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  #41  
Unread 01-10-2006, 12:53 PM
adenomyosis

I was diagnosed with adenomyosis in October and had didn't wait long to have my hysterectomy. My symptoms seem a little different than those mentioned here. I always swelled during my period but never to the point of looking pregnant. My pain was limited only to when I had my period, not any other time of the month. And, it wasn't continuous. As I read these postings, I'm thinking, wow... I haven't gone through nearly as bad of times leading up to my hyst decision as these other women. I'm wondering if anyone else has experienced what I have. Here's my adenomyosis story...

In August, I was suddenly gripped with severe abdominal pain and thought for sure I was simply having a REALLY heavy period. I wasn't. It had just barely started. I've had bad cramps all my life - heating pads, prescriptions for pain, heavy bleeding. But, this pain was more extreme than any I had ever experienced. It was at it's worst for about an hour, then reduced to my "normal" painful period. After the second episode, as I began to call them, I went to my family practice doctor. Had a vaginal ultrasound which showed something on my ovary which led my doc to refer me to a gynecologist. He said the tiny thing on my ovary was nothing, actually normal. But, when examining me said my uterus was globular so he suspected adenomyosis. That along with pain during my cycle rather than mid-cycle. He originally misunderstood the timing of my pain which was beginning to lead down the wrong path. I learned it's important to be really clear about when the pain occurs! The first step was to try birth control pills. I was never able to tolerate The Pill and this time was no different. Nausious every day. That's no way to live so I stopped. Had another episode right away then back at my gynecologist to make plans for a hysterectomy. I decided, why let this pain continue for months, years? What if I was struck with this pain at work? It was so severe that it would drop me to the floor in tears. My husband was VERY apprehensive about me going this route, particularly because my doc is a man. "A hysterectomy is a male solution to a problem they can't understand." But, my husband was the one who didn't understand what I had been going through, even though he was there rubbing my back when my pain was at my worst. I stood firm and my hyst was scheduled. Thankfully, I was a good candidate for a vaginal hyst, removing only my uterus. Over Thanksgiving, I was hit with my worst episode yet! Came on twice one morning and kept me sobbing and rocking on the floor for hours. The pain was so sharp and so severe... crying made it hurt more but I couldn't help myself. I knew then that my decision was the right one. I had been living in fear about when this pain would hit - where would I be? What would I do? How would I explain it? Crying every month from pain did not seem like a way to live. My hope was that a hysterectomy would not only eliminate the pain but elimintate the fear of it.

I'm 3 weeks post-op today and my recovery is going as expected, I guess. Not as I expected but thanks to this site, I know I'm not alone in some of the experiences I've had. I'm now at the weepy stage with some pain in my lower abdomin. Not sure whether I'll brave it returning to work at week 4 or if I'll wait a little longer. I'm leaning towards waiting til maybe week 5 but week 6 for sure.

Thanks for "listening." If anyone else has had similar symptoms, please post.
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  #42  
Unread 01-10-2006, 06:24 PM
adenomyosis

Cyclist 42, those sound a lot like my periods for about 15 years. I was just diagnosed with adeno in November, but I have had those periods where I would suddenly collapse from the pain and throw up and cry for about 15 years. I was always told that I was exagerating and that I should just take the pill. I'm glad that my current doctor is finally treating it like the serious problem that it is.

I have been in scary situations when an attack started. I have been in class in college and felt the waves of nausea and pain starting. So, once, I made my way to the ladies' room because I didn't want to collapse and vomit in class. I collapsed on the bathroom floor and just laid there. I couldn't help it. I was just stranded and in pain. I crawled to a payphone, but nobody would answer at my mom's. I couldn't take the bus in that condition.

I didn't know what I was going to do. I got home eventually, but it was really scary. That was about 10 years ago and I'm just now getting it all taken out! Tomorrow!

The constant pain and swelling and stuff only began about 2 1/2 to 3 years ago for me.
  #43  
Unread 01-10-2006, 07:00 PM
adenomyosis

Good luck tomorrow Freemason As I said before I will keep you and all the other princesses in my prayers. It is amazing how much pain we women endure before we get it taken care of. I suffered with this for years as well but it didnt get horrioble untill recently. I went to my gynecologist in November and he Immediately gave me a vaginal ultrasound and diagnosed me with adenomyosis and explained about a hysterectomy. He also said I had a cystocele{dropped bladder}. A dropped Uterus, And a rectocele. He told me It was a quality of life issue and I had to be absolutely sure I was finished with childbearing which I am. 5 boys is enough for any one to handle. I put the surgery off throughout the holidays because we had guests from overseas. I got my date Yesterday Iam having an lsh on february 29 2006. We are keeping the ovaries because he is opposed to taking them out because I am only 40 years old. He said I need the hormones. My mother was diagnosed with osteoporosis recently and her mother before her although I take after my fathers side of the family Iam still at a higher risk for this. I may as well keep the hormones as long as I can. Cyclist 42 Iam glad to hear that You are feeling better and from what I hear in these posts it will only get better. I hope that is your experience too. This site is great I feel much better about this surgery . I thought I was alone and find out that there are many more people like me out there. Sorry so long winded. Good luck tommorow everyone
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  #44  
Unread 01-10-2006, 08:31 PM
adenomyosis

Hi Celtic D. I have also been diagnosed with adenomyosis. My lower back kills me. I can't stand the pain!! It sometimes travels down my left thigh. My surgery is scheduled for Feb. 2nd. I am nervous but I can't wait to feel better. Good luck with your surgery.
Lynn
  #45  
Unread 01-11-2006, 01:33 AM
adenomyosis

cyclist42, I have had pretty much the same experience as you have had. Just diagnosed in November after having about a year of painful periods, however it wasn't until October that the pain got so bad it brought me to the floor and I had to miss work for a few days. Since than I have 2-3 periods a month with pain that's getting the worst I have felt, everyday. It used to only come with my periods now it's all the time. Some days worst than others. I work in the nursing field so I have the chance to get alot of medical news and advice, but not much out there on adenomyosis! Good luck to everyone and you in your recovery.
  #46  
Unread 01-11-2006, 09:30 AM
adenomyosis

I also was diagnosed with adenomyosis, btut after the surgery as well. Prior to the surgery they said I had two necritizing fibroids this from a CAT scan and an ultrasound. I ended up in the ER in November in horrible pain that began in my left thigh, wrapped around my back, then settled in my left pelvic area. I realized I had been having pain in the top of my thigh a dull ache type of pain for about a year. I also had painful periods(wake up at night from the pain and want to cry) for the last five years since my daughter was born. But I didn't have them every month so I never told my doctor. I decided to do the hyster right away because I didn't want to go through that horrible episode again. After reading everyone's posts I am glad because it sounds like it would have just gotten worse. My doctor said I probably ended up with this condition because of my previous 3 c-sections. Has anyone else been told that? Also, why did they think the adeno was fibroids on the ultrasound and CAT scan any ideas?
Heather
  #47  
Unread 01-11-2006, 10:22 AM
adenomyosis

hsquared,
When I was diagnosed with adeno, I asked how she/tech knew the difference between it and fibroids, cuz they look the same when you do an ultrasound search for both, she said its because of the thickness?
Fibroids look raised, adeno is within the lining, or at least starts there.
Terrible stuff, all of it. My doc said mine probably started when I had an emergency d n c for miscarriage, it was botched. I talked to my doc again the other day and she said my saline ultrasound from 1998 showed adeno and boggy uterus. I got pregnant 2 wks later, so no one ever told me. 2006 and still suffering, but at least my DD has a brother.
  #48  
Unread 01-16-2006, 05:39 PM
adenomyosis, too!

HI,
I had my 2d visit to the OB dr. today - I have been going thru alot these last 3 weeks...what started out with a strange burning sensation in my lower abdomen, something I had never experienced, turned into adenomyosis (diag. today) with a bonus extra - a tumor on my spleen.(but they have decided that is nothing to worry about) ACTUALLY, the OB doc today said, "well, if you were 38, i would remove your uterus tomorrow!! but since you are 48, lets watch it for 2 months!!" OK, i want it GONE!! I am MISERABLE - he prescribed pain meds - I dont like to take meds....I said "I AM JUST MISERABLE, NOT IN TERRIBLE PAIN" I just really want it removed...he wants to watch it for 2 months. anyone else deal with this???
  #49  
Unread 01-16-2006, 05:42 PM
adenomyosis

I wish they would take mine out - my lower back and left (primarily) leg has bothered me for 2 years!! NO one put 2 and 2 together!! I wish they would remove mine - they want to watch it for 2 months, because of my age!! (Im 47 and show NO signs of menopause...I have reg. periods....etc....) I am sad
  #50  
Unread 01-16-2006, 05:50 PM
adenomyosis

I am 40 and my doctor gave me the option . He isnt taking the ovaries. Said I am too young. Why does your doctor want to wait and see. Besides the obvious menopause ,but some people dont go into menopause untill they are in their 50's My doctor said it was a quality of life issue. I am still going back and forth about it even though I scheduled my surgery. Why dont you get a 2nd opinion
good luck
celticd
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