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
sonja40509
Posted
fibroidy sonja40509
Posted
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 !
sonja40509 fibroidy
Posted
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
alex03541 sonja40509
Posted
sonja40509 alex03541
Posted
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
f91864 alex03541
Posted
sonja40509 f91864
Posted
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
f91864 sonja40509
Posted
sonja40509 f91864
Posted
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.
alex03541 sonja40509
Posted
f91864 sonja40509
Posted
fibroidy f91864
Posted
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.
sonja40509 alex03541
Posted
I will try once more to get seen by someone else.
sonja40509 fibroidy
Posted
sonja40509 alex03541
Posted
fibroidy sonja40509
Posted