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26 with Adenomyosis, help. 26 with Adenomyosis, help.

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  #1  
Unread 10-06-2005, 11:42 AM
26 with Adenomyosis, help.

I have no idea what I should do.
I am 26 years old, and am single with no children. Due to religious beliefs would not have children before marriage.
I have had very severe problmes with my periods since I was 13 years old. My periods usually include: backache for a few days before and during my period, heavy bleeding, 7 to 9 days in length, severe cramping, nasuea, throwing up, my legs would shake un-controllably. I have a very high pain tolerance but this was to the point where I would miss school/work and only be able to crawl or walk hunched over to the bathroom and then back to bed.
I had diagnostic surgery last year and found that I had an adhesion near my appendix (never told if it was endo), a large globular uterus sized 10 weeks pregnancy, uterine polyps, and Adenomyosis. After surgery I bled for four months straight even though I was on continuous birth control. Nothing helped. Finally, my ob/gyn gave me Lupron the first shot wore off too soon and so I only had a 6 week break but I had 3 more shots after that and have been having the most wonderful break ever from pain! I have had 4 three month shots of Lupron and my last shot will wear off in about 2 weeks. i am honestly very scared about it. I am out on my own now and am worried I'll lose too much work, not be able to make my rent or pay my bills etc. It's very scary. I don't know what to do. The only option I have been given is surgery or birth control. I would like to have kids but what are the chances of me meeting the right person and actually being able to have kids? Am i holding out for nothing? Also, it seems like maybe trying to alleviate the symptoms via meds might be harsher on my body then having a hyster. Any ideas or thougths would be appreciated very much!! Thanks.
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  #2  
Unread 10-06-2005, 10:43 PM
26 with Adenomyosis, help.

Hi (((dreamingtahiti)))

I'm so sorry you're having all these problems. I'm glad the Lupron is giving you a break. When I had my hyst I was 42 and my family was complete, but I still grieved the loss. Although you may feel marriage & family aren't in the cards for you right now, you are still a young lady and I'd hate to see you opt for surgery if there is any other possible solution to make you feel better.

After being on the Lupron this long, your uterine lining should be thinned down. Maybe you could talk to your doctor about how to best keep the lining thin, and your periods light, rather than wait for things to get back to the way they were. You might ask if you'd be a candidate for the MIRENA IUD or another type of BCP. The Mirena can be very effective for dysfunctional bleeding, and the hormones it provides are delivered mainly to the uterus. My sister can't take BCP's but her periods have almosted ceased with the Mirena.

My heart goes out to you, dear. I know how frustrating and time consuming it is to go through the trials and errors, but hopefully you'll hit on something that works for you - soon! If this doctor runs out of ideas try another one (or two or three).

I'll keep you in my prayers.
s,
Beth
  #3  
Unread 10-06-2005, 11:43 PM
36 with adenomyosis

I, too had been diagnosed with adenomyosis. I can so relate to all of your symptoms. The pain made me naseated. No one understood the pain, thought I was a wuss. It may be possible to stay on the Lupron for the maximum amount of time allowed, and see if you get any improvement after the course of treatment or using bc pills untill you would like to conceive. I wish I could offer more, other than to commiserate the pain. I was fortunate to have three children before going ahead with the hysterectomy. Try and hang in there. Jennifer
  Quote:
Originally Posted by dreamingtahiti
I have no idea what I should do.
I am 26 years old, and am single with no children. Due to religious beliefs would not have children before marriage.
I have had very severe problmes with my periods since I was 13 years old. My periods usually include: backache for a few days before and during my period, heavy bleeding, 7 to 9 days in length, severe cramping, nasuea, throwing up, my legs would shake un-controllably. I have a very high pain tolerance but this was to the point where I would miss school/work and only be able to crawl or walk hunched over to the bathroom and then back to bed.
I had diagnostic surgery last year and found that I had an adhesion near my appendix (never told if it was endo), a large globular uterus sized 10 weeks pregnancy, uterine polyps, and Adenomyosis. After surgery I bled for four months straight even though I was on continuous birth control. Nothing helped. Finally, my ob/gyn gave me Lupron the first shot wore off too soon and so I only had a 6 week break but I had 3 more shots after that and have been having the most wonderful break ever from pain! I have had 4 three month shots of Lupron and my last shot will wear off in about 2 weeks. i am honestly very scared about it. I am out on my own now and am worried I'll lose too much work, not be able to make my rent or pay my bills etc. It's very scary. I don't know what to do. The only option I have been given is surgery or birth control. I would like to have kids but what are the chances of me meeting the right person and actually being able to have kids? Am i holding out for nothing? Also, it seems like maybe trying to alleviate the symptoms via meds might be harsher on my body then having a hyster. Any ideas or thougths would be appreciated very much!! Thanks.
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  #4  
Unread 10-07-2005, 07:36 AM
26 with Adenomyosis, help.

Hi Beth,
Thanks for replying to my post. I looked up the Mirena IUD you told me about. It looks great although I don't want to get my hopes up because it had a list of reasons you can't use it and one was "Have a condition that changes the shape of the uterus, such as large fibroid tumors" Do you think an enlarged retroflexed uterus would disqualify me? I forgot to mention that it was retroflexed...
Your encrouragement means so much! It's so nice to have people who "have been there done that" and understand what is going on.
I just recently moved to Orlando and am currently looking for a good ob/gyn If I can't find one I might go back up to Dothan, Alabama and visit my ob/gyn there and ask him about the Mirena. It sounds great. I just hope it's possible. It's so nice to be able to talk through some of my concerns. My Ob/gyn told me he usually only did Lupron for 6 months if your condition was bad and 9 months for severe but ended up keeping me on for a full year (9 months of glorious relief!) I just feel like a ticking time bomb!
Thanks again for posting.
Lesley
  #5  
Unread 10-07-2005, 07:40 AM
26 with Adenomyosis, help.

Jennifer,

Wow. I haven't met anyone who has Adenomyosis before! When did you start having symptoms from it? My doctor was surprsied i had it. He thought it was going to be Endo for sure because of the age of onset and my age now. I mean, everything I have read says it usally occurs with women who are past child bearing age in their 40's and up. I wish they would do more research for those of us who aren't there yet and would like more options...
Thanks for sympathizing with me. The pain is horrible for sure. My Mom used to tell me giving birth would be a breeze after the pain from my monthly. lol. Don't think that's quite true though.
Lesley
  #6  
Unread 10-12-2005, 03:28 AM
Adenomyosis

I To Had Adenomyosis, I Am Only 29 But Was Lucky Enough To Have Married Young And Had My Family . I Had A Vaginal Hyst 15 Months Ago But I Am Still Having Some Problems Keep Having Spotting After Sex And Have Occational Sever Lower Ab Pain Which Has Put Me On Tramadol
Also My Bladder Has Not Been The Same Since , A New Doc Has Put Me On Ditropan But I Am Going Back To See Him In About An Hour Because I Am Getting Some Really Awfull Side Affects Like Restlessness And Palpitations As Well Asnausea And Diseness.
Cant Give You Much In The Way Of Advice But I Know That Having My Hyst Was The Best Thing That I Have Ever Done
  #7  
Unread 10-12-2005, 07:37 AM
26 with Adenomyosis, help.

Hi
I was 29 when I had my hyster for andeo. I can so relate to the pain and having to crawl because it hurt so badly to walk. Before I had my surgery I was on Seasonale birth control, it is the one were it gives you 3 months of BC and a period after 3 months, and it helped with the bleeding for awhile. I still had break through bleeding and it didn't help to much with the pain (just a wee bit) but it did give me some time to ponder over a hyster. I was told that nothing can really help out andeo to much (trust me, I tried) besides removing the uterus. The good thing about andeo, is that it does not attack your ovaries (the way endo does), so you should be able to keep them if there is no other problems with them.
I feel really bad for you being in this postion of having this surgery and not having a hubby or a child that you desire, it most be incredible hard . We are all here for you and alot of us understand your pain, especially us andeo sisters .
Good luck with your decisions and keep us posted!!

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