Dealing with the fibroids month to month

Women's health
1

I'm glad to have found a forum where people are discussing this.  I have found some medical-oriented sites and they all seem to say the same thing, which doesn't really help in the day-to-day living with this.

After some very heavy periods, I went to my GP who said it was just age-related.  Since it persisted, I went to a GYN who said she could feel the fibroids on exam and wondered why I'd never been told about them before.  An ultrasound confirmed one that is 6.7cm.  

I was 43 at the time (now 44) and my mother said she was in full menopause by 47, so I was hoping to just wait it out.  I read about a study with green tea extract, so I started taking that but it didn't seem to have an effect.  In fact, when I stopped taking it, the bleeding seemed to lessen.  I keep notes each month and keep trying to find a pattern, but it seems to change.  For instance, this month, there seemed to be fewer beeding days, but then after a few days of just brown discharge, on days 14-18 I've been having small washes of blood that fill pantiliners.  Today there were a few dark small clots.  I suspect it's because the fibroid has altered the flow and the blood can't get out.  

I'm thinking I may just give in and have the surgery, which terrifies me.  When I just go in for appointments, my blood pressure spikes and I'm sure people in the next room can hear my heart pounding.  I'm not just afraid of the surgery, but the cost (I'm in the US) and the time lost from work.  

Anyway, I'm glad to have some people to commiserate with.  

2

Hi Maestra.

I'm currently waiting for a hysterectomy due to a large fibroid which until a year ago was not an issue. I had excessive bleeding which caused anemia to the point where the doctors were talking blood transfusion. I did end up needing two due to a large bleed which put me in the hospital for nearly two weeks. I fluctuate between impatience and fear whilst waiting for my date. My fibroid has changed my life. I currently have a catheter fitted as it keeps pressing on my bladder causing retention and I am taking a cocktail of medicines which has put me in a chemical induced menopause until my op. I too worry about the impact of my surgery on my family and work as I have to drive to get to work and here in the UK most insurance companies void your insurance for 12 weeks after the op. Luckily we have the NHS but its still a worry regarding work. I think fear before surgery is normal and to be honest I keep myself awake with worry some nights however I know I can't continue the way I am. Do you have a support network of people you can talk to? Or is there any yoga groups you can join to practice breathing and relaxation techniques? I am joining one to help with my anxiety as I think that will have a negative impact on my overall health. Have you been back to your GYU to discuss your options ?

3

Dear Maestra,

yes, you are right, there seems to be no pattern in the fibroid experience - except a general growth.

I think the blood clots are not due to the blood not being able to get out - in my experience they are just a sign that, since there is a lot of blood, some of it just clots before it gets out. 

I had (or thought I had) 6 or 7 big fibroids and tried all sorts of approaches for one and a half years, but the fibroids just steadily grew. I am 36, so menopause (probably) isn't just around the corner... In the end, I chose to do the surgery (myomectomy, not hysterectomy) - economically an easy option for me, I am from Denmark, and the operation was free. Also, I had 3 weeks of sick leave paid by the state.

But the greatest obstacle is the fear, and I think that is also a natural and healthy attitude... The operation is huge and can be sort of violent (mine took 5 hours and I lost half of my blood - because I insisted not to have my uterus taken out, but for the surgeon to remove the fibroids while taking extra good care not to harm the uterus). I have been paralyzed by fear and have cancelled this operation 3 times before deciding really to do it. 

In the end, the surgeon removed 14 (!). And I feel grateful for this possibility of a new beginning.

I am now exactly 3 weeks after the operation and on the way to Norway to work. This has surprised me - how fierce the operation was, and how the body repairs itself afterwards. Of course, I am not 100% operative, but my colleagues are ok with that. 

Before the operation, I took Esmya for 3 months - a hormonal medicine which shrinks (some) fibroids. For me, it worked quite well, but it is extremely expensive and doesn't work for all women. I don't know about the price of Esmya vs. surgery in the States, but it might be an option to try to keep the fibroid "calm" for some time with Esmya....  It has some annoying side effects like tiredness, headaches, and so on (and I am generally very suspicious of putting hormones into my body), but it may in some cases be a lesser evil, a way to "buy time" - in this case, literally, because it is expensive. 

I guess this forum is exactly what you wrote: a place to commiserate and share - I am not sure this was helpful, and I am not sure that the solutions for one woman can work for another --- but the again, I found it useful to read all the stories in here... 

Best of luck!

Anna

4

Hi Maestra, have you thought about having UFE? I had very similar symptoms to yours and had multiple fibroids with the largest being 7cm. Two weeks ago I had UFE. It's too early to say if it's been successful but as it's a procedure that is done under local anaesthetic it is much less daunting than full surgery and the recovery time is much shorter. I'm not back at work yet but some women go back 1 week after UFE. 

5

Hello, it would be useful for you to certainly have a look at the other options available, Esmya (although I know it is expensive in the US), UFE, myomectomy etc. I am 58 and still waiting for menopause to shrink my fibroids so don't hold out your hopes there. I also take DIM supplements at a high dose which, although not shrinking the fibroids, seems to have cut the bleeding dramatically. Still waiting to judge the long term effects, as I've only been taking it for 3 months.

6

I'm not sure if my insurance covers it. It may be more expensive than surgery.  My doctor outlined the options as birth control, surgery to remove the fibroid or hysterectomy.   Please post to the board how you progress.  I'd like to know the experiences of others so I can further investigate options.

7

Thank you to all of you.  I'm having a particularly bad month this time.  I'm wondering if part of my problem might be perimenopause.  My doctor brushed off the suggestion, saying that since my periods are still somewhat regular, I'm not there yet.  This month, however, I had the regular mid-cycle pressure and spotting that I've come to associate with ovulation on day 13.  Then I had small "gushes" that were enough to fill a small pantiliner once each day for the next 5 days. Some of it was brown, so I know that's old blood and I don't worry about that.  Today would be day 20 and I just had a small flood that overflowed a pantiliner and got all over my panties.  Fortunately, I was not far from home, so it wasn't to an embarrasing level.  If this is the start of my period, it would mean I'm having a 19 day cycle.  My breasts have been sore for a week, so all of this has seemed very PMS-like, but also very, very early.  I know wild fluctuations in period cycles are an indicator of peri.  I feel like I meet many of the perimenopause symptoms I look up online.  It's just hard to guess since the fibroid also causes strangeness.

On another note - I'm very curious about how other medical systems work. It seems most of you are in the UK or other parts of Europe.  Do your doctors do biopsies as part of the workup to diagnose fibroids?  Or is that just a US thing. They always want to "rule-out" other issues.  

8

I'm sorry you're going through so much!  It's bad enough having the stress of a medical situation, but having to worry about money makes it so much worse.

I haven't been back to the doctor since May.  Things seemed to have gotten better until the last few weeks. 

9

Thank you for sharing your story.  I hope your problems are solved! 

10

Dear Maestra, in my experience, if there are fibroids and they "behave" as such, in Denmark they do not do a biopsy. They "trust" that they are just fibroids. After any surgery, however, they take samples of every part of them to be totally sure. It WAS somehow nice to receive the letter saying: All was benign.

As my fibroids grew, my cycle also got shorter and shorter. And each period longer. It is really hard to live with... Once I woke up (as a guest in someone else's house!) in the middle of the night with everything covered in blood. But this was just after the 3 months of Esmya had finished and so could be caused by the hormonal confusion in the aftermath...

Those periods were perhaps the main reason I accepted the surgery..