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  #1  
Unread 03-06-2008, 10:36 PM
Adenomyosis

Hi Everyone, I am a new member and this is my first post. I am 32 yrs old and am currently in the diagnosis process. I'll try and give a brief history. About 3 years ago my periods started getting heavier and more painful, I finally mentioned it to my Dr last Feb during my physical because I started having problems working while menstrating and I thought it was odd. I had my tubes clipped in 2004 and was on no BC. In the last year it continued to get worse every month, the pain was worse and started lasting longer and longer as well I had heavier periods for 4-5 days with clotting, then another 4-5 days of spotting usually a brownish colour, also my cycle runs 25-26 days from day 1 to day 1.

By October the pain had gotten so bad I was unable to work. The pain is in my uterus and lower right pelvis, back and radiates into my thighs. I have everything from aching, stabbing, shooting, burning and contraction like pain.

Anyway, long story short I was sent for a Lap and D&C both came back negative. They found nothing abnormal, no endo, lesions, adhesions, etc. oh except one of my clips floating in my abdomin..... apparently it had worn its way through my tube severing it. The other clip had done the same but was still attached.

Since I have been referred to a pelvic pain specialist, after faxing in an extensive questionnaire about my pain etc. I received a call from the Dr who believes I have Adeno. He has put me on Min-Ovral to see if that helps reduce the pain. I see him later this month and if he is sure that it is Adeno I assume we will look at a hysterectomy.

Here are my questions and I'm hoping someone might be able to help.

How long does it take before the BC helps to reduce the pain??

Does the BC eliminate pain totally??

Has anyone else had their Dr use this as a method of diagnosis for Adeno??

Is it possible to have Adeno even when my uterus appears normal in shape, size, thickness, etc. through both ultrasound and visual inspection during a lap??

Also, I would appreciate any info that may be helpful. I am extremely nervous and scared and although I have tried to explain as much as possible, I could go on and on.

Thanks so much
Lori
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  #2  
Unread 03-06-2008, 11:10 PM
Adenomyosis

Hello,
I am a little new to the site. I have been on for about a week. I am scheduled for a hysterectormy in 6 days. I have had pain and been in bed since september. I have been to 3 hospitals, 3 doctors all with what they said were normal test results. This last doctor I went to(#4) is chairman of gyn clinic and a pelvic floor specialist. he said they read the ultrasound wrong. My uterus is more than 10 times the size that a normal one is. I could have told him that by the way that my pelvic became swollen.

What made me keep going is the fact that I was in trouble. I needed help. I was put on the combipatch. I just heard 2 days ago that I might be suffering from Adenomystosis- I think I spelled it wrong- and I've suffered with it all my post puberty life. I agreed to the hysterectomy because of family history and continuous pain. The main this is, I didn't have a diagnosis and I am down right now. Walking is a chore.
2nd, 3rd, and 4th opinions are ok.
I had 26 to 28 day periods from 8/96 til 1/97 I tried BC. They have always made me sick and I didn't find any relief that way. Everyone is different. My mother had no problems with BC but one of her sisters had same reaction I did. Had Hyster under the same circumstances I am- continuous pain from enlarged uterus.
Hope to hear from you soon.
  #3  
Unread 03-06-2008, 11:28 PM
Adenomyosis

Thanks for your reply, I too find taking BC awful. I always have. It makes me sick to my stomach....to the point of actual vomiting sometimes. I also get tender breasts and "morning sickness". I have decided to take them at night and try to sleep through the worst part but that doesn't always work. The only good thing is, I quit smoking cold turkey about 7 days ago (started the pill 9 days ago) because of how sick I feel. The Dr says I have to try and cope with the sick feeling so he can see if it helps with the pain so I am trying my best. Thankfully my appointment is March 28th so I hope I won't have to continue after that. The pain is terrible but this sick feeling is just as bad and makes taking my pain meds very hard.

Good luck with your surgery, I wish you a quick recovery.

Lori
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  #4  
Unread 03-07-2008, 05:49 AM
Adenomyosis

I loved being on BCP, had to stop due to age and high blood pressure. Anyway, I also have suspected Adenomyosis, and my understanding is that the only way to positively diagnose it is with a hysterectomy. Someone correct me if I am wrong. Best wishes to you!
  #5  
Unread 03-07-2008, 06:12 AM
Adenomyosis

Hi Lori,
I too have Adenomyosis and will be having a total hysterectomy on March 20th. My situation is similar to yours. I'm 31 and started having trouble early 2003. My gyn did a laproscopy in Aug 2003 and found nothing. My symptoms and problems continued to escalate. My periods are very similar to yours with several days of bleeding with large clots and then a few days of brownish spotting. I have many of the same pains that you mentioned, with the worst being very sharp pain while I am bleeding with clots. I felt like my uterus was literally being ripped apart.

Anyway, with my last period (2 weeks ago) I finally couldn't take things anymore. I called the doctor and they got me an emergency appointment. He suspected fibroids or adenomyosis. I had a vaginal ultrasound which revealed no fibroids and a uniformly enlarged and boggy uterus. So I was diagnosed with adenomyosis and scheduled for TAH.

We did discuss the ablation technique that he said works for fibroids but does not work for adenomyosis because they can't reach all the affected areas. He also said that some women try BC and hormones but that it is only a short-term fix for a long-term problem. He said the only real treatment for adenomyosis is hysterectomy.

The most helpful defination I have found for adenomyosis is at fibroids.net. Here is the link (hopefully it will go through on the post). http://fibroids.net/aboutfibroids.html#adenomyosis

I am very happy about having my TAH. I am ready to be done with the painful periods and return to a normal life.

Good luck and keep us posted!
  #6  
Unread 03-07-2008, 06:30 AM
Adenomyosis

My doc is almost positive that I have adneo (he won't know for sure until my hysterectomy) I have a very enlarged uterus, my periods used to be bad, had a D &C last year for a polyp, helped for a few months and now I am in bad pain again. It came on quick this time and strong. I also have some ovarian cysts and a fibroid, so with all of that going on, we decided on the hysterectomy, since I have a 16 year history since I was 17.

I recently tried the Pill, but it did nothing for the pain. Once we did the ultrasound and my doc saw the uterus was so enlarged, (it was enlarged last year too with the D & C, but the pain went away for 6 months, so we left it at that for a while) So I am very glad I will be having this surgery.

I am in pain to the point my back hurts so badly, I can barely walk at times, and then at times it is fine.
  #7  
Unread 03-07-2008, 07:24 AM
Adenomyosis

I tried BC for over a yesr - several different kinds but nothing worked for my pain, heavy periods and large clots. They suspected endo and even did a uterine biopsy to check for adenomyosis. It came back negative. I had multiple ultrasounds to check the uterus and all came back normal. Based on other tests results and prolonged treatments that weren't working we decided on the TAH/BSO - I also was plagued with very large cysts on both ovaries.
During surgery my doctor immediately knew it was adenomyosis. It was very apparent. This is a disease that is very hard to get an official diagnosis before surgery. My relief was instant! I am two weeks post-op and feeling better than I have in over two years! I realize I will have some recovery issues with hormonal imbalance but I am ready to take that on if it means I don't have the pain.

To answer your questions - No BC didn't work for me - it might work for others though since everyone is different.

There is no cure for adenomyosis that I have heard of - only a hystectomy.

I would suggest you do alot of research and ask alot of questions! It's also good to get a second opinion.

Good luck and hang in there! Keep pushing for answers because life is too short to live through it with pain and bleeding!
Amy
  #8  
Unread 03-07-2008, 03:35 PM
Adenomyosis

I too had adenomyosis as well as fibroids. Neither of which were diagnosed, just suspected. My original Dr. tried Birth control for over two years various types with no success. In fact they seemed to make things worse. On one of the pills I bleed for 3 months straight and became anemic. She finally realized I had just had enough and sent me to another Dr. who upon examination said my uterus was quite enlarged and suspected adenomyosis and fibroids, which after my hyster 2 weeks ago, was confirmed. I basically came down to my quality of life and I was tired of my uterus determining when I could leave home. So I took control back and am so happy I did. This is a very personal decision each of us have to make with the help of our Dr.

Best of Luck to You!!!
  #9  
Unread 03-07-2008, 04:15 PM
Adenomyosis

Hi, I was told in 2004 that they thought I had the start of adeno. That was based on a MRI I had for pelvic pain. Shortly after, I tried BC and that controled it for a couple of years. Periods and pain became worse over the last year and particularly in the last 6 months. I have period type cramps every day. I agree with chellebelle with a lot of the information she wrote.

I was offered hyst, ablation, and Mirena. I chose hyst because of some other issues I have with prolapse. My doctor said ablation and Mirena help more with bleeding than pain, and my life is dictated by my pain.

I just had another ultrasound yesterday. There's 4 things they can look for on the ultrasound to help diagnose, but you can have adeno at not have any of those show up, too...it seems like ultrasound/MRI is helpful to diagnose but can't confirm anything. Good Luck!
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