adenomyosis

[shellant]

I was just diagnosed with adenomyosis. This took almost a year to diagnose. Any one have any info about it. I am 33 and discussed surgery with my Dr. He said if it is in an isolated area he does not have to do a hyterectomy. He also said this could have been caused by my c-section I had in 2004 i also had stage 3 enometreosis at the time of the c-section. I am considering surgery because of the pain I experience almost 3wks out of the month. any info would be helpful.

Thanks :)

[lilaugie]

Wow!

I always thought that the bad medical care I received and the few options I was given was because I was way up here in the frozen north!  I was considering staying with my sister in Louisiana or my brother in Chicago to see a "real" doctor for my adenomyosis.  I must admit, after reading your comments girls, I don't feel much better, I feel a little hopeless!  I do not want a hysterectomy either, but what are our options?  I also have RA, so any fluctuations in hormones send my body so out of whack it's unbearable.  Therefore, I cannot do the birth control pills, etc. to treat this heavy bleeding, cramping, and blood clots.  I wanted to pass on to you, though, that I did do a Progesterone cream for a few months, and it REALLY helped all my symptoms.  Trouble being, it kicked in the RA!  So, I have quit the cream, but you guys should try it.  The bleeding really let up, there were no clots, periods were more on schedule, and I had no cramping.  At this point, what do you have to lose?  I'd send you my unused portion if you wanted.  It cost about $50 in the health-food section of my grocery store.  Do either one of you have access/interested in naturalpathic doctors?

[lilly64]

Yes, I seem to be the only female in my family blessed with these issues - I have four other sisters.  My oldest siser (54) has never been pregnant so she should watch it, I think.  Actually, I'm the only female in our family that has any real health issues and they are all inherited from my parents: my spinal problems thanks to my Mom AND Dad; my ear problems thanks to my Dad; and who knows what else.  My parents are 78 and when I ask them for family health histories or their health histories they abosulutely see no correlation to my health issues - they don't get the hereditary factor.  Oh, well.  Hope you are feeling better very soon....  Lilly

[lilly64]

Well you had some good news, at least.  Hopefully you'll get more definitive answers at your post-op appt.  The total hysterectomy is usually the only way to get it all, unfortunately.  We women really need to push for more treatment options b/c the only treatment (hyster.) is a very, very severe one as far as I'm concerned.  I also have the endo/adeno and cysts and waiting four more weeks for a follow up ultrasound and also this week for the results of my CA125 test.  When I saw the gyn/onco on monday for the first time, he is already "mentioning" a hysterectomy if it gets worse or I can't take the pain anymore.  I'm like . . . hold on, I'm only 42 and I'm not really ready for menopause either. I also think it's un-natural, although, as I've said, it's the only known final treatment so that's all doctors know.  My sister in law had a hysterectomy when she was 41 and they put her on the hormone patch to prevent menopause - still not natural to me, but she was in such severe pain from fibroids, it was her only option.  Another woman I know had a hyster. when she was about the same age for endo/ademo and tumors (benign) and she also takes a hormone pill.  Women need to be very much more pro-active in our health issues; i just don't know where/who to start with.  Just say if a man had testicular or prostate cancer, do they cut off the penis, testicles, and take out the entire prostate and rectum, just to make sure??!!  I don't think that would ever happen; they're treatments are less invasive and much more researched and are approached in a totally different manner.  It infuriates me to no end and after I finally figure out what my treatment will be, I'm going to find out where to start with the proaction.  Good luck to you and God Bless!  Please feel free to vent, post, ramble, etc. whenever you feel like it - I'll listen!  Take good care. Lilly

[Shellhall]

I was talking to my girlfriend last night about this Hysto thing and she agrees with us on that it seems alot for this... I wish that there was a way to take of this with out that... I have read that I really can not go on birthcontrol because of the adno... From what I remember the Birth control makes me sick anyway... I have not been on anything since I got pregant with my youngest which will be 16 in june... My huband had a vasectomy right after he was born... We were really young when we got married and had our children... I was 19,21,23 when they were born... My daughter is 19 now and she worries about her health because she is not where close to wanting kids... I was pregant with her at her age... She jokes that she has to be done by 34... Because my mom was 42 when she had her hysto done and I am 38 now... I tell her that she is a funny girl... My sister does not have any female problems... She is 40 now... Who know why things happen to us... Thank you for your support and I wish you luck and let me know how you are doing...
Thank you
Shelley

[Shellhall]

Well He did confirm that I have Endo and Adeno... He did do the D&C and I had a few days somewhat pain free but I think that it is short lived because I am starting to hurt again... I go back on the 6th for my postop... The only thing that he really said or atleast remember him saying is that there was to much blood in there to really do anything... I assume that he took samples but he did not tell me either way but he is really good so I could not see why he would not take samples... The good thing is that everything has come back normal... No cancer that I know of and I am so very happy about that... I have done some reading on this and from what I read the only real cure for this is everything out and no HRT to kill the rest of the endo off... Have you ever heard about that... I am only 38 and not really sure if I want to go into full menopause yet... Thank you for you thoughts it really means alot to me...

Shelley

[lilly64]

I am so sorry that your surgery did not turn out as you wanted.  Did they remove anything or diagnose anything?  How's your pain now?  I certainly hope you're getting some relief. You're in my thoughts and prayers - God help us all!  Take good care.  Lilly