New to fibroids, scary experience Hello Everyone I live in the UK and found our excellent website a
Posted , 13 users are following.
Hello
I've been having problems emptying my bladder for a while and horrible heavy periods each month. Anyway GP gave me iron tablets as levels dangerously low and sent me for an ultrasound in August. This revealed an 8cm fibroid and several other smaller ones. The Radigrapher did confirm this wouldn't be helping my bladder. An appointment was made for 2nd October with gynaecologist.
The bladder issue came to a head last Thursday. I got home and just couldn't wee, Rang GP and went to see her. My stomach had gone rock hard and she said my bladder was in retention. Long story short, ended up in A&E with a catheter which relieved the bladder and the relief was just wonderful! Doctor there examined my rear end and confirmed could feel another fibroid from that angle too (at back of womb I presume). He says he'd looked at ultrasound scan and could see a fibroid sitting in the bladder, just like the radiographer had said.
So I had a catheter in place until Monday, went back in and another doctor then spoke to me and said a fibroid of that size wouldn't cause bladder problems, that it must have been an infection. Although my wee and bloods were all normal?! Any problems before 2nd October to go to GP and get antibiotics......
I'm sorry but I do feel like I've been fobbed off. I just hope nothing happens like that again before 2/10. When I got up at 5.30 this morning bursting for a wee and spent ages trying to go, his words were whirling around my head like I'm done kind of fraud!
I would LOVE to hear other people's experiences of fibroids on the bladder and how it went for them.
Thank you for taking the time to read my story!
Xx
I was originally due to see gynaecologist October 2nd but I guess this will change things.
I am 46 next month, have a 19 and 16 year old, finished my family years ago. Mum went through menopause at 50, so I'm a few years, potentially, away from it yet.
I'm scared now that without the catheter it'll happen again. I've missed two work days with this incident. What do you think they'll suggest?
1 like, 30 replies
Sheila12345 sophie38439
Posted
Hi Sophie,
The Uterine Fibroid Embolization is the best decision I've made. Last year I went in for an ultrasound and it showed I had 3-4 fibroids, however the ultrasound doesn't show everything. I felt them growing in me and in March this year I had an MRI because I insisted on wanting to know what was going on with me. The doctor reviewed the MRI scan with me that same day and told me I actually had about 10 fibroids growing in me. After discussing the procedure with my dr I immediately scheduled my procedure with him. Excited with the results, I am now happy that I did it. About five months later I had another MRI to show that all of them have shrunk by half. There is no more oxygen in them and they were dying off. My doctor reassured me that they will not grow back for about another five years but by then I will be in menopause. It is the best thing that I've decided to do and knowing that they've already shrunk by half is a great peace of mind. The first week of the procedure is a little difficult from the pain but after that I think you will also know that it was worth it
sophie38439
Posted
Hello everyone
You've given me lots to think about and it helps so much.
Thank you for your messages. I'm not sure why only hysterectomy was given as an option.
I guess she's right, I'm long done with having children, I'm 46 next week, my eldest is 20 in February and my youngest 17 in December! To her I guess it's a done deal. I'm not needing my uterus anymore, why not get it over and done with, have the recovery period and get on with my life rather than effectively and potentially just dragging out the inevitable?!
Next week I'm seeing my GP and I'm going to talk too her about the chances of Esmya working and I'm going to ask for a se ins opinion. I want your know if an 8cm fibroid is a big one for a start .
Thanks again.
camelia61043 sophie38439
Posted
jazmin42797 sophie38439
Posted
Hi Sophie.
I have a 15cm fibroid and got my surgery in a couple of weeks. I’m 26 yrs old and I feel like I’m going to the toilet every 20-30 minutes even if I haven’t drunk anything, and sometimes I’m desperately needing the toilet and it takes ages for it to come out, and when it does it trickles out which is sometimes quite painful. My gyna told me that it’s because my fibroid had pushed my bladder to the side of my body, so it weren’t so much blocking, but it’s because my bladder shouldn’t be there, had further to travel & was being pushed away so may take a while to come out.
The body does all sorts when things are changing and going on. But if
You are worried, I wouldn’t definitely
Check in either your GP or gynaecologist and make them aware you aren’t going anywhere until you have answers & they have settled your concerns. To them this is a very common thing, but to us it isn’t so sometimes they don’t think from our point of view.
I hope you get the answers you need! X
tina95476 sophie38439
Posted
Very similar to Sophie and Barbara. Numerous fibroids between 5cm and 14cm and polyps. 50yrs old. 2 grownup kids. C section 21yrs ago. Weeing all the time and bladder never empty. Anaemia so on iron pills. V v heavy clotting periods and vary from 7 to 14 days and sometimes only a week apart. Just started on zoladex implants to try shrinking before hysterectomy as that basically was the only option given. Side effects of implants just coming out and not good. Worried will affect my fulltime job as never off sick even when periods so bad but today struggling to even get ready. I'm also worried that in 2 mths time they may then reject an op and I'm back to the beginning. Only diagnosed with fibroids in Nov and wanted advice on menopause as thought that was what was making me feel so unwell! Has anyone else had zoladex and bad side effects?
heather34376 tina95476
Posted
Very similar to Tina, Sophie & Barbara. Very heavy periods, anaemia, pain (back, pelvis) the whole shooting match. Tried it all, loads of consultants, miles, money & treatments later, still in the same position. With a 13cm fibroid intramural, lower posterior wall, showing signs of reduced blood supply but with no shrinkage.
Had 12 months Esmya, 6 months Zoladex (Zoladex side effects not nice, bit didn't use tibolone along side as was told would get better shrinkage - it didn't shrink) travelled miles for UFE to have or scheduled, only to get a letter saying, sorry not right for me, same again for MRIgFUS (which I really wanted) if I can safely get keyhole with 13cm for quicker recovery, but I reckon, having had a C Section, so there will be adhensions, having a cyst on an ovary, that in the end it'll be an open hysterectomy. I don't think anyone takes the decision of hysterectomy lightly, however it becomes a necessary for some, everyone is different, sometimes genetics within families like Barbara's show that it has been a necessary for many females in her family. I certainly do not want a hysterectomy but will most likely end up having one. I know what Barbara means. Over 10 years I've kept hold of everything thinking after my son (10 years old) when I was 37 I'd maybe have another. I understand how young ladies without children would want a myomectomy. Of course this is the case. However once you are in your late forties or fifties, that changes for many & quality of life for the family you've got becomes more important than like me, (over the past years) not wanting to close the door on children. However at almost 48 (a lot down to my fibroid) I have to become realistic to give a better quality of life to the child & family I do have. My Mum at 75 puts me to shame with her energy. Everyone is different & reading one of the above comments regarding the future effects on ladies who have hysterectomies of course is worrying, but then if that is the safest option available for a better quality of life & many ladies who have had them do seem ok in the future (I'm sure some have had issues) but what's better? Better life when you are young enough to live it, or worrying about future effects that may/may not happen to you. Life is too short, no one wants an operation, but for some it is a necessity. Each person has to do what is right for them, at the end of the day no one really knows. I can totally understand why some choose myomectomy, but can also understand why some wouldn't want the risks of fibroids returning etc. I think we are all here on this site to encourage each other & share our stories, it helps. I don't like it when it get's finger pointing, or when others push their point of you, for example anti hysterectomy. I honestly don't think anyone would choose one if they didn't feel they had to. I for one, would hate to think that I had a major operation & had the chance of fibroids growing back & had to go through it all again. But if I was younger that's exactly what I'd do, so I could still have the option of children. However now I have to think about my son, he wants his Mum to play, not to have to stay at home or spend hours of each day waiting in a toilet. I spent December, worrying about booking things for us to do, (as after coming of Esmya, I wasn't regular again) Being caught out when away if you flood is a nightmare, there were no toilets within miles on a school trip! Sometimes I need to go back as soon as I've come out! I can understand all of the posts on here & won't judge anyone. We can all research, we all know our situations & family circumstances & it is nice people care to post information to help. Including those who are anti hysterectomy, but they should be mindful that sometimes that is the only viable option too. Good luck all in making the right decisions, safe surgeries, if it be UFE, myomectomy or hysterectomy, may God be with you all & see you safely through it to the life you desire without it being blighted by fibroids.
maisie05 heather34376
Posted
barbara91702 heather34376
Posted
Very well said Heather, I totally agree with everything you have said. I found this site to be such a great source of advice and support while I was making the difficult decision of which option was best for me, I spoke to many people about their various medications and procedures and found their personal views invaluable, but at the end of the day everyone is so different and what works for one person might not work or even be an option for another! All we can do is be kind, supportive and give honest accounts of how we have dealt with our symptoms, I make a point of never commenting on things that I have no experience of. I think there is a long way to go with dealing with fibroids, adhesions, polyps etc, but do think there have been improvements in dealing with them and the way they do a hysterectomy is massively improved since my mum's day and the amazing things they can do to help ladies who wish to still be fertile, we have come a long way! My experience was a good one and I just want ladies to know that if you do decide to go down the route of having a hysterectomy (I can only comment on this procedure as this is what I had!) I and many others that I know have good stories to share, it is so scary to make the final decision to have surgery of any kind and it is so important to hear when things go well, not just the bad stuff. Speaking to many lovely ladies on here, my friends and family meant that I was not scared and felt confident with my decision, having your head straight is half the battle.
Good luck to you all, I wish you well and that you will be pain free soon.
Barb xx
heather34376 maisie05
Posted
Thank you my final decision is a lot nearer now, scary but my options are less now, I'll see one more specialist & then decide. How are you finding Magnesium spray? I have joint pain too & a couple of other issues & thought I'd give it a try. Which type is best & which supplier? X
maisie05 heather34376
Posted
I buy the magnesium oil spray from holland and barret, own brand. I'm pretty sure it's helping my knee joints. I guess I wouldn't know unless I stopped it and the pain got worse. I've been spraying and rubbing in my tummy for last few months. I'm not due another scan for two months so I can't say yet if there's been any shrinkage in my fibroids.
I also take a chelated magnesium tablet 400mg in the evening. Also from holland and barret. I chose this type after reading lots and listening to a blog post about the many benefits of magnesium. I know some take magnesium citrate but it was just my personal choice.
Not sure if you've tried Tranexamic acid while on your period to help with the heavy blood loss. It lessens the flow/loss. It could help you in the short term while you are making your decision. I wish I'd heard of it years ago, my doctor never offered it, it was on here that I read about it and asked my GP for it. x
sophie38439
Posted
Hello everyone
Been a long time since I've been on here but thank you all for your interesting messages.
I've been on Esmya now for the three months and came off on Monday for my three month break. I feel odd, like a full feeling but my moods have definitely lightened. I'm wondering how long the effects will last now? I'm due to see NHS consultant on Monday (after two cancellations!) to see what she says now and I think a scan is on the cards to see what, if anything, has happened to the fibroid! Although it feels bigger than ever,( it is definitely bigger than the 8 cms on August's scan) it has obviously changed in some way as my bladder issues have disappeared and it's been nice having just one very light period! I'm not stupid though, I dare say I going to pay with it now with periods from hell during the break😣!
I'm also waiting for a private consultant appointment, just be interested to have a second opinion. This came about because of the cancelled NHS appointments but I'm still going to go for it.
Good luck ladies, we're all on a journey with good friends and support on here to guide us through!
Sophie xxx