Hysterectomy or Mirena...? Or deal with it.. (pregnancy and childbirth mentioned)

(reposting this here from the Introduce your self forum)

Hi there,

I have come here to get feedback from women whom have gone through the process of a hysterectomy - as I am seriously considering having it done. I will tell you my story...

I have always had heavy periods that used to last 7 days and knock me flat. I have a platelet condition that was diagnosed when I was 9 and going through a Renal Re-implantation due to Renal Reflux. I do not know the name of this platelet condition, but it affects my bleeding time. If I cut myself, I bleed for ages. If I take aspirin or ibuprofen or any type of anti-inflammatory - I bleed and bruise. It also causes me to bruise very easily.

I had my first child when I was 23. I developed pre-eclampsia and had to be induced. The induction didn't go to well and they had me pushing for hours until they realised my baby was not in the right position for vaginal delivery. So they ended up doing an emergency c-section.

After this, I became unwell and ended up developing a massive infection in my uterus due to left-over product and they did a DNC. This exploded into my blood stream and I was in ICU on life support. They were preparing my family for my death.

But I showed them, I recovered. Healed, moved on. Dealt with my womanly problems as I had no alternatives.

I then became pregnant again 3 years later. I went into natural labour with my son, but he ended up being breach, so I had another emergency c-section. The surgeon said that luckily for me my son was breach as I would have bleed to death having a vaginal delivery. He said my uterus was so severely scarred and damaged due to my first pregnancy that he did not know how my son was able to grow in there. Also my uterus was adhered to my bladder - so he had to cut carefully - but act quickly to get my son out.

Again, I moved on from that experience and endured my monthly cycle thereafter.

Within 6 months of having my son I did have a tubal ligation. I was afraid to get pregnant again and always knew I was going to have two.

This made my cycle much shorter, but did not reduce the heavy bleeding. For 2-3 days of my bleeding, I could not do anything.

Also as the years went on, I have started getting pre-menstrual symptons, before the bleeding, upwards of 2 weeks. Cramps, sore breasts, feeling fevered, migraines and grumpiness. My periods would always come on the 26th day. Last for 5 - and I would have between 7-10 days a cycle where I felt like a normal human being.

I went to my doctors a crying blabbering mess. My friends whom are a nurse and a doctor suggested I ask about a mirena. I am a bit iffy about IUD type devices as my mother had a copper coil and bleed for a couple of years on it, heavy bleeding until it was finally removed and she had to have a hysterectomy.

Also in my early twentys I tried the Depo provera injections which just made me bleed continuously.

Well my doctor said as a trial lets see how Primolut N works before we consider the Mirena.

I've taken the Primolut N continuously since August 31st. It worked great the first 6 weeks, but my body must really really want to have a period - and I have been spotting the last 3 weeks. Some days light and today quite heavy with abdominal pain which I have not had in 9 weeks. I am on 5mg twice daily. I know the daily dose of the Mirena is lower than this and more effective as it doses straight into the lining off the Uterus.

I am due to go see my doctor on Monday 31st of October. To discuss the Mirena, but in the back of my mind, I want my uterus gone!

I have no need for it anymore. The Mirena scares me due to the fact that my uterus was so severely scarred and damaged...what's to stay that this won't perforate my uterus more and cause more bleeding? I know having it inserted is very painful. I also know surgery is painful too if I go the hysterectomy option. But hey, I have had 3 abdominal surgeries over the course of my life, and healed fine from all 3.

I am 36, almost 37. My mother had a hysterectomy in her early 20's and it was the best thing that happened to her. She kept her ovaries. And has just finished Menopause the last couple of years, she is 56.

I've also spoken to a woman a couple of years older than me that had a hysterectomy and she also said it was the best thing that happened to her.

I am worried about early menopause, but was told with the Tubal Ligation, that that may cause early menopause also. So I feel as if I have already taken that risk of early menopause.

They say if you keep your ovaries, you "may" go into early menopause. I do not know what the stats are on the term "may".

Is choosing to want to have a hysterectomy a stupid decision? Do I give the Mirena a shot to work?

I am at a loss as to what to do. I want relief. And have more or less got that the last 9 weeks (minus the spotting) compared to the last 24 years I have menstruated. (apart from bring pregnant).

My husband does not want me going into early menopause and says I am too young for a hysterectomy. But this my body, and ultimately it should be up to me.

I know my situation is not as severe as other woman who have had to have hysterectomies (some not by choice) - but my cycle is affecting the quality of my life.

I eagerly look forward to hearing from you.

Angela aka Kiwipearls

Hi Kiwipearls, I chose to have a hysterectomy instead of a Mirena, only because of past history with an IUD in my younger days and I didn't want to go down that path ever again. I have heard of woman that swear by the Mirena and you have it in for up to five years, they say they stop bleeding straight away and no problems. (A choice I wasnt prepared to take ) I had my hysto in May, 2 weeks before I turned 50 and had my ovaries removed at the same time, going through surgical menopause, but all good, just get waves of hot flushes and they are mostly at night time. I had been having period problems for about 8 years and the last couple of years it got so bad that it affected my quality of life and was constantly on iron pills due to bleeding heavily for weeks, with a break of a week and then back to bleeding and flooding again. I didn't go anywhere incase of a flood, so really became pretty antisocial. Since having my hysto its been awesome, life slowly getting back to normal whatever that is, but no bleeding since op its great and I am loving life and spending time with my hubby and being social again.
It is purely a decision only you can make, but good luck and hope all goes well and you don't have to suffer too long. Take care and look forward to seeing what you decided to do.

I am in the same situation as you my friend, except that I had the Mirena tried, but failed.


I am completely and totally in your shoes...
Struggling, deciding....
Betsy

I would ask the dr if the risk of perforation is higher for you with all the scarring. I too go through bouts of whether a hyster is the best option. I have pretty much settled on doing the least invasive thing possible. That means I'm always asking questions. Right now I'm waiting to have a sonohistogram to see if they can tell how deep my fibroids are imbedded. All three are in the lining, but the depth will determine how successful D&C with ablation will be.

My hubby is the opposite of yours. He wants it out so he never has to worry about it again. He is so frightened that the fibroids could become cancerous (which is unlikely) or that I will be sick all the time like now. But it is my body and I will do what I think is the best.

I had the Mirena fitted after taking the Pill constantly had no effect whatsoever. Everyone told me the Mirena was wonderful and they never had a bad period again. And I think for many women that is the case...however, not for me. My problems did not alter in the slightest with the Mirena, I might as well of not had it fitted!

I had been on a fake menopause in between the pill and Mirena. (taking Zoladex implant, I do not know the US term for the drug only what we call it here in the UK. Along with that i was put on HRT)

The zoladex is the only treated which has worked. When I still had the Mirena they gave me a three month course of it on top, but as soon as I stopped taking the Zoladex the pain and problems were back.

I finally had the Mirena out during a LAP, for endo. That was over 2 years ago.

My periods returned worse than before and not for the first time I went and asked for a hysterectomy because it was affecting my quality of life so much and again I was refused because they said I was too young.

Since then I was put on further courses of Zoladex, I think I have had had five or six courses of 6, which is more than they usually give anyone, so my GP and the surgeon who I saw on monday told me.

In June this year they finally agreed that I would go on the waiting list for a hysterectomy, and I have just come off a further Zoladex treatment. Which gives me hot flushes at least a dozen times a day when I least want them, so I guess there will be not much change with that for some time, except perhaps more, I don't know.

It is hard to make the right choice for you, but I usually think, 'what is my gut feeling on this?

Like you I got to the point where I just wanted it out, and all being well I will have the op in a couple of weeks time.

Just had Mirena put in this week and am hoping I'm about done with the cramping, though it's not nearly as bad as it was the first day. (Have cervical stenosis, too, which made insertion and the endo biopsy sooooo not fun.) Now unless I do something to set off the cramps (bladder too full, need to pooh, lifting something too heavy, etc) it's more of a heavy feeling in my pelvis. Hard to explain. Mucous is thick, and still bleeding. Told DH that it looks like pink yogurt (he's working away from home right now and told me I ruined what he was taking for lunch tonight with my descriptions....sorry). I'm hoping I'll settle into it and that the flooding, heavy bleeding & cramping will get better (submucosal fibroid issue). Still waiting on the results of the last round of tests and to hear if the crazy cystic ovaries really mean PCOS for me...
I guess the good news is if it doesn't work (as pills never worked for me) that it can be taken out, but I'm not looking forward to the whole taking out thingy. That's an up side, mirena can be undone, unlike the surgery. I guess since it says that mirena should not be used if the cavity of the uterus is severly altered, I'd have that talk with the Dr. to see if it really is a good idea with all of your scar tissue concerns.
All you can do is ask questions, weigh the pros and cons and run with the best decision you can make at that time. At least there are more options than just dealing with it, things really are getting better out there.
Best of luck with which ever decision you make.

I have had a Mirena in for past 6 years but have only just realized that it has been linked to so many side effects. I have been getting migraines since it was put in but have only just made the connection.

At first I thought it was brilliant and then the bleeding started again. As well as this over time I have been cramping, pain in hips, pain in backside, very sore nipples, and just a general edgy feeling which is hard to explain. I constantly feel like I am carrying a brick in my uterus which is enlarged. (not because of mirena. It always was)

My gyno said if we take it out then the excessive bleeding will be back as my fibroids have not shrunk at all. So I have opted to have a hysterectomy.

I think you need to do what you are comfortable with. I mean it took me 6 years to come to this decision. I am now more than comfortable with it and look forward to getting some quality of life.

Good luck

Thank-you everyone for your replies.

Just been to my doctors. She told me the Primulot N is good for skipping one period, but not all of them. She said my body really wants to get rid of my uterus lining, which is why I have been spotting the last few weeks.

So we are going to give myself a monthly and take it from day 5 after my first day of heavy bleeding and then stop on day 26. She really wants to see how light my periods are on the pills and is happy all the other symptoms have disappeared (ie sore breasts, cramps etc)

She was quite hesitant about going through with the Merina. As she has had a few patients where it was not effective. And she said because of the evasiveness of it.

She suggested a Endometrial Ablation where they burn off the lining of the uterus so that you do not get periods at all.

After doing some reading, that depends I guess if they do the job properly.

So do I continue with the hassle of taking pills every single day or do the Endometiral Ablation, or push for a hysterectomy. Which she seemed ok about, but said specialists don't like doing them and there are risks of them hitting a artery to the ovaries, that could prompt early menopause.

So it all sounds scary. All I know is my uterus is not needed, it has done it's job, it ruins my quality of life. And I really do not need it.