Hi all hope everyone is well. I have my operation rescheduled my new date is 22 February 2018.
I am having a Laprascopic Myomectomy. It has taken nearly 4 years to get to this point here is what I have learned. A new Fibroid takes 5 years to get big enough to cause problems so I was 48 years old when diagnosed. So add 5 years that’s 53 years old. So any new Fibroid is swept away by the Menopause. UFE may not elimate a large 11cm Fibroid. But it will shrink it to 7.5cm (or less for some). This enables the patient to be eligible for Myomectomy like myself (it was not possible at 11cm). So I would have insisted the Gynocolgist refer me for UFE. Then to a Laprascopic Gynocolgist ( specialist who is never mentioned but is the best person to do a Myomectomy). I am so angry that I was only offered Total Open Hysterectomy at the beginning or Hot Flush Tablets. Not a choice. After this is over I want to start a Fibroid Awareness group. Men would not accept this. Why should women?
I totally am in the same position as you. In fact, I am even more disgusted that they don’t offer women less intrusive approaches like high frequency ultrasound to help break up the fibroid with NO downtime & NO surgery.....
I have had the UFE I am 46 my gp thinks I won’t get anymore fibroids because I will be going through the menopause soon. The UFE is there to shrink the fibroids it stops feeding blood to them and they are meant to shrivel up. Mine was inside my womb so might depend where it is at
I had a myomectomy via a hysteroscopy under a general anaesthetic in 2016. I have numerous fibroids and all 3 types, so doctor took me off the pill saying they were 'feeding them'. 3 months later I was crunched over with arthritis as the pill was beneficial to my bones. I then needed to go on hrt in order to walk upright again as my spine and even bones in my feet were all aching.
I then started post menopausal bleeding after about a year on hrt and then referred to gynae and initially told I should have a hysterectomy. I queried this and saw another female consultant who said a myomectomy would be better for the largest fibroid which might have been causing the bleeding as it had a large blood supply.
Bleeding continued after its removal and it was by chance that I spoke with another consultant when I phoned one day who said it could be the continuous hrt I was taking and some women behave badly on it and suggested I try and non continuous one and within a short space of time all the bleeding stopped.
Since having the fibroid removed though I have a lot less back pain, could be the hrt helping, and am glad I didn't go down the route of having a hysterectomy as the first option, for me that was the last resort if all else failed.
So 2 years of almost daily bleeding caused by wrong hrt.
I travelled for that, as I'm qualifying age, size (just) but was refused, as they said it was already partially devascularised (probably after Esmya & Zoladex) but are there effects temporary? I just don't know as on & off I've been on them since August 14 until Dec17! I've tried everything not to have major surgery. I now have an inflammatory condition, can fibroids cause that, I wonder?
So very interesting you bring up the subject of arthritis. I seemingly have a lot of inflammation in my spine & pelvis & they want to out me on a drug for life, however I seen another consultant 6 months back who said not & I was to cross it off my list! Do you think fibroids can cause inflammation? The hrt for you balanced your hormones & reversed it. How very very interesting indeed. I so so don't want a hysterectomy, but have been refused for UFE, MRIfGUS had all the drug treatments & no shrinkage. Next step a very specialist Laprascopic Gynocologist. Travelling again, watch what he says! On 3 other totally separate matters I've actually had extremely conflicting consultant advice. Heart, liver & rheumatic, so worrying.
Good Luck Patricia, well done you for pushing & pushing for least invasive, I really have tried so very hard for that. I hope it doesn't get cancelled this time. I wish you a speedy & healthy recovery & hope this surgery is the answer to end your fibroid suffering.
I had inflammation prior to UFE. I am not sure if it causes that, however I can say with certainty that i had low blood pressure my whole life, and prior to surgery it was elevated. The minute the fibroid was removed, it went back to my usual low. I wonder why these issues are so so on the back burner in medicine when so many women have them???
Oestrogen good for the bones but bad for the fibroids. If you do have an hysterectomy ask if they can leave your ovaries, dependent on your age of course, they can help reduce bone loss in the menopause.
When my GP took me off the pill, with a flick of his computer key, saying it was feeding the fibroids, I had been on it for years and the abrupt cessation may have caused withdrawal symptoms the orthopaedic consultant said, but she also advised me that in future it would be best to see a female GP who has better understanding. All best wishes for when you see the gynaecologist and hope they can offer you something.
Absolutely - it's almost epidemic proportions! That seems an exaggeration but 70% of women, with possible anaemia, breathlessness, inflammation, back, sacroiliac & pelvic pain - this list seems endless but the symptoms seem widespread between us. I'm grateful for this page & those who care enough to post to try to help others. God bless us & help heal us all.
I am grateful for this blog too, as I have no one else to help support me through my recovery. Just had a Myomectomy on the 16th. The fibroid was so large that it tore another hole above my cervix. The head of gynocolgy had never seen it before. Says something.
I have so much pain and exhaustion that I don’t even know what day of the week it is. But I am sooo grateful it’s out! I couldn’t pee for a year properly. Not to mention back pain, siatica and coldness. Yea - so cold because so much blood was going to that fibroid.
After surgery?
Back pain gone.
Siatica gone.
I’m feeling warmer.
Rib cage is back in.
This is just over ten days, so I know I got more to come
So pleased for you, hope your recovery is fast. how big was the fibroid? Did you have open surgery? I have coldness too next thought of that! I just wonder if my fibroid is contributing to inflammation? As I've had one consultant say I've got an auto immune condition & another say I haven't. Keep me up to date with how you are doing. God bless you for a smooth & quick healing. x
Hi Heather, you mean degenerate fibroid? If so still has to be removed because if not will calcify. I thought you already had your surgery based on your comments in another post? Hopefully you won't travel to far to get what you need. Good luck with your journey.
Hi There Mariai, I'm not sure what post you mean as I've written a few, but no & no,. I'm no expert but let me briefly explain. The consultants (2 of them used the word de-vascularised, or at least partially but a significant part at the time of imaging. (my worry was that could be temporary as I was on Zoladex or Esmya at the time, which I had had a lot of since August 2014) So it basically had a reduced blood flow, they also explained it could basically mean that its strangling itself as it has gotten so big, it had basically outgrown its blood supply. However it could also be a temporary effect from drugs, less likely in my case but possible. No I haven't had any procedure, I've travelled miles & it's taken year's in pursuit of minimally invasive options (these should have been offered when it was 6cm but weren't - I could have had a keyhole myomectomy then & hopefully had the option to have more children but age was not on my side - I was told its ok to just leave it) & had 2 actually booked but both refused before treatment, the first one hadn't bothered to look at the MRI & scheduled a UFE did an internal & I'd travelled for 750 odd miles, the other IR was worried about effectiveness for me & infection. Another IR said I was ideal candidate for MRIfGUS & then after another 700 mile round trip, the gynie read the letter from the IR who scheduled then decided to cancel the UFE - (which I actually asked my GP NOT to send, so the new consultant could make his own mind up from the images - as I was unsure if the first opinion had been affected by success statistics) but actually said I was unsuitable & that at the time of scanning my images would be those they'd expect to see after the procedure. (But as you know I was concerned that may be a temporary state due to the drugs as had been on them for around 2 years on imaging) As from what my very professional (but not specialist) local consultant explained, is, what I would count as a success ie enough reduction to get it out by keyhole, may not be considered a success on a surgeons stats, especially if those stats reflect in a private practice. So I was left feeling a bit duped to be quite honest. As I think Patricia, the original author of this post was after a few of her visits, pushing her towards a decision she really did not want. As she had to keep on insisting for least invasive. She was lucky, her fibroid must have looked like there could be a chance of significant reduction, she found someone willing to try a UFE on a big fibroid (didn't get any infection - as more risk the bigger they are - as my consultant explained they become like a big abcess & the bigger they are the more material to de-grade/degenerate) & now although some consultant's would say reduction from 11cm to say 7cm hasn't been a complete success in the 50/60% or more they ideally look for, it has been a success for Patricia as she can now qualify for the minimally invasive keyhole surgery she wanted. Which is exactly what I wanted. Basically a reduction so I could get my 13cm fibroid out by keyhole & 4cm for example like her making mine 9cm would have been a lot more feesible for keyhole. Hysterectomy is sometimes the only feesible option for some ladies, we are all different but believe you me, I've tried to avoid it. I'm now going to see a specialist pioneering keyhole surgeon to see if he would agree to take my fibroid out via the Da Vinci system, if he says no then I'll finally know, once & for all. Unfortunately for me some other issues have cropped up which are more significant & further complicate me actually being able to be inverted for the length of time they'd need to get it out by keyhole. So all I can do now is pray & wait. Thanks for your good wishes, it's another 450 mile journey to see this specialist but hopefully this journey won't be in vain like the others, but at least I researched & at least I tried my best.
So it basically had a reduced blood flow, they also explained it could basically mean that its strangling itself as it has gotten so big, it had basically outgrown its blood supply- THIS is degeneration
I have seen a post a while ago I think, where you said something about being very happy with your nhs doctor and I assumed you already had your surgery.
Thats is a long journey for treatment, where about you going? In London UK, there are a few doctors that does Da Vinci surgery. It is a shame that you were refused treatment when the fibroid was too small and now you are facing complication. Its a proof that we have to push for the best care and when the specialist are not near us, then travelling to see them is a must to get what we want.
And you seem to have made a huge effort to see a specialist. Lets hope this one will work.
It had reduced blood flow whilst on the medication but still had blood supply & was growing. The IR would only commit to say he thought it might be partially dying.
Yes you would be correct that I am very happy with my local nhs gynie, he's a very caring genuine person, though he more than likely won't be my surgeon, but I've never said that I have had surgery on any posts. I did worry about some posts on here encouraging people to have surgery abroad, whilst I'm sure there are many genuine places abroad & many caring genuine private surgeons whose goal isn't solely financial, there is a big risk when you leave your homeland unless you know what you are doing. It did appear to me that some users may be using this group as a platform for promotion. Which is not what this site is for, I was concerned to read some of the posts. So I know our NHS gets bad press & things don't always go right, but I do respect it & we are very fortunate to have it, though appreciate there are lots of different view points even from consultants in the same department. The IR that booked my UFE did work for the nhs but also had a private practice in London, so success stats were more than likely an influencing factor to the cancellation letter I received a month before the procedure, not so professional when I'd travelled so far & ensured he had my MRI's to view before I got there.
I totally agree with you about starting an awareness group. It is so needed. many of these OBs are really doing more harm because they have their own agendas and keep many women in pain for so long instead of finding offering them ALL possible procedures that could help. They exclusively only offer and push hysterectomies.
Hi Amanda, I had the UFE done to. All of my firboids were inside my uterus too. How long did they take to shrink? And how long did they discharge? I am going through that now.