Thursday, April 07, 2011

reaching out

last year i had more than my share of female surgery. i was hoping i was done. then the last few months i have been suffering with unmanageable cycles. heavy bleeding, clotting, and pain that takes my breath away. i really try not to be a whiner, but this pain had me bent over in the fetal position for 2 days each month. the bleeding is so bad now i have to stay close to home. more than an hour and i am risking major issues/embarrassment. so i went back to my surgeon for tests. i was thinking some form of endometriosis. he didn't disagree, though felt it was something a little more complicated. after tests and ultrasound come to discover i have once again fallen in the "news of the weird" category and have a vein that is actually prolapsed into my uterus and is rupturing each month... so strange in fact my doc had not seen this before and was quite fascinated by it all. "yay me" {insert sarcastic tone} anyway the long and short of it is i am staring down a hysterectomy and quite frankly waffling each day. i look up side effects and then immediately wish i hadn't. so i am reaching out here, in my safe place, to ask those of you my readers and fellow women, have any of you had one? anything i really should know now, not later. after my big surgery last year i really wished i had known more. not that it would have changed my decision, i really had no other option, but maybe i would have been better prepared for the hardships that came after. it was not easy at all. it was a really hard 6 months of recovery. still not 100% and never will be. so you see my hesitation. any thoughts, recommendations? please i could use real knowledge here. one plus, my ovaries are functioning fine and can be left untouched to continue to produce hormones. what i would have removed is my uterus...
i would really appreciate your thoughts.

23 comments:

Maegan Beishline said...

I'm so sorry, Kristin. I have nothing to offer you but my prayers...which I've been sending for you and will continue to do so. I hope you get some answers and some support for what you're going through from women who have been there. You are such a very brave and wonderful woman!

Meg said...

I had a hysterectomy three years ago, due to uterine tumors that were causing "flooding", the embarrassing bleeding you refer to. And my period was at least 3 weeks out of each month. Anemia much?

I have to say the hysterectomy was by far the best thing I have ever done for myself. The recovery time is relatively short and then you are done. DONE. No more bleeding, no more pain. I too kept my ovaries, so I don't need any hormone treatments until I go through menopause.

Any surgery is scary, but truly, this has felt like a miracle in my life. Please feel free to email me if you need more details. Either way you decide, I wish you peace and freedom from pain.

Stephanie said...

I'm so sorry to hear this. I don't have any knowledge to offer in this area but my thoughts and prayers are with you and your family. You are loved.

Anonymous said...

I was 43 when I had uncontrollable bleeding myself that lasted 4 months. The doctor tried a D&C (Dusting & Cleaning) but to no avail. Still I continued to bleed . . . There weren't a lot of options for me and I knew the discussion of a hysterectomy was coming up next. He didn't know what option was left for me so I decided on a vaginal hysterectomy. My surgery was 20 years ago. I was very calm & not worried about this surgery even though my husband, daughter & parents were. They also took my cervix. I was put on HRT but after 7 years I took myself off of this. I still have hot flashes & night sweats occasionally but I just read that women that have these symtoms are less likely to get breast cancer - go me! I don't know you're previous surgery last year but I do know I came through this surgery myself just fine. Being a mother of one though I did miss my uterus a good long while. I'm not sure why? I hope this post helps you. BTW I love your blog & read it regularly. My family & I are hoping to relocate to Maine soon. You're in my prayers!

Corinne said...

I have not had this surgery, but I have friends who have, and I've heard that it's the best surgery on the block! I'm sorry for your pain and suffering - I hope you find some peace about your decision.

betsy said...

I'm so sorry, Kristin. As a long time endo sufferer, I completely empathize. I have two friends who have had hysterectomies in the last year -- both were anemic from heavy bleeding, both due to fibroids. Both had fairly straight-forward procedures -- one vaginally (the cervix also went with hers) and one was an abdominal incision, straight-forward recoveries, and both are thrilled with how they feel now. It was a positive experience for both after years of feeling like crap.

I know you had a dreadful time last year with your surgery and complications so I completely understand your concerns and worries. Sending lots of healing and positive thoughts your way...xo

Pumpkinmama said...

I have no surgery stories or opinions, just want to wish you clarity, strength and healing, whatever path you choose.

Vanessa said...

I don't have any advice, but just wanted to send hugs..so so many hugs. <3

Marina said...

Kristin, I am so sorry. I have no experience on hysterectomy, but I would like you to know that you are in my thoughts and I wish you with all my heart that you can find information and support on this so as to be able to take a decision of which you are confident and that you can live soon more serene and peaceful times. Keep trusting in you and in your intuition. a big hug

lola said...

all the best in your journey. i too have had serious health issues and surgeries in the past year, although different from yours.
my only advice; trust your body. trust yourself. you're photography inspires me.

Cynthia said...

oh kristin! I can't offer any advice but I am thinking of you. I am so sorry that you have to go through this.. and again!!

I'm here if you need me!

Shalet said...

No advice but thinking of you. XO.

Life in Eden said...

no experience, but hoping you get lots of positive stories. i wish it were different for you. hugs!

Anonymous said...

Hi Kristin,
I'm so sorry that you're going through all of this. I too had endo & had a couple of surgeries before having a complete hysterectomy at 41. Looking back, I wish I had done it the first time around! I'm glad you have a doctor that is looking out for you & willing to listen to how you feel about it all. That can make this big decision easier. If I had that it would've alleviated 10 years of different treatments & drugs that made things worse than just having the hyst. in the first place. Since I had my ovaries taken, I was put on hrt. I only stayed on it for 2 years tho.

I also wanted to say that I just love your blog & photography. I'm in the SS flickr pool too- aka kat3no3l.

jessy said...

During my 3rd pregnancy (2006, I was 28) I had Placenta Percreta as well as a varicose vein on my cervix. For my safety they had to deliver (csection) our baby early and do a Hysterectomy. They took my uterus and cervix, but left the ovaries. I am going to be totally honest here. The surgery was the worst pain I have ever felt and can ever imagine having. I'm sorry. I don't mean to scare you, but I wish I would have known before hand.
Maybe my intense pain was because I had just delivered a child too? They had to do a vertical incision that went from my pubic bone to above my belly button. Also, my daughter was transported to a different hospital before I had a chance to see her so I checked myself out 2 days post-op to go see my baby! Also, 3 weeks post-op my husband left for a deployment so I was home alone with three kids and no help. I was obviously doing too much! The moral of the story? If you go for it, which it really sounds like you should, I HIGHLY recommend laying low post-op as long as possible. Take advantage of every ounce of help and give yourself permission to let go of all the things you feel like you "should" be doing around the house/for the family. Like I said, I still have my ovaries so I don't need hormones. But it has been tough trying to figure out where I am in any sort of hormonal cycle. Obviously, before I could tell because of my period. But now if I am on an emotional roller coaster I have no idea if it's PMS or just me being in a bad mood. I really think my PMS has gotten worse.
I think the biggest, unspoken hurdle for me was the "loss" of my uterus. Our baby making years were very defining moments in our life (several miscarriages, two preemies) and to lose my uterus just brought all those emotions/memories back. I honestly went through a grief process after my Hysterectomy. :(
Anyway, I will be thinking of you. It is not an easy decision.

Anonymous said...

I, too, had issues and even needed a blood transfusion. Why suffer every month and live in pain? Yes, it seems overwhelming and recovery from any surgery is not a picnic, but in the end, you will be healthier and happier! My prayers are with you, but its a journey many women make and survive. All the best. - Sue

alison said...

Nothing I know anything about, but wanted to extend support and positive energy. You are indeed a strong and courageous woman, and I know you will flourish through whatever trials you come up against.

kristin said...

thanks everyone.
as of this moment my surgery is scheduled for monday morning....

Papillon Sky Photography said...

Holy crap, Kristin! I haven't read your blog in ages and just came across this news! My grandma and aunt both had hysterectomies. I am so sorry you are scheduled for one. But I don't know of any alternatives offhand. I will be thinking of you and may try to get off a little care package to you!
Big hugs to you!!
xoxo!
Amy

Anonymous said...

There is a health advisor/doctor/author called Dr. Mao who calls one of a woman's stages of life "the Second Spring". Can you reframe this next journey in this light? It sounds so promising to have a second spring. Friends who have gone through menopause (naturally or surgically) have said that it has brought new freedom and creativity into their life, truly a second spring.
This is my prayer for you.
MJ

Kate S. said...

As with many others, not much advise to share, but sending healing vibes and love your way.

Jill said...

I can only imagine how the availability of information on the Internet is playing into your decision. I can't speak from personal experience, but two very good friends and my mother went through something similar. All three said that the decision wasn't an easy one to reach (it was easier for Mom because she was in her late 40s and it was before the Internet). A good friend at work had her hysterectomy last fall and says that it made the difference between having a passable life in which the pain was sometimes tolerable and actually living again. Her energy level is up, she isn't in pain, and her headaches has subsided.

Whatever you decide, it will be the best one for you and your family.

keli [at] kidnapped by suburbia said...

i'm so sorry, kristin.

my grandmother had an emergency hysterectomy a very long time ago (before i was born) and she is still very active and healthy and a-okay!

many prayers!