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adenomyosis

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 :)
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Hi - I posted about this a couple days ago.  This was the dx for me as well on my CT.  Below is my post. We should stay in contact.  (I'm 42 and had a c-section in 1996 as well as two complex ovarian cysts removed in May of '04).

Ok, here is what I've been writing for the past three weeks for my symptoms for what I thought was an ovcysts. However, I now have the actual report and I'm more concerned about the topic I'm threading. Does anyone have any history/info. about this condition? I do have an appointment with a new Dr. - a gyno/onco on Jan. 22nd as my regular gyno is not listening to me about the EXTREME pain - go figure. Here are the symptoms as per many of my posts:

One month ago I went to the urologist with severe cramping, side/back/groin/leg pain on the right side. They thought it was a kidney stone. It isn't - it's lobular uterus with adenomyosis and a right ovc (had CT and vaginal US). I am very exhausted (I nap 2-3 times per day). It's still mostly on the right side, but is also on the left. I cannot function. I have been taking Vicoprofen and it doesn't help much. I am also very swollen and bloated and my bowels are all messed up - constipation with nausea.

An upudate, though:  I went to the ER last night b/c I hadn't had a bowel movement in 5 days.  I thought I was going to die in the ER - pain was unbearable mostly b/c of the blockage.  They cleaned me out and did a CT with contrast.  This CT showed the right cyst had dissolved, but I now have a cyst on my left ovary measuring 3.5 x 2.4 cm.  That grew in about 2 weeks unless the original CT and ultrasound confused the sides (which i tend to think is the case). Had alot of left side pain yesterday, but the right side pain continues.  I believe the adenomyosis is causing all of the pain, but we'll see when i go to the dr.

Hope my info. helps you and let me know if you have any further info as well.  Good luck!
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Can you tell me please, what exactly is adenomyosis?
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Adenomyosis is another term for endometrosis of the uterus  thickening of the walls of the uterus  sometimes part of a fibroid uterus.
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Thank you.
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Hi, I was diagn. with adenomyosis back in May 2006. Symptoms, bad bleeding on period, with blood clots, cramps, back pain. Surgery was July 2006. Per US, and patology report, I had largered uteris, with 3 big fibroids, and a lot of smalls. I was looks like a 4 month pregnant. I was tired, and anemic too. The dr removed only my uteris. If, I can start over again, they will removing my ovaries too. I find out just couple of days ago, I had cysts on my ovaries too, and my dr forgot to tell me... Please ask for all of the report, before do ANY surgeries!
Now, I still have lower back pains, and I'm waiting for the CT result...I hope this will help.Sue
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Please let me know how it goes friday. If you don't mind me asking how old are you?
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I also have been dig with Adenomyosis with Endo.. I have surgery this Friday... It is only a Lap with Hysteroscopy and D&C... Doc told me that I will know about two weeks postop if I will have to have my Uterus removed... I am scared to death... But I also can not wait to get some of my life back... The pain is really bad and today my back is killing me... The doc did say that my Uterus was really enlarged but I do not know what size it is... I am a fairly small person and all of my pants are tight in the abdomin (abdomen)...
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Thank you for the response... I am 38 years old... I have three almost grown kids so the issue with no more kids is not a problem... Sorry for the delay on this response... I actully ended up in the ER the other day... I started running a fever the highest it was was 101.3... Doc in ER did bloodwork and urine and all was clear which is good... I just really hope I can still have surgery tomorrow... As of this morning my fever is gone so lets cross our fingers... the er doc was not sure why my  back hurt so back... has anyone with this had that happen..?
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Best of luck to you tomorrow!  Let us know, when you can, your outcome.  Take very good care!  Lilly
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Thank you... I just really hope that I can have it... I just want some of my life back... The pain today is pretty bad so lets all cross our fingers that tomorrow can happen... So far no fever but not to be gross but I think that what I think was allerigies is really a cols because when I blew my nose a little bit ago it was getting green... God why now why do I have to get sick now... Why could this not wait for a few more days... Wish me luck!!!!!!!!!!!!!
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Avatar_n_tn
OMG - If i hear of one more doctor not connecting ovarian/uterine issues with back issues I'm gonna scream.  My ER Dr. the other night said the same thing as did my gyno a couple weeks ago.  But reading these posts it is very obvious that back pain goes hand in hand with these issues.  Best of luck to you and your surgery tomorrow!
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Avatar_n_tn
well I had my surgery last friday... but really nothing was done... Doctor said when he got in there it was to bad to even start... He did some test and that was it... he also said that my uterus is the size of a grapefruit... I am a farly small person... So I guess that I now just wait for my postop to talk about what we do next... Ya fun...
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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
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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
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Avatar_n_tn
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
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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
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Avatar_n_tn
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
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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?
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What is that cream?  And how do you use it?  I bet it would improve my sex drive or at least give me one. I think this is one of the symptoms of all my issues.  Please let me know asap - kinda desperate here!  Thanks.  Lilly
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Sorry it took so long to get back to you.  I tried this site yesterday and it was down for maintenance or something.  I'm in Alaska, what state are you in?  The specific cream I bought is from a company called emerita.....go to their website of emerita.com, they have all kinds of products, but like I said, I got it in the health food section of my grocery store.  It is progesterone cream.  You are supposed to rub it on any hairless spot on your body once a day if you haven't entered menopause yet.  I did belly, then inside of the upper arms, then buttocks, and switched around so I never put it on the same place two days in a row.  I don't know if that matters or not.  Also, check out website womentowomen.com.  I really find some useful articles and help on that site.  They sell progesterone cream too.  Good luck to you!
Amy
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My Dr. told me the area where I have adenomyosis is very vascular (bloody) and when he does my surgery he is going to enter the area where the least amount of blood is. I have read alot about adeno and lots of times the cure is a hysterectomy but I do beleive there are some Dr.'s who do not beleive in taking out body parts. I think the problem is Dr.'s have a huge problem admitting they do not understand these gyno issues esp adeno and endo and in reality there surgerys are useless. Anyway there has been many reports on women who have had a hysterectomy and they are still in pain tell your Dr.to explain that one!! I am having my lap on 2/22 and my Dr. says he feels confident he can remove the 1.6cm mass he is calling adenomyosis in the wall of my Uterus. i am 33 with one child and would like another one and the thought of menopause does not seem like a great option but at the same time I can't go on living in pain and trying to raise a 2yo work and be a wife. I also think our whole healthcare system sucks and dr.'s care more about $$ and quaintity of patients. You are right if a man had pain in his penis everyday I bet they would find a cure :)
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I have adenomyosis and have so much pain in my right leg.  Sometimes it goes all the way down to my foot.  Have you suffered from this at all?
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I am a 27 year old diagnosed with adenomyosis.  I am not yet ready to have a hysterectomy I have two children but would like more.  I am not sure though if i can get pregant because I am having a menstral cycle every 2-3 weeks, so it is hard to know when i am ovulating in that time!  I am having a D&C in a few weeks and hope that she says I can wait to have a hysterectomy until I am done having children!  I do however have severe menstral cramps and the leg pain nausea ect....but I am only 27 and everything i read suggests you get a diagnosis later inlife!  Just stressed right now!!!!!!!!!
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Hey everyone...I have also been diagnosed with adenomyosis....I was never also told I had ovarian cysts....I have decided to try a new Doctor because my obgyn knew nothing about bioidentical hormones ( progesterone cream natural) I made another appt with another obgyn but she isnt taking new patients until the end of april. I have been bleeding for 3 yrs straight with a small break after my 1st D and C last april. I tried birthcontrol pills but they just made me hemorroage. Pain isnt too much of an issue...have back pain but it is tolerable. The problem is these doctors do not want to investigate these new natural hormones. Bioidentical hormones mimic exactly how our body makes progesterone. My sister had gone to a regular Doctor for menapausel symptoms and he prescribed her Natural progesterone testosterone and DHEA. to help. Since I could not get this doc to prescribe for me since he wanted me to see my OBGYN to get a diagnosis my sister gave me her bioidentical progesterone cream and made him take out all the other stuff ( testosterone,DHEA). the reason why I am writing this is because even though you can get Natural progesterone cream over the counter at health food stores or via the internet it isnt strong enough for adenomyosis. I have been using her 200mg cream thru out the day. I take almost 800mgs of her dose plus when i get stressed I put the over the counter progesterone cream ( NATPRO)  on. I have to be taking 900mgs per day and my bleeding has ceased. At times i bleed but very lightly and it goes away. I am overweight and I know body weight also plays a part. People who are overweight tend to have alot of estrogen in their bodies. Adenomyosis, endometriousis, polyps, fibroids are all caused by too much estrogen. Certain foods and veggies also carry alot of estrogen(ex: spinach and Broccoli) All these things are awful for adenomyosis...In fact as an example....I stopped bleeding with high doses of progesterone cream but then i said Oh let me lower it a bit just a bit. That same week of lowering I had tons of broccoli...( I happen to love broccoli and spinach) and sure enough! The bleeding started. Eventually I will start to cycle with the cream but being that I am just fighting the estrogen dominance...I take the cream every day. I sleep so good...Have no hot flashes, feel a sense of calm....no anxiety.....Dr's will not know how to dose you...You need to work with the cream in order to find the right dose for your body....But really....the ones over the counter....will not help much with adenomyosis...You need a good compounding pharmacy!! Will try to keep in contact as in april I have an appt with a new OBGYN who specializes in the natural bioidentical hormones....I am 37 yrs old and do not want children..never had children...just 2 D and C's The first one was to remove 2 endometrial polyps..... that I think really screwed me up more! I also believe that since before the 3 yrs of bleeding I was on the birth control pill and not bleeding at all ( I had always had regular periods) that the synthetic BC pills really screwed me up and helped with the estrogen dominance....We have to be strong as women and be aggressive with our dr;s to get the best care!! I wouldnt wish the suffering that I had the past 3 yrs on anyone even my worst enemy so Im with all of you! Try your hardest to not get the hysterectomy with removal of those vital organs there has to be consequences....my best regards to you all!!!
Sincerely,
Christina
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I was the one that posted about the natural bioidentical progesterone.....everyone with estrogen dominance should try it....Low dose over the counter will not work you need higher dose. I was diagnosed with adenomyosis basically had surgeries nothing worked but this is working!! I was bleeding for almost 3 yrs straight..Please ladies try it...its worth it...they were offering me a hysterectomy as the only source of relief and this is working...no pain, no bleeding and most dr's do not know about it....It worked for me! Its working! I am so happy! Please try it dr's will try to change your mind but dont give in its worth the try...I finally have my life back!
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Hi, I was finally diagnosed with Adenomyosis in 2001 after having problems since I was 11 years old. In 1998 my iron level was down to 4. Sex was horribly painful. I told my female ob/gyn that I didn't think having a seriously heavy 9 day period every month and sometimes more plus all the other symptoms was normal. She referred me to an ob/gyn who did the SAME exam the other one just did and then she said she thought I had adenomyosis. My uterus was the size of a woman's who was 3 months pregnant. I had a complete hysterectomy in 2002 and do not regret it at all! They found that I also had endometriosis. I have not had the problems I did before, and sex isn't painful!!! I did not have a loss of desire either. One doctor wanted me to use a special IUD, but I've heard they can cause heavier periods and more pain and I wouldn't try that at all. The only real cure is a hysterectomy. If you want to and can wait so you can have kids before taking care of it do so - they are a blessing. I had my surgery when I was 41 and I am now 47. In retrospect I still wouldn't change my decision.
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my girl friend has been told by here gyno she has ando its good cause now we no what the problem is but there is no cure the doc said she will need a hysto before she is 30 she has tried everything she is 22 the doc also said she will never carry but we had alresdy found that out. i find it hard cause i dont realise how much pain she is in cause she does not look ill i try helping her as much as i can but stuggle. if she has a hysto will she still want me and how will it change her/us i dont no much about them. thank you
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ANDEMYOSIS.... I am 33 and didn't even find out that I had it until they took my uterus & cervix out. It is a disease of the uterus, which is almost like endymetriosis but a little different. Alot of times they think that your uterus is enlarged because of fibroid tumors, but that isn't always the case. ANDEMYOSIS is sooo painful during periods (monthly cycles) because the lining of your uterus is forming somewhat of the same this as a gall stone. Instead of shedding with your uterus, the stone moves upwards into the uterine wall muscle. It cannot be diagnosed with blood tests or anything else. You find out after a pathology report  is done following a hysterectomy. I hope that you have had all the children you are planning to have, because you have to get this out of your body or you will suffer... Maybe even beyond menstraul cramps.. Please talk to you doctor. I am 8 weeks after my surgery, and it was worth  5 weeks of pain to release me of an agonizing pain each month and to take the disease out of my body..Please email me if you need to. ***@****... GOD BLESS
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I am a 47 year old just diagnosed with Adenomyosis through an MRI.  I have suffered with blood clots and 9 day periods since i was 13 years old. I have two children a 7 year old and 27 year old. I have been going to gyn for years and they all told me i had fibriods which was causing my problems. A hystogram ,multiple ultrasounds and CT scan of pelvis did not show this problem.  My uterus is the size of a 4mo pregnancy and i am severly anemic. I am on iron supplements and get dizzy at times and tired a lot.  The Dr. that ordered the MRI is a robotic surgeon and does hysterectomies. I have heard all kinds of neg things about hysterectomies changing sex life, heart disease, bladder prolapse, back pain, early menapause even when overies are left. My dr says hormones are not a good option at my age. Anybody have any luck with the IUD ? There are a few surgeons who will operate on this condition and cut out the part of the uterus  that is most affected and restructure the rest of the uterus. Anybody have any info on this? Thanks. Renee  
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I went for my yearly paps and mentioned to my obgyn the pelvic pain I was experiencing. He decided to send me for a vaginal ultrasound. I was diagnosed about five mths ago with endometrosis and I alo have ov cysts. In terms of measurement my dr was not too concerned and wanted me to go back for a vaginal sonogram in two months and so I did. Now today I went in for followup and was told by my obgyn that I also have Adenomyosis, he gave me oral contraceptive for treatment and will schedule me for D&C in the new year. I do not bleed a lot nor do I have any severe pain. I am 38ys, 5' 6 125lbs, I eat well. I have one child. When D&C is done I guess he'll be testing whatever he remove. What should I expect after D&C? Why am I not experiencing these severe symptoms.
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Five months ago I went for my yearly PAP and decided to mention to my OB/GYN pain I was experiencing in my pelvic area. He decided to sent me for a vaginal ultra sound. PAP came back OK but ultra sound did not.  Diagnosis was thickening in the endometrium wall.  Doctor was not too concerned due to measurements.  Had to do another vaginal ultrasound after two months to check for any changes.  Went in today for a follow-up, was told I now have adenomyosis and cysts on my ovaries.  Treatment prescribed is oral contraceptive, and a D & C procedure in the new year.  I have some pain, however not nearly to the extent that Ive been reading here.  My OB/GYN is planning to biopsy anything found after the D & C.  What advice can I be given, as far as, what to expect after this procedure.  I'm 37 by the way have a great relationship with all my doctors and recently had all my tests come back perfect.
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i too was diagnosed 2yrs.ago with adeno.. i am now 37 still suffering horrible menses,the worse back and groin painw/ it also..it goes to the side of my hip into my groin.i suffer heavy bleeding,horrifying clots and am now anemic frm this as well..mine tends to be all right sided pain..i have complained for yrs. and than a ct scan came back showing adeno!! my doctors talk about a partial hysterectomy too and i dont even want to think of that until im at leasetmid to late 40"s so what do i do..i like all of u is still looking for relief,i do heating pads,motrin,sometimes i even need to take pain meds(narcotics) it is just dreadful..it takes at least a good 10 days out of my month,im lucky if i can get at least 2 weeks of feeling good! anyway some other weird symptons i have developed frm it as well is constipation ,very hard stools..i kno it is all related casuse i had my tubes tied in 2/2005 and about a year after i started noticing all of these symptons which turned chronic and was diagnosed in 09, i have 4 children,youngest is 6 so i am done w. kids but still dont want a hysterectomy yet..plz help:)
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hello my name is amanda im 25 and im a endo fighter i have been suffering with this for a year idid every drug and horom they even put me into medopause ijust had surgery and the endo is remission but was diagnose with adenomysis i now how you feel dont give up hope
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I have been recently diagnosed with adenmyosis.  I have a wonderful doctor that I get along great with.  She is female that practices GYN only. I recently underwent a endomentrial biospsy and D&C wit hytercope.  So far I am doing much better. I never knew anything about this disorder until my doctor discovered it during an exam and an ultrasound.  I am very fortuante to have found a doctor that will work with me.
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42 and my doc suspects adenmyosis, maybe endo too.  I also frequently get complex ovarian cysts that usually burst with ovulation.  I have high family risk for ovarian cancer, two grandmothers, one died of ovarian cancer.  I get vag us every six months.  I am estrogen dominant and have been my whole life.  The doc says I have prominent blood vessels on the left side of my uterus and what appears to be adenmyosis.  She says she's very confident it's adenmyosis without having an MRI, of which both MRI and hyster costs the same.  I have severe pain and discomfort three days of the month from menses.  Severe bloating, so much I can barely walk, and I can not eat or it makes it worse.  I'm 5'5 and weigh 130 with very little body fat.  Doc suggests a hysterectomy, just uterus and cervix and to take the BRAC test to see if I carry the ovarian cancer gene, if I do, then the ovaries will go too.  It seems it's a shared opinion among docs that women do not go thru menopause if keeping the ovaries.  From what I have been researching, this is not the case.  When taking the uterus out, you cut the main blood supply off to the ovaries, therefore the ovaries will not create the same amount of estrogen as they did before, therefore, sending a woman into a premenopausal state.  SO, I've been doing a lot of research to find an alternative way to treat the adenmyosis.  One of which is the bio identical progesterone cream.  I have a feeling my current OBGYN is not going to be on the same page as I.  One side effect the bio identical progesterone cream has is it affects the lobes in breast tissue making your breasts more dense.  I already have very dense breasts that require ultrasounds instead of mammos.  I had a scare last year because of how dense my breasts are, but all turned out fine.  I'm concerned about cancer as it runs high in my family.  Anyone have any experience with progesterone creams or the effects of hysters?
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Avatar_f_tn
I have also recently been diagnosed with adenomyosis after months and months of pelvic pain (sometimes an ache, sometimes a burning sensation).  I'm not keen on the hystorectomy idea either and am trying a vegan-type diet.  Apparently avoiding all the hormones in animal products and other foods can offer a lot of relief.  Has anyone else tried this?
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