fortnight looking at a

Hysterectomy as I am still in constant pain.

I have to say however, UFE works well on alot of women.

I an 37 with 1 child and have completed my family. I have chosen

Hysterectomy because It is the only way I can assure

I never have another fibroid again.

So all I can advise is do your homework. There are lots

sites that can tell about all the different options. Above all once

you have decided don't be railroaded into something you don't

Want.

Keep us informed. 😘💜

9

Hi Jess,

I know how you feel. I ignored mine until recently also, now I spend most of my days doing the same thing.... Research the same articles over and over again. I saw my dr today and explained that this what I'm going through. He told me to be sure to build a support network, family, friends, and these online forums. As far as I know the meds to shrink fibroids can only be used for a max of six months, normally a pre-op treatment. Hormones are the cause of growth in fibroids so the meds used to shrink them typically block certain ones while boosting others. You are very young so I don't blame you on not wanting hysterectomy. If the new drug coming out doesn't work there are other surgical options that would allow you to conceive in the future. You'll always have support aND someone to vent to here. . . HUGS

10

Hi Jess, wishing you lots of luck and strength through this. Once you discover fibroids they take over your life don't they? Like you & others on here I also find myself researching night after night and getting no wiser. It's infuriating how the gynae's just dish out hormone pills like sweets and tell us to just wait and see. I have given up my job due to my fibroid, I was a dog walker but after receiving blood transfusions for anaemia, due to the clots and flooding I couldn't continue.  I now work in an office so at least I can earn a wage whilst being anaemic, but sitting and waiting feels like torture when your everyday life is impacted. I wonder how they'd feel if they had a fibroid growing in their body causing an array of symptoms that they just need to "sit tight" with. My GP has been wonderful but the gynaecologist has been a waste of time for me.  I'm 39 & have an 8cm submucosal fibroid which is very low in my uterus, it's squashing my bladder and pushes down on my cervix so it feels like a baby's head has moved into birth position. I saw my gynaecologist today and he wants me to start Esmya which is most likely what you'll be getting, are you in the UK? It's a very expensive drug £114 per month and so my gynaecologist wouldn't give me the prescription, he's made me go back to my GP and get it from her to save his budget!! He's told me to take it for 3 months, have a 2 month break and see if my period is better; if not go back to my GP and repeat another 3 months of Esmya, if period is still no better then I can get a third dose for a final 3 months. By then it's sure to have sorted out my periods and with that he's left me to it! He doesn't want to see me again, not even for a follow up scan. I'm so frustrated with the lack of support from him, he's basically sent me away and told me to self medicate a new drug over a period of up to 15 months! He only wants to see me again if my GP refers me back to him as the NHS will only allow him 2 visits per patient and I've had my 2 visits, I'm furious!! 

As far as I can tell Esmya is great for reducing the volume of fibroids but they increase again after you stop taking the pills so it's not a long term solution. I'm going to get a 2nd opinion because I need to have a plan that's better than "wait and see". 

I'll keep you updated with my fight in the hope it might help you too, sending love & virtual hugs, stay strong and push for a game plan as I wish I had xxx

11

How did your appointment go? the idea of a hysterectomy must be so scary for you, hopefully it won't be your last option. 

it's really quite sad how quickly doctor's can dismiss things and make us feel like we're imagining things.

12

thank you so much for your reply. I'm really appreciative of everyone's comments. It's crazy to think you're so young as well and yet have had them for a couple years already. I really wonder how long they take to grow. I feel like mine had a growth spirt in the last few months.   

Did they manage to unblock your tubes during the laparscopy or are they waiting for your december surgery? When we're this  young, i just feel like the added uncertainty/fear about fertility really adds a whole other level of emotional pain/torment. I hope everything goes for you! please let me/us know. This thread can be for the benefit of all of us  

I really went into the gyno appointment thinking a laparoscopy was a real option, or that if not, he'd do the open surgery, and that would be that. So I was really taken aback when he was like no no, it's major surgery. I'm seeing him again in mid dec so I'll definitely prep myself with more questions.

I'm so baffled by the whole situation; when they're small and non-symptomatic, they tell us to ingore it. I get that. no need for drastic intervention if there's no real symptoms. But then they grow and get too big, and then they're too big and complicated! Such an odd conundrum

 

13

Hi there. I'm in Australia. I'll check to see if Fibristla and Esmya are the same thing. I bet they are. 

14

thank you so much for your reply. I'm really appreciative of everyone's comments.

I'm in Australia and not sure when it's available. I called the gyno back the other day and asked him to find out. At least then I can have a timeframe! 

I've read about the UFE procedure, and it does sound like a better option than a hysterectomy. I'm too young for that now, but hopefully it's a viable option for you. Although maybe if you can try to control your symptoms, menapause will give your fibdoids a kick up the butt! haha have you tried Tranexamic acid/Lystedia to help with the bleeding? I've just started it a few days ago, and it is super powerful. It's actually quite a surreal experience to go from such heavy periods to the other extreme of super light. Definitely on an emotional rollercoaster! 

15

thanks for your reply. it's nice to speak to people who are going through the same thing. 15cm is so big geesh. Has the Esmya shrunk it? 

It seems as though Esmya is really a pre-op medication. I have read how it's been approved for longer term use but I can't imagine spending the next 20 yrs of my life taking meds. I think that the myometcomy is on the agenda for me, but my dr wants to shrink it first? Well i think that's what his plan is. 

I wonder, with such a big fibroid, are you getting bad lower back pain? I get pretty intense pain when I bend. It's making life a little difficult, especially since i like to exercise. I also find myself much more tired/weaker than i used to be. I know this is partly because I've become anemic but i wonder if it's also another symptom. 

 

16

Hi Kelly, 

thanks for your reply, although I am so very sorry to hear about your experience. You've really had a tough time. I'm glad that you've had a child first, and if you think you've completed your family, then that is awesome! At least these ba5tards didn't take that away from you! You're still so young to be thinking about a hysterctomy, I hope  Esmya works for you and relieves some of your pain so that you wont' have to go through any more pain. x 

17

thanks for your reply jess. I'm pretty open with my friends about all of this and in explaining it. they're great listeners but I don't think they get it. I actually took a video of my stomach yesterday morning (when the bump is most noticeable) to show people what I'm dealing with. i think it really put it into perspective when they see this giant ball in my stomach! 

you know the (not so funny) thing. When i was younger I went on a GNrH antagonist for endometriosis (was pretty bad, had 2 surgeries at 17-18yo) and basically experienced all the side effects of a menapause... and now I have a uterus of a 4-5 month pregnancy. it's like a "try before you buy" for menapause and pregnancy. haha (laughing yet crying haha) 

that's the other reason my dr wants to wait for the new meds.. i know they also use GNrH meds to shrink fibroids before surgery, but they don't let you go on that treatment twice. so i guess it's either Esmya or nothing for me. 

18

Hi Jaqui, 

I'm so sorry you had to give up your job. It must be a really hard transition from being active all day, to sitting in an office all day. I'm sure that change in lifestyle has been tough for you. I like to be active as well, and I find myself infinitely more fatigued, and also the lower back pain is a new hurdle for me to deal with. When you're an active person, being sedentary is a cruel punishment. 

Your anaemia sounds really really extreme. Have they offered you Tranexamic Acid to stop you from bleeding so much? It's not a hormonal medication and it's been around for a long time, so should be safe. i was surprised to find out I was anaemic but it makes so much sense.(everything all makes sense now. all the pieces of the puzzle of all the symptoms that I blissfully refused to piece together). i've just started the trans acid in the last few days. the change is DRASTIC. my periods are actually so light, it's surreal. if no one has mentioned it to you, you should ask, especially since you're so anaemic! 

Im in Australia. Im confused why your dr would refuse to prescribe the medicine? do specialists have a financial limit to what they can refer in the UK? that is so surreal! if he's making decisions based on money, you might want to find a new specialist! that's not good at all. and in general, he doesn't sound so great. I wish there was a review system for doctors and specialists! 

not sure how much the meds will be here. some meds get subsidised and are super cheap, and others dont. Hopefully it wont be too expensive

 

19

Hi jess. I actually just got a prescription for tranexamic acid . My current situation is that I have spotting everyday but have not had a heavy cycle since the end of august! I wonder if I can take it to stop the spotting all together?? It's better than a heavy period but everyday is really annoying. 😫 I can't believe how crazy this past year has been.

20

Oh no i can't believe you spot constantly and don't get a break

I don't think you can take the tablets constantly like that. The Dr/instructions are very clear about only taking them for first 3-4 days of each period. I remember he said "it can't help with the length of your period or the spotting". Last month, from the first day of blood until the absolute last day of nil blood, it was 11 days. I thought that was rough! Can't imagine basically a never ending period =/

I guess there's no harm in taking them for a few days every month to give you a bit of a break but be careful not to take them for more than a few days in a row!