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Unread 08-28-2000, 12:33 PM
adenomyosis patients

Hi there ladies,

I was just recently told that I most likely had adenomyosis in addition to a few other problems. I have been having severe troubles for over a year now with few troubles in the years previous. From what I have read, the only real solution for adenomyosis is a hysterectomy. I am ready for this as my physical pain and bleeding is basically ruining my life and my marriage, and hormonal therapies and D & C's only help for only a month or two at a time. The only problem is, my doctor won't do one. She absolutely refuses because of my age. I am 28, have two kids and had my tubes tied 4 1/2 years ago. I have not regretted having my tubes tied one day since it was done. I am done having kids and figure that ten years down the line, if I absolutely HAVE to have another child, I can always adopt one. In the mean time, I am not willing to live like this. I feel like I am 80 years old with all the pain I'm in. And the bleeding and clotting....well, let's not even go there!! I just recently went in to the doctor and told her that I wanted a more permanent solution to the pain and bleeding. Not to mention that I'm starting to have problems with bladder spasms and stress incontinence. I was crying because of the pain I was in and the bleeding that had just started again in spite of the hormones I was on to stop it. She told me that she would not do a hysterectomy, she wasn't sure that it would eradicate all of my pain, and she told me to go see a shrink because I was depressed!! Of course I'm depressed!!! But I'm depressed because of my physical problems that seem to have no real solution. So I was wondering if anyone out there in hysterland knows of any good OB/GYN's in Southern California. (Preferably, LA/Orange County area.) I am willing to drive as far as it takes to get a doctor that is willing to work with me and find me some more permanent solutions to my growing problems. Even if there is something short of hysterectomy that will give me some long term relief without more side effects that make me miserable in other ways, I would be happy!


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Unread 08-29-2000, 04:18 PM
adenomyosis patients

Hi Askar, sounds like you are dealing with a lot. It seems to me you need a "second opinion" and a new doctor. That you had your tubes tied 4-1/2 years ago seems like a pretty permanent decision that you don't want any more children. Have your records sent to another doctor (one who is more sympathetic, maybe get a referral from a friend)and we'll pray the doctor listens!Keep us posted, and God bless!
Unread 08-30-2000, 10:08 AM
adenomyosis patients


I've been thinking about you and your situation for the past day, and wondering what reason your doc gave for no hyster - except she wasn't "sure" it would end your pain. Was she concerned about your future fertility? Is an HMO decision behind her decision?

This IS a major decision - no doubt about that. However, I agree with Scarlett that a second opin is in order. I ended up seeing 4 ob/gyn's and my own gp before making the decision to go ahead - and I'm sure glad I did, as the last doc offered a lap hyst when none of the others mentioned this option. At 7 weeks I'm about fully recovered.

I'd ask around and look for a good 2nd opin doc who is willing to listen to your concerns. If you have any friends who are nurses, they often know who is a good practitioner.

Good luck. Let us know how you do.

Dixie Tracy, Fibroid Investigator
SLH 7/11/00
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Unread 08-30-2000, 01:34 PM
adenomyosis patients

Dixie's right. Even if your MD has other reasons, like the pressure ofmr the HMO, etc. she should be honest with you about them. If she has a problem with doing a hyst on someone your age, even if it is warranted then find another MD. I had adenomyosis too and it took a few MD visits to get to the point where we were talking about the hyst. It is important thouigh for you to bring all your records withy ou to your next MD or MDs so they can see for themselves that you have tried all the alternatives. One thing that really helped convince my MD that the hyst was the way to go was the condition of my uterus when he actually saw it during a laparoscopy. Once he saw how boggy (mushy) it looked and when he noticed the mark he left in it when he poked it with a probe (like the indentation left when poke the Pillsbury Doughboy's stomach) he realized that not much else besides the hyst would help. Good luck and keep us posted.
Unread 09-01-2000, 01:52 PM
adenomyosis patients


I had a laproscopic hysterectomy on Monday, the day you wrote your message. I had had the same symptoms and problems you've been experiencing, but I was fortunate enough to have a doctor who didn't hesitate to schedule my surgery after all other attempts to control my bleeding and cramping, etc. had failed. I'm 43 and had no desire to have more children, so I didn't think twice about surgery. After the procedure, my doctor told me I had adenomyosis and my uterus was very boggy (mushy) just as Jewel described. To get to the point of my message, search high and low until you find a doctor willing to do surgery. I immediately felt relief from pressure and discomfort in my lower abdomen, even though it's bruised and swollen and looks like an elephant stepped on it. And I haven't worn a pad since the day after surgery and look forward to never owning another pad, tampon or pair of blood-stained panties for the rest of my life! I actually feel better today, four days post-surgery, than I did a week before surgery. So keep looking for relief. It's out there. I'm living proof.
Unread 09-10-2000, 09:46 PM
adenomyosis patients

Been there, your doc said almost exactly the same thing to me. I went to my doc to do what I could to get one. I had never had a gyn even make an effort to tell me what was wrong, everyone I ever saw told me it was normal to have your periods change after childbirth (yeah so irregular that they ranged from 15 days to 6 weeks apart, bleed for a day stop for 12 hrs, start for 6 stop for 2, always with a horrendous cramp secs before I would gush blood....lots of it, for almost 2 weeks, including the days I stop bleeding, clots etc etc, pain pain pain) No gyn would even examine me (hey one doc after my first child left me with placental fragments and severe PID for 10 months until I hemmoraged and got an ER doc to listen) When I finally got to a gyn here the said (insert what your doc said). Yes I was 28 (now 29) yes I was young, now it was not livable on BCP's (I got cysts on them), no I would not take Prozac for the pms phycosis (allery in the family) and no I would not wait for menepause (mom is 55 and not even peri-menepusal) So how did I fix this, I had my family practice doc do as many tests as he could, found some problems, and then referred me to a doc that he talked to and knew would listen to me. Of course it helped the whole situation that I developed severe pelvic pain that put me into the ER four times in a month.

My suggestion to you would be is to shop around for a doc. You would shop for a machanic that would fix your car, so do the same for yourself. I do wish I can tell you that looking would be easy, but I just don't know. But you know your body better than anyone, and if you feel this will improve your quality of life, then fight for it. (as I told my doc when he said it proablaly would not take care of the pain.....hey at least i would no longer have pms or periods....that is good enought for me!) I wish you the best success in getting your needed treatmet.
Unread 09-12-2000, 02:22 AM
adenomyosis patients

I know of a wonderful OB GYN who really listens & is willing to treat the problem. I was waiting for a hyst w/him before my ins changed. If you would like to know where you can find him in Orange Co, <oops! e-mail address removed for privacy! check member's profile for PM/e-mail option!>
He's the 1st MD I've trusted & the 1st to listen to me.
I have adeno in addition to other stuff.
Best of luck to you!!!
Unread 07-24-2007, 02:28 PM
adenomyosis patients DR!
Unread 07-24-2007, 09:56 PM
adenomyosis patients

Many of us who are young do find that many doctors do not want to perform a hyst because we are young. My doctor will tell you to this day, seven years later, that he did NOT want to do my hyst. But in my case, it was my only choice -- well, besides just continuing bleeding every day, having my appendix burst, and letting the endo continue to grow and spread and fuse all my guts together since my uterus was already completely covered in endo.

A hyst is a major, irreversible surgery that can affect us in many ways. My health has never been the same because of the complications from surgery. My body feels much older than my years. And while I was done having kids, just this year, seven years post hyst, I actually dealt with grief and heartache because I cannot choose to have another child. Why it hit me so many years later, I don't know; hormones I guess.

A second opinion is a good idea before having a major surgery. And a second opinion may have other ideas or suggestions.

A hyst is a cure for adeno, but does not cure all GYN issues and there can be complications that can last a life time. We have women on the site who found they only traded one set of problems for a worse set and regret their hyst. So it is a good idea to weigh all the pros and cons and be sure a hyst is the best choice for you.

You will also want to know what you want to do with regard to your ovaries, especially since you are young.

This site has a lot of valuable information and we have many resources. Learn all you can about your condition. Know your symptoms. And find a doctor with whom you can work to help you feel your best, whether it be via a hyst or other treatment option.

in there and keep us posted! s

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