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Posted 8/6/2007 2:52 AM (GMT 0)
mad  I have been diagnosed to have adenomyosis and endometriosis. So far three Obs & G have advised me to do a surgery to remove the ovarian cysts as well as the uterus. But I am only 41 year-old, would like to keep my uterus. Pls help!

Andrea, 41-year-old

Has 3 ovarian cysts at left ovary & adenomyosis

Posted 8/6/2007 5:30 AM (GMT 0)
sck-I'm going through this too as you can see the thread right next to yours. It is horrible. I am only 31 years old. Do you plan on having more children? What is your reason for wanting to keep your uterus. It is my understanding that as long as you can keep your ovaries, you don't go in to menopause. I am not having anymore children so I would rather have my Dr. tell me she'll recommend the surgery rather than try a bunch of meds with side effects. I am very new to this. I haven't even been diagnosed because my dr. is hesitant to do a laproscopy b/c I have Crohn's Disease. Pretty much anything else it could be though, has been ruled out and my pain fits perfectly. Also runs in my family. Let me know what you know and what you decide, I need to learn about this. I have become an information expert of Crohn's Disease in the last 15 or so years, I didn't know I would need to become an expert on another...it's exhausting.
Posted 8/6/2007 5:51 AM (GMT 0)
Thank you, Dawn for replying. I prefer to keep my uterus because I am afraid of the surgery. Being a Chinese, I would opt for alternative medicine but not be able to find a good one in my country, Malaysia. I have done acupuncture and took some Chinese Herbs, but it did not seem to help.
Posted 8/6/2007 6:08 AM (GMT 0)
sck, welcome and sorry to here about your problems, i had a hest. and it was the best thing i could have done for my self, and i was already done having children. ''so really look in to it.'' welcome gramee! my pain has been low since they put me on the methadone, and the pain pachtes work good for me most of the time and still no diagose on my pain yet! OHSU is still testing me. and may i ask what is Adenomyosis & endometriosis? never herd of it. love packey
Posted 8/6/2007 6:36 AM (GMT 0)
Dear Packey, what is hest.? adenomyosis is a condition whereby the endometrium grow deep into the uterine wall causing enlarged uterus. Endometriosis is a condition whereby endometrium (uterine lining) grow elsewhere in the abdomen like ovary, rectum or colon. For these two conditions, the symptoms are painful period, cramp and heavy bleeding. In my case, it is quite bad, to an extend causing me aneamic.
Posted 8/6/2007 7:51 AM (GMT 0)
I think Paceky meant "hist." for hystorectomy?? maybe?
Posted 8/6/2007 1:37 PM (GMT 0)
Hello sck.  I had the exact same problem that you have, and chose to have the hysterectomy when I was 39.  Losing the uterus is an odd mental thing for we women.  I had tried for so many years to conceive, and age 40 was my own deadline for giving up.  Like you, the symptoms got so bad that I had the surgery a year earlier than I thought I would.  I also thought I had made peace with the idea, but no.  It's almost a mourning period that you go through because your reproductive years are so thoroughly, and finally, over.  I didn't expect to feel that way.  Thankfully, it didn't last long.  As I recovered from the surgery, life got so much better, and I don't miss that uterus one darn bit!

My only regret about having the hysterectomy was that I didn't argue hard enough with the doc about doing it vaginally with the laparascope.  I had the open procedure with the bikini cut low in the abdomen.  Recovery with the vaginal procedure is less than half the time of the open procedure.

I understand how scary the thought of hysterectomy (and any major surgery) can be.  Try to remember that you will only get worse if you don't do it, and you have everything to gain by getting it done.

 

Posted 8/7/2007 6:04 AM (GMT 0)

Hi, Andrea.

I also have endometriosis and adenomyosis, so I definitely relate to your problems.  I'm in my mid-30s, and much like you, I do not want to have my uterus removed.  Even though the hysterectomy would most likely help my pain, I really want to have children.  Once I've had a child though, I will most likely make the decision to remove the uterus.

You mentioned that you are afraid of the surgery.  Do you mean that you're scared of the procedure, or do you mean that you want to keep your uterus?  If you're scared of the surgery, I can reassure you that it isn't a bad procedure with today's technology.  One of my friends recently had a hysterectomy performed vaginally, and she had a very fast recovery.  Surgery is scary.  But, sometimes, it is worth facing the fear to achieve a life filled with less pain.

Many doctors definitely push women to have hysterectomies, but the ultimate decision should always lie with the woman.  Whatever you decide, there are options to control your symptoms.  The pain and excess bleeding associated with adeno and endo is indeed horrible, so it's very important to find ways to control both problems.

Have you tried any of the hormonal treatments for endometriosis?  Continuous birth control pills provide relief to many women.  You stop having periods, which helps quiet adenomyosis problems.  Also, I've met many women that have had a great deal of success with a drug called Depo-provera.  (I imagine that it's available in Malaysia too.  Basically, it's an injectable form of the hormone progesterone.  It is usually used as a birth control method.)

Lupron is often used by gynecologists in the United States to control endo and adeno, but the side effects can be awful.  You can only take Lupron for six months at a time, and usually, the pain returns after it is discontinued.  Thus, Lupron isn't considered to be a wonderful medication for endo by many people (including myself).

Adenomyosis is very difficult to treat.  Is your adenomyosis diffuse, or is it localized to one area in your uterus?  If the endometrium is diffusely located throughout the muscular layer of your uterus, the only way to eradicate the pain is to have a hysterectomy.  Occasionally, the endometrium will be localized to a small area in the muscular layer though, and when that happens, a surgeon can excise the adenomyosis and preserve the uterus.  Have you ever had a MRI?  That can sometimes determine if adenomyosis is diffuse or localized to one location.

Concerning your ovarian cysts, are they endometriomas?  Endometriomas are cysts that form as a result of endometriosis, and they're filled with old blood that resembles chocolate.  (They're often referred to as "chocolate cysts" for that reason.)  If you have endometriomas, it is important to find a surgeon that is experienced in endometriosis surgery.  Often, gynecologists will just drain the cysts and leave the remnants of the cyst behind.  When that happens, the cysts quickly refill with blood after surgery, leading to a woman developing multiple cysts on the same ovary.  It is vitally important for the surgeon to remove the entire cyst and not just drain the fluid.  Three years ago, I had a huge cyst on my ovary, and my surgeon spent a long time dissecting it from the ovary.  She was able to remove the entire cyst, and it has not returned.  Have you had surgery to remove the cysts from your ovary? 

If you have not yet tried any hormonal medications, like birth control pills, I highly recommend that you give them a try.  You may be able to manage your symptoms so that you can avoid a hysterectomy.  Another option is to have a uterine ablation performed.  The ablation removes the endometrium lining from your uterus, thus stopping mentrual flow.  You will be unable to have children if you have an ablation performed though. 

Do you take iron supplements to help with your anemia?  If not, that may help you tremendously.

I hope that I've helped.  I definitely understand what you're going through right now.  You are not alone.  If you have any questions, please let me know.  Take care of yourself, and stay strong. 

Best wishes, and good luck.

 

Posted 8/8/2007 3:44 AM (GMT 0)
Hi to all of you.  Boy, there are some knowlegeable and smart folks on this site!  Thank you all for the information.  I just wanted to add my two-cents.

I have had three c-sections.  During all three pregnancies (at one point or the other), I suffered a placental abruption.  With my first son, I had a complete abruption at 35 weeks and both my son and I almost died.  We both recovered.  During my next two pregnancies, I had a partial abruption and was on bed rest during most of both pregnancies and then had sections at 35 weeks.  After all of this trauma, I had many, many adhesions.  I also had severe ovarian cysts on my left ovary.  Needless to say, I have suffered with abdominal pain for awhile.

Last June, I started having migraines and at about the same time, the cysts on my left ovary got so out of control, I ended up having it removed.  Having the ovary removed didn't do a thing so in January this year, I had my uterus and most of the other ovary removed.  My doc left enough of the ovary to save me from having to have hormone replacement.   My hysterectomy had to be done with an incision from hip to hip because I had so much scar tissue.  I had one piece that was 3 inches thick and almost 9 inches long.  My doc said he has no idea how I ever got pregnant the last time (during my last c-section, he looked for my fallopian tubes just to see how they looked and there was so much scar tissue, he couldn't even find them). 

Anyway, the pain is better but still have pain in the lower left side of my abdomen that radiates around to the back.  The hysterectomy made absolutely no difference at all in my migraines.  But, I would do it all again.  I do believe I feel better and not having a period is awesome.

Anyway, just my two cents.  The one thing I can say is that there are many who are not candidates for laparscopy or vaginal hysterecomies but many are.  If you are thinking about having this surgery, please talk in depth to your doctor to find out how he will be performing the surgery, length of recovery, chances of pain reduction, etc.

Have a great night. 

Posted 8/8/2007 6:36 AM (GMT 0)
Thank you Luvdogs & baseballmomof3 for sharing & encouragement. To Luvdogs, I wish to know what happened to you eventually. I mean the whole process of your treatment. Hope to hear from you.

Thanks.

Andrea
Posted 8/16/2007 5:27 PM (GMT 0)
SCK,
I Have adenomyosis, adenomyomas, and cysts on my ovaries. I have had very painful and heavy periods for many years, actually for as long as I can remember. They were getting worse and worse, longer and longer. I couldn't keep my blood count up, even being on iron 3 times a day. These actually showed up on the ultrasound. My periods started to last 2 weeks.I could not use any of the medications because of a history of a blood clot. I decided to do the uterine ablation. My gyn doctor, said I was too young,(at the age of 40) to do a hysterectomy. I was already done having children, and knew that after having the ablation that you couldn't have any afterwards. I had the ablation done a year and a half ago, and it was the best thing I did. I still do get my period, but it is really light, and lasts less than 3 days. I still, unfortunatly, have bad cramps, and that is my only regret is that they did not go away. My blood count is back to normal, and have been off of the iron since 3 months post op. I am glad that I didn't wait to see what would happen and had the surgery done. It was well worth it.
Posted 8/17/2007 2:03 AM (GMT 0)
Thank you wishful for your good sharing. I wish to know, if you only do uterine ablation, how did you take care of the cysts? Did you also do a laporascopy to remove the cysts. My gynae's point of view was since I have done with my child bearing, there is no point keeping my uterus even I am only 41 this year. He would do a laporascopy surgery to remove the cysts as well as the uterus.

Posted 8/20/2007 12:07 AM (GMT 0)
Hi Andrea,

I too suffered with these 2 conditions for many years.  After hemorrhaging many times and researching alternatives, at age 35, I had a vaginal hysterectomy.  Since then I have been in horrible pain and drs. aren't sure what's causing it although a laparoscopy performed  showed I still have endo.  The operation itself and recovery, while painful, were short and long forgotten.  My sister who also suffered with the same conditions went the uterine ablation route first and ended up with a hysterectomy in the end. 

I'm trying to let you know that a hysterectomy relieves, if not cures, these conditions. Are you in pain?  Perhaps you could have a gynecologist remove the cysts through laparoscopy and see if this helps first.  There are also many, many medications for these.  I understand your hesitation for major surgery :-)

 

Posted 8/26/2007 7:17 PM (GMT 0)
SCk,
Sorry it took so long for me to reply. The cysts are still there. He did not want to do anything with them yet. I have been getting ultrasounds to check on them. I had a laporoscopy many years ago(about 20) to have a cyst removed. They actually thought it was my appendix, they removed that while they were in there, too. I still get the pain during my periods, although not nearly as bad, and my periods are very, very light and short. I am done with my childbearing also. My doc would not do the hysterectomy, like I said, he said I was "too young". I was 38 at the time and am 40 now. If it gets bad again. I will push for the hysterectomy. I also have another problem that played into the picture of why the hysterectomy was not done immediately, I have RSD(reflex sympathetic dystrophy). Having anytype of surgery is not good because it can spread to that area. So we tried the least invasive surgery first. I know that the only true "cure" for adenomyosis is a hysterectomy, but my ablation did work very well for me so far.
Posted 8/27/2007 3:05 AM (GMT 0)

Thank you, Wishful for responding. Have you ever tried alternative medicine for endo & adenomyosis? There are some literatures on Natural Progesterone Cream etc. Have anyone tried it and give good results? I hope to get some feedback on this. Thank you.

Andrea.

Posted 9/11/2007 2:37 AM (GMT 0)
I am new to all of this. I have had so many issues in conceiving and giving birth, its all a blur. I have had 3 c-sections. My second child came at 33 weeks 6 days as a result of placental abruption/hellp syndrome. He only survived for 2 months. I recently had another child and have been bleeding randomly with lots of pain off and on since having her in february. Finally in July after bleeding like mad for 2 days (I had just been bleeding 10 days before), I went to the doctor. That is when my oddessy with all of this began. After pelvic exams, ultrasound and that awful MRI machine, I was confirmed with adenomyosis. On my last pelvic exam, last week, my gynocologist said my uterus was measuring the size of a person 3 months pregnant. I too have lots of scar tissue and stuff so my doctor said that a hysterectomy would be done the open way on me. I am 36 years old and done having children, its dangerous for me anyway. I have opted for the surgery and it looks like it is tentatively scheduled for Novemer 26th. Any advice on questions I should ask, etc? Will this make me perimenopausal?
Posted 9/13/2007 1:18 AM (GMT 0)
Sck,
I have never tried the natural progesterone before, but was on progesterone tablets for many years to control the bleeding that I was having. They had to keep increasing the dose that I was on. Even with the progesterone, I would continue to bleed heavily. I could not take the combination estrogen and progesterone pills(like birth control pills), because I have a history of a blood clot. The progesterone pills did work for a long time before they became ineffective on me. I no longer am taking them since the ablation, since my bleeding has decreased so much.
Denise
Posted 9/13/2007 1:34 AM (GMT 0)
JDen,
I am very sorry to hear of your loss. I am a neonatal intensive care unit nurse, and have cared for preemie babies such as your son. Congratulations on the birth of your daughter. You must be happy. The only real cure for adenomyosis is a hysterectomy. I understand why they would be doing your hyterectomy via abdominal way, with a history of 3 c-sections. Your question of whether it would make you perimenopausal or menopausal depends on whether or not they are taking out your ovaries with the hysterectomy.If they are taking them out during the surgury, then it would make you menopausal. If they do not, then it would not. The ovaries are what secrete the hormones, so if they are still there, then they will still make the hormones. Some other questions you might ask are, how long are you going to be in the hospital? What kind of pain control are you going to have afterwards? What type of Anesthesia are they going to give you, general, epidural, or spinal? If they give you an epidural or a spinal will they give you pain medication thru it post op for pain control? ( that works wonderful for about 24-48 hours in alot of people), How long will the urinary catheter be left in? When will I be allowed to eat after the surgery? These are just basic questions. I hope this answers some of your questions. Good luck with your surgery. Enjoy your little ones. Let us know how it goes.
Denise
Posted 9/13/2007 3:16 AM (GMT 0)

Thank you so much Denise.  So you are one of those angels in NICU. God bless you.  My youngest was in NICU as well but only for 8 days and then I fought to bring her home.  My son was in NICU for 6 weeks before we moved into hospice care.  They were wonderful as well, they prepaed a nice little private room for us with a crib and a bed so I could stay there with him. 

They are leaving my ovaries in.  The doctor said that my recovery would be similar to my c-section, about 6 to 8 weeks especially since I have extensive scar tissue.  she said I would be in the hospital for a few days but I will definitely ask for more definitive answers because I have arrangements that must be made.  The question about anesthesia is a great one, I will be asking that asap.  I got a spinal for my las c-section, I was not expecting to be awake, it was the worst experience!  I never want to go through anything like that again.  So if I can get general, that is darn sure what I want.    Again, thank you for answering me.  I am sure you will see a lot more of me on these boards in the coming months.

JDen smurf

Posted 9/15/2007 2:34 AM (GMT 0)

JDen, I feel your pain.  sad    I'd had several abdominal surgeries prior to the big open hyst, and only thought I knew what i was getting myself into by agreeing to have the open procedure as opposed to the vaginal hyst.  If I remember correctly, I was catheterized and bed-bound for 2 days post-op, with "air socks" on my legs.  The socks were funny the way they'd blow up and slowly flatten out over and over again.  Great for the leg circulation while you're stuck in bed, and BONUS! they're warm.

I had a constant small amount of demoral in my IV and the PCA machine if i needed extra.  Took me a while to figure out that my urine retention was due entirely to the pain meds.  UGH!  Nothing like cramps from a full and angry bladder to keep you up at night.

The thing I most remember was the absolute fatigue that lasted for a full 8 weeks.  It only took a few days for me to start wanting to move around the house and grounds, and all at once my body would be screaming for a nap.  Me?  A nap?  No way!  I NEVER take naps.  Well, then I did - a good 2 or 3 of them a day.  Even though the outside incision seems to be nearly fully healed, you have to remember there is still a whole lot of healing going on inside, and that healing needs calories.  I ate very well during those weeks, and expected to gain weight because i was doing so little physically.  Turns out I actually lost 10 pounds.  After the first couple of weeks, i also found that B-Complex 100 vitamins helped noticeably with the energy and feelings of narcolepsy.  ;-)

You just have to go slow and do what your body tells you to do - like SLEEP!  NOW!  :-D

I have to mention a complication that happened to me.  I ended up with huge, ropy adhesions (scar tissue) all over my intestines that caused several obstructions.  Three months later, I needed a pretty long sigmoid colon resection because of the damage the scar tissue had caused.  Even with all that, I was, and am, still very glad to have just gotten rid of that uterus and don't miss that thing one little bit.  Hope it all goes very well for you!

Posted 9/17/2007 12:59 AM (GMT 0)
Thank you so much Jen:
I am going to show your post to my husband because I just don't think he truly has any real concept of what is about to happen. I really apreciate your frankness about the whole process of what you went through.
Posted 9/25/2007 9:11 PM (GMT 0)
hi everyone! I'm new to chat rooms, so i don't no what I'm doing but hear it goes!
I was diagnosed with adenomyosis after 2 operations. For years I had suffered years of heavy and painful periods and was given painkillers and put on the pill, i thought this is what happens to every woman. at the age of 27 i had continuous bleeding for a year, every day i would have a deep ache in my stomach i was taking painkillers to no avail! I eventually got the courage to ask my Dr. could i see a gyne. i had a scan and i was told i had a Hugh fibroid and hysterectomy was the only option, i got such a fright! i was young, in a long term relationship with no children i needed a second opinion, i went to a specialist, i was told they would operate womb was a complete mess, but they decided to try me on a drug that did shrink the mass, (my womb was the size of a 16wk pregnancy!) they tried to operate again, but it failed. they told me that my chances on becoming a mum are very very slim. and that I.V.F. wouldn't work. yes i have my womb so maybe one a miracle will happen. sometimes when the pain becomes unbearable i do think of hysterectomy, but the thought of never being pregnant is just as painful. can someone tell me if they were told they cant have children because they have adenomyosis?
Posted 10/1/2007 9:19 AM (GMT 0)

Hi, Star,

From my research, adenomyosis will not stop you from conceiving, in fact, if you conceive, the adenomyosis will improve because the moment you conceive, you will not have period, that will relieve your uterus from bleeding due to adenomyosis. Endometriosis will reduce the chances of conceiving. You did mention you have fibroid, I think you must try to ascertain what you have is adenomyosis or fibroid. Adenomyosis usually happen to woman after 40!

Andrea

Posted 10/8/2007 1:36 AM (GMT 0)
Hi everyone!

wow. there is a lot happening here. I just looked up endo though I've been on the site quite a bit in the past five months due to Ileostomy. I had my 2nd set of surgeries for extensive endometriosis starting in april 2007 and I just wrapped up my 6th and final procedure last week. I am in my late-20s and i have kept all of my reproductive organs. i chose to have minimally invasive procedure through videolaprascopy and i am very, very thankful to have taken this route. I did have a colon resection that was complicated by bouts of bleeding and led a rectovaginal fistula, ileostomy, fistula closure and ileostomy reversal. For the first time in about 15 years I am endo-free and I can *feel* it.
Posted 10/8/2007 4:59 PM (GMT 0)

Hi All,

I just joined this site today, and was reading over many of the comments. I found alot of this helpful, but I really NEED YOUR INFO AND HELP!

I just passed my RN-NCLEX recently, so this may seem odd that I am asking questions like this, but to be honest, I do not know alot about this subject.

I am 29 years old, and I just got diagnosed with adenomyosis and also during a u/s they found a mass on my ovary that the ob says "needs to be removed now, because it recieves blood flow." I however have no insurance at this time because I am in the process of getting a job at the hospital now. I am afraid, because the ob kept saying "because of your age, the chances of you having cancer are rare." well. I know from experience in the hospitals that young people get looked over all the time when they REALLY in fact have problems. He also told me before the u/s that he did not think I had anything but cysts because of my age. Then he found adenomyomas.

Now, here are my questions. I have three children, but I am divorced from there father- I am now with a wonderful man who i love very much. I thought that I was done having children, but he only has one daughter that was born while he was serving in the military...he hardly gets to see her (mother lives in tx.) We both love all the children soooo much, but he wants another. he is 26 years old, so hearing this was hard for him. I have read up on adenomyoma and asked fellow nursing pals, half say I wont have a child again, the other half say it is possible. I am very thankful for the children that I have, and if I cant, well then I will have to accept it i guess. I have THREE BOYS and I love them dearly. BUT WILL I EVER BE ABLE TO CONCIEVE AGAIN?

Now, my doctor has not said that he wants my uterus removed. he told me it is enlarged, he also said that i DONT have endometriosis. He stated that I just have "some pockets of adenomyoma" . he is more worried about my mass for now that needs to be removed. Now my symptoms were having periods anywhere from 20-23 days apart, they are heavy, no big clots though. I have some pain during intercourse and some mild cramping during menstration. the reason I went to see the doctor is because I would get two periods a month sometimes, and wanted to find out. I am very scared that he will tell me I need my uterus removed at the age of 29!!!!

Thank you for listening.

Shanna R.N. that is scared!!!!! lol

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