Hello
So I’m sure this has been asked many time? But Im looking for anyone who has fibroids? I have a fibroid and it makes my stomach look big. The doctor has told me I’m at no risk and they won’t do anything in less it’s painful. Lately I’ve been having aches but no pains as such... can anyone advise pls
Hello! I had to reply as your doctors advise worries me. I 'had' fibroids which I was told were harmless. I had issues which got worse and worse over time stomach pains, and other issues at first but then went on to bladder incontinence & insomnia (waking every 15 minutes in the end to go to the toilet, it was like torture!) I visited my doctors over and over again telling them that something was wrong but they just kept fobbing me off. I was sent for 3 separate scans over 7 years! Which showed the fibroids but nothing else.
What worried me about your post is that you mention that your stomach looks big. This happened to me and it got bigger and bigger and was very obvious. My daughter took a photo of me leaning against a wall and you could clearly see my body looked different to everybody elses. I ended up with bad back pain, could barely bend over and barely left my house. Clothes would not sit right on me and I ended up wearing clothes 2 sizes too big just to cover my bump. I had severe depression and I put on lots of weight also due to PCOD and just being inactive so the doctors kept blaming everything on my weight.
In 2018 a lovely trainee GP really took the time to investigate. He sent me for lots of blood tests etc and assured me he would get to the bottom of my problems. One of the tests came back with raised CA125 and I was sent for another ultrasound. This time I was sent for an emergency gynaecology appt and was put on a 2 week cancer pathway. MRI & CT scans showed a cyst which was 20x18x14cm. Just a short while after that I was told that my ovaries were covered in fibroids and smaller cysts and keyhole surgery was no longer an option. I ended up having a 'pelvic clearance' (basically anything that is not a vital organ has now gone). The surgeon came to see me after and said that he literally removed a football from me (the cyst). I was also told that to get to this size it would have been growing for years!
I am currently going through the complaints procedure and as I have had no joy with my GP and I am about to take my case to the ombudsman. In total, I lost 20 years of my life. The last 10 I was actively seeking answers to my problems but was completely ignored and again was just told to basically go away. Furthermore, how did I have 3 separate scans and results clearly say.. no evidence of any cysts?
After my surgery last year (no cancer thankfully!) my life has completely changed. My bladder incontinence dissapeared and I lost a stone in weight literally overnight. Just knowing what was happening to me made all the difference and after 20 years of depression I am now happier than I have ever been.
I do not mean to scare you but I would demand an MRI to find out exactly what is happening. You can tell them my story and tell them you are worried the same could be happening. It is your body and you deserve to know what is happening! My daughter also has PCOD and fibroids and I have told her the same thing. Ask for regular checks and thorough investigations. I would not want anyone to go through what I had too. I was so depressed in the end it nearly cost me my life.
I really do hope you get the answers you seek! Good luck and best wishes!
Hi
Firstly thank you so much for sharing this with me. It meant a lot that you could open up about this to a complete strangler but it’s really give me me an eye opener. Will definitely tell my doctor about your journey. Can I ask? Did you ever know what side your fibroid was on pls? Left or right side? I keep forgetting to ask my doctor and never found out in my scans. Can you literally feel it if you were to touch your tummy and was it hard?
Hi! Sorry for the delay in replying! I am more than happy to share my experience now as I am concerned about how many more people are affected by similar situations. Our doctors are seen as gods (rightly so in some circumstances!) But they are not always and I've seen a few bad ones on my time.
I had many fibroids on both sides, I never even knew I had them until my belly became bloated. No pain at that point either. The only visual evidence was my bloated belly and it was left to get bigger and bigger over 15+ years. Although no real pain until the last few years I did have a lot of problems with indigestion and would always be rubbing my belly as I just felt uncomfortable. Again, it was only in the last few years that I found out it was actually a cyst and not fibroids.
Fibroids had never been an issue for me personally. By the time of my OP I had lots and big ones and they had to go but my case was an extreme one by then.
I really do hope you get the help you seek. Just dont take the doctors word as gospel. If you think something is not right keep asking questions and do whatever you need to, to get answers!
Good luck!
I agree with you . It seems the scan shows no details . I always went for a scan and was told I have fibroids and nothing to worry about but my tummy kept getting big. I go to the bathroom maybe four times in the night and I thought it was because I drank loads of water . I pushed through my GP and when I did an mri it showed various fibroids which have grown as compared to what I had a few years ago . The consultant can’t believe why the drs in London where o lives previously did nothing about it . Now am undergoing treatment and my advise is push for surgery . When it’s smaller they can even remove under Local anaesthetic so why delay and waste your time
Hello I've had fibroids as well had a partial hysterectomy 6 years ago I can help if you have any questions
What kind of symptoms do or did you have before the operation?
Hello most the time they're harmless and you don't need to do anything. I had many fibroid's one was size of a my fist I could feel.them especially when I layed on my stomach. I had a lot of pressure went to the bathroom a lot had painfully Intercourse I looked pregnant I would have left them they go away with age I was told but mine was an extreme case.
Hi
Is it possible to tell what side the stomach is the fibroid on pls? I keep forgetting to ask my doctor are we able to feel it? Is it hard
When mine were small I couldn't feel them and I didn't worry about it,as they got larger I could feel them by pressing on lower stomach with my hand or laying on my stomach. They felt round and hard from what I could tell and I could move them slightly.
Thank you so much hun, really
Appreciate you taking time out to message me.. xx
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