oh my godness i feel like Im on a rollercoaster

I will be three weeks out from my surgery on tuesday Already babysitting again probably not the best idea but a friend is in need right now so I can't say no. thankfully mom is going to take the kidos for me tomorrow I have had them on and off for two days now exhausted and the house work is piling up pn me.
It has been so long since i have been this busy I am so exhausted it is in a good way but still not fully healed and my body is telling me its just tired out right now lol I will get through it for sure.I still need to find the rest of the tools i need to do my pt I have a couple of elastic things i need to find and a belt and im good to go yay just have not had time to find them yet maybe tomorrow if I dont use it to catch up on rest lol.
I have been having on and off bleeding on the maraina since surgery yes this is going on thre weeks now and I could be doomed with bleeding until the six month mark on and off right now its more on than off but cant complain i guess pain is less even though I have had a few rough patches just a big adjustmment in so many ways Hoping that I can now make it until june without needing to call in again unless it is for refills on my ibuprophen

another update good news for the most part and not complaining about the bad lol

well we shall start with the bad news which so far is turning out to be better news I was bleeding this morning probably due to mybody needing to adjust to the maraina nut i was told ny my doctor to call if i had anything more than light bleeding in case i need monitoring because i have a history of heavy bleeding which she has unffortunately whitnessed lol. Bit it has now stopped after two days so happy news is i don't need to be seen the nurse i spoke to said if it had not stopped in a week i would need to be checked but i think it knew i called or something lol.
the good news on the part of the femal stuff very little cramping with the bleeding right now hoping it stays that way but it can be so unpredictable I have been up and about for a few days now really starting to get back to being myself man I didnt realize how much i messed being able to do stuff even the simplest things I vaccumed the floors today for the first time post op and for the first tiem in a long time it did not hurt a weird reason to want to but i felt the emotions start flowing of course the good ones I just want to get back to regaining strength i have lost over the past year due to multipule things mostly being less active because of the endo a very detramental thing when it comes to the CP unfortunately I am having difficulties getting back to where i want to but life is work and has been since day one I am not going to give up without fighting the whole way.
I am dealing much better with the fact that i have had to lose part of my femaly anoatomy since i know it has helped some evein if it is just for a short tiem being able to fully enjoy life is worth it. Lots of love to all my dedicated readers and for those of you out there with endo who have not found relief keep holding your head up you are all in my prayers this desease has changed my life in so many ways

Post op update

Had my post operative appointment this morning things are going well maraina is cooperating for those who may not know that is an IUD that stays in place for five years yay no more needing to fill perscriptions every month thank goodness the left sided ovary pulling pain is gone completely happinesss and she only found one patch of endo now please don't assume because ther eis only one in there right now that I am cured there is no cure I have this forever and will have symptoms more than likley until menopause and some people have them beyond I hope that they are more managable and stay that way for some time But I am not expecting to stay totally with no endo pain if I do than this is great but i need to be prepared for the things that my happen as well as the saying goes hope for the best prepare for the worst I have learned to live alot of my life by this saying.
I unfortunately am still hav ing bladder pain so I need to see the urologist agian getting a new one though because things didnt go well with the first tow I had not looking forward to it at all so nervous that I am going to have another negative experience ugh not what I want for sure. Still no more news on the cp fromt of things still have not heard from nurology so as soon as I do ill update

another endo awarness video made by an endo sister

http://youtu.be/cafK1LHiyRU

thanks for making this Andrea

Diagnosing the Invisible

It takes a woman with endo on average 7 years from the time of her first complaints of symptoms to get a diagnosis. During this time, she will likely seek the help of multiple health professionals, be subject to a litany of tests only to hear something along the lines of “it’s just a bad period…it’s just normal cramps…etc”, and visit the ER countless times. When early diagnosis is critical for managing the damage that can be caused by endo, why must we wait so long? The answer is really quite complicated.

Women have been thought to be cursed with painful periods since early biblical times. Eve’s punishment for eating the forbidden fruit was to have periods and the cramping that came along with them. This marks a huge beginning in the attitude that it is a woman’s lot in life to suffer period pains, an attitude that still holds strong to this very day. We see commercials on t.v. talking about period cramps and hocking medicine to help them, or instructing us to have a “happy period”, insinuating that periods are anything but. And yes, for the majority of women with endo, there is really no such thing as a happy period. A happy period would be equivalent to having no period at all.

The attitude of it being normal to suffer from period pain seems to also hold strong in the medical community. Prior to an endo diagnosis, many women may be told that they suffer from primary dysmenorrhea, or quite simply and in words we can all understand, period cramps. This diagnosis does not do justice to us at all. We suffer from more than period cramps. We suffer from period torture, for period cramps do not leave us doubled over in pain and unable to work. They do not make us need to run to the bathroom every 30 minutes to change our feminine products. They do not describe the internal bleeding and damage that is being done inside of us. Too many of us have visited doctors who have told us basically that the pain is in our heads because they can’t find anything wrong on any of the fancy tests that they run, if we’re lucky enough to get any tests for our complaints at all.

Since endo doesn’t regularly show up on medical tests, and there is little commonality between patients as to their symptoms, it makes diagnosing endo difficult. The symptoms also overlap many other gynaecological symptoms such as pelvic inflammatory disease, pelvic congestion, ovarian cysts, PCOS (Polycystic Ovarian Syndrome), and a few others that I’m sure I’m missing but have likely been tested for. Complicating matters is the idea that many of the women who are diagnosed with endo also will be diagnosed with co-existing disorders. For example, it’s not uncommon for a woman with endo to have IBS (Irritable Bowel Syndrome) or an IBD (Inflammatory Bowel Disease such as Crohns or Colitis). Women with endo often suffer from Interstitial Cystitis (IC) which can create pain in the same places as endo does. In the endo community, IC is often referred to as endo’s evil sister.

Next up, there is a notion that you don’t discuss periods. Period. It’s not acceptable in society to talk about the heavy bleeding, the massive cramping, the worries and struggles of endo related infertility. If a disease isn’t talked about, how are others supposed to know that there really is such a thing as this disease? Of course they see us doubled over in pain, but even that too, over time gets labelled as us being overly sensitive to the everyday pains that other women face. You can’t see the endo by looking at us, unless you have endo cells within your skin tissue layers and develop bruising with the cycles, but if you were able to look inside of us (such as the earlier pictures I have posted) you would see a glorious mess. If you were to look inside when we have our period, you would understand why it’s much more than just “typical periods pains”. We are really good at pretending that we’re okay when sometimes, we’re really just wanting to scream out “NO!”. We also get really tired of saying that we feel like crap, so we just begin to say “I’m ok”.

Getting diagnosed properly with endo requires a surgeon who knows what they are looking for and is capable of treating it at the same time. Even within the field of gynaecology there is great variation among the doctors as to their familiarity and ability to treat this disease. Unless a doctor keeps up on the latest research into specific diseases, which typically wouldn’t happen without a doctor having a special interest in the area, then their knowledge base is going to be out of date. There are even some doctors out there who will prescribe endometriosis medications without the person having had the surgery done to confirm its existence in the first place! This practice is plain wrong and dangerous since as previously mentioned, endo symptoms can mimic several other gynaecological issues.

In short, doctors need to remain educated about the diseases that can effect a significant portion of the patients that they see. Unfortunately, it still often ends up to the woman with endometriosis to bring forth new research to their doctor to receive the best medical care.

surgery was a success

as you have probably seen I had a surgery recently it was for endometriosis and adhesions scar tissue caused by Endometriosis. Unfortunately one of the better treatments for endometriosis is surgery to either remore (excise) it or burn the endo off. Unfortunately when this treatment is done it is still not a definite cure there is no cure. We are stuck with this for life no going back. Some think that hysterectomy is a cure well no this isnt the case either people who have had full hysterectomy still can and alot do have recurrant endometriosis. this condition is a deep dark area or so much unknown.

I had surgery as I said above It was a diagnostic lap although I have already been diagnosed it is still called a diagnostic lap because if they do not state diagnostic than all they can do with those wonderful tools is look at my insides then close me and say yep its still in there but we cant remove anything because we don't have consent. So through my journey you will more than likely hear about more than one of these this one is my second and it is thus far deemed succesful for pain management. Is that to saay that it will reman that way no we do not know if it will or not I am living my life day by day and really loving each day that I wake with less pain and each night that I am finally able to sleep. I think I had nearly forgotten what that was.

so my surgery was march thirteenth and it was A tough day for me but I got through it i had to be at the hospital at 615 but actually arrived at 545 then was taken upstairs and very quickly brought back to preop. Which is great as i wasn't given too much time to contemplate what was going on. in that way what i mean is i was not given a huge opportunity to think about it I knew what was happening had been told on more than one occasion. so after a blood draw a numbing needle a failed iv we finally got a successful line established yep that is four polks not fun but minor compared to the pain that i had been in for so long.

Everyone came in and met with me gave me meds for neasua and then happy juice went back to the or and fell asleep talking to my sergeon about vacationing woke up two hours later feeling not so hot but really in fairly low amount of pain. Waited to wake up and talk to my surgeon also my wonderful gyn of course she is a keeper not changing her for anything. She told me that my left tube and ovary were removed successfully along with one patch of endo that had to be burned and that everything looked good right now does this mean I am cured no It means that the lupron that i took for six months did what it was supposed to and shrank the endo cells they are still in there even after being burned they recur. but i am now a week post op to the day and feeling great. Yes I lost a part that was near and dear to me as it is my woman hood and some days i struggle with that but the good news is I have another one that is or should be in full working order no endo on it at all thank you lord now not sure if i want kidos but I am still left with the ability to chose that if it is what i want.

feeling so much better now I have woken up with a pain level of 1 or 2 on a pain scale of ten from a nearly constant four to six It is still endometriosis awareness month and i still am going to try to get more info to all of my readers so please stay tuned and to any of my readers If you want something answered directly on the topic i am linked with face book please message your questions and i Will gladly answer them or leave them in a comment on a post I will respond my goal is to make others aware so that they do not suffer needlessly for ten years as i did before being diagnosed

the after math before all the good pain killing meds wore off lol mom did not think this one was actually post op she said i was more awake this time than she had ever seen

trying to look unscaved in preop four sticks later for an iv im a bit mad lol

here are the pics pf waiting pre op and post op

waiting not even six am ugh too early

ugh cramps ouch

no where near as bad as they could be but the full extent of the vruising and muscle pain is setting in my incisions are still weeping but so far no infection i will postpictures of me on surgery day soon hugs to all

very minor scare last night

Took a shower last night and when i got out there was bleeding from one of the lap incisions very very scary. I called the on call for my GYN and they called back with in five minutes. So I am now keepiong a bandage and gause on the left incision It was just very scary for me but im ok now the left lap incision is begger becaue they removed my ovary and tube through that side hoping it stays dry and blood free dont want any further scares I am feeling very good all things considered tired but that is because of my body needing to heal itself i have been up and about more after thsi lap thus far than the first hugs to all

surgery went awsome if that is possible

Everythng went smoothly and on time got there at fice thirty and was home by 2 pm and i now know for sure that I have the best gyn I could ask for everyonne says that because she doesnt do excision that i could find better but I dont want better I love my doctor she held my habbd and talked about her vacations and asked me where i wanted to go until i was asleep I have never in all my 26 years have I had that happen i wanted to cry after surgery because not lonly did she do that in OR she told them that i was to wait for her because she wanted to tell my the whole scoop and me not hear it from anyone she said my left tuba and ovary are gone thank you lord ther are mericles and i have a few and I know it thanks for the wonderful care jenny I will not change you for anyone
I am in a bit of pain but nothing like the full fledge endo flares i was having and the lupron did its job it only left one area of endo taht she needed to burn off yay thank you lupron you saved me needing more torture right now I also got the maraina insert. Bleeding from it right now but that still doesnt hurt much right now hoping to have no more cycles after six months wish me luck on this one hugs to all

Lights in the dark the upside of a chronic illness

This is going out of the original planned order between my helper and me but I am preparing for my second surgery right now and just wanted to write all of you about some of the thoughts that are running through my head at this time and there are a lot. first of all I know that a lot of my wonderful endo sisters don’t read my blog but I want to thank them for all that they have given me with support and unbreakable friendship only endo sisters can truly know what I am feeling and it feels so good to feel validated.
I have many wonderful people who are here for me all the time even if it is only through the net and I also want to thank my dedicated blog readers Sheila Amy staph and any others I am missing it gives me something to look forward to seeing your comments on my blog thanks so much your support is more than appreciated as well.
Mom will never read this for sure but I definitely need to put up a huge thank you to her she has been with me since moment one and is still more than willing to stand by me now I wouldn’t change you for the world I love u to the moon and back mom your wonderful and I have you to thank for helping me become the beautiful person I am today you have instilled in me the attitude I need to get through this hell we call endo or in faith language for those who do not know faith is my wonderfully beautiful niece she calls it metriosis but that’s good enough for me the fact that she tries to relate with my condition amazes me she is a very smart loving kido yes she might act like she is going on 20 but what five yr old doesn’t auntie loves u beautiful.
Also my handsome nephew Bryan auntie loves you and I hope after this surgery I feel better and can take u more to spend time with you he is three and very active so it’s really tough for me to take him like I want to endo sucks it takes the joy out of a lot of things. And to all my other special kidos even the ones that I only know through chat I love you not mentioning names as I do not have permission but they know who they are and to all my lil cp friends from all over you are all with me.

I have so many special people to talk about that I don’t think I can fit them all in a post now you may ask how this post is related to endometriosis well because of living with a chronic medical condition I am forced to look at everything a lot differently than most. I have had to learn never take anything for granted and to live each day like it is the last you never know when u have a chronic illness what you will be able to do from day to day. Why am I taking the time to thank so many people and tell them how wonderful they all are well because each time I go for another surgery I think well I may not get the chance to do this again don’t be alarmed I have every intention of coming through healthy and with the strength to fight but it is still a huge unknown. Endo has taught me so much that it is hard to put it all into words but I’m going to do my best to spread awareness in any way I can to anyone whom I did not address in the above post I’m sorry but know that each person who has touched my life is love and is with me each and every day

the lift is on yay back to the basics with my cp at 26 going to be a long road

As you all may have read earlier my battle to fight against cp has begun again and yes I am an adult so just let me politely tell anyone who has it dont let todctors tell you you will be fine with things after a certain age because cp does not get worse yes thankfully the brain damage does not change but function can and for me has changed alot over the past few years we all remember the battle with the hip and cortisone well new orthopedic said it was just pure torture for nothing as he feels my hip pain is due to not having an even leg length on my left side it has always been a half inch shorter than my right is this all cp related i have no idea if the leg length is a direct relations to the cp but i do feel that it is a direct reason for the pain in my hip and so does the new orthopedic so i had a build put on my shoe this morning at my old stomping grounds to speak i went tot he same place that used to make them for me along with my afos when i was younger and the same person is still an active part of my care he was not there today but he is around here is a picture of what my shoes look like now they are still the same shoes but you will notice the gread and height are very different

preop appointment for endo surgery today

As I said this month my blog is dedicated to endo and am still fighting my battle now for those of you following the posts thank you for reading please feel free to leave a comment or send me an email with any questions you have. I will be going into my second laperoscopy on march 13th and had pre op this morning everything is good and surgery is a 100 percent go consent forms signed can we say eeeekkkkkkkkk just a tad nervous but ready for the possibility of another two years or more with less pain thank you for taking the time to follow me through my battle and too learn about this very misunderstood under duiagnosed desiease

Symptoms

Endo is quite a confusing disease as there are many different symptoms a woman may experience, and there is often different symptoms felt by each woman who is diagnosed with this disease, as well as varying degrees of symptoms. As I will talk about in an upcoming post on the difficulties of getting diagnosed with this disease, endo symptoms can often be confused with symptoms of other illnesses, thus complicating the picture even more.

That being said, woman with endo often have heavy and/or painful periods. It's often the symptom of pain that leads us to first complaining to the doctor. Many women will come to find that they have chronic pelvic pain, which often gets a bit worse around the time of ovulation and during the onset of their periods. Pain can also become worse with sexual intercourse. Often women with endo experience intestinal problems, including painful bowel movements, constipation and diarrhea. The inflammatory substances released by endo cells can cause the bowels and bladder to go into a state of spasm leading towards abdominal pain. Women can experience sharp, shooting vaginal pain symptoms. The pain can be worsened by the presence of adhesions which may tug and pull pelvic/abdominal organs out of place. Endometriomas and cysts can form on the ovaries which can lead towards damaging the healthy ovarian tissue. There is some research to suggest that women may have elevated CA125 blood levels, which can increase the risk of developing ovarian cancer. As well, women with endo often have a surplus of estrogen which creates an entire systemic hormonal imbalance, as each hormone relies on a certain amount of other hormones to balance out the system.

At other times, women may have none of the above symptoms but may be diagnosed with endometriosis upon investigation for infertility issues. Up to 30% of women with endometriosis will experience primary infertility and require expensive assistive reproductive technologies to conceive. I will address the infertility issue in an upcoming post as well.

How old were you when your endo symptoms first started? What were/are your symptoms that you experience?

Endometriosis: A not so pretty rainbow

Keeping in line with my earlier blog posts on what endometriosis is, I thought it might be helpful to include a description of what many appearances endo can take within our bodies.

As this title states endo can come in different colors, shapes and sizes of cell patches. Size can range from very small implants which may not be visible without the use of a microscope to very large areas such as the cells that may clump to form an endometrioma. The colors of endo cells are listed below. Many doctors who are not trained in the varied appearances that endo can have, may miss these cells completely during a lap which can leave a woman in the same amount of pain as when she went in. There is some research that suggests that the small clear cells that can appear, often emit very strong substances that can cause intense pain and send the area into a state of spasm. Please be forewarned that some of the images are quite graphic in nature, however it does go to show that there is “something more” going on for us women with endo than just typical period pains.

Endo can be found in these colors:
The classic gun metal blue/gray spots
Raspberry spots with shaggy tissue
Flat or raised white areas
Clear blisters

If you take a look at the link below it will give you a picture of all of these colors. As I move closer to my next surgery date, which will be my second, I’m wondering what type of rainbow they will find within me. At my last lap, the doctor had mentioned that I had the “classic blue grey endo cells” and I have also had chocolate cysts on more than one occasion. Prior to my endo diagnosis I had developed a chocolate cyst on one of my ovaries which had ruptured, causing intense pain. When these cysts rupture there is a greater chance of them causing intense scarring and damage to the surrounding area. Unfortunately, unless the walls of the chocolate cyst are surgically removed from the ovary, the cyst had a greater chance of reforming over and over again. Over time, this could damage the functioning of the affected ovary.

http://www.monlezun.com/endo2.jpg

What rainbow appearances of endo cells have you had show up? Does your doctor treat more than just the classic black powder burns that endo can create?

another non endo related post sorry alot going on in my life right now

My blog is suposed to be dedicated to endo awarness for marcg=h but right now i feel like my life is crashing down around me My first appoointment for orthotics or actually a left to be made is march eighth joys lol yep that is thursday not sure how im gonna handle all of the tactile stuff ugh very nercous dont like my feet touched hum cant imagine why that could be lol but i will keep you all updated on this throughout my blog along with educating on endo hugs to all

Staging Endometriosis

To continue with my goal of increasing knowledge about endo for Endometriosis Awareness Month, this blog post is going to address the idea of staging endo, or how doctors classify the severity of the disease. If you are newly diagnosed, suspecting you have endo, or have a family member or friend with the illness, you may hear them say “I have stage 3 disease” but may not fully understand what it means to be at each stage. When I was diagnosed in 2009 I had no idea what having endo meant, let alone what having stage 3 endo meant. All I knew was that I had a disease that liked to cause me a lot of pain. The table below taken from http://www.merckmanuals.com/professional/gynecology_and_obstetrics/endometriosis/endometriosis.html describes the various stages of the disease and what the surgeon would expect to see within a woman with each level.



Stages of Endometriosis
Stage
Classification
Description

I
Minimal
A few superficial implants

II
Mild
More and slightly deeper implants

III
Moderate
Many deep implants, small endometriomas on one or both ovaries, and some filmy adhesions

IV
Severe
Many deep implants, large endometriomas on one or both ovaries, and many dense adhesions, sometimes with the rectum adhering to the back of the uterus


It is important to remember that the severity of endo doesn’t always coincide with the amount of pain a person may have. For instance, a person with stage one endo may have a lot of pain nearly every day whereas a person with stage three to four endo could have very little pain. Proper medical treatment to stall the advancement of this disease is critical in preserving a woman’s fertility. Infertility, as well as treatment options related to endo will be discussed in upcoming posts.

Again, Staging endometriosis is simply a tool that doctors use in determining how far advanced the disease has become. It does not have a relationship with the amount of pain a woman with this disease may have, and while the more severe diseases often carry a higher likelihood of causing endo, being in the upper stages does not automatically mean that a woman will be infertile.

I hope that this was helpful in letting you know what we’re talking about when we’re talking “endometriosis stages”. For my readers with endo, has your specialist staged your endo? What stage are you at? What crosses your mind when you think of the different stages?

As my goal for this Endometriosis Awareness month is to bring forward more information about the disease to hopefully increase understanding in the public, I would love to hear any questions that you may wish to have discussed in future posts! Please feel free to leave me an e-mail.

endometriosis video for 2012

http://youtu.be/RZogHNTiVns

endometriosis awarness month kicks off

Endometriosis, commonly called endo by the women who live with it, is an incurable and often hereditary disease where the pieces of the lining of the uterus (the endometrium) become displaced and grow in locations outside of the uterus, or within the uterine wall (then referred to as adenomyosis). These cells are more commonly found growing on/in the ovaries, where it can form large endometriomas (blood-filled cysts), the fallopian tubes, utero-sacral ligaments, and the Pouch of Douglas, which is a space behind the uterus. A little less common, is for endometrial cells to be found in or on the bowels and bladder, and in extremely rare cases they may migrate to the lung and brain tissues. Although a doctor may suspect endo based upon the patient’s reported symptoms, the definitive method for diagnosis remains for a woman to have a surgical procedure called a laparoscopy completed. A laparoscopy often involves a few small incisions that are made in the pelvic area of a woman, and then the doctor uses a small camera device to have an examination of the pelvic area. If endo cells are present during this procedure, the doctor is then able to either burn, or cauterize, the cells or he could surgically excise (cut out) them. Endo cells do not routinely appear on imaging studies, and while research has made advances in discovering some genes that play a role in its development, there are no blood tests which are able to diagnose it. While one of the main symptoms of having this disease is pain, the degree of pain is not related to the degree the disease has progressed. In fact, it is possible for some women to have no pain only to find out upon investigation for infertility issues that they have severe endometriosis. The pain of the disease is often caused when these rogue endometrial cells, which still act and respond to hormones like the regular endometrial cells, shed blood and other caustic substances called prostaglandins each month. Over time, this process scars the healthy surrounding cells creating what some doctors would call the typical “black powder burn” appearance that endo can take. Endo can also lead to the formation of adhesions, a string of cells that bind together and can pull and tug the various internal organs out of place. These adhesions can pull at any time of the month, which leads to the possibility of women with endo having pain at other points in their cycles other than just ovulation and when their cycle begins. As you can see, endo is much more than just what some people would like to chalk up to "bad period pains", it is a real disease that deserves real treatment.

In the next few blog posts I will be talking about how endometriosis is “staged” according to the severity of the disease, and sharing more of my personal story of how endo has affected my life. I hope you will join me on the journey as we celebrate Endometriosis Awareness month.

Pictures of endometriosis are below this post i will give foar warning for those who are swueemish as it is kind of a bit graphc thanks for reading even if u dont look at the pictures and happy march every one i hope that you find my story and information helpful and educational

black endometriosis

endometrioma blood filled cyst

adhesion tissue which binds organs together

culdesac endo also called pouch of duglas

all pictures in this first set came from google images i do not own any of the pictures i used.