Adenomyosis in middle age?

Adenomyosis' cause isn't known for sure. But research points to its origin being genetic or herditary; either it is passed from your parents or it occurs during fetal development. For me, it seems to run on my mother's side of the family. While not known for sure,  because it isn't widely known as a condition; also because older generations didn't talk about these kind of things. Look at your female family members, is it common trait of hysterectomy or even ablation of the uterus. You might see it there. 

So adenomyosis didn't just pop up, but it is likely you've had it for a long time, but the symptoms are now obvious. If you read through the symptoms, you'll probably see symptoms you've had for years; I  could explain my back pain away, for example, because I had been in a couple car accidents. I've had severe back pain since 15. When I woke up from my hysterectomy at 30, the first time I noticed was my back pain was gone along with the sense of pressure on my back. 

Current research suggests that adenomyosis is present when we are a fetud at week 6. when our Muellerian ducts either continue to the default female parts of uterus and upper vagina or become testes in the presence of a testosterone like hormone that prevents a uterus forming. Ovaries are firmed by a different process.

Something goes wrong with signaling from several genes at this stage. The genes are supposed to tell cells "be a heart cell and go here" etc. Adenomyosis is confined to the uterus (inside of it). Endometriosis works in a similar way-"foci" or "prelocatuons" that can become lesions from a fetus to age 80. Endo has been found in over 100 stillborns and less than 1% in men.

In short, we are born with it. Some suffer from it, others don't know they have it.

MRI can image it, making the uterus look bulky.

The only know treatment is a hysterectomy (just uterus and cervix removal). Those who kept their cervix report still having mini periods. I had my hyst at 28 and felt better upon waking.

Just a note-those who have adeno, don't necessarily have endo and vice versa. I had both at birth and began to suffer at age 10.

 

Hope this helps you :)

An adenomyosis diagnosis cannot be done without surgery. Period. It can be suspected, but not confirmd. There is a HUGE difference. An MRI cannot confirm adeno (or endo for that matter). Why? Let's take a look and compare the basic definitions of endometriosis and adenomyosis:

1.Endometriosis is endometrial tissue located outside of the uterus. It may or may not cause pain. Endometrial tissue is "supposed" to remain within the uterus. This tissue reacts to your hormones. It swells and shrinks, it bleeds, and in women with endometriosis it tends to take on a life of it's own. It is alive! It grows / multiplies like a weed inside a woman's abdomen (and in some rare cases, it even makes it's way to the lungs, brain and other areas). It can wrap around internal organs and "try" to strangle them - which can be extremely painful. It can cause contractions similar to that of a woman in labor (it can even be more painful than giving birth in some cases). It can cause infertility, pain during intercourse, painful periods, in some cases it can even cause debilitating pain every single day. It can cause problems with your intestinal tract that are similar to food poisining. It can make you bloated & moody. It can give you extreme headaches. It can have a lot of horrible effects on your entire system! It can even wear your immune system down so you get sick more often (some women are even misdiagnosed as having chronic fatigue syndrome/ disorder due to their extreme fatigue).

It cannot be diagnosed without surgery. Usually doctors will perform a physical exam and an ultrasound to rule out other possible causes of the patient's symptoms. But endometriosis cannot be confirmed until surgery is done, tissue is removed and a pathology is done on the tissue. A pathology analyses the tissue to see exactly what type of tissue it is- so that the doctor can confirm the tissue is endometrial tissue. Some women have "adhesions" or scar tissue- which can cause similar symptoms... Only through a pathology can the type of tissue be determined...  Endometrial tissue is "soft tissue" = which means since it is neither muscle or bone, & it is almost imposible to detect with an ultrasound, MRI or exray. Almsot? In some extremely rare case an unidentified "mass" will show up as a "shadow" or displacement of some sort... For all intensive purposes, in most cases, nothing will be dedectible outside of surgery. For this reason both endo typically goes undiagnosed for an average of 9 years. (I myself didn't get an "official" diagnoses for over 20 years.)

 

2.Adenomyosis is an overgrowth of endometrial tissue within your uterus. What is the difference? Your uterus is where, should you get pregnant, the fetus will grow. An overgrowth of endometrial tissue within your uterus can prevent an egg from correctly implanting, and can cause miscarriages. With endometriosis the tissue grows like a weed in your abdomen, whereas with adeno, it grows like a weed only within your uterus. Adeno can lead to most of the same symptoms as endo, but, you can also have an "enlarged" uterus. Some doctors feel like they can get a better idea of whether you have adeno by trying to determine if your uterus is enlarged through non-surgical methods. Bottom line? There are other reasons why a uterus can be enlarged and you can still have adeno if your uterus isn't enlarged. The best surgeons in the world will all tell you - you cannot diagnose either endo or adeno outside of surgery and a pathology. Added tests only add to costs...

Both diseases tend to worsen with age and are more likely to be taken seriously by medical professionals when the woman hits her 30's.

Adeno is more likely to cause back pain and pain radiating down the legs. It can even cause cramping and spasms that radiate down the legs. It is often difficult for the patient (or doctor) to be able to diferenciate between the different types of pain- since they slowly worsen over time and the patient has basically not known anything outside of their experience. It is hard to put into words! When you have only lived in your own body - it's hard to explain what it would feel like to a healthy person... The fact remains - adeno & endo cannot be diagnosed unless tissue samples are taken and analiysed.

Treatments:

A.Endo: The best treatment for endo is excision surgery by a skilled "excision" expert. Most gynos will tell you they "specialize" in endo. They don't know what they are talking about!!!!!! Only a handful of surgeons in the entire world can skillfully perform an excision surgery. Most surgeons perform "ablation" or "laser" surgery, which in most cases only leads to the endo groing back. When it grows back it is typically MUCH worse! A laser only "zaps" the endo on the surface, so when it grows back, it has to push through scar tissue, which causes more pain! A skillful excision surgeon cuts the endo out by the "root". Since endo is alive and it multiplies and grows, every single little tiny itty bitty bit must be removed in order for the patient to be cured (yes, some cases CAN, and if fact, ARE, cured! I am one of them. Modern medicine will tell you there is no cure! This is NOT TRUE! Some cases can be cured!).

B.Adeno: The only cure for adeno is removal of the uterus. Which means? (this isn't pretty or nice, but I am cutting to the chase here) You cannot have children with your own body once your uterus is removed. If your surgeon can save one of your ovaries (or both) you can freeze your eggs and have (a) biological child(ren) using a serogate. Eggs should be frozen no later than 45 years old, but the earlier the more viable (or the more sucsesful you will be at having biological children). It is expensive.

Adeno treatment: PSN: A presacral neurectomy cuts nerves to your uterus. This can sometimes decrease the pain. The nerves can grow back, requiring additional surgeries to cut the nerves again. Cutting the nerves to the uterus can have negative consequences including but not limited to: incontinence (peeing your pants), and / or loss of sensation to defecate (you don't know when you have to poop), and / or loss of ability to orgasm... But it allows the patient to POSSIBLY have children with thier won body. The surgeon should "clean out" your uterus while doing surgery to cut the nerves, so that excess tissue is removed and pregnecy complications are decreased.

C.Treatment for both adeno and endo:

1.Taking birth control continuously and skipping the "off" week can lead to a reduction in pain. Adeno patients are more likely to need to be on a birth control that has the same amount of hormone in every pill and is a "cobination" pill. What does that mean? Most birth control changes the level of hormones week to week. This can be a horrible thing for women with endo an / or adeno. When the hormoned dip to a lower level it can cause breakthrough bleeding, pain, moodiness, fatigue, you name it. Even methods like NuvaRing do not distribute an even amount of hormones into the patient daily. Combination pills have been proven to be more effective for reducing adeno pain. Orthcyclin is both a combination pill, and a pill that delivers the same level of hormones in each "active" pill. I highly recomend it continuously for women with adeno. I tried everything and it is the only pill that helped me. There IS a generis version, but it made me nauseous and wasn't as effective for pain relief.

2.Excercise: We are talking SOME amount of cardio every single day ladies!!!!! Cardio helps regulate hormones! You don't have to run ten miles a day. Getting your heart rate up for t least 20 minutes every single day will reduce your pain levels. Do what you can do, whatever that means for you. If you can run 40 miuntes eery day = go you! If you can walk slowly 10 minutes - go you! Do the best you can do! If you can't walk or run - but you can lie on your back on the floor and move your legs as if you are riding a bicycle for 5 minutes - do it! You know your body better than anyone else and the idea here is to get your heart rate up for as long as you can (20 minutes- 60 minutes is a great goal). Start wherever you are and don't get discouraged! Every single little bit of activity will help in the long run. If you are having severe contractions - try again later! Some people find that activity will dramatically increase the severity of contractions. Don't give up forever! Wait until they subside (whether that means an hour a day or a week for you) and try again!!!!

3.Diet:

A.Look up foods that are anti-inflamatory! Cherries, tumeric, herbs... Anything that is anti-inflamatory should help ease your pain. On this same point - things that are known to be inflamatroy should be avoided! Like? Alcohol (I know, bummer, right?! If you are going to drink, at least drink red wine, as the resveratols have been shown to positively affect endo). Non organic milk and dairy can cause inflamation.

B.Steer clear of soy (edemame). It increases estrogen. It is NOT your friend, even organic! Check your vitamins! Often vitamins and supplements contain soy!

C.Avoid corn and other likely GMO foods. GMO (geneticially modified organism) foods have been shown to cause digestive, abdominal, and frtility problems. Corn and soy are the 2 foods most likely to be GMO.

D. Only eat grass fed beef if you eat beef. Only eat grass fed butter (kerrigold) if you eat butter. Grass fed products contain high levels of Omega 3's which are wonderful for your mood and for decreasing pain in your body.

E. Avoid caffiene like the plague. This include ALL chocolate except for white chocolate. Skip tea & coffee unless they are decaf.

F.Check into Kratom. It is legal in most states! It is a natural, healthy, pain relieving herb. It has narcotic - like effects, so talk to your doctor and research it before jumping in and trying it. It isn't for everyone (but most people find that they would rather take it than narcotic pills). Buy it from reputable sources ONLY. Don't buy it from some random person on facebook. People (I'm one of them) have been poisoned from doing that...

G. Talk to your doc about medicl marijuana if it is legal in your state. Be careful as some strains will actually make adeno cramping worse. You are looking for a strain that helps relieve muscel spasms...

H. Drink something hot. I am sure you know that heating pads can help endo and adeno. Well this follows along that idea - you don't want to burn yourself of course, but drink some hot water as hot as you can stand it without burning yourself. Some people like plain decaf chamomille tea. Some people like hot water with lemon (some people find that lemon makes them worse, but just plain hot water does the trick)... Some people like decaf hot chocolate...

4. Massage: Back, leg, and other area massages can be effective for adeno and endo. Be careful - a massage can make you feel worse. Don't be afraid to speak up and tell the person giving you one that they are not in the right spot or that they are using too much force!

5. Muscle Relaxers- talk to your doctor about muscle relaxers. Some can even be called in over the phone so you don't have to go in for a visit (saves money and time). Valium can even be inserted vaginally, which some women find to be more effective...

Sorry this is so long and I appoligize if I have a zillion typos! I've spent all this time writing this to you (and others) here because I care. I suffered from 12 years old until I was 35. I wouldn't wish what I went through on anyone and I'm here to help however I can! Some women who have suffered through these disease find that they end up knowing more than most doctors as they live... I am not a doctor! You should run all these things by your doctor, but at the same time, please understand that no one has all the answers. Everyone is different and what works for someone else may not work for you. Moderm medicine is also extremely lacking in their ability to treat these diseases. Many doctors, for example, will tell you there is no cure for endo (which just isn't true. Some cases can be cured. No all cases, but some.) I highly recomend The Center for Endometriosis Care's website and resources. They are world renowned for their exceptional care and they have been "on the cutting edge" when it comes to treatment for endo and adeno for decades. I do not work for them and I'm not associated w/ them. Dr. Kenny Sinervo performed my excision surgery and my partial hysterectomy and now I am completely cured of both endo and adeno. The Center offers financial assistence. Also serch for endometriosis and adenomyosis support groups on facebook. There are a few that have tousands of members (if not tens of thousands) that I found to be very helpful. Nancy's Nook & Endometropolis are good... Big hugs!

Hi Rebekah, great post! how you and  doctor Sinervo decided a partial hysterectomy (keeping your cervix) was a good choice for you? I know this an old post. Hopefully you may see this!. Take care and thanks!