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Thanks Nicki

About pregnancy, it is not something that I am planning for soon but I don't want to rule it out as I haven't had children.

I think a couple of the consultants have mentioned something along the lines that the fibroids should be removed and should be removed by myomectomy if I want to have children in the future. Though they didn't want to discuss alternative methods such as MRgFUS or pros and cons.

Also I think you're right about the commercial push for MRgFUS. The company seemed to not want to discuss the details of the procedure or its cost before I was on their books. They only sent me generic information that I had already downloaded from their website when I pushed them for more specific details.

I tried to chase this with my GP who didn't seem all that knowledgeable about this procedure. She sent me back to the hospital where they were keener on myomectomy.

But having considered the limited information I have had on MRgFUS it doesn't seem all that great. And I don't seem to have any choice in the matter.

Just to update on my situation - I still haven't had a chance to speak to my consultant/potential surgeon directly but with a lot of chasing up on my part I found out that she wants me to take two further Zoladex injections before the surgery which is potentially due at the end of April.

I've had the fourth injection in February and the next one is due in a couple of weeks.

However my period started today which is not supposed to happen when you're having a course of Zoladex injections. The frustration of the experience I've had so far as well as having to endure the injections and side effects was so much I just wanted to cry.

I will try and find out from the gynae nurse who administers the injections whether having a period a month and half before the potential operation date will jeopardise the plan.

My abdomen has been huge (bigger than before) for a few weeks. I was concerned about this but the nurse didn't really think much of it when I saw her recently.

Due to staff unavailability my third injection was given 10 days late and the fourth injection 18 days later than they should have been given. I wonder whether the sudden fibroid growth and period is because of this delay. Does any one know whether this should be happening?

Regards, SB

Hi,
The question is do you want to get pregnant later. This dictates what treatment option available for you.
The fibroid size is large but not too large for myomectomy (mine were much bigger when I had my ops). About, MRgFUS, yes there is a big commercial push for this by the people who provide the service. Your PCT may not prepare to pay for it. Treatment success rate is NOT great. If you do want to start a family later then MRgFUS is not a guaranteed technique for this purpose. Besides with multiple fibroids you may require more than one MRgFUS treatments.
It is not unsual that Zoladex does not work well in large fibroids. I had 2 injections when I was seen by QE hospital Woolwich (it was for preparation for hysteroscopic resection granted by a registrar which was later refused by the consultant) and I found the side-effects were too much for me and the size of fibroids did not change.
Nicki

I was diagnosed with fibroids two and a half years ago.

Following this there was a schedule of visits to my GP, scan department at one
hospital, gynae doctor appointment at another, another few scan appointments,
another few gynae appointments, one hysteroscopy... and now finally I'm having
treatment: zoladex followed by surgery.

At one of my gynae appointments the doctor stated I have a large fibroid
(11x9x9cm) + a smaller one. The scan apparently didn't show much as the fibroid
was so big it was blocking the view.

The last doctor I saw, who is going to be my surgeon and consultant, stated that
the best course of action was myomectomy through the abdomen following three
Zoladex injections.

But other suggestions had been made previously based on the same scan results
for example trans-cervical resection surgery. I had asked also about
embolisation (mentioned by my GP) and tried to find out about Focused Ultrasound
treatment (an advert I had seen), but a couple of gynae doctors recommended
against these.

The impression I have got from the gynae doctors/consultants is that the scan
results are not completely clear. I don't feel too confident about the surgery
option because of this and also because given that whenever I ask something of
the doctor I'm given vague and sometimes conflicting answers, or I am dismissed
without being given answers.

I have had now all three Zoladex injections I was initially prescribed with, and
in theory should be due for an operation in just under a months time. However
nothing has been confirmed and I don't know what to do to prepare.

Also the last scan showed that the fibroid hadn't shrunk with the medication...
and I also found out then that I have polycystic ovaries which no one had told
me about during the previous 2 1/2 years worth of hospital visits.

I have an appointment with the surgeon in another couple of weeks time where I
may be given more information.

I'd like to hear from women who have had a similar experience and what they
would recommend I do or questions I should ask the consultant/surgeon.

Also if anyone has had surgery can you please advise me on what to expect. I
understand that it is like a caesarian section operation.

Kind regards

SB, London

(By the way I'm 35 and haven't had children.)

Hi,
What you experienced is normal. I went through more or less the same. So let's see the ultrasound scan's result- this gives a clearer picture. Your gynaecologist may want to do a hysteroscopic exam to confirm diagnosis.
Let us know how you are getting on. Take care. Nicki

Hello - I'm a new member of the forum - name's Carol.

Am feeling pretty anxious about everything at the moment.  I've had an on/off pain in my right lower groin for several months - not bothered me too much as we're in the middle of preparing our house for sale and I've done quite a lot of physical work so assumed it was a muscle strain.  Anyway, I noticed my womb felt quite lumpy when I was lying down, so though I'd better to to the doctors. In the meantime I'd googled my symptoms and was convinced I had some sort of cancer.
She gave me an internal, and said it was most likely I had fibroids.  I'm booked in for an ultrasound on 1st September, but I'd be grateful to hear anybody else's experience of how they discovered they had fibroids.  My symptoms are :
 - on/off pain lower groin
 - lumpy womb (also quite tender)
 - fairly heavy periods - sometimes flooding - some clotting
 - being very tired during my period
 - some lower back pain (although this COULD be muscular as I don't have it all the time)
 - needing to wee a lot - have started waking up in the night to wee as well
Does this sound familiar?
Thanks for looking


Carol

Hi,
Just in case you have not realised, on the BFT website, we have an information page on this treatment www.britishfibroidtrust.org.uk/MRI_FUS.php
The treatment centre is called MR therapy centre at St Mary's in London Paddington.
I have a video for it but not yet available on the website.
There is a scientific paper [Image guided thermal therapy of uterine fibroids] on this treatment on http://www.britishfibroidtrust.org.uk/papers.php
Let see what the MRI scan reveals. Keep us posted.
Take care.
Nicki.

Thank u for your messages.  Well, my 'treatment' has now changed since the last post.  I went to see the 'top' gyno in my area yesterday and he's referring me for this new hi-tech focus ultrasound treatment at St Mary's Hospital in London. I was amazed as I was expecting the usual op! He said because my fibroid is so large and my age (35) he doesnt want to operate because it will be risky. He has only ever sent 10 patients for this treatment before but they all swear by it - not painful and no long recovery times. My next step is that I'm now waiting for an MRI scan at my local hospital and that will be referred to St Mary's - he will then have to get the funding from the NHS!!

Apparently this type of treatment is a pioneering option for non-invasive treatment and hardly done in the UK - there's only a few countries that do it and is very up-to-date - they basically zap the fibroid with laser's and you are only admitted to hospital as a day patient - no op at all.  I'm pleased at the thought of not having an op but it does slightly concern me - will this work and will the fibroid return?   It's no guarantee yet that I will be accepted for this treatment although my gyno was pretty sure I would under the circumstances and get funding from the NHS for a VERY expensive option!  I will wait to see what happens.......

Dear jcroo65510
First of all good luck with the op.
You are quite young to have such a large fibroid.
One option that may avoid a vertical abdominal incision and allow your surgeon to use a low transverse (bikini line) incision is to medically shrink the fibroid uterus size with 6 months of GnRHa therapy. I tend to use 3 month injection og  Decapeptyl or Prostap SR. If it achieves a 30-40% shrinkage this may allow the surgeon to use the cosmetically better bikini incision. It is important they achieve a good hit and harvest all the fibroids not just the obvious big ones as this will reduce the risk of fibroid recurrence and repeat treatment.  best of luck with op, rajesh

Hi Chris, are you on any maintenance medical therapy to prevent fibroid recurrence and/or prevent your single fibroid that was left from continuing to grow.  good luck with recovery, bw rajesh

Dear Kate, First of all good luck with the op.
A myomectomy is the ideal op for in your age range with your desire of future fertility.
Ask about any uterine cavity breach, as sometimes ths may mean vaginal delivery is less safe and an elective caesarean delivery is safer for your future pregnancy.
I am confused about the malignancy, as if they truly thought it was malignant they wouldn't have given you Zoladex or taken so long to schedule surgery. Fortunately malignancy is exceedingly rare (0.2 to 0.3%) and tends to occur in older women, with multiple fibroids and rapidly growing fibroids.

bet of luck, rajesh