How do you "forget and move on with life"?
Posted , 11 users are following.
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
0 likes, 30 replies
jessicadower jess48383
Posted
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
jess48383 jessicadower
Posted
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.
jacqui58894 jess48383
Posted
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
jess48383 jacqui58894
Posted
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
jacqui58894 jess48383
Posted
Hi Jess, thank you for your supportive message and kind words. Tranexamic acid has literally saved my sanity! I took it for the first time last month and it was like a miracle drug, I've never had such an easy month. I'm glad it's worked for you too. I'm stocked up ready for this month, although this month I start on the Esmya so I'm thinking that I may not need tran acid this time. In the UK we have the National Health Service and receive free medical care but the system is in crisis and there is never enough money available so I think I'm going to go to a private consultant and put it on a credit card! I've read that 80% of hysterectomies performed on the NHS were due to fibroids and it has cost the NHS £000's so it's a policy that gynaecologists have to follow a protocol whereby hysterectomy is a last resort. I'm not saying that's a bad thing, when there are other less invasive options then of course they should be explored but it just feels like they want to shove us all on Esmya and send us packing with fingers crossed that we don't bother them again.
My anaemia was just like yours, I had an excuse for every symptom. I was breathless because I've been under a lot of stress and needed a holiday, it was just tiredness.... The dizzy spells were due to low blood pressure which I have always had... The heart palpitations were curious, I didn't know why I could hear my heart thumping in my ears each time I climbed the stairs but I was too tired to think about it so I just lay in bed til it stopped thumping and let me get to sleep,
Like you I can now put so many pieces together and of course I wonder how I didn't even know I was ill!!
I wish you lots of luck Jess, please keep us posted with your progress and take care. I hope they've sorted the meds for you now x
jacqui58894 jess48383
Posted
Hi Jess, just read up on some of your other replies. I think a lot of us feel tired and I've heard that is because the fibroids are pushing on our organs and preventing them from working as efficiently as they should, coupled with anaemia I think you can forgive yourself for being tired 😘X
marsha_56554 jess48383
Posted
Hi Jess
I'm 36 and discovered I had fibroids this january, I've got no man and no children, have focused on my career and stuff and thought that I would just get my fairytale ending meet Prince Charming and pop out two kids before I'm 40.
I saw the Gyne at my local hospital over the course of the last 9 months and got two different diagnosises firstly my 2 fibroids were in the womb which would make me infertile followed by they are in the wall of the womb and won't affect fertility - a bit confusing right!!! I was offered an open abdominal myanectomy which I do not want due to seriousness of the surgery and minimum of 6 weeks recovery.
I'm fortunate enough to have private health care so I went for a second opinion, going private also meant I could have an MRI scan which is the best scan for diagnosing fibroids. The MRI scan identified 4 fibroids including one pressing on my bladder which was missed by the other Gyne. I'm now booked to have a myanectomy via key hole surgery in December which is much less evasive and a much shorter recovery time followed by a second smaller non evasive surgery to remove the smaller fibroid in the womb cavity.
I'm on my second round of Esmya which helps to shrink the fibroids a little but most reduces the heavy periods which to me was a god send. My largest fibroid is around 9x8x8 cm located in front of a 3x3x3 cm one so I look 18 months pregnant.
My advice is try to get an MRI if possible and determine the location of the fibroid as the location causes more problems than the size. Keep on your Gyne about the meds he suggested and research the alternatives to UFE and hysterectomy so you can make the best decision for you.
Good luck.
Marsha
2011 marsha_56554
Posted
Hi Marsha,
If you haven't already, you should research into morecellators, there's a lot of controversy around them being used in fibroid surgery. I'm not meaning this to sound frightening or such, because any surgery carries risk, it's just good to get all the information you need to make an informed decision. I was completely unaware of the issues about them until I started researching as I too will need a myomectomy.
I'll copy the link to the current NICE guidelines for the UK in another comment, hopefully you'll find this helpful.
Hope it all goes well.
2011
Posted
https://www.nice.org.uk/guidance/ipg522
jess48383 marsha_56554
Posted
Thanks for your reply Marsha. WHERE IS OUR PRINCE CHARMING? ! haha it's really sh!t how time isn't on our side and how on the one hand "I'm not ready for kids now" slowly/quickly becomes "I'm running out of time" =/
That's really good advice about the MRI. I didn't really think about that. Ultrasounds are so limited. I think I'll do MRI before my next appointment and see what's really going on.
How are you removing your large fibroid via key hole?! Alba below makes a really good point about the danger of using morcellators to cut the fibroid up. Based on my reading before i saw the gyno i thought it was an option but when i mentioned it he flatly said no way. He said it was banned 2 years ago. It's basically like a chainsaw so if it touches another organ like your stomach, it'll damage it. He also said in the super super rare case that it's malignant, it spreads the cancer all over your insides. Like Alba said, don't mean to scare you, but just want to make sure that you speak to your surgeon and make sure they explain it all to you.
marsha_56554 2011
Posted
Thanks Alba2011
I read the nice guidelines on this, it does sound scary. It's a hard decision to make as both versions of the surgery have major risks!
marsha_56554 2011
Posted
Alba which type of myomectomy are you planning to have? If you don't mind me asking?
marsha_56554 jess48383
Posted
Thank Jess, my original Gyne didn't perform keyhole surgery and said it wasn't suitable for my type of fibroid, there are a lot of facts to weigh up as scarring and excessive blood loss are greater with the open myomectomy.
MRI would show up anything malignant so I feel a bit better on that front.
I've done a little more research may go back with a few questions
2011 marsha_56554
Posted
Hi Marsha,
I've been told that I need an open myomectomy. But like you, I'll be doing my own research. My fibroid is large, currently just under 15cm. I have found out alot more about fibroids via this forum and others than I have from the medical world!
The question I'd be asking is if they will be using it, as I don't think it's "banned" as such but not recommended. Always good to know before you go in, although I'm sure everything will go great and you'll be fibroid free! Just think how great that will be!