My fibrosis I

Posted , 4 users are following.

So when I first found out I had fibroids I had just turned 25 and I had passed out at the gym. I was rushed to hospital and they found 2 small fibroids within my womb and a few in the muscle lining.

I had to undergo 15 STI tests before they believed I didn't have chlamydia I was then referred back to the hospital for another scan. This time one half of my muscle lining of the womb had got quite full of fribroids and an extra 4 small fibroids had grown inside the womb.

I was then told to take iron tablets everyday 4 times a day as my iron stores were low. After 3 years things weren't improving I could no longer wear sanitary towels I had to wear the tena lady pants that old people wear when they have bladder trouble. My trouble wasn't that though.....mine was the bleeding the amount that was coming out of me was horrendous and clotting and I had to carry around a spare wardrobe.

Reluctantly the doctors agreed to put a coil in to stop the bleeding as taking the pill constantly made it worse the tranexamic acid, norethistrone and the iron tablets were not helping. I had more acne taking those 3 pills combined then I ever did as a teenager.

So I had wait 6 months but yep sure enough under general anesthetic I went they put gas in my belly and then put a camera in to check for endometriosis. None was found in went the coil.

3 months past and I was still bleeding all the time. Went to the GP she advised that maybe removing the coil would help but she couldn't find the strings and said I had a backwards womb.

Back to the hospital I was sent where an internal scan showed that the coil was there but had wrapped itself around a fibroid and my womb was indeed changing shape.

Reluctantly, the doctors agreed that they would remove the coil but I had to start trying for a child. My partner and I didn't want children at that time, but agree I did. So admitted into hospital back under general anesthetic for the removal of the coil and unknown to me a small part of a fibroid was removed for biopsy.

I went back to the GP who advised it would be a trying time but a baby would cure things for me. However before we could begin to try I had to have 3 injections to trick my body into thinking I was going through the menopause I was 29 when this took place. Sounds great, but I couldn't stop bleeding my partner was getting freaked out because he thought I would trick him into having a child when he wasn't ready we had no money no security etc. I had gained so much weight I went from a dress size 6-8 to a 12-14 So thought he didn't want a fat bird like me who would???? Depression kicked in like never before and it still here to this day reminding me of what waste to society I am.

Anyway.......

I then went back to the docs as I wasn't happy we couldn't have sex every position hurt it was particularly romantic blood everywhere so they once again referred to the hospital who assured me the operation they wanted to do would cut all the fibroids in the womb back so they pretty much disappeared and gave me a cavity to allow a child to grow (I was single by this point and I was 32). However before surgery I had to have a blood transfusion of 2 pints before they would operate.

Went in to surgery again I haven't a clue what was done but I was in so much agony I could barely walk I was told this is normal. The bleeding continued

Last year I changed doctors and I knew something was wrong as I physically could not get out of bed I felt so weak. So I went for a blood test I was then called by the doctor telling me to get myself to a&e for an emergency blood transfusion as my hemoglobin levels were low.

So I drove myself to the a&e department waited 4 hours to be told originally that I couldn't have the transfusion done as I needed 5 pints of blood and that ward was shutting down for the evening. I burst into tears and then a doctor came over told me to stay put as he began whispering to the nurse. He then turned and said

"I am afraid you can't go home miss, you are at risk of a heart attack. Your hemoglobin level should be 11 you are 5.7"

Shocked I am 33 I tell him you must have some mistake. He then asks me if I had any numbness in my left handside of my body at anytime i confirmed I had but I put it down to the car accident I was in 5 months ago. Turns out it wasn't it was my body telling me I was poorly.

I was admitted for a weekend stay 4 pints of blood I had to have. A new scan was then carried out where the midwife lady who did the ultrasound said I have no cavity and can't see your ovaries. Your womb is full of fibroids nothing will ever grow in there.

So I went to the doctor again who felt my belly read my notes looked at my face and agreed the hysterectomy the choice as the fribroids had completely taken over my lower body affecting my bladder and bowels. I will be left with ovaries due to my age.:-)

I am on the emergency list waiting to be called to go in and have this done. I am scared its life changing some for the better for obvious reasons some for the worse but I have to stay strong as there are are people out there with bigger problems than I.

Thank you for reading my waffle I guess what Ian trying to achieve is for girls to listen to your body you know your body better than anyone. Fight for your cure no matter what I nearly gave up because no one was listening to me. I am glad I didn't stop I don't think I could have carried on much longer amazing friends have and still are helping me.

1 like, 16 replies

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16 Replies

  • Posted

    The title of this should read My Fibroids & I but I can't go back and change it sorry stupid touchscreen tablet.
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  • Posted

    wow, this resonates with me so much. I had 2 units transfused due to the bad bleeding. i had one sided weekness and lost my speech for 30 seconds, i thought i was having a stroke, but in a&e they had no clue what it was down to, but i am sure it was due to my low blood count. The monthly bleed outs are not nice. Like you say normal towels are useless, but i have found that always infinity are a lot more absorbant. I understand the tena thing, i steel them from my grandma lol

    its amazing how rubbish the treatment paths are and how long it takes to get anythng done. I am 3 yrs since i was first diagnosed and not really gone anywhere: iron pills, blood transfusions, mri scans, esmya, failed myomectomy and esmya again, now kind of back to sqaure one !

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    • Posted

      It was the way I was made to feel dirty and just left months without them doing anything for me. Just told take the pill continuously for 6 months. I couldn't get on with Esyma Some people can and thats great,

      I can't wear normal towels because the clots that come out of me are huge and I just leak straight through them.

      Don't give up, chase the doctors the GP's they will listen and they will help fight your corner. I know the NHS are understaffed underpaid and overworked but I am at risk of losing my job due to my ill health.

      When I am in hospital the nurses on the ward are fantastic I have nothing but praise for them.

      Don't give up if the "treatment" they suggest to you doesn't work go back until they find something that does.

      I will keep everything crossed

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  • Posted

    Oh my word poor you,what a terrible time you have had. Please don't think hysterectomy is the only option I was told that and managed to find an amazing surgeon Prof. Manyonda who did complex surgery on me to remove the fibroids and leave my womb intact I am only 3 weeks post op and feel so much better someone on here recommend him to me and I am so grateful he is a lovely man who works for NHS at St George's London or private from Parkside in Wimbledon look him up Good luck
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    • Posted

      Thank you but because I have been left so long they are not just in my womb they are on the outside and in the muscle lining they have changed the shape of my womb so much that both ovaries are hidden it moves all the time depending on them and last they did an operation on me they were behind one another. I don't really understand how that's possible but I no longer trust the doctors to go private is a no I can't afford it.

      I can't allow myself to go down the dark route of why can't I have children I just have to think at the moment i don't have any but someone somewhere will choose me to their mum. If I focus on why wasn't I allowed to have children of my own I would just sink . Thank you for your kind words

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    • Posted

      He is the best surgeon in the UK for Open Myomectomy and those with mutliple fibroids, my surgery was performed by him 11 days ago and my recovery is going very well. Women with fibroids shoud do their own research and not assume hysterectomy is their only option. All the best with your recovery.
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    • Posted

      I haven't assumed anything I have asked and asked for the different types of surgery to be done on me. The balloon surgery I know its not called that but that's how I described it, asking them to scrape or cut them out. The hospital won't do any of them because I haven't had children and they don't want to leave scar tissue as they say that can leave me infertile and then I will sue them. I have fought this for I years and even though they have agreed to it I stilldont believe they will.I will ask them to donate my eggs Ip if they are any good.

      Believe me when I say I have tried everything they have suggested. Even not eaten for days because a trainee doctor said that I was fat and fibroids grew at the same rate I was gaining weight so if I lost weight they would shrink I can't afford to go private else I would have done years ago.

      Good luck with your recovery

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  • Posted

    Sorry to hear the issues you are facing with fibroids. Its important that you get other professional opinions about your fibroids before committing to a hysterectomy so that you can make the best decision that suits you.
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    • Posted

      I have seen 3 different heads of gynecology, pardon the expression. Each one saying you got to have a child before we can help you.

      Except this postdoctoral who said enough is enough and he will remove everything I have looked at the above professors name and web page and with prices starting from £6,000 up and that doesn't include my travel or time off work I just can't do it.

      I housewares I have extremely bad credit rating so I can't get a loan its just stupid that these surgeries are only available privately as where I asked to be referred to a doctor that would do the balloon surgery I was told if I wanted that I would have to pay for it all myself.

      I know I seem ungrateful that's not the case at all I just have to stay in the mindset of this is what will happen this is what I have do and then my career and life can restart.

      I can't live in hope anymore there is none for me.

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    • Posted

      No disrepect but Head of Gynecology does not mean that person is an expert in their field. If you are based in the UK ask your Doctor (GP) politely to refer you to Prof Manyonda via NHS to St George's Hospital for an examination and to get an expert opinon on your fibroids. If you go via the NHS you do not have to pay for it. The expertise of every sugeon is different, some can handle the complex and some cannot. Do not give up  hope. 
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    • Posted

      I think it is important not to give up hope, but seeing the head of gynae does not mean he can help in all cases. I was under the care of a very experienced professor. I had a myomectomy and it was unsuccessful due to the position  of where they were, they were embedded and each time they cut i bleed more and more.  The first consultant I saw said she would not attempt surgery unless i had children. The 2nd consultant agreed to help as I had such a pooe quality of life. 

      Its also important to remember that with a myomectomy, it MAY causes scarring and there is a possibility that they grow back.

      I think everyone has to weigh up what is important to them.

      *are your symtoms so bad you have a poor quality of life

      *are you trying to conceive and the fibs are causing issue

      *do u want kids in the future, how would you feel if the surgery caused damage to the womb. 

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    • Posted

      I did ask to go and get referred to another doctor and my GP said no I have been knocked down so many times I haven't got the energy to fight anymore.

      I will try once more to get seen by someone else.

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    • Posted

      I don't think I could cope again if they grew back.....unfortunately there are a lot of children that are in not such nice places and if I am fortunate in the future to be able to care and love one of those children it won't matter that I didn't give birth to them only that I guided them hopefully on a right path.
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    • Posted

      I will muster up the last bit of fight I have to request this but they didn't even want to refer me to the next towns doctors don't think they will refer me to London but I will try.
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    • Posted

      you sound really positive about your children option and think you can do it, keep fighting so you can get on a good treatment path, getting you well is the most important thing
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