a large single fibroid, help and advice

Posted , 8 users are following.

Hi all, I am new to this group, looking for some advice/supports, felt frustrated.

My period is regular, no pain or severe bleeding, I do exercise regularly, can run 10 miles. I consider myself rather healthy until I felt a lump in my tummy, went to GP, referred ultrasound, confirm fibroid, back to GP, referred to a consultant at a local hospital. The drama started.

the first consultant only read my GP's letter to me during the meeting, literally, reading nearly everything from the computer screen, gave me a leaflet, referred me to MRI. job done. MRI shows a large subserosal fibroid arising from the right side the uterus, measuring 95 x 80 x 92 mm.

I don't feel confident with the first consultant so I asked the clinic to arrange my appointment with another consultant. 

The second consultant reviewed treatment options and made another appointment with me to see what treatment I would like to go, also saying she will discuss at MDT as I asked keyhole surgery instead of incision. 

I went 3rd appointment at the clinic, the consultant was asking me how was my surgery. I was very embarrassed! it seems she thought I am somebody else?? During our conversation, I don't think she has discussed my case at MDT at all, but she pretended she did. I decided to follow her suggestion as the fibroid is quite huge, keyhole surgery maybe not sufficient. I had pre-assessment done on the same day. So I thought I was on the waitlist for a surgery. a consent form was given. She said the surgery will use local 

anaesthesia, recovering time is 2 weeks, all middle-aged female doctors doing the opp.

However, a few days later, I suddenly received another phone call from the clinic saying, another appointment has arranged, the girl saying, they have another consultant, who is going to do the opp, to see me because the second consultant is not doing the opp. The girl also advised me my opp date.

When I went the appointment, the new consultant is a male doctor. He seems no idea what my problem is. He asked all questions which I already discussed with the previous consultant. He tried to persuade me to take Esmya before opp. I denied it when the second consultant advised this drug. But he was not happy when I said "no", he said that is the drug to shrink fibroid before opp, if the fibroid is too big, the incision could be vertical, not horizontal. He also said general anaesthesia for the opp, the recovery period is 6 weeks, he doesn't even know I have done pre-assessment. He kept looking his mobile, even answered a phone call, it sounds a junior colleague called him up in the theatre looking for help. He said over the phone, " read the lecture, have a coffee, the clinic is overbooked. I got another patient."  I finally agree to take the drug, but I went to the pharmacy, they told me the drug is out of stock, the consultant needs to prescribe an alternative drug. I have to go back to the clinic even I knew he is gone to see the junior colleague. The receptionist took notes saying to email him and his secretary. 3 days later, nothing happened. I went to the clinic again, the receptionist said nothing heard from the doctor. She rung the doctor, his secretary answered it, I have spoken to the secretary, ask her "how can a doctor prescribe drug out of stock", she advised me someone will give me a call.at this moment, I have completely lost my faith in NHS doctors. I am deeply in doubt if they can take care of me, should I opt out the surgery? My main concern is the fibroid is too big, could become bigger, and gradually I feel more dull pain in my tummy. I read something, the fibroid could be twisted and make a fetal harm to the uterus. After all unpleasant experience with NHS, I really hesitated to go further. But I don't want to take pills too. I am very sensitive to drugs, I am worried about the side effects of drugs for the treatment. Should I complain to the local hospital? Should I go ahead the surgery? so frustrated now.....help, please.

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  • Posted

    Wow what a frustrating ordeal!

    I’m not sure how your healthcare system works there however I

    Would find another doctor one that has lots of experience In this area 

    Take a look at fibroidsecondopinion.com maybe you can consult with them online first ?

    Make sure you start eating really healthy I just started following Dr Gundry plant paradox to reduce inflammation. Which makes a huge difference 

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  • Posted

    Hi there

    I too have lost faith in the NHS.  I was admitted to hospital in March 2016 with severe anemia I was give 4 pints of blood and after an ultrasound and biopsies I too was diagnosed with 2 fibroids.  My consultant prescribed me esmya and tbh I had very little knowledge of this condition and gladly accepted anything which I thought and was told would help me.  17 months on I am no further forward.  I have 3 rounds of esmya and my consultant does not have a clue how to treat me. At my last appointment I asked her for the results of my ultra sound she peered at the screen and said mmmm not sure they measured them right. she said the results of the ultrasound had shown a thickening of the lining of my womb, which is a side effect of taking this drug. She then proceeded to take a biopsy from my womb and failed after many attempts, which was traumatizing.  I now have an appointment in 2 weeks for a hysteroscopy and she says when they are there they can insert a mirena coil.  I am not having this.  I too am disheartened and I am now back to bleeding very heavily.  After 17 months and 3 rounds of esyma my consultant said we are back to square one.  I have no faith in her at all.

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    • Posted

      Hi Julie. You are right to say no to anything. I said no to a coil. Also the biopsy doesn't have to be done then causing you trauma. It could be done at the same time as the hysteroscopy if you are having one. They always want to straight away tick their own box and do a biopsy when it can be painful. I said no. As I was having a hysteroscopy under general I said it could be done then. But what are they doing the hysteroscopy for ? Unless it's to remove a submucosal fibroid then I would say no. You need an MRI picture taken surely and then can see what you have and decide on treatment. Good luck. Don't agree to anything unless sure what it's for. Too many women do.

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    • Posted

      I would agree with Shell69386, can you ask your consultant to have MRI? a fibroid is more than 50mm would meet the criteria to have surgery. drugs can control the symptom but you had enough rounds.
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    • Posted

      Hi Shell they want to do the hysteroscopy to take a biopsy as my consultant couldnt get a good sample when she tried.  Also because my ultasound showed thickening of the womb lining, which was hardly surprising as I had just stopped taking esyma 4 days before. I was at my preassesment yesterday and the nurse said they would be fitting a Mirena coil I told her i wasnt having this done.  She said to tell them on the morning of the procedure.  Im not happy at all.  I really appreciate all of your comments ladies as this is a complete minefield
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    • Posted

      Hi Julie, you're right esmya can thicken womb lining as can actually having fibroids. They want to rule out uterine cancer but it's unlikely and ticking their box comes before patient comfort. For me I want to know what treatment having FIRST and then biopsy can be done at same time, so not having to go through things twice. For example I had to have hysteroscopy for removal of a submucosal fibroid , so I suggested same time do biopsy and consultant agreed. Do you know what treatment having for fibroid (s) yet ? Are you having some anaesthesia ? We are all different, but good to share opinions and experiences. Take care, S.

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    • Posted

      I did go private and get MRI but could ask on NHS. I wanted the full picture of what's going on inside. I did this before agreeing to hysteroscopy. I only had the hysteroscopy to remove a fibroid which was causing heavy periods. I wouldn't agree for it just for exploration. There are scans surely. Of course you have to decide what's right 4 you. You can say no to anything, if you want, but good to have another suggestion to put forward.

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    • Posted

      Hi Julie, You are in same situation as I was with NHS. Same as you when I was diagnosed had no idea about the treatment and accepted the 1st option offered. I was on trial drugs and pills for 18 months nearly and in all this time I was still bleeding , was in pain and my gynecologist and GP were saying that it takes time to settled and come back in 4 months and so on. The fibroids grew quite big in the meantime which made my case more complicated. I was also given mirena coil but I have refused and they just put me on hold as not knowing where to go.

      At the advice of the nurse at my GP centre, I have went abroad and had my surgery done using NHS treatment abroad scheme to pay for the cost. Because of the delay by the NHS, my case was harder than I thought, the fibroids were quite big and I was in the theatre for 5h hours and ended up with a blood transfusion due to severe anaemia. Happy to pass the details if you want an opinion. 

      Before surgery I was 6.3 my blood iron/level or whatever you called it. I am now 2 months after and I am fully recovered and I got my money back. So if you can do go private because waiting can only increase risks. And you can refuse the mirena. The hysteroscopy is to give them a better clear of your womb.

      all the best

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    • Posted

      Hi Shell i am having the hysteroscopy to take biopsy and they said fit the mirena coil. They are not giving me any treatment for the fibroids.  I was at my pre assesment on Monday and asked why i was going under a general anaesthetic, was basically told thats the way it is.  I told them I had a biopsy done last year with no local or general and it was all good.  I am 55 and all my consultant ever says is that she is hoping ingo into menopause and then i wont have any more bother. In the meantime i have heavy periods which can last for 3 weeks.  I am on iron tablets constanty.  They want to fit a mirena coil to help with the heavy bleeding. I do not know much about it but some of the experiences i have read about seem horrendous x
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    • Posted

      Hi Julie, it looks like it can vary whether more coil is done under general or not. I actually asked for general myself but was not having a coil, I was having hysteroscopy for removal of a submucosal fibroid. How do you feel about general. It's your choice . It depends if you want the coil. It sounds like it's because of the heavy periods lasting up to 3 weeks. Mine were not as heavy, but do you have a submucosal fibroid ? Do you know. If so they can cause heavy periods so removal of such may help. I would ask what options are there for removal of fibroids and what type. Can any of them be removed hysteroscopically. Maybe this has been discussed. Have you tried tranexamic acid tablets to help reduce blood loss ? Shame eysma didn't help for that, it stopped my periods whilst on it. At least that helps when trying to get iron levels back up. S. x

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  • Posted

    I would wait till really sure before going ahead. It's frustrating I know. I had to deal with various drs with different views before deciding what is right for me. I preferred to take eysma as not as risky as surgery, but it can also depend on how your symptoms are affecting your day to day life. If you are managing wait till sure. Read about eysma. They just have to order them in at pharmacies. They are not out of stock in country I doubt . Good luck.

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    • Posted

      Thanks, Shell. the outpatient pharmacy at the hospital told me it's out of stock. When I had the conversation with the secretary, she said eysma has restriction in the UK. I would be much appreciated if the doctor can advise me something else even I am reluctant to any drugs.I use to only notice fibroid in the morning when my bladers are full, but now during the daytime, I can feel something moving and squeezing inside my tummy and more dull pains. It's growing. it looks I have to take one way or another.

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    • Posted

      Sometimes fibroids give symptoms as certain times of month. I find mid cycle at ovulation they can tingle and throb a bit, it doesn't necessarily mean they are growing.

      Not everyone believes in complimentary therapies, but I did a reiki course after stopping eysma and things calmer down. I find it can help.

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  • Posted

    Hi A, you definitely need another doctor, a doctor who is experienced in fibroids removal. Your fibroid is big but not too big as not to be removed without shrinking first. Your story with the doctor literally same as another lady on a Facebook group, the doctor had no idea and he was taking calls as well during her appointment. If you are on Facebook look for a group called endometriosis, fibroids, cysts and infertility treatment. Someone just had a myomectomy for 8 fibroids largest one being 12cm without shrinking first. She is also on this forum. Will send you her name in a message if you want to talk to her. And yes complain to PALS and if you can afford go private, you get away from the unneeded stress with nhs. I went private due to similar issues. 
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