Glands In The Uterus.. Pathology Report

HELLO GIRLS!
I wanted to ask a question.. I'm post op 8 days today and when I saw my doc to get the staples removed yesterday... remember I had a TAH/BSO... she said the pathology report was at her other office... and I will get the copy next week when I go again but ...she said some medical term for GLANDS IN THT UTERUS being embedded and channeling blood /bleeding into the inner uterus and also the fibroids... what is this gland problem? How can I look this up to research? And she said my uterus was the size of a lg grapefruit... 4 times larger than normal... and this surgery was a really good choice... funny how the sono's don't pick up some things ..GOD no wonder I feel so much better! Gas and bowel movements are a REAL THRILL aren't they???!!!! Now I know that all this time my insides were nestling into a lorge crator in my missing uterus hole!! And Going pp is so much nicer than that pressure! ANYONE HAVE INFO ON THIS?
I FEEL GREAT... but dh Joe better stop making me laugh... His way to keep me happy... I think I popped a stitch or few..... PAIN under the incision at the far right end... know the expression "split my sides " now!! Write me girls I want an education on this ok???
Love Raph ( Trenklet)...
see ya in chat, don't we have some fun???

but was that medical term "adenomyosis"? Plenty of women here with that diagnosis and I bet the search engine yields a lot of hits for you to educate yourself.

Hey Honey you are in touch with forget everything...I haven't a clue what the term was It sounded so foreign to my ears, she said they were goofed up glands inside the- my uterus that were in bad shape and bleeding... no wonder I thought I was dying when I had a period... GOD I'm so glad that is history now! And she said it was very common.... I'll look it up what you said... are they glands? Raph

Thyroid, adrenals, you kno?. I think perhaps she meant implants and not glands when she was relating this info to you and it sure sounds like adeno from what you wrote above. The condition is also called internal endometrosis by some. Good luck researching. This princess is back to bed and enjoying her heating pad.

Raphia, I had the same thing, only my doctor called in "internal endometriosis". The correct name is Adenomyosis. Your doctor's description is a bit childish, and there are some EXCELLENT sites on the Internet put out by the Endometriosis center, a group of physicians who specialize in the treatment of endometriosis. For a very complete, excellent explanation of the problem by a physician who specializes in endometriosis, go to: http://www.centerforendo.com/news/ad...denomyosis.htm

The short story: The only really effective treatment is a hysterectomy. You and your doctor did the ONLY thing that would have helped you. Your problems would never have stopped without a hysterectomy. ALL the literature says that this problem can be suppressed with (massive doses of) the artificial progesterones and Lupron), but whenever those drugs are stopped, the problem comes back immediately.

And the other treatments (Aygestin or other artificial progesterone) and Lupron have horrible side effects. They put me on massive doses of Aygestin for 2 years and it made me gain almost 75 pounds (rapid, uncontrollable weight gain is listed by the manufacturer as a common side effect and an absolute contraindication to continuing the drug. They continued it on me for 2 years until I quit them and went to another doctor), it caused me to have early signs of diabetes (and that is also listed as a problem with this drug--it takes healthy women and makes them diabetics), and I started getting so depressed I became suicidal (this chemical is the one that causes PMS in its natural form in the body). Magically, 36 hours after stopping the drug I would suddenly feel like my old self, and wonder what I had been so depressed about. But then the horrible pain, cramping and hemorrhages would start again in about 5 days, so I would start back on the Aygestin.------For those who never had this disease, the cramping pain of Adenomyosis is as bad as natural labor, which I know about because I had my second baby at home with an Amish midwife.------Then within a day of starting the Aygestin again I would be depressed and suicidal again!!! And do you know what those jerks in my first clinic told me? First the man GYN told me (almost patting me on the head), "Oh dear, you don't want a hysterectomy! Why, that is surgery and it hurts, you could have complications! I WON'T do a hysterectomy because your only problem is you got too fat and that is causing all your symptoms." (As if I hadn't been a surgical ICU nurse for 15 years, like I don't know anything about surgery for heaven's sake!) Then they transferred me to the ***** who just said, "I don't care about your symptoms. Either take the Aygestin or bleed to death." By the way, diabetes is a chronic, always fatal disease. Yes, there are problems post hysterectomy. But none are as lethal as diabetes.

Adenomyosis is more common in women, like me, who had a C-section. The theory on that is that cutting the uterus open lets a few lining cells fall into the muscle tissue where they take hold, spread and grow and bleed internally. They are like hard knots in there. The uterus contracts harder and harder trying to shut off the bleeding. But It would be like trying to use marbles instead of sandbags to block floodwaters. So you bleed bright red blood, just like you opened an artery and let it pour. I kept telling the doctors that this was NOT menstrual blood. I kept telling them "I am an ICU nurse and I certainly know the difference between mucousy menstral blood and blood directly from an artery!" They essentially told me to shut up and go home, I was being hysterical and there was nothing wrong with me. The Adenomyosis clumps act like a wedge in a dam-keeping the blood vessels wide open and just pouring blood. The uterus reacts by cramping down as hard as it can to try and stem the hemorrhage, all to no avail. When you get your pathology report from the hospital, at least one of the diagnoses should be "Adenomyosis".

Nobody really knows why it happens to women who haven't had a C-section--, maybe use of forcepts or other instrumentation into the uterus like a biopsy, or needle aspiration of amniotic fluid or anything that invades the uterus or traumatized it the least little bit. But cells from the lining of the uterus that make the bloody mucus of menstruation (and that forms such a nice bed for our baby to implant on when we want to get pregnant) break off and burrow down into the endometrium, the muscle layers that make up the uterus.

These are the same cells that seed all over the pelvis on women who have true endometriosis. That is why it is classed as a form of endometriosis. I've been a nurse for 30 years and I never heard of this until I quit my first set of doctors and went to a small hospital that one of my nurse friends works at and saw a doctor she told me was their best. After only 10 minutes of interview and a very quick exam where he could see the kind of blood I was pouring out, he told me immediately and correctly what I had. He also told me that the only safe treatment was an immediate hysterectomy. I had my surgery 1 week later.

Raph, when you laugh, cough, take deep breaths or worst of all, sneeze, take your hands or a pillow and push hard into your belly right on the incision. I'm 5 weeks post op and don't have any pain anymore--except for that! This is called, "splinting the incision" and it really reduces the pain!
Mary

OH MY GOD you are describing how I bled.... It is my fault I only went into my doc office and told her I was changing my pads every 1/2 hour and gushing blood and it made me feel absolutely nausious... she was very concerned and so kind to me! A sister who had it too wow!!! MY DOC wanted to give me a hysterectomy in the summer when I first saw her ( moved here to MD and found her) but I said no.... She tried me on activilla to stop the bleeding and after 3 months said ...with my husband there..."you have run out of options" and I weigh 215 lbs too from the **** progesterone too... plus I quit smoking 4 years ago... made me hungry! BUT MY DOC IS A GEM she let me have my way and tried to tell me I was menopausal age anyway but I have this hanging belly and weight and wanted to lose first! Stuppid me! ... I did not have the BS you went through, you need to take some legal action with your "grapes" I would if it were me! I swear to sweet Jesus I would go to the bathroom to pee and change a pad and when I would wipe myself there was blood everywhere, even spilling into my ring on my hand and clots and blood in the toilet bowl and toilet seat and no sink so I could wash to just pull my pants up at work, I would go back to work and have to literally sit down cuz I felt the gushing and knew it would pour down my legs if I didn't sit... how do you tell someone this they think you are crude? My husband, Joe would get scared and sick but I showed him cuz I was wondering if I might die??? He has been telling me for yours to "get it done get the hysterectomy!"The bleeding would stop and start like this for days.... then abruptly stop and then I'd spot and have alot of discharge and spot more till the next period was due and I would just dread it! This kind of bleeding also felt different, it felt like a contracting gush not at all like menstrual pain and the blood was as you said it just as fresh and bright... I'm so shocked someone has lived this like me! I thought it was just menopause coming on or something that would heal.... what a relief to be rid if it.... thanks! you are a GEM too keep in touch... you are all so good in this site! I will keep that pillow handy but I still think I popped a stitch in there ouch! Feeling so much better even in the healing pain... Love from Raph

Just wanted to add my two cents...

((((Raphia)))) & ((((oneofmany)))) I can relate to what you went through with the adeno. I too had it and it was horrible. My hyst was a little over a year ago and it was the best thing I have ever done for myself!!! Great Christmas gift!

I had always had heavy periods since I was 12, so I didn't really realize there was something actually wrong. At 17, my doc finally put me on BCPs to control my periods because I stayed anemic. After having two c-sections, D&C, and a hysteroscopy, it just kept getting worse. The pains did feel like labor & I had to even "push" to get the clots to come out. Other than the clots, it seemed like someone had turned on a faucet by the rate the blood flowed.

For a couple of years, my gyn said he could put me back on BCPs to see if it helped. (I'd had a tubal after last baby and had gone off the pills.) Also, to help with the migraines. This time, it didn't seem to get any better. Finally, he did a vaginal ultrasound & pointed out the "valleys" in my uterine wall that indicated adenomyosis and a hyst was scheduled.

My gyn is an angel. When he showed me the pics from the ultrasound and was explaining it, he also discussed other options. He said I could try hormones, but they would have worse side effects and may not even help at all. Another option was an ablation, but he said that would probably only be good for six months at the most and then I'd still need a hyst. He said if I were his wife, he'd say to skip going through all the other "torture" and just go on straight to the hyst and get well.

s,
Pam

Dearest sister Raphia, you are soooo not alone! I'm sad you had to go through this misery, but awfully glad you had such a kind, respectful and collaborative doctor to work with. This condition is actually fairly common for women who have had C-sections, uterine biopsies, forcepts deliveries, D&C's or any other procedure that invades the uterus. Do go to that web site. It will bring you great comfort--at least, it did for me. I even sent a loving email to Dr. Albee who put that on and told him how grateful I was to him and how much comfort I got from the information he put on there. (In case you lost it, the site is: http://www.centerforendo.com/news/ad...denomyosis.htm)

You were lucky your bleeding would stop when your period ended. Mine never stopped unless I took those massive doses of Aygestin. I didn't have periods really. Or I guess you could say I had just one period--it lasted 3 years. Yes, women have died from bleeding to death from this condition. And some women were let go so far that they had to have blood transfusions before the doctors could even do surgery! That happened to my mother.

And in fact, this may have predated even the traumatic C-section. One theory is that as embryos, some of the lining cells get into the wrong place. Like Dawn, I too had horrible periods from the time I started at 12 until after I had my first baby at 38. That was the C-section without anesthesia. The second baby was born with the help of a lay midwife. No way was I going to let any doctor near me and my new baby after that!

The symptoms pretty much stopped after having the babies and I had the first normal periods in my life after that. Until about 2-1/2 years ago. My guess is that I was perimenopausal and quit producing my own progesterone but kept right on producing gallons of estrogen! That is the hormone that makes us bleed. Progesterone is the lovely hormone that causes the uterus to quit building up blood for the baby. Oh! and it causes PMS as a side effect in many women. I was on doses about 100,000 times as high as the body makes naturally. So of course I had life threatening side effects. But the docs told me they didn't want to hear about my symptoms. Just take the drug we gave you and don't bother us they said.
I would sure like for us sisters to think about some way to let everybody know when a woman has a bad experience with a particular doctor, clinic or hospital so other women would have a warning that THAT guy or THAT clinic won't treat you with respect and won't give you good care.

I seem to be having some phantom pain lately, do any of you experience this? It is like I get a few cramps and back-labor like pain. My guess is that the nerve endings haven't all died and are giving one last hurrah before they go away forever (I hope). My surgery was December 11th, so I'm a little over 4 weeks post op

oneofmany

There is a known relationship between tubal ligation and adeno. I too had it, but like many of the other health professionals I know, I let a few years slide between visits. My hyst was actually for a giant cyst that looked for all the world like ovarian cancer, both on ultrasound and by CA-125 levels. But when the path came back with severe adeno, I should not have been surprised. I had all the symptoms, I just didn't know what they meant.

Anyway, with tubal ligation, the thought is that the endo "burrows" its way into the uterine walls, as it has nowhere else to go. And the correlation is pretty strong -- as strong as it is for those who've had invasive uterine procedures (although I've had two of those, as well).

Take care, and just think: NO MORE PERIODS!

Audrey