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

    Hi Guy's I won't put my whole ordeal on here again but Esmya is usually prescribed only pre surgery as its effects are temporary. It didn't work for me though stopped my periods, which was great. Zoladex implants didn't work either. My experience is that a myomectomy recovery is similar time to hysterectomy that they are both usually down under general not local like a c section is, as the op is too long. The recovery like a c section is at least 6 weeks. (or no lifting & driving) Eating healthily is ultra important google alkaline diet hard but work the change & also, core & pelvic floor exercises & getting a good physio. One that specialises in female recovery to massage the scar area (after first healing) & help prevent internal adhesions. Hope this helps. We are all different but I think after 10 years of dragging my feet at 47 I'm heading for an open hysterectomy. I'd be absolutely devastated after all this to have a myomectomy & have regrowth. I am aware a hysterectomy can destabilise the spine, but I have been told that core strengthening & pelvic floor before & after the operation help & that a back condition shouldn't be the reason to not have open pelvic surgery. So I think after very much deliberation that's where I'm headed.

  • Posted

    Thanks very much for all your reply. it was a long post, I thought no one would be interested. your warm message encouraged me. I was very emotional since I post the discussion, crying before I go to sleep last night.

    I am petite and I have noticed I am very sensitive to the drugs. when I had my MRI, I had an infusion to make the MRI image better. The drug made me dizzy and blur vision even the nurse told me not many patients would notice. When I had a blood test for anaemia, I felt the same thing. The nurse who I have seen in pre-assessment did warn me I shouldn't be given too many drugs as my body would overdose. I have googled Esyma and other drugs, I just feel all the side effects will happen to me. The only reason I accept the drug is the last two consultants advise if I don't take the drug, the fibroid could become bigger so the incision could be vertical, and a longer recovery period. I wouldn't mind taking the drug for a short period. The surgery sounds dreadful to me, the last consultant has described how the opp goes, I am so scared. 

    It's my first time to have contacts with NHS hospital, so I don't really know how the system works. I was even thinking maybe I overreactive with the doctors. I don't think it is the right way to treat a patient who is going to a major surgery. I am going to PALS, I certainly don't want this kind of doctor to perform the opp.

    Thanks, all you kind ladies. I don't feel lonely anymore. 

  • Posted

    Hi

    Insist on a Referral to a Laprascopic Gynocolgist. They are the only ones qualified to do Laprascopic Procedures. How many CM is your Fibroid. Mine is 

    7.5cm I am having a Laprascopic Myomectomy. I had Esyma but it give me headaches and tiredness and did not shrink the Fibroid one  bit. I would not recommend it. The Gynocologist said that you need to have 4 rounds of Esyma for it to work. I decided I was not going to be on it for 12 months. 

    If they say it’s too big for a Laprascopic procedure then you can always try UFE 1st there is lots of info online.

    Good luck and be strong it has took me 3 and a half years to get to this point. 

    • Posted

      Thanks Patricia, mine is 9.5cm. had the ultrasound today, the nurse told me, it seems no significant growth. there was a discussion about keyhole surgery, both consultants didn't recommend as mine is a big and keyhole will increase the risks. 

      UFE/UAE been discussed too. I googled and it looks an innovative treatment, the side effects are not sure, it could damage the wall of the uterus. I am still thinking of having children in the future. If I don't remove the fibroid, how can I get pregnant with such large thing inside? Whenever I thought about it, can't stop crying...

    • Posted

      Hi a, If you want babies, then you are looking at the drug route or myomectomy there are specialist surgeons like Patricia said who will consider keyhole - as mine is 13cm & keyhole may not happen for me but is not completely out of the question. However I do believe from the info I have that with larger fibroids like ours there can be more risks with keyhole & time of procedure & skill required. However you would need to specifically discuss your own individual case with a keyhole specialist.

    • Posted

      The embolisation is not advisable if you wants kids; can affect fertility. You need to have it removed and is not too big for an experienced doctor to do a keyhole surgery. The longer you wait the harder will be to have it removed. And is difficult to conceive as well. Have a look at treatment abroad scheme, you can apply for refund of the operation if you are going abroad and have it done. 

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