New to fibroids, scary experience Hello Everyone I live in the UK and found our excellent website a

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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? 

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  • Posted

    Hi Sophie, not sure if this will be of any help to you at all but here goes.......I also had fibroids, one of my symptoms was full bladder all the time and constantly feeling like I needed a wee. Long story short I decided to have a hysterectomy to remove the pesky fibroids but when they opened me up the hour surgery turned into nearly four hours due to severe adhesions from my c section many years ago, basically my bladder was attached to my uterus and some other bits too......this apparently could not be picked up on the scan so we had no idea until he was in there, but was the main reason for my bladder problems! When I had my first wee it was amazing, for the first time in ages it felt totally empty, and I can go for ages without feeling the urge to go.......feels like it holds gallons now 😂 . This may not be the case for you, but worth asking the question if it could be adhesions.

    I hope you get to the bottom of your problem (sorry about the pun!) And you are feeling better soon.

    Barb

    xx

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  • Posted

    I Sophie, I have had one fibroid pressing on my bladder and needed the toilet every 30 minutes. I drink plenty of water so for me was no retention issues. I have had mine removed abroad cause of the difficulties with NHS. My advise is to wait for the gynaecologist appointment and see what they say, bare in mind it may not give you the operation as an option from the first appointment. 
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  • Posted

    Just three months ago I was considering having a hysterectomy, but I came across a post from linda86253. She recommended using magnesium spay.  It has changed my life!  Apparently women who have fibroids are deficient in magnesium. Our bodies do not absorb magnesium well through our digestive system, so the best way to get it is through your skin. Getting enough magnesium is also vital to balancing our hormones. For the past 3 months I have been using the magnesium spray every night and all my fibroid symptoms have virtually disappeared, including the flooding. My periods are also now shorter.  4 days as opposed to 7 days on my regular schedule. I feel like my fibroids are shrinking, but I have yet to confirm this with my doctor. I have an gynecologist appointment at the end of the month and will do an update whether they have shrunk or not, but for now my fibroid symptoms are now minimal and I no longer feel like a need a hysterectomy.I hope anyone who reads this and tries the magnesium spay has the same results. It's really inexpensive and the bottle will last you months.  You can buy it at a health food store or order it online.  If you do give it a try, please share your story.

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    • Posted

      Hi CarolSportyGirl. Do you spray the magnesium on your lower stomach or anywhere on your body? And do you rub it in or leave to dry? I have multiple small fibroids. 

      I have used this spray on my knee for joint pain and it seemed to work, though my hand and knee became very dry from rubbing in. Small price to lay for relief though! It was a magnesium oil spray for joints. 

      Thanks for any tips on how to use x

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    • Posted

      Hi Maisie.  I spray it on my belly.  It will give you an itchy warm feeling.  It's the salt drying on your skin.  I try to think of it as a hot water bottle on your belly.  But I believe that you can spray it anywhere.  I also use it on my knees.  Magnesium is a natural muscle relaxant and eliminates my knee pain too.  I rub it in a bit, if it gets on your clothes it makes them weird, but it will wash off.  I think the key is to make sure you are getting enough magnesium daily.  I use about 10 sprays on my belly and about 6 on my knees. For a total dose of 256mg.  I think each brand will tell you the magnesium content per sprays.  The daily dose is around 320 per day, so you will want to stay under that.  You are probably getting some in your diet.

      I hope it works as well for you as it did for me.

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    • Posted

      Here is an update on my situation. The magnesium spray was working great, until I fell off my strict diet and also started going out drinking with the girls, then my symptoms started coming back and I had to go back on Fibristal/Esmya. I recently had an ultrasound and the results were that my fibroids had shrunk, but she couldn’t tell me accurately how much because I had switched doctors and clinics that did my original ultrasound tests. My current doctor told me that the same clinic needs to do the testing to get an accurate reading of how much they shrunk. I’m not claiming that the fibroids shrinking was from the magnesium spray, because I had taken 3 rounds of Fibristal/Esmya. I just know that the magnesium spray greatly helped with the symptoms, especially after I went off Fibristal/Esmya. I am convinced that the magnesium spray works, but obviously not alone. I have a sulfite sensitivity and gluten issue. I have to stop eating processed foods and stay away from wheat. And apparently alcohol and fibroids do not mix well sad .

      So now I have to think about if it is realistic to continue to rely on a strict diet, with no alcohol and the magnesium spray to control my fibroids or do I consider another alternative. At this point I’m considering a hysterectomy because I feel that most women who have tried to save their uterus have eventually ended up getting a hysterectomy in end and have commented that they wish they hadn’t waited so long. I feel that if having children are not in your future, it is probably the most effective approach available at this point. As well you don’t have to worry about the possibility of uterine cancer in the future. Currently I’m still waiting for Magnetic Resonance-Guided High-Intensity Focused Ultrasound to be approved in Canada, but I’m not sure realistically how long I can hold out, before I opt for the hysterectomy.

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    • Posted

      I really feel for you, I tried Esmya for several months, and it helped greatly.....but I suffered terribly during the break. I am now 4 months on from TAH and have never looked back and definitely fall into the "why did I wait" camp! It is a big decision and not for everyone, but I did my research first and had my head in Good place when I made the final decision and it really was the best thing I have done, all the pain and bleeding gone.......fab!!

      Good luck in whatever you decide to do.

      xx

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  • Posted

    Hi ladies, I wonder if you could help me decide which op to take. I was in Asmya for the past 3 month after that  I did scan again so instead of getting smaller the  fibroid is  doubled in size and became 93 mm and there also is smaller fibroid in a different part of the womb. the gynecologist  discussed the options which includes open surgery but she insisted into the removal of the womb. I am 44 years old and i don't have children was in shook during the discussion to the fact that i have to remove my womb so i asked the Dr to give time to think about it. It has been 2 days now and i have no idea what to do.

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    • Posted

      Hi Sasha I was in a similar situation.  I am 46 and was told to have a hysterectomy, I was on Esmya/Fibristal (same drug) 3 times.  It did help me, but every time I went off the drug my symptoms would return. I now use magnesium spray to control my symptoms.  I am amazed how well it is working form me.  (see my reply to Sophie above.)
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  • Posted

    Hi Sophie,

     The past year I have had major problems with my bladder and having the urgency to urinate very frequently. I could not hold it and would find myself running to the bathroom often. Later I found out I had a huge fibroid sitting on my bladder which explains it. I had the uterine artery embolization Done in March and since then my fibroid has shrunk by half. I do not have the urgency to run to the bathroom anymore. If you are having issues with a big fibroid on your bladder  I would consider getting the procedure done.

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  • Posted

    Hello Everyone 

    Thank you for the wonderful

    Response.  So good to know I'm not alone. Magnesium spray sounds interesting too will look into that one. Looked into the embolozation (sorry about spelling!). It might be an option but it really scares me

    The pain afterwards and is there a chance they'll grow back?  Will have to discuss all the options but can't go on like this.  Worked out if drink plenty and go as soon as I feel like it it still is an effort but I'm keeping the retention issue at bay. If I go all night and don't wake up for a wee I'm sat for ages in the morning trying. This month I've had my period 9

    Days early .... guess this is another thing happening now messing with my cycle. Did anyone insist on a scan on their first gynaecologist visit or do they routinely do it?  I'm

    Sure it's grown since scan in August.

    Again thank you ladies for your support, most appreciated! Xx 

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  • Posted

    Hello

    Just a follow up after gynaecologist appointment today.

    Well she examined me inside and out - confirmed 8cm fibroid and basically said could try Esyma but chances of it working weren't great on my fibroid, embolization would have to travel but again success rate for me wouldn't be good and also trying to take just fibroids away could lead to a hysterectomy anyway. So I've got literature on Esyma and abdominal hysterectomy to read through. She wants to see me in a month, my GP will know about today in a week. I can go start Esyma with GP in meantime but I see, from the notes, you have to start it in week you're bleeding - which of course has just finished. I've now got lots going on in my head! Firstly was thinking straightforward hysterectomy and done with now I'm thinking try the Esyma and see if it'll shrink it, maybe even enough for vaginal hysterectomy if it comes down to it?

    I'm not sure what to do!

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    • Posted

      Hi Sophie, if you dont mind me asking why hysterectomy? Your fibroid is not big and can be removed either via keyhole or open myomectomy. I have had 4 fibroids removed via keyhole, biggest one was 7x6cm so is possible, of course unless you want the procedure and wasn't pushed on to by your gynecologist. 

      I had to go abroad to have mine done because NHS gynecologist wanted me to give my consent for hysterectomy as well and said no. 

      If do not want either Esyma which I have heard it has side effects and it may not work, ask for a 2nd opinion and if you can afford go private, my procedure was together with flights and hotel in July £1100.

      My advise is to research your options and keep pushing for WHAT YOU WANT. Remember that some doctors are not competent in minimal invasion surgery hence the hysterectomy only option.   

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    • Posted

      Hi Sophie, I am sorry to hear that your life is being blighted by these pesky fibroids! I totally understand your confusion, there are so many options available to us.....but not all are suitable to you and your situation. I took Esyma to ease my dreadful symptoms and to be honest although I knew it was not a permanent fix for me it certainly gave me a welcomed break and time for me to explore all my options. Due to the size, location, and my age (I am 51) I had to look at the long term benefits for me. I was not showing any signs of menopause and did not want the "how long is a piece of string" time scale hanging over my head, the fact that they seemed to be growing at a rate of knots I did not want some removed as there is a risk they can grow back (any risk was too much for me), plus due to location not all could be removed! I don't like hospital food and having poked up with this for a few years I did not want to keep "trying" different things as I wanted this to end and to get on with my life! I did decide to have a hysterectomy, I am 6 weeks out from the op and I feel great, best option for me (also turned out once they were there I had fibroids, adhesions, polyps and due to Esmya some degeneration......so definitely the right decision for me, but they do not always know this until they are there!) I do get tired of reading people saying you simply must try all other options first, that is fine if that suits you and you can keep putting your life on hold during these times.....I personally have a job I enjoy, a family life that I love being involved with (not laying flat out in bed which was the case for me prior to hysterectomy) and was not worried about my fertility.......and definitely have not felt less of a woman or grieved for my manky uterus! My point is not all options are really a good option for everyone, you do what is best for your condition and will give you your quality of life. I have felt better from the moment I came round, no more bleeding and no more pain, phew.....it has been a long journey but I finally see light at the end of the tunnel!!

      Take care, I hope you find the best way forward for you. xx

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    • Posted

      Hi Barbara, you said you get tired of reading people saying you simply must try all the other options first. I and I do get tired of reading posts like yours.Hysterectomy should be the considered the VERY last resort. I wonder if you really have researched the long term consequences of a hysterectomy...My friend's dad was a gynaecologist (retired now) and I did learn a thing or two.  

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    • Posted

      Well Paula, it is very kind of you to say this to someone who has already had a hysterectomy! My comment was purely to point out to people that for some people like me (and yes I did have lengthy discussions with my gynecologist and did try other options first) a hysterectomy is the VERY last option, after 3/4 years of total hell I really did reach the point of "do anything to make it stop'. I am sure there are horror stories of problems (as with ALL surgery), but there are also very positive stories.......I for one am totally grateful to actually be getting my life back and to be pain free ( how long should I of kept trying, my family and career were suffering, I needed to end the pain!)....my sister who had dreadful problems also has been grateful to be pain free after many years of debilitating pain and is 20 years down the line and still problem free......my other sister has a similar story to tell.......and my lovely mum is 40 years down the line and has NO problems and is pain free! My point is that for some a hysterectomy is the best option with the best outcome.......but I totally understand that for some people they do not wish to go this route and that is fine (I am not small minded and can see others point of view), but I also just wish that people would also understand that no one takes this decision lightly, it is a major operation and those that take this option have usually researched the pros and cons (I certainly did) and reached a decision that is right for them. I can see both sides of this and made my comment after it was implied that under no circumstances should I be considering a hysterectomy, well I do not think that anyone should sit in judgement of any one else's decision, I was at the point where I had to take morphine just to make it through the day! My surgery took 4 hours to work through the mess that was my enlarged uterus, adhesions, fibroids, all stuck together, I did not have many options available to me, and maybe.....just maybe having a hysterectomy was my best option......time will tell, but at the moment I am enjoying my pain free life for the first time in years!

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