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[Red Fox]

After two months of investigation it seems I will need a hysterectomy to get rid of two large fibroids.

They don't give me any trouble but I understand that they might do if left without treatment.

So I also heard today also that I will be talking to an oncologist and I need a full blood test - although I have been reassured it's just procedure, naturally I'm very frightened. Talk about a ruined Christmas!

Has anyone else had a similar experience and am I being completely over the top in visualising the result being that I need cancer treatment? I feel incredibly well, it would be hard to think I am sick.

Happy Christmas everyone!

[CLKD]

I suggest that you make a list of your worries and phone the Consultant's Secretary after C.mas.  I suspect that removing the fibroids is common to prevent any future risks of cancer?  Surgeons don't think what a new patient needs to know as they are giving this info all the time.

I think we can all go OTT when we get home and think of the questions we now need to ask.  At least you are being referred to an oncologist prior to surgical intervention and not left to flounder. 

You are in control here, it's your body.  Do not feel rushed into anything that you aren't certain about.  It is a large operation and at the very least, can leave you with enough wind to fly a kite    .  Knowing the answers means that a patient is more relaxed and suitable for surgery. 

I hope that some here who have undergone hysterectomy will be along, I believe that there is 'hyster-sisters' but that mayB in the US. 

Don't feel alone!  Make that list and ask those questions ;-).

 

[Red Fox]

Thank you, I will!

[CLKD]

Ask away too! 

[Taz2]

Hi Red Fox. I think it may depend on where the fibroids are positioned in the womb as to whether any other treatments will work. Were you given any information? There are different treatments for fibroids but some of them are offered to younger women in order to preserve the womb for future pregnancies. I don't think the decision to recommend a hysterectomy is taken likely but I would suggest that you do as much research as you can into other ways of getting rid of them and you can then ask questions of your consultant as to whether anything else is possible.

I think that the oncologist has been mentioned as the blood test will possibly be used to check for any signs of problems with your ovaries. Most surgeons now like to retain ovaries as much as possible as they continue to secrete some oestrogen well past menopause but, obviously, it is better to remove them if you have any risk factors for ovarian cancer. It makes sense to remove them at the same time as the hysterectomy if this is the case. You need to research for yourself the different types of hysterectomy too so that you can make informed decisions about what is a major operation. I had one six years ago due to uterine prolapse. It was a vaginal one which might not be possible if your fibroids are very large but recovery from the abdominal one is much better now than it was even a few years ago. I would have kept my cervix if that had been possible as removing it does decrease sexual pleasure in some women but unless you ask you wont be told this.

It is daunting to think of having it done - I was very anxious about mine - but sometimes you do have to rely on what those who are experienced in this type of problem are advising. I guess you've already had a look at the NHS page but if not it's here https://www.nhs.uk/conditions/fibroids/  The various treatments are listed there.

I'm sure someone else will be along soon who has experience of fibroids. Hope this has been helpful? This is your body so you do need to ask the right questions before going ahead.

Taz x 

[CLKD]

 

[jaypo]

I had a hysterectomy down to large fibroids,very VERY rarely are they cancerous but I think Taz gave you very good info,I remember getting blood tests etc as they need to be absolutely sure everything is ok,with the womb and the ovaries,they will test the ovaries for cancer as they need to know if they have to remove them whilst doing the op but again this is just a rarity so try not to worry,they may just do the op vaginally like I had,I was up walking about the next day.Let us know how it all goes x

[Red Fox]

Thank you all for your helpful input, it really is much appreciated! I have read your answers all very carefully and will certainly be asking more questions whenever I get to speak to the consultant I am being now referred to - my first consultant is apparently not dealing with me now as she doesn't do surgery anymore.

I should have said that I am 55 and don't need my uterus anymore but I am beginning to wonder why they are so keen to rush through with major surgery during a pandemic - they said probably 6-8 weeks before the op? I am perfectly healthy (apparently) - have absolutely no symptoms from my fibroids (outer one is 12x9cms and inner uterine one is 6cm) and don't want to go into hospital and then not come out again!! Bit dramatic but Covid is not to be overlooked. I definitely want to know more about UFE.

It seems to me that I am "being processed" and I was told that the NHS simply won't be able to do an MRI on me every year so best to take it all out. I think they are covering themselves against potential litigation and doing this on their timescale not mine - perhaps they are taking the easy route without considering the awful impact this has not just on me but my family too.

Seems I'm going to have to stick a big grin on my face over Christmas and somehow stumble through to the New Year when I'll get the chance to talk to someone about this.

Bah Humbug folks! 

[CLKD]

It may B that the Hospital you have been referred to is not involved with C-19 patients.  They will have targets to meet.  But this is your body so you are able to decide if and when.

Many years ago I was advised to have surgery but put it off.  Good thing as on the admission due date I was very depressed and could not have coped with any news. 

Get that list jotted down and be clear not to be rushed ;-)

[Martha615]

Hey Red Fox,

I'm in a similar situation to you!

I am 57.5 years old and am clearly getting to or through the menopause as my FHS was last measured at 48 and my last period (October) was 9 months after the one before it!

I have a 9cm fibroid and at least one other that is 5cm. I also have increased urgency to urinate (though this could be due to the menopause anyway) and some lower back pain the may have nothing to do with fibroids.

I have had weird measurements on the lining of the uterus in the past and 2 different biopsies (both negative).

I could opt for a hysterectomy right now but not sure yet. I am "late menopause" which increases my chance of endometrial and ovarian cancer somewhat.

I have literally no idea what to do. I read a lot and all I can say is that it isn't easy to decide what to do.

[Taz2]

Hi Martha. Have you been offered any treatment for the fibroids ( which tend to shrink after menopause) other than a hysterectomy which is obviously a major operation. I had mine in 2014 at the age of 60 due to prolapse.

Why not also introduce yourself under the New Members section

Taz x 

[helenmelon]

Hi Martha615,

I am in the same position as you!

I had experienced a little
Spotting a few months ago, I have had fibroids previously and one was 9cm so large and others, I had UFE in 2015 and the fibroids shrank and died. However, I went to see GP a about my spotting and because I’m on HRT she referred me for an ultrasound to check endometrium.

I went yesterday for the ultrasound and as soon as she put the scanner on my tummy she said you have fibroids! The first one measured 5cm and then she told me my womb was packed full of them ! I asked about my endometrium but she said because there was so many fibroids she couldn’t even see it to measure it! I have to ring my GP next week but I’m expecting to be told I need a hysterectomy as that was what they wanted to do in 2015 and it was me who sought out an alternative treatment as I really wanted to avoid a hysterectomy.

I’m now wondering why I went through the whole UFE which was a much more invasive procedure than I thought it was going to be, I had it done with a local pain block and it took almost 3 hours from start to finish and It was very difficult to stay very still throughout the process and I had painful recovery although I’m sure it isn’t for everyone.

You say you have lower back pain and you have urinary urgency, I had that the first time and pains in the top of my thighs this has returned in the past few weeks and I had said to my husband that I felt like I did at the height of my fibroid problems, so I definitely think your symptoms are to do with your fibroids rather than just menopause symptoms.

Before I went on HRT 3 years ago I was told by one gynaecologist that my fibroids would definitely return, but another said that was not a definite and my menopause symptoms were so severe I decided to take a chance, plus I have a Mirena coil which was supposed to help with fibroids and any potential thickening of the endometrium.

So now I find myself back to square one and I don’t really see an alternative other than hysterectomy, hoping I can delay until the pandemic calms down !

Good luck to us both I say xx

[jaypo]

Hi helenmelon,just to say,you can have a vaginal hysterectomy and don't need to have your ovaries removed,so please do ask about this,that's what I had and the recovery time is halved and it really was the best thing I ever did,good luck

[helenmelon]

Thank you Jaypo , I will but I was told last time that if the uterus is too bulky with fibroids this may not be an option, my mum had a vaginal hysterectomy and I was really surprised at how quickly she recovered. I will definitely ask though fingers, knees, legs and anything else available to cross is crossed 🤣

[jaypo]

If it's vaginal,no crossing of the knees helenmelon 
Please let us know how you get on