Please help: Fibroid scan, hysterectomy recommended, don't know what to do

[JanePrentiss]

Hi,

Due to irregular bleeding I had an internal scan a few months ago where they identified a fibroid about 4cm large, and today attended the next stage along appointment to see if the fibroid could be removed and to take a biopsy.

During the scan the gynecologist showed me the screen and it was wall to wall with fibroids. He has said he would recommend a hysterectomy due to the volume of fibroids and the surface area covered by them - he said something about either fallopian tubes being blocked by them or the view of the fallopian tubes vein blocked... Even the 2 nurses in the theatre agreed there was a huge amount of them.

I should hear the biopsy results in about 4 weeks, but hopefully all is OK in that respect, however I'm not sure what to do regarding the hysterectomy.

I think I'm perimenoupausal anyway, hair thinning, mind fog, tired, etc but when I'm looking into hysterectomies the issue regarding possible prolapse issues or bladder /bowel issues.

Can anyone point me in the right direction to useful resources or share their experience either having a hysterectomy or as a professional who works in this area?

Thank you!

I had a hysterectomy because I had fibroids. My womb was the size of a 6 month pregnancy because of them.

I was 34 when I had it done and am 68 now. Never had any problems whatsoever. They did manage to leave one ovary but still said I would almost certainly go through early menopause. In fact I didn't go through it until I was in my 50's.

I had an abdominal hysterectomy. Was only in hospital 2 nights, up and showering the morning after the op.

For me, it was the best thing as no more really heavy periods, no more period pain

mydogisthebest

Thanks so much for your reply, that's a big help and much appreciated.

Will the fibroids not shrink with menopause anyway.

Not sure, any questions I should ask are helpful so I can ask that, but from what I could see on the screen and what he described, it seems like the size wasn't a huge concern but it's the volume - it appears they are everywhere and my irregular bleeding is drivi g me crackers.

I haven't come across any info Re fibroid shrinking after menopause, does it gave significant inoack or is it just a possibility this can happen?

I had a hysterectomy at the age of 44 because of fibroids. I had one massive one which was about the size of a 5 month pregnancy, and it had spawned a smaller one too. I was bleeding SO much every month, sleeping on towels, using incontinency pads and super size tampons, on iron because I was so deficient - utterly miserable. Yes your symptoms will disappear with the menopause so it's a balance - how far away is that likely to be and how prepared are you to put up with the symptoms? If a medical professional (or several) are recommending a hysterectomy then I'd listen to them.

There are various ways of performing the actually surgery which will depend on your case - you can have it done vaginally or keyhole which avoids the large wound, mine had to be a full open procedure down to the size of the fibroid. It was major surgery, 2 nights in hospital and a few weeks of rest and recuperation. No bowel or continence issues.

I am on HRT for menopause symptoms now, but so are many of my friends who haven't had a hysterectomy.

I had a partial hysterectomy at 45 due to endometriosis and adenomyosis. I had a huge ball of tissue (4.5 cm) at the top of my uterus which was initially diagnosed as a fibroid but turned out to be a growth caused by the adenomyosis.

The hysterectomy went really well even if I needed and abdominal one because there was so much going on (the growth, organs stuck together due to the endometriosis...).

You might be able to have a simpler keyhole surgery and you can keep your ovaries and cervix too if possible. I kept mine and had no need for HRT until I reached the age of natural menopause.

I was bleeding all the time before the op and had no quality of life so for me it was the right decision. Touch wood I have had no complications so far.

There is very informative website called Hystersisters with forums where women from all over the world share their experience and ask each other for advice. I find it quite useful while I was going through all this.

I had a total hysterectomy at 46 due to large fibroids and associated heavy bleeding. To say it was life changing is no overstatement. I was lucky and had very manageable menopausal symptoms. Honestly I would do it again in a heartbeat.

I have large fibroids (x2 10cm ones, x3 smaller ones up to an inch each). They are no joke :-( . I was recommended a hysterectomy, however due to my age (30's) I said I wasn't comfortable with that. I got on some really helpful fibroid groups on Facebook, discovered about a 'myomectomy' which for me, if I have surgery I will push for as an alternative to hysterectomy. There are other options depending on the type and location of fibroids.

I think I read somewhere that the NHS has recently authorised a jab which can reduce the symptoms such as bleeding I believe, although doesn't remove them obviously.

I understand that for some, the fibroids shrink or become less troublesome after the menopause, that isn't a guarantee though.

Thanks everyone, I'll have a look at hystersisters, all your replies are really helpful and much appreciated.

I wouldn't bother with Hystersisters to be honest it is a very "American" group - nothing wrong with American per se but their healthcare system is so different that you just can't get decent advice or shared experiences. I didn't find it useful at all.

Lots and lots of good advice on here, or the menopause forum. I'm sure there are also UK-specific Facebook pages or groups which would give better advice.

''@WhereAreMyAirpods
I wouldn't bother with Hystersisters to be honest it is a very "American" group - nothing wrong with American per se but their healthcare system is so different that you just can't get decent advice or shared experiences. I didn't find it useful at all.Lots and lots of good advice on here, or the menopause forum. I'm sure there are also UK-specific Facebook pages or groups which would give better advice.''

Well I disagree. There are women from the UK posting there too and from the rest of the world. I read a lot of good advice on there and I also started my own threads to ask specific questions.

The OP can have a look for herself and make up her own mind.

I had a hysterectomy for one large 15cm fibroid which they discovered when a blood test threw up significant anaemia. I knew I wasn't feeling quite well but put it down to perimenopause. I had a partial abdominal hysterectomy (kept my ovaries) and it was like a miracle. No more bleeding plus getting my iron back up to normal meant I felt like wonder woman - hadn't felt that well in about 10 years. It was like a miracle.

On the practical side, I was in for 3 nights, it was pretty painful the first couple of days but then got a lot easier.

My experience is that it has been absolutely life changing and I'd recommend it for anyone, if it suits their circumstances.

Thanks everyone, I've had a quick look at hystersisters but been hectic today so not had a proper mooch..
All posts appreciated, it seems everyone who has been in this position has seen benefits which is really good to hear.

I had a total abdominal hysterectomy on Monday - same reasons, loads of fibroids and irregular, almost continuous bleeding. I spent 3 nights in hospital and am now recovering at home. I’m a bit sore and tired but ok.

Having always had heavy irregular bleeding and fertility issues, I had a myomectomy in my late 30’s. I knew there was a good chance the fibroids I had then would return, but hysterectomy would have completely ruled out any last chance of having children. My bleeding problems eased considerably immediately after that but gradually got worse again. I tried Prostap injections for a year or so in my mid 50’s, on the basis that after that time I should have hit menopause and be bleeding less anyway (nope! Turns out I’m one of the tiny minority who don’t reach menopause by 55). I’ve just put up with it for the last 5 or 6 years but couldn’t hack the bleeding, the iron deficiency, the uncertainty, the increasing bloating etc any longer. Can’t wait to buy myself a complete set of knickers and jeans now!

Make sure you get good HRT advice whatever treatment you get. I’d recommend looking at Dr Louise Newson’s Balance website for loads of practical, researched, informative and non-judgemental advice. I’ve been taking modern HRT for about 3 years, which contributed to the fibroid re-growth but was tremendously beneficial when hot flushes, night sweats and complete brain fog hit me! I’ve stopped it for a couple of weeks on my gynaecologist’s advice while things settle down, but by now am remembering what pre-HRT life was like! I’ll definitely start it again as soon as I can! Whether you decide to take it or not, find out all about it from a balanced source and don’t “just get on with it” unless that’s a properly considered decision you (not your GP, your mum or the Daily Mail) have made.

Good luck with whichever course of action you decide on 🙂

I had one 3 months ago for a 21cm fibroid. I had a subtotal hysterectomy- they removed the ovaries (8cm cyst on one of them) but left the cervix. It has been life changing. I’m able to wear shorts I haven’t been able to wear for 5 years. I have so much more energy and can go out without worrying where to find the nearest loo. First week was a bit sore but I managed with paracetamol and ibuprofen and I was pretty much off them after 7 days. As long as you listen to your body and stop when you feel tired or sore you should be absolutely fine.

My Mum had the same with multiple fibroids and irregular bleeding. She had a full hysterectomy and was home the next day. It changed her life immeasurably. Much more energy, able to exercise, looked and felt so much better. She used hrt for 15yrs but stopped it a few years ago. No regrets afaik.

(Listening to The Magnus Archives as I type - teen DD loves it. Assume that's where your name is from?)

Hi everyone,

Not checked here for a while. After the follow up call I've decided to go ahead with hysterectomy.

TheWSM, they advised it would likely be abdominal, so your post has been really helpful, thank you. I'll look at the website you have mentioned.

ShanaLear (fab name haha!) hope you are continuing well with your recovery. Do you mind me aski g what were the reasons you kept your cervix?

ShowOfHands, yes Magnus Archives but I haven't listened to them in ages, never seem to have time, my dc love them, they are deliciously creepy stories!