Help - Heavy bleeding, fibroids and what to do about it

Submitted by pollyanna_inuk on March 9, 2013 - 5:05am
Body: 

Hi,

I haven't been on the site for a long time. I've been living with a rectocele for about 3 years now and do my whole woman exercises every day - I love them! I had to adapt a few and miss little bits out because of lower back problems but do pretty much all of it. I'm fine with the rectocele - I've learnt to live with it and manage things pretty well despite having a lot of complicated dietary problems that mean I struggle at times with lower bowel inflammation, tears and haemorrhoids.

For the last year and a half my periods have got heavier which is pretty normal as I have just turned 50. It was found just before Christmas that I was very anaemic so on iron medication. I was referred to a gynecologist and had a scan which found several fibroids, one of which is the size of a tangerine. The last month I bled and intermittently lost big clots for 3 weeks and by last weekend the bleeding wouldn't stop, even with Tranexamic acid tablets so I was put on Norethisterone tablets (progesterone) 5mg 3 times a day. This stopped the bleeding for a couple of days but it has started again. Last night I could feel that inside me feels different. I'm having trouble getting a tampon in and my uterus feels lower. Could it be prolapsing and if so what should I expect to happen? I'm booked next week to have a Mirena coil fitted to try to stop the bleeding but I don't know if they will be able to fit it with my fibroids and if the uterus is prolapsing whether that will be a factor.

I'm so worried that surgery will be my only option if the Mirena isn't possible for the bleeding. I will go for the least invasive surgical options first. If I was just dealing with uterine prolapse it would be simpler but it is complicated by the heavy bleeding. Has anyone else had this and if anyone has got any advice I'd be very grateful. I feel determined to try and avoid surgery but don't know what to do next. Its very depressing and scary.

Pollyanna

Forum:

Surviving60

March 9, 2013 - 6:02am

Hi Pollyanna. Sorry to hear about what you're going through. You are no doubt in perimenopause which can do strange things to your period even without the added complication of the fibroids. They do shrink at menopause but the question is, how to manage until that happens. Is there a doctor available to you who will perform myomectomy? You could be evaluated to see if you are a candidate for that. Personally I'd still have a fear that when the surgeon got in there, he or she might just decide to take the uterus....."oh, she doesn't need this old thing anymore!!" Yikes. Removing the fibroids is more work..........

You've got a lot going on there, more than enough to make you feel like your uterus is under siege. Is it prolapsing? Who knows? The organs are constantly on the move and not even the docs can pinpoint this. If you've been practicing WW posture for awhile (not just workouts but actually living in the posture at all times) then you are doing your best. Long walks in very mindful posture might help you feel better in body and mind.

I'm unclear on what type of surgery you are referring to, when you say that you fear it will be your only option. - Surviving

pollyanna_inuk

March 9, 2013 - 6:37am

There are a few options I was told about by the gynaecologist and the rest I have found out myself on the internet. If the mirena coil doesn't work I could ask about hormone injections (GnRHas) used to shrink fibroids. Some of the treatments that have been mentioned to me are termed non-surgical such as endometrial ablation. I don't like the sound of this and I'm not sure if it is an option because of the position of one of the fibroids. It is also fairly new so there is not much information about any long term after effects. Another procedure I have researched is called uterine artery embolization (UAE) used to shrink the fibroid by chemical done under local anaesthetic. There are also two new treatments MRI-guided percutaneous laser ablation and MRI-guided transcutaneous focused ultrasound. Needles are put in the fibroid and laser or ultrasound energy are used to destroy the fibroid. I don't even know if these are options for me.

Surgical treatments I know about are myomectomy - although this is not always possible and of course hysterectomy. I am worried that if I opted for a myomectomy they could just decide to give me a hysterectomy while I am under and they may also decide to do something with my rectocele which I don't want either.

I have probably become a bit complacent about living in the posture all the time. It is easy to let things go when life is so busy and also easy to become a bit complacent when things had been quite stable for a while. I know I don't look after myself as well as I should. I find making time for long walks difficult, especially in the winter when it gets dark so early. Even making time for regular short walks is a challenge

I'm frustrated at the timing of this as I probably have at least 2 years to go, maybe more, until I'm through with the menopause as I haven't really had many menopausal symptoms yet. I was prepared to live with heavier periods until through the menopause but I can't manage with them the way they have become in the last month.

I just hope that some of the non-surgical options are possible/work for me. If the uterus is prolapsing does anyone know if that could make the bleeding worse? I'm worried about an emergency situation arising when I feel sure decisions would be taken out of my hands.

Pollyanna

Surviving60

March 9, 2013 - 1:40pm

Hmmmmmm….I’m a little confused, Polly. You do the WW exercises every day, but you don’t do the posture the rest of the time? Are you in posture while exercising? The posture is the whole point, and if you are only dabbling, then you are missing an opportunity here. Prolapse-wise, this newest development should be treated by you as a wakeup call. Once the posture is second nature, believe me, it’s just how you go about your day. You don’t have to think about it and you’re getting your WW workout all the time.

I have read a little about endometrial ablation and UAE in Nora Coffey’s “The H Word”. What she has to say would scare anyone off. You might want to consult with the HERS Foundation, or how about setting up a phone consult with Christine? She can give you some perspective as she went through some rather intense menopausal experiences.

I totally see that you are in a bad way, and hoping to avoid a medical emergency that might lead to someone doing who-knows-what to your female parts. And you are so correct. You can write out your wishes and sign them in blood, but the surgeon still has all the power.

Best of luck to you. Talk to someone. - Surviving

pollyanna_inuk

March 11, 2013 - 2:06pm

The bleeding has slowed right down at the moment, and although that is because I'm taking a hormone tablet which I'd rather not do, at least I don't feel so rushed into making a decision. Also when I had a feel inside me everything feels the same as it did before - I think I was just panicked by the bleeding. Thanks for the advice about the HERS website. I've found out some useful information to follow up from the site and links to other sites. Last year I had a borderline Thyroid result and want to get that checked out again as apparently hypothyroidism can causes heavy bleeding, so it may not be the fibroids at all or may not be only them causing the bleeding. What I read has convinced me even more strongly against endometrial ablation and also UEA. I am going to book a telephone consultation with someone from HERS when I have seen my G.P. later this week and meanwhile I'm going to postpone my mirena fitting until I have more information. From what I have read I'm concerned that the progesterone in the mirena could cause the fibroids to grow, so even if they are not the cause of the problem now they could get bigger and become a problem. If the thyroid is not the problem then I will have to consider the options again.

My posture when walking, sitting and standing is good - I have a nice spine curve and rounded belly and I seem to have grown a couple of centimetres which I'm sure is just standing tall rather than slouching. I always use a wedge and lumbar roll in the car and have wedges on my work and dining chair. What I have got sloppy about is bending and reaching when I'm in a hurry - especially at work when doing a lot of typing on the computer. I used to carefully get up and crouch down to pick up files off the floor and now I sometimes reach down without getting up. I also don't get up often enough to have a break from sitting when I am at the computer for long periods of time. I just need to put myself first and slow down.

Apart from dealing with another haemorrhoid, I'm feeling a bit more in control at the moment and able to inform myself is empowering and will help me make a better decision I hope.

Pollyanna

Surviving60

March 11, 2013 - 6:23pm

Hi polly - I'm glad you are feeling better and that things have calmed down a bit. I think you're right about the hormone pill. In the short term if it's helping to control the bleeding, then it buys you more time to think and plan without being in crisis mode. You're doing well with posture too. Hoping for the best for you - keep us up to date. - Surviving

louiseds

March 25, 2013 - 12:47am

Hi Polly

All sorts of things go crazy during the menopause continuum. I would rather not think of one thing causing another, eg hypothyroid and heavy bleeding. I prefer to think of them all as things that go together when your system doesn't know whether it is reproductive still, or not. Many of these things will settle down. They are all inflammatory in origin. I suggest that you just try and reduce inflammatory triggers in your life and in your diet, and get some more anti-inflammatory foods into your diet.

Having said that, if there are symptoms or conditions that are going to seriously derail your health, attend to them, by all means, but remember there are no silver bullets. It is all about doing what you can in all areas.

Louise

pollyanna_inuk

March 27, 2013 - 5:30pm

Thanks Louise, I'm sure you're right - I guess I was trying to make sure the Dr wasn't assuming it was down to the fibroids when perhaps something else was going on. My thyroid function came back ok anyway. I can feel my whole system is all over the place in the last few months. I've had the mirena coil fitted now and am hoping it will help while my body works its way through the menopause. I don't like mucking around with my hormones artificially but after researching all the possibilities I didn't feel I had much option. I am at least starting to have some other symptoms of menopause in the last couple of weeks such as hot flushes. I can't wait till it's all over but I was told by the gynaecologist that because my periods started young I'd go through the menopause later - that seems unfair!
I do have a lot of inflammatory problems that I have been tackling over the last three years that affect my bowel. I'm on an elimination diet at the moment under a dietician which has helped. I am intolerant to a lot of food and drinks and cutting things out has definitely made a difference. I need to try to reduce my stress levels but I find that hardest of all as it is a big part of my nature and on top of that I have a rewarding but stressful job and a son with a disability and his future is a big worry.
At least at the moment I'm not bleeding too heavily and my iron levels are back in the normal range : )

pollyanna_inuk

April 10, 2013 - 4:08pm

Hi,

I had a Mirena coil put in 3 weeks ago to try to stop the heavy bleeding I have been having for the last year and a half. The bleeding was just about manageable until Feb/March this year. It has probably got worse due to several fibroids I have. I was prescribed Norethesterone (progesterone) tablets which helped but I can't stay on them for more than a few weeks. I have been slowly reducing them over the last 3 weeks since the coil was fitted as advised and took the last one yesterday. Today the heavy bleeding and losing big clots has started again. I don't know what to do next. I don't want to have Endometrial Ablation although it has been offered. I'm going to ask about a myomectomy as mentioned by Surviving but don't really want to have surgery at all. Has anyone else had this problem and tried any other treatments? Has anyone had a myomectomy?

Pollyanna : (

Surviving60

April 12, 2013 - 5:04am

Polly, I can't recall anyone here on the forums who has described any personal experience with a myomectomy. Not a lot of doctors do them, as it is SO much easier just to take out that uterus and be done with it.

You have some serious stuff going on, and you need more help than what we can offer here. I still say you might want to contact the HERS Foundation first, for some real discussion of your options and some help in dealing with the doctors. They might even be able to help you find the right one. Good luck to you. - Surviving

pollyanna_inuk

April 12, 2013 - 3:34pm

Thanks Surviving,

I know this forum isn't about the problems I'm having but I guess because so many women use the site people have sometimes experienced other issues too. Thank goodness the rectocele is behaving itself at the moment and dietary problems are under control. Since going back on the hormone tablet 2 days ago the bleeding has slowed again so I have a bit more time to inform myself. I've got an appointment with the Dr who put the coil in and the gynaecologist I saw in Jan. I will contact HERS again and also the fibroid trust. I have some good info sheets from their site describing all the options. One reason I don't think myomectomy was suggested as an option to me in Jan is that I have found out that they can't do the operation in my local hospital - I'd have to go to one in the next county. That does make me cross because you should still be told about all the options not just the ones they can offer.