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I have very bloated/distended abdomen all the time (visibly protruding like I am about 6 months pregnant, not eating as much, have to wear a pad as bladder seems weaker, I had a scan a few years ago and they said I had a mini fibroid so not sure if it has grown or just being overweight. What symptoms did everyone have when theirs had grown please?
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lulu999 jayne80313
Posted
lulu999 jayne80313
Posted
Hi Jayne
I was diagnosed with fibroids 4 years ago and have one which was seemingly the size of a large mango. I had no period problems- just abdominal swelling and bladder problems. Was referred to a consultant and decapeptyl injections were recommended (2 injections every 6 months for a year)- the hormone therapy was supposed to shrink my fibroids, but they didn't do much!
2 years on since I last saw my consultant, I now have much worse symptoms- my abdomen is very distended- so much now that I have to take a uniform 2 sizes bigger than I had 2 years ago! I have chronic back pain, and now have pain when I bend down to pick things up in my upper left abdomen. My periods are still the same and my bladder has not got any worse either.
Its the abdominal swelling and lethargy that is getting me down- I exercise every day- but lately it has been uncomfortable to run with a saggy tummy and I just feel tired all the time! When it comes to meals, there is nothing much that I fancy and really just have small nibbles of things like crackers or protein smoothies throughout the day, as I am just not that hungry.
I am dead agaunst a hysterectomy, but am keen on other surgical alternatives- I have an appointment next week to see my GP and will ask to be referred back to my consultant and hopefully get a scan to see how big they are now!
Ova lulu999
Posted
lulu999 jayne80313
Posted
Hi Ova
So I saw a Trainee GP 10 days ago- she did an external manual exam of my abdomen and an internal exam. She was gob-smacked at the size of my abdomen! She showed me the last referral letter that my consultant had sent to the practice and it said that my consultant would see me 6 months after my last appointment with her and we could decide on options........that was 18 months ago- I received no letters from the hospital re seeing my consultant at all! As you can imagine I am pretty annoyed that I appear to have been missed off the radar!- another discrepency that I had was that after my Decapeptyl jabs my consultant told me that it hadn't been much of a success as my biggest fibroid had only shrunk 0.5cm- whereas on the referral letter to my GP it said that it had shrunk from 10.5cm to 7cm...3.5cm!! which is pretty significant!!
Anyway the Trainee GP said she would arrange for one of the experienced GP's to perform scans on me to see exactly how much they had grown.She also took bloods to rule out cancers and a general blood count to check if I was anaemic.
Within 2 hours of getting home the medical centre were phoning me to come down the next day to get scanned!
The second GP I saw is very experienced in gynaecological issues and she was absolutely gob-smacked too that I was able to function normally due to the size of the fibroids! On maual palpation she said that the largest felt like it was just about up to my bottom ribs! She carried out a transvaginal scan and said that they were so big she honestly could not say how many there were, but she estimated the largest one to now be the equivalent of being pregnant 6 months and the next largest on the opposite side of my abdomen to be approx 5 month pregnant! She tried to carry out my cervical smear at the same time as it was due, but said she just could not manage due to the bulk of the fibroids pressing down on my cervix!
My bloods were all fine and she said that she would refer me urgently to see another consultant at a different hospital.
Within 4 days I had an appointment to see one of the top Professor Gynaecologists in Scotland, so I will go and see him in 2 weeks time. The more I research about my options, the more that I am starting to think my options are really limited and I fear that hysterectomy will now be my only option as they have become so large! I know that he does carry out embolisation treatment but I am unsure as to whether mine are just too big now to carry this out!
The back pain is so bad in the mornings and she wondered if it was due to me lying on my front and pushing the fibroid into my back- she also scanned my kidneys to check they were ok as she was worried that the back pain was maybe due to my ureters being compressed- they were fine tho.
So its just a 2 week wait until I see another expert, but I don't know if I can have the Decapeptyl injections again prior to surgery as I have already had them within the past 2 years.
And yes I do get hip and back pain!
lulu999
Posted
So I had my appointment with the consultant this afternoon- omg! what a horrible man- absolutely no bedside manner at all! I was in his consulting room for max 8 minutes!- he asked me 6 questions (that if he had read my notes, he wouldn't have needed to ask!), he then felt my tummy and then told me that since I was 45, my options were limited to a hysterectomy! I asked if a myomectomy would be an option and omg he was like," well its the same surgical procedure really as a hysterectomy, and they will just grow back, so not much point!"
He then suggested another injection of Decapeptyl to see if they will shrink, and an MRI scan after the 3 months to see where they are and size and then a hysterectomy!
He asked about my smear tests and I told him that the GP couldnt manage the last one due to the size of the fibroids- thinking that he would offer to do it...........nope, he just frowned and carried on writing!
So, I assumed that he would just give me the jab at the hospital, but omg, no, he wrote out a prescription for me to hand in to my own GP and I was expected to make an appointment at my health centre to get it done! I was shocked at this, as the 2 other times that I had the hormone jabs the consultant just did it there!
So God knows when I will get the jab as they are really expensive and the medical centre will probably need to order it!
no, i am not impressed at the nhs care that i received today ( or lack-of!) and I work as a frontline emergency NHS employee and would never treat my patients like that!!
karen67336 lulu999
Posted
lulu999, how are you? I have a 12cm fibroid and various smaller ones, I am 45. your experience sounds exactly like the consultation I had earlier this year, was this NHS Lanarkshire Health Board? He had clearly not read my notes and stated I seemed quite anxious about the only option he was willing to carry out...hysterectomy...no kidding!! (he is not one of his more new technique colleagues he said?? eh??), he shrugged his shoulders when I asked about options to retain my ovaries and went on and on about the large scar I would have, no belly cut but a big vertical cut and even bigger if I don't get the injections and try and shrink it! I left vowing never to go back, I have never felt so patronised in my life, it was a horrible experience ! I had minimal symptoms then but I need to do something soon with various symptoms now affecting my life . I have decided to call his secretary tomorrow and ask for a second opinion appointment with one of his new technique colleagues! I just hope you could let me know how you are getting on at present and what you decided to do after that horrible experience. It really helps to know there are others in the same position. Sending Hugs!
delores_28262 jayne80313
Posted
1ALC1977 jayne80313
Posted
I'm suffering terrible with this now; knew they were growing but small a few years ago. Went to hospital 2 mo ago in extreme pain; MRI w dye results were severe- they are not only very large they're inside AND out (of my uterus) and spreading. Swollen so bad I've gained weight, can't fit in clothes, touch my skin (skin hurts EVERYWHERE to touch), pee as if I'm pregnant (almost all symptoms of pregnancy, nausea,etc.)
Horrific constipation and incontinence.
It's exacerbating my mental health I feel if I wait for the surgery any longer I'm going to kill myself. I can't do it anymore..I cry every day.. Look like I'm 6 months pregnant, my joints, and back hurt but my HIPS, its excruciating.. That and my knees are "locking" if I fall asleep w then bent I wake up screaming. I'm terrified... I wouldn't wish this on an enemy and my empathy for ANYONE going thru this is tremendous.