Hysterectomy wanted, am I crazy? (children mentioned)

First off, what an amazing site...I have learned more here than I have in the past several years!

My story is very similar to many of you...Started my period when I was 9 and bled so heavily that my mom would get me adult diapers to wear to school. I was hospitalized when I was 12, 14, 17, 20, 25, 27, 30, and 32 for anemia related issues. I was on IV iron from the time I was 28 until I was 32 (1 liter per week). During this time I had four healthy girls, thank God, but after my 4th when I was 30 (followed immediately by a tubal ligation), my health took a turn for the worse. I became so anemic, I started having heart problems and loosing consciousness, so after my iron was stabilized, I was put on BC pills. There was no change; I was still bleeding heavily for 10-12 days a month and spotting-moderate for another 8-10. Life was not good! I got to the point where I couldn't leave the house and I was stuck in one seat with 3 towels over a trash bag to catch the accidents. Ironically, I do not have endometriosis, fibroid, polyps, or any other disease that would cause this.

In Feb 2011, my GYN recommended an endometrial ablation to stop my period. I was told that 95% had no bleeding at all and the other 5% spotted for a day or two each month. I don't particularly blame him, but I do believe he was seriously misinformed! After the NovaSure, I went two weeks with nothing...I was ecstatic! Then, two days after my check-up, mother nature threw a tantrum. I had two months of non stop bleeding and was back in the hospital for another transfusion (4 pints of whole blood and 4 of plasma). My doc seemed to think that after three more months my periods would be gone and I would live the benefit. Silly doctor!

The Army reassigned my hubby, and in August (4 mo after ablation) we moved from OK to WA. During that time, I had the worst cramps I have ever had with a period. Same thing in September. I thought it was because of the stress of the move and the fact that hubby was about to go to Korea for a year. Silly me!

Between October 2011 and March 2011, I would have horrible cramping 5-7 days a month. I was still bleeding heavily for 10 days a month and spotting another 5. I figured I would just live with it, after all my only other option was a hysterectomy and we are now 2,000 miles away from our closest relative or friend.

Now we are at a point that I can't wait any more! In April, the cramps were so bad that I was in bed, curled around a heating pad and popping Darvocet like candy for 16 days, and this month, in the middle of WinCo, I hit the floor with the worst pain I have ever experienced in my life. I couldn't talk, started hyperventilating and vomited...How embarrassing! My four year old thought I was dying, a wonderful couple took us home after I recovered enough, and as soon as my 15 year old got home, I got a ride to the ER. I seriously thought I was in the worst labor ever...I had my second naturally and she turned out to be breach, this pain made that seem like a walk in the park. At the ER I was told that I probably had Post Ligation Post Ablation Syndrome, the only cure is a hysterectomy.

I am meeting with my doctor on Monday and I feel like pushing him to set a date right then for the hysterectomy. I just can't do this anymore! I am no good for my girls, and I am worrying my poor hubby to death while he is halfway across the world. I just want everything out! I want to be done with my manic uterus! I see that most of the lovely ladies here are somewhat torn over the loss, so I am wondering if I am crazy. Or if what I am feeling is a knee-jerk reaction to the pain and I'll ultimately regret the decision. As I am typing this, contraction like pains are wracking my tummy, shooting down my leg ad across my back....I am sooooo done with this!

Sorry for the novel length rant...I feels so good to talk about it. I don't think I ever have just listed everything before! I am worried about how long the recovery is, but I think with Emergency leave from the hubby and then sending the kids to grandma once they are out of school should make it easier to recover...I hope. I just want to be a whole person, even if I don't have all my parts.

Keepon.....
You are definitly not crazy. Your symptoms are not normal. You tried what you could to make this stop. I'm personally confused why a Dr hasn't at least discussed a hysterectomy with you.
I'm sorry to say that a hysterectomy may be your only option, at this rate it could come as an emergency. I'm not trying to give you medical advice, I am not a professional. If you can at least talk to a Dr you comfortable with asap so you can make plans. School will be out soon, so if your parents can help out and give you a little time for your hubby to make preperations to be home.
I have not had my hysterectomy yet, but I'm almost to a point of looking foward to it. You have struggled greatly, while there are risks to a hysterectomy, there are risks to suffering as well.
You have to make the right decision for you, but from what you say, I would be demanding they take it out!!! I am still coping with the idea of this, my surgery won't be until Sept, so I have plenty of time for ups and downs, but again, from your desc. I wouldn't be questioning it all.
You have found a wonderful community, with lots of experience, and compassion.
(((((((HUGS))))))) to you and hoping you can find the right resolution for you.

After reading your story I can honestly say if I were you I'd BEG for a hysterectomy and keep going to different doctors until one listens to you.I'm not a doctor, but nothing could be worse than the years of suffering you have endured. Your children need a healthy Mom. You all deserve this.Hysterectomy is not without complications, but as long as you can recover properly and have someone help you post op for a few weeks with the kids you should be far better off afterwards. If you doctor can let you keep your ovaries that is a bonus. Even if you have a long hard recovery and some complications you'll eventually get your life back and be healthy enough to have a life without pain and blood free !! Maybe print off that story you wrote above and let your doctor read it. maybe he will agree with you if he sees it all in black and white.

Thank you! I feel much better now!

I was offered a hysterectomy in 2010, but we chose the ablation instead...we were unaware then of the possibility of long term problems. We were going for the least invasive and our doc made it sound like the cure all. Before then, I discussed it with a few doctors and since I was under 30 without endometriosis, fibroids, polyps etc, it wasn't an option.

We also have a hard time getting doctors to believe that my cycles were that bad since I don't have an underlying condition that they can see. Only anemia.

I think I am prepared for my appointment...I mark a calendar with days I cramp, flow, and ability to do normal stuff. I am taking the last 15 months (since ablation), a list with all of my symptoms, and a copy of what I put down here (thanks CathB). That with my medical records should be enough to get the ball rolling.

My husband has cleared with his chain of command in Korea and will be on the next plane as soon as we have a surgery date, which takes a huge load off. I also sent him the link to Mister Hyster Sister and he is determined to be the most informed partner ever...even if he doesn't get to go to doctors apptointments with me.

Right now, it is a waiting game...that is hard! Not knowing if anyone will listen, let alone act, is a bit stressing. But I will keep going on!

Believing...
Thankfully, with a support system in place, you should be one step ahead. If your Dr. won't listen to you, then they have no business in the business of women. You are suffering greatly and so is your family.
You have all the proper information...and great support
We are here for you....and so is your hubby...kuddos to him

Please keep us posted

((((((HUGS))))))

Keep us posted after your appointment!!

Finally got to my GP yesterday...I was supposed to go Monday, but the Dr. had to leave early.

Anyway, he thinks the swelling in my uterus is worse and the left ovary and fallopian tube are much bigger and "rock hard". Needless to say, he is putting through an urgent referral to a GYN and I will hopefully be seen early next week. He also agreed with the Post ablation syndrome and is concerned with the amount of swelling since 5/15.

I will keep posting, and hopefully have a date soon!

Good God darling... You can keep writing all you want. I feel so bad that you have struggled all this time. That is a crime. Don't you worry about getting a hysterectomy you will feel so much relief. I am only 6 days post . My situation was not near as severe as yours. But mercy me, you need relief. Thinking of .

You sound like an extremely strong woman to have struggled through this for so many years and on top of all that raising kids and a DH in the military. What a weight to carry for so long! You will more than likely feel like a whole new woman after a hysterectomy. I haven't had mine yet as you can see but looking forward to living pain free. My mother had a hysterectomy for severe bleeding, cramping and endo. She passed out countless times, suffered migraines, went through the humility of having to wear adult diapers at a very young age, etc. She always says how life improved immediately after and wished she would of fought harder for a hyster long before.
I will be praying for you and your family.

My doctor suspected adenmyosis due to my symptoms, but said we could try ablation before resorting to a hysterectomy. I had read too many stories about failed ablations that sound like yours, and the women ended up begging for hysterectomies, and almost all of them ended up having adenmyosis. My relief was immediate after my hysterectomy. 48 after my surgery I was already feeling better and in less pain than I was just before surgery.

Now 4 weeks post surgery, I told my husband this is the longest I've gone without cramps since I was 12. What a long time to suffer.

Good luck to you.