Is there something we're missing?

I have had problems with my periods almost the entire time I've had them. From age 16 to 19 I would have "episodes" at the start of my period where I would get violently ill--I would have diarrhea, vomiting, I would pass out, and the cramps were HORRIBLE. During these same ages I suffered through 2 miscarriages as well. Shortly before I turned 20 I found out I was pregnant again. The doctors weren't optimistic for me to carry to full term, but thankfully I did. However, it was not an easy delivery. I went through many hours of labor before the doctor came in and checked me and said "The baby's breach, we're going to have to do an emergency c-section." A few days later we were released from the hospital, despite the fact that I had a low-grade temp and very low blood pressure when they took my dismissal vitals. The next day I was back in the hospital in the worst pain I've ever been in. I spent a week in the hospital with an uterine infection. (My current GYN says that this may be a cause to some of my problems.)
Soon after I started to experience extremely heavy periods that were becoming more and more irregular, that came with awful cramps and passing giant liver-like clots that at the small end were the size of golf balls and at the big end were a bit bigger than a softball. I have experienced this ever since, but through the years it has gotten worse and worse. About 4 years ago the bleeding was so heavy I was soaking through ultra plus POISE pads in 5 minutes. In a matter of 3 months my hemiglobin went from 9.8 to 6.8. Then one night while working I passed out. I went to the ER and my hemiglobin had dropped to 5.6.
The dr. admitted me to the hospital and I was given 2 units of blood. Soon after that things calmed down. Then I would go 6 months or so without having a period, and then I would bleed for several months. It went back and forth like that until about 1 1/2 years ago, when I started bleeding and never stopped. I have had to have numerous transfussions, so many my hands and arms are scarred from IV pokes. I have tried several versions of the pill with little to no success. In May I had a hysteroscopy and D & C done, and then my GYN put me on a new bc pill. The bleeding stopped, but my periods were AWFUL. Until a week ago, when the bleeding started up again. It is now progressively getting worse, despite the fact that I'm taking the pill.
My GYN said it's time for a hysterectomy, and I've been scheduled for one on Sept. 25. But I'm having MAJOR problems dealing with this. First of all, I'm 33 and had hoped to be able to have more kids. And second of all, the thought of a major surgery and the fear I have that an infection similar to what I had after my c-section will happen
scares me. But at the same time I know I can't keep going on the way I am. Could there be an option that my GYN and I have missed? She told me after my surgery in May that she would never do ablation on me because my uterus is really tall and she had a hard time trying to see and reach the top.
If anyone has any other suggestions on other options besides the hysterectomy, please let me know. And thank you so much.

angelwings1994,

I'm sorry you're going through all of this! I can understand why you are hesitant about having a hysterectomy at your age.

I'm a little tired so forgive me if I missed something in your post. My eyes won't focus to read it again.

I'm don't think that you mentioned the reason for your heavy bleeding.
Have you had an internal ultrasound to see if you have fibroids?

There is a lot of information on this sight about procedures other than hysterectomies. You should read as much as you can and make a list of questions for your doctor. You should also get a second opinion.

I have one daughter and while I would have liked to have more children, it just wasn't in the cards for me. I also had a difficult pregnancy and birth so I am very thankful that I have her. I was much older than you are when I had my hysterectomy so I had already dealt with my emotions about not having more children.

I know that this isn't what you want to hear but with all of the problems you have had, a hysterectomy may be your safest option to stop the bleeding.
When I got to the ER, my blood count was 3.7 and needed 4 units of blood.
I passed out in the waiting room. If I hadn't gone to the hospital when I did, I wouldn't have lived long enough to have the hysterectomy. I was very happy to have the operation. Even if I were younger, I can't imagine going through all of the bleeding , possibly another procedure of some sort, and then trying and carry another child to term.

Every operation has it's risks. But sometimes other procedures that I've read about seem more dangerous than the hysterectomy.

I'm sorry that I couldn't offer more help. But it's really a topic for you to discuss with your doctor. I hope that you are feeling better soon.

I'm sorry, I forgot to tell of some of my causes for my heavy bleeding, etc. It seems like the list gets longer all the time.
As I said before, I had a horrible infection after having a c-section that my current GYN says could possibly be a contributing factor to my problems. I also have numerous small-to-medium fibroids and endometrial hyperplasia. They were not able to rule out the possibility that I may have endometriosis as well during my hysteroscopy and D&C. I also have fibromyalgia, which could be a contributing
factor as to why I have such horrible cramps.
I have actually consulted with another GYN that's in the same office as mine. She has told me she thinks a hysterectomy will be my only complete relief. She said as many versions of the pill I've tried she doesn't think we'll find one that works, and since the hysteroscopy and d&c didn't help things a hysterectomy would be the next step.
I would have prefered to consult with a GYN who was not associated with my GYN's office. But as it is I travel 50 miles to see my GYN. I used to see a GYN in the town I live, but they were rude, treated me like dirt, and were stupid. An example of this was a day I was doubled over by the toilet crying because of the pain. My Mom and husband-at-the-time called the office and told them what was going on and said the dr. should see me right away to see if we could find out what was going on. The receptionist said the dr. was getting ready to leave for the day (to play golf!!!) and asked if I could wait until tomorrow!! My Mom let loose on them, and finally they came back and said "She needs to be here within a 1/2 hour or the dr. will be gone for the day."
While all this was taking place, I was at home in pain. I finally passed about 7-10 large clots, and the pain subsided.
I brought one of the clots with me to the dr. so he could see it. He examined me, looked at the clot, and asked me some questions. Then he told me "There's only one thing that could cause the pain you described, and that's IBS."
I said "Uh....wrong hole doc!!" He just turned and looked at the clot one more time and then said "Yep, it's IBS. You'll need to take a laxative the next time you go through this,"
and then as headed for the door he said "You're not dieing."
He left the room and I heard him tell the nurse out in the hall "Stupid *****<oops! please do not attempt to override the censor!> made me late for tee off."
So that helps you understand why I don't consult with a GYN where I live. There's a town closer to us than where I go, but the GYN's there are the town idiots of my town and some of the same GYN's that are in the office with my current GYN. So that does me no good. The next closest place for me to go is about 100 miles from here. They have an x-large waiting list, and it would be 2008 before I could get in there.
I do plan to read and gather as much information as I can.
I have pre-op appointments on Sept. 13, so I plan to take all my questions into my dr. then. If anyone has any other possible options that can spare me from having to have a hysterectomy that I can take with me to my GYN that day, I would be so thankfull.
Thanks so much for your help.

I wish you luck on your upcoming hyst. We have a bit in common. I'm also 33. I had my first child at 18, and my second at 22. At the time, people thought it was too young. Now that I'm having problems with bleeding, pain and a fibroid, I see that things happen for a reason, and I'm lucky I had my children young.

I also had problems with doctors being disrespectful, rude, and cruel.
I won't go into detail w/ this as there are two unbelievable stories to this that could go on and on.

That doctor should have realized, that without his patients, there would be no practice, and no golf. He didn't have any compassion, or bedside manner.

I've also had problems w/ clots lately as well.

Although I can't really help with any other options, I just wanted to let you know that you aren't alone.

OneSillyChic

I'm so sorry that you are going through all that you have. I am 32 and have had an ablation, a D&C, a hysterosocopy, and have tried countless medications. I am still at the place you are. I am petrified too. This is my seventh surgery and it doesn't get any easier. I can tell you that I am so sorry that I had the ablation. It seems that the ablation added to my problems because they didn't burn my whole uterus so I had blood that was caught at the top of my uterus that couldn't be shed because the scar tissue that was blocking it. It's been horrible. Don't you just wish someone would just not give you the option? Even with the pain I've had I still am questioning if I want to have this surgery. Do you feel like you're too young? Is time off from work an issue for you? How are you handling that? My prayers are with you.

Hi, angelwings,

Couple of options no one has mentioned yet:
- uterine artery embolization (performed by a radiologist, not a gyn) (but-- no guarantee on being able to have a healthy pregnancy afterward)
- myomectomy to remove the fibroids, but leave the uterus

I don't know if either of these things would help your heavy bleeding. Do a search or two on Google (and on this site) and you will find a lot of information.

As for me, I had an ablation and then a D&C and am now probably heading for a hysterectomy for the pain and bleeding caused by just one lousy fibroid. But I was not planning to have another child, so I don't have that additional complication. Good luck to you in your search!

(BTW, still can't believe the story about the doctor who thought your BLOOD CLOT was IBS. Let me guess what his class rank was in med school. How horrible.)

- Lysippe

Hello to all of my new found sisters, and thanks so much for your help. When I first posted my original message I was an emotional mess over all this. Thank you Lord for bringing me to this site!! You have all helped me so much, and I have finally managed to come to a level of acceptance over having to have a hysterectomy.
Never in a million years did I ever think I would be facing a hysterectomy at the age of 33. I mean, it's not really something that I dreamed about when I was a little girl!!!!
Some women I work with and others here where I live have told me "Oh I went through exactly what you are going through right now..." I ask them how old they were when they had their hyst.--the youngest was 42!! I keep thinking
if I were 9-10 yrs. older going through this maybe it would be a bit easier to deal with. But who's to say?
A friend of mine told me to make a pros and cons list for having a hysterectomy. As I was making the list, some things came to the surface that were "pushed back" before by my fear and grief. My problems haven't just affected MY life, but they've been a major impact on my CHILD'S life.
And then I remembered my son's track meet in May. I remember seating there waiting for his last (and major) event when the pain became intense and I was bleeding so heavy I leaked through my jeans and blood was running down my leg. And as I was trying to make my way to the car to change, I passed out from my anemia caused by all this. I had to be hauled off in an ambulance during my son's track meet. I missed seeing his last event, and he didn't do well because he was so worried about me. So now, if I start crying and the fear and grief of having to have a hyst. starts to take over, I remember that day--and I remember the look on my son's face when he got to the hospital. That's enough to make me know I'm doing the right thing by having a hyst., and it has brought me much peace. To all of you who are facing a hyst. and are scared, grieving, and questioning whether it's the right choice to make--I highly suggest you make your own list. I'm sure you all have your own "track meet" that will help put your mind at ease, too.
My work has been wonderful with all this. My boss went through this (had her hyst. 2 yrs. ago at age 42), so she is very understanding. I have PTO time I have saved up, so that'll help. And I think I'll be getting some short-term disability help, so that will help, too. Things will be tight, but we'll be able to get by. That's a big relief.
Thanks again to all of you for your help--you are all so special. I wish you luck, good thoughts, and lots of prayers in your own journeys to become healthy & regain your lives.
God bless you all.

Angelwings 1994,


I can understand the pain you are experiencing. I suffered with endo for 16 years.

If your doctors suspect endo they should do a lap to see and remove any endo you do have. Laps can relieve alot of pain. There are treatments for endo that can help with the blood loss.

I took birth control pills for years, I also used depo provera, and lupron.

If your doctors office isn't willing to help you find the right pill for you I would consider changing doctors. Especially since you want to avoid having a hysterectomy.

Best of luck to you