newbie

This is my first post, so if I ramble, I apologize. I just don't have that many people that I can talk to, at least none who can relate to what I have been going through.
I have been having problems for the past 4 years or so...excrutiating cramps that last for like 2 weeks, really heavy periods (changing tampon almost every hour for the first 3 days, and many accidents to boot), horrible clotting, lower back pain and leg pain.
I went to my ob/gyn 4 year ago and they did ultrasound and endometrial biopsy and found nothing. The doctor basically made me feel like it was all in my head, prescribed 400mg motrin and essentially told me to deal with it. Well, hating doctors the way I do, instead of getting a 2nd opinion, I just did nothing. In fact, I avoided the ob/gyn for 4 years. (I know, really bad decision)
So, in the past 6 months things have gotten worse every month, to the point that I have missed at least 1 or 2 days of work each of the last 3 months and the days that I have gutted it out and went to work, I bring my heating pads with me, just to get through the day.
I finally went to a really wonderful new doctor on 4/30. He listened to me for about 30 minutes, assured me that what I was experiencing was not right. When he examined me, he found my uterus to be about 8-10 weeks and thought either fibroids or adeno. He was great and convinced my insurance to pay for an MRI in order to be sure. Well, the diagnosis came back on Friday as Adeno.
I talked with him on Friday for another 30 minutes and he went over all of the options. So, here is my thing: I am really leaning toward the hysterectomy and I feel guilty for feeling this way.
I have not heard good things about the Depo or Lupron and understand that even if I get some relief, that it is temporary. He also mentioned ablasion, but said that it would address the bleeding, but likely not the pain. And that the only "cure" for Adeno is hysterectomy. I had a tubal 8 years ago, so I am not tryng to have children. I am just so tired of living my life like this.

I am having an endometrial biopsy tomorrow ( not sure at this point what that is for) and I have an appointment next Wed to meet with the surgeon, as my doc doesn't perform surgery anymore.

I guess I am just wondering if I am nuts for wanting this. The pain and bleeding have just gotten worse and worse and I feel like I am "sick" more than I am well these days.

Any insights? And thanks in advance for reading this very long ramble...I am just at my wits end!

susan7545

I dont think you are nuts. I too have extreme periods that take me out of my lifes duties(3-4 days off work). The first few days I vomit and have debilitating cramps...Birth Control pills did not work, the side effects were almost as bad as my periods. My gyno and I went over all my options and nothing was a permanent fix--except for a hyst. WE tried some more pills and I decided that I just cant deal with my periods anymore. Serveral people think I am nuts, but they dont live with my periods. This decision was very personal, but I feel like the quality of my life will be incredible. This decision was hard, but I am happy to return to the land of the living.
Good luck on making your decision. If you ever need to chat instant messege me.
take care
akobie

Thanks for the words of encouragement, Akobie. I wish you luck for next week.

Susan

No, you aren't nuts to want this. It is your decision and you have to make it.

Good luck to you! My surgery is in less than 12 hours now.

I will let you know how it goes.

Woodsie

Don't let anyone tell you any different. This is all up to you. I am so mad that everyone has an opinion and feel like they have a right to tell you.
I have constant pain. Because instead of the Doctors listening what I want they decided that the pain can't be that bad. Well now I am paying for it not them.
I have no quality of life at all what so ever. I throw up, in constant pain, can't work, can't be a mother. However, because the doctors know our bodies better than us and of course it is all in our head we as woman have to suffer.
Wow, do I sound angry or what.
I am so done and have no trust in the medical field at all.
Sorry for venting.

Susan-

Oh, Hyster Sister, I totally understand. Please don't feel badly for wanting to have this surgery. You deserve to have your quality of life back! My story is very similar to yours -- I have had two other surgeries with absolutely no success. I can not continue to deal with so much pain and bleeding all the time, etc. I hope you can make your own decision without guilt. It's strong to do something that will help you feel better! I am so ready to have my life back and am grateful I can do something to help this happen!

Take good care of yourself and a big to you from the BunnyLover!

Hi Susan
I just want to start out by sending you a big

You are not alone here. I too have adenomyosis along with endo. I know all too well the pain that you are suffering, as I live with it 24-7. If you feel that you have tried all the other options available, and are comfortable with your decision, then please don't let others opinions sway you.

You are correct in that the only true cure for adenomyosis is a hysterectomy. The endometrial lining has burrowed its way into the muscle walls of the uterus, and that is partially what causes all the pain. I have read some research that states if you only have a small localized area of adeno, then it may be possible to just remove a small part of the uterus containing the affected area, and then repair the uterus. This is really not an option in my case, as my adeno is throughout my entire uterus.

Endometrial ablation is used to destroy the lining of the uterus, and therefore stop or at least slow down the bleeding. What it also does, is "trap" the adeno lesions in the walls of the uterus. If they are scarred over, then there is nowhere for the trapped blood to go, and therefore the pain will likely continue.

As long as you are comfortable in your decision, then you are doing the right thing for you.
Take care of yourself hun, and remember we are all here for you.
and s
Tam

Hi Susan..
wow, your post sounds like I could have written it! I've had pretty much the same experience with the medical field. I suffered for YEARS....over 25 years as a matter of fact....all the while being told, "everything looks perfectly normal" and to take motrin for the pain. When I was on the pill during my childbearing years i was told that the "breakthru bleeding" was caused by the pills. After I had my tubes tied I was told that my symptoms were a psychsomatic reaction to my feelings about the tubal ligation. (never mind that I was thrilled to be done having kids!) When I reached about 35 years old I was told "these things begin to happen at your age" (somehow I expected to be older when they started saying that!) At 40 I was put back on BC pills...no help. I was told that my symptoms were caused by perimenopause. When my marriage began to fall apart...you guessed it...that was the cause of all my troubles! I actually feel fortunate that I full out hemmorhaged about 3 years ago...made them take notice. We did the lupron shots to control the bleeding (ha ha...I bled for 6 months straight on that). In october of 2002 I had an endometrial ablation. That helped for a while. However, now a year and 7 months later, I don't have uncontrollable bleeding...just uncontrollable pain from the adeno being trapped in the muscle wall...( the adeno shows up on the ultrasound now, since the ablation.) Finally I am scheduled for a laproscopic hyst on june 8.
Sorry this has become so long! My whole point is...given the choice to do it all over again, I would have jumped up and down and insisted on a hyst a LONG time ago!
Good luck to you

Thanks all of you for helping me feel less crazy!

I am leaving work in about 2 hours for my endometrial biopsy. Yuck, I hate these things. Anybody have an idea why I have to have this done, since the MRI clearly showed Adeno? Not that it is such a major thing, but I feel like crap today already and just am not looking forward to it.

I cannot tell you all how much I appreciate the encouraging words. I mean, I have a wonderful BF, who has been nothing but supportive...but he's a 23 year old guy, who I think is feeling a bit overwhelmed with all of this. It makes me feel so much better to have other people to talk to who are going thru the same nightmare as me!

Susan

Hi Susan..
I was told that they always do an endometrial biopsy when there is excessive bleeding or bleeding between periods. Also, the diagnosis of adeno can only be made for sure after the hysterectomy. They can think that's what it is by the results of the tests but the only way to know for sure is to send the uterus to pathology after it's removed. I hope that clears it up a little for you.

P.S. Don't worry too much about the biopsy...it hurts but only bad for just a few seconds, after that it's just more cramping. Take something like motrin or anaprox before you go to help with the discomfort....good luck