Fibroids - I've just been diagnosed, looks like it's pretty big.

[wicketkeeper]

Chances are I'll need to have a hysterectomy. Just need someone to tell me it'll be OK. This womb and I have been through a lot together.

Hey

How you getting on? That's a huge thing to deal with. Hope that you've got someone there to hold your hand. You're going to be absolutely fine. Make sure that you ask the doctors everything you need to know so that you can be comfortable with the decision/treatment. If you can be certain that it's best to have it out, then it'll make it easier to deal with.

Have you looked online for some specialist support groups? They can help and there'll be people there to answer your questions.

xx

Hi wicketkeeper, do you mind I I ask how old you are?

I had a hysterectomy for fibroids at 38, mine were huge, had started growing outside the womb and were causing lots of problems (that's not the norm as far as I know, so don't wish to panic you).

Since having the op. and having no more awful heavy periods, I have to say I felt much better physically, and sex life greatly improved (always a bonus )

On the con side, - its a big op, especially if you have an abdominal cut and takes a good few weeks to get over, so you'll be out of action for bit.

Emotionally I found it hard, I would have liked more children, but I was very happy with my two, - its just the feeling of the choice being gone, and in a sense entering a new phase of life. It took a little while to get used to.

Also I used to be very thin, but now am quite fat, there are lots of other factors involved in that (cake being one of them!) but I find I do put on weight much more quickly since my op. But if you are sensible I'm sure that can be avoided.

Another problem - I got an incisional hernia after my op. and had to have it repaired, - again doesn't happen to everyone of course, - just telling you my experience.

I'm 51 now and I can say, I don't regret having the operation and I would do it again in the same circs., fibroids were making life miserable, I was in pain, anaemic, and felt awful most of the time. So for me it was pretty much the only way out.

Good luck with coming to your decision, its a tough one to make, but I think its a question of weighing up the effect the fibroids are having on your life.

Hi Max - thanks. I was beginning to think nobody cared (sniff).

My doc is fab, treats me like an intelligent human being. Ditto DH, who is with me every inch of the way - totally understands the emotional impact, but also wants me to do whatever I need to do to get it sorted. I have of course googled the diagnosis and the possible treatments. All the other options seem to be for smaller fibroids (mine's 13cmx14cm, doc described it as 'huge'), I guess I should wait for the meeting with the consultant before jumping to any conclusions though.

I said initially, when I first noticed a problem, that I would do anything to avoid having a hysterectomy (my xSIL had one when she was the same age as I am now, about 15 years ago, and it led to depression which she is still suffering from - don't want to go down that route). And the problems it's causing seem cosmetic/fairly trivial - a bigger belly than normal (well, I'm 50, I'm lucky to have got to this age without putting much weight on, a big belly is hardly a major issue, surely?), crazy heavy periods (but only for one day a month, and it's not like I'm not able to cope, it's just a nuisance), increased bladder weakness (but it's only a bit worse than the stress incontinence I've had since DD was born 26 years ago, and that's why they invented Tena Lady, right?). Plus fibroids often reduce after menopause - I can't have much longer to wait!!!

But then I think - hang on, why shouldn't I have a decent figure, I eat well and work out, I should get the benefit, if I was bleeding that heavily from any other orifice I'd be in the hospital, and, actually, I'm sick and tired of wetting myself - if a hysterwhatsit will sort all that out why shouldn't I go for it?

Support groups seem to be of the 'how dare these men take our reproductive organs' variety, when what I'm needing is sensible science-based information, or to talk to someone who's been through it.

Thanks for listening.

xx

Hi Kurri

Glad it was a positive (mostly) experience for you. I'm 50, so amongst other things more kids isn't an issue, thankfully. I am concerned about the weight gain aspect - I'm 5'8" and have weighed 9 stone for the last 8 years (previously weighed less than that). I'm happy with my figure - although at the moment I look about 5 months pregnant, and I'm very self-conscious about it, so don't know why I'm worrying. At least post-op I'll have the option of dieting to control my weight, at the moment I don't feel like I have any control at all.

As I said in the previous post, the fibroids are effecting my life, but only in what on the face of it are fairly trivial ways. It's not like they're life-threatening, or causing pain (apart from some low-level back pain occasionally). But I've stopped going to my exercise class because I'm struggling to bend/lie on my stomach and I'm very conscious of the belly. I feel totally unsexy, and DH worries he might hurt me, so things have ground to a halt there too.

Don't know how long it'll before I get to see the consultant, but I'm looking forward to getting it sorted, and pretty resigned to having the hysterectomy.

No problem - hope that it's helping to write everything down!

I don't think that your reasons are trivial at all, particularly when you put them all together (not like you're 'just' dealing with heavy periods) - it sounds like life is a bit of a struggle at times and the hysterectomy would solve a lot of those problems. Even though they're not life threatening, you do still deserve to be free from the problems: there's no point making life harder for yourself than it has to be!

From your posts you seem to be aware of the positives of having the op, so I think you need to be honest with yourself about what would be the negatives (would you, for example, feel less of a woman - I know some people struggle with this) and work through them. And make sure that you take a long list of questions to the consultant!

xx

Interesting point about feeling 'less of a woman' - not sure about that. I think that was my SIL's problem.

In theory, I don't think I'd have a problem, but you never can tell how the old hormones will turn against you. I need to sit down and write a list of questions for the consultant. Funny old world, innit.

Hi Wicketkeeper.

Have you found "Hystersisters"? Women on the forums at that site are at every stage of pre- and post-op hysterectomy.
Best of luck with your decision making.

Esperance (love the name, btw) - I've just spent the last hour on the HysterSisters website. Very interesting and informative. Thanks!!!

Hystersisters is good, and I quite liked the hysterectomy association site too.

I had the op in Feb this year primarily for persistent cin 3 (3 lletz treatments and it get coming back!) but I also had multiple large fibroids and adenomyosis. I am older than you (46) but I really didn't want the hysterectomy. In the end I had no choice.

The operation itself is major and you will need help at home for a good while. It can many side effects including affecting your sexual response (this is common but not discussed much or at all by doctors). My stomach has gone down and I no longer flood each month but tbh I think I'm still recovering from the op all these months later.

I think the problem I have with the whole hysterectomy thing is the feeling that it's taking a sledgehammer to crack a nut - a major operation, the end of my fertility, possible loss of libido, possible weight gain. And all because I bleed heavily once a month (and at 50 that's unlikely to be going on for much more than 2 - 3 years anyway).

I now have a list of questions for the gynae when I see them, which has to be a good thing. I don't want to just be 'production-lined' into having it done, but I think I'm resigned to it so long as I can be sure it's the only/best solution.

I've also been reading about Uterine Fibroid Embolisation, which sounds like a much less radical option than a hysterectomy. Maybe I should stop googling and just wait to see the consultant.

Fibroids generally shrink following menopause and I agree that its a really big operation to solve this problem. IME the gynaes are very pro hysterectomy. When I asked about recovery/side effects the dr told that I would be out of hospital in two to three days and back at work in 6 weeks. Thats all that was said!!!

Thats not to say that I regret the operation, I don't, but I feel that I have lost this year to it and the repercussions continue.