Endometriosis and Adenomyosis

Hello,

I wanted to get opinions and/or advice from people living with either or both of these illnesses.

I was formally diagosed with Endometriosis at the age of 24 through a lap procedure. Shortly thereafter, I had a medical 'crisis' and was put on Provera for 10 days, and low and behold I became pregnant soon after ending that course of medication (1993). I'd been told since I began my period at age 14 that I would never conceive or carry a child. (this is what my mom told me, that the doctors told her about me, but was never given a the reason why).

Fast forward to 2003, almost exactly 10 years later, I have exactly the same type of 'crisis' and go to my obgyn who sends me in for an Ultrasound before starting any treatment. The report comes back with the diagnosis of Adenomyosis. In fact, the technician who read the results put in the report that my case was so bad, he could actually diagnose from an Ultrasound, which is almost never the case. I was put on Depot Lupron immediately to get my symptoms under control.

For years now, I have been wondering if I have an autoimmune disorder and have asked several providers, specialists, etc...if Endometriosis and/or Adenomyosis ARE in fact autoimmune disorders and am always told 'No'. However, I've read so much online, and have actually came across article published in 2008 recognizing Endo as an autoimmune disorder...and just yesterday I saw that it is now showing on the list of Social Security Disability Diagnoses'.

The reason why it is so frustrating is that I do not fight infections well...I almost died after a post op infection a few years ago, and then last year I fought an infection for almost 5 months after a dental procedure (which resulted in the loss of a tooth, bone jaw loss that required oral surgery and grafting) and now I have abscesses in my spleen which have turned into Granuloma's.

None of my doctors seem to take seriously that I can not fight infections and do not attempt to even entertain my theory that the Endo, Adeno are causing my weakened immune system...forcing me into these life threatening situations.

Am I crazy? Is it wrong to want definitive answers regarding my simple question? Are Endo and Adeno Autoimmune disorders/diseases?

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I should also point out that I have Asthma and Allergies...which are also common (higher occurance rate) in people with immunity issues.

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Hi, I am 53 when I was a barely 2o I started having problems . Had 8 female suguries before I was 27. I think that something in my body was fighting each other way back then. Some of us that are older never had a name with what was wrong. Now they give names to everything. So do not know is I had same as u. However I had huge tumors size of tennis balls and grapefruit. Just try very hard not to be your desease. Do not let it define u no matter what. I could not concieve a child. But it was alright because I ended up adopting twin boys they were just born. Got to be at the hospital and all. They where and are my wonderful gift s from heaven. So sometimes God shuts one door and then opens a window . The other great advise I got when I was 27 had the hyto. The old doctor said before the surgury rememeber colleen being sexual is all up in your head. He was right . I never went tru what must woman go thru. ... Happy to chat anytime...
God Bless
Colleen

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This is such a coincidence. I was wondering where I could get some input from people about this condition and procedure and here I open up Inspire and there it is.

My daughter, 35 had a uterine ablation for heavy bleeding. The Doc thinks she does have Adenoymosis but no definitive Diagnosis.

She is so frustrated because 1 month later she is bleeding heavily again.
The Doc found a small polyp but didn't think enough to cause so much bleeding.
Her Doctor said this is the first time that the procedure has not worked so quickly She expected maybe in 6 months.
She does not want to do a hysterectomy on her because of her age and the next step is Ultrasound and then medication.
As a Nurse, I don't take surgery lightly ( having had more than a few of my own ) but if they will not take her ovaries I am not sure a Hysterectomy is the best option. Of course, I am not saying that to her; that will have to be her decision. Oh it is hard sometimes for we Moms to not say something.
I would appreciate any information anyone has
Thanks so much

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Serrittia,

I was offered Uterine Ablation when I was 23...at the time they used the phrase "Uterine Cauterization". I didn't take them up on it...as I wanted desperately to have children.

That is also the reason why I haven't had a total Hysterectomy (I am currently pregnant after Fertility treatments). The Doctors want me to have one after the birth of my child via c-section, but still have not decided if I want to go that route, since I don't want to do HRT, but if I leave my ovaries, it will not relieve the Endo as it is Estrogen Dependent.

I did two long courses of treatment of Depot Lupron in 2003/2004 which did wonders for the Adenomyosis...and I wish that there were less devestating treatment courses that I could go on that give the same relief...but since I have developed Osteopenia since those treatments, I'm hesitant to go any more of them.

I do know that Endo has been put on the SSA's list as a recognized autoimmune diesease, and so Adenomyosis can be argued it should be too, since it is "enternal endo"....that has given me hope since I've been suffering from both since my early teens (even though the Adeno diag. didn't come until I was 35).

I wish your Daughter luck and hope she finds some relief that works for her!

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Hello, this saddens me so much to hear so many others that are having the same problems. You are going to hate my story, but I do hope it helps you out in the future. Mine started when I was in high school having severe pain, but didn't have my first lap till I was 21 with the final diagnosis of endometriosis. I was lucky to find a husband at 23 and have a baby at 25. I am now 33. We lost one previously and the one I did have was only 2 pounds, although he is perfect as can be now! I then went through another surgery taking one ovary thinking that it might help part of my pain and maybe I could try to have another baby later. Another 6 months went by and the pain was unbearable. I had my total hysterectomy and gallbladder out at the same time , due to stones. In the past I had tried different birth control pills to try to help with the endo, never wanted to do lupron...knew the side effects too well. I also had 3 laps to help with it.
The worst part is about a month after my major surgery. You talk about not fighting infections and being immune related. YES! I have always had problems with my immune system, but has gotten so much worse after the hysterectomy. I now have Fibromyalgia. They are pretty sure it will develop into something else and continue to test me, such as lupus and RA. I also have Interstitial Cystitis now, but am pretty sure that is something that has been going on for years but has just gotten worse the past few years. I have back issues, lesions on my brain, asthma, IBS, major swelling, osteopenia (even though I still didn't do lupron) ugh, hair loss, anemia, etc. I'm sure I've forgotten some things as they have me on so many meds now. Also, I'm also on social security disability for not being able to work anymore. My gyn told me years ago that this would happen and it's all linked to endo. I only hope that there will be more research to help this disease. It destroys lives. I know there are different stages of endo, so some women are not as affected. But, for some it's pure hell to go through and then when you think you're done with it your body brings something new to try to cope with. I've had a total of about 8 surgeries due to endometriosis. I will tell you that I had both my ovaries out only to wake up to my doctor pushing estrogen at me. I totally refused it! Why would you take them out to put that in your body? She was supposed to know this. You have to be your own advocate and do all of your research! They are finding now that endo travels to other places in the body, such as your lungs, brain, extremities, etc. I did do the compounded progesterone to help with hot flashes for quite some time though. I hope this helps some. Please write if I can be of any help. Lisa

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Hello Lisa,

Our stories sound so simiilar. My mother was taking me to doctors since I first started my period 2 weeks before I turned 14. I didn't have my first lap and actual diagnoses until 1992, 9 years later. I go as long as possible without surgical relief, and have agreed to only three laps total for the Endo...the reason why is that laps do not do anything for the Adenomyosis. I refused a Hysterectomy all these years because I did want children. We finally were able to go through fertility treatments (injections and IUI) in 2008 and had a beautiful baby girl, and then again got pregnant in late 2010 (I'm due 8/16/11). I'm worried about getting a hysterectomy during the C-Section because of the estrogen and that if I leave the ovaries, the endo will still be there, but with the uterus gone, the Adenomyosis will be gone.

I'm currently in the final stages of a VA Service Disabled Veteran Compensation Claim, since the endo was diagnosed in the Military...and am wondering if once this is complete if I should try for SS, now that the Endo is on their list of Disabilities. It's not that I don't want to work...it's that I have such a strong work ethic that I feel humiliated having to take time off work, never have enough time accured to take time off and go into 'unpaid' status and never have time saved to go on vacations...my 'dependability' at work suffers so greatly that I get passed up for promotions. I just get tired of having to call in, ask for time off...etc., because I get 'the look'.

How hard was it to get approved with the SSA for disability? I have Endo, Adneomyosis, Asthma, Allergies...I've taken several AMA Tests but they always come back negative....I'm told that I have to be in a full flareup in order for an AMA test to pick up a positive, so Negative doesn't mean I don't have something, we just haven't tested at the right time so far. It's very frustrating!

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I'm so sorry for all you've gone through. Believe me, I know how frustrating it is. I wish I could do it all over knowing what I know now though. I wouldv'e done some things different in my path and maybe wouldn't have turned out so ill. Live and learn I guess. I have learned that doctors really don't know it all and that sometimes you are just someone they're testing it out on. Having a total hysterectomy has helped with the adenomyosis and endometriosis in my situation, oh and I had a breif hx. of fibroids. But, I continued to have pain in the lower abdominal area and pelvic area till this day. They have even done a lap to see if the endo had returned. She said it was just scar tissue, but I'm really starting to loose faith in her. It seems as though when they have a OB/GYN after their name once they get your babies here and then get all your reproductive organs out, they are finished with you! Also, when I was pregnant my endo grew like wild fire and they had to clean it up when they went in for my c section. I know it's supposed to be in a "remission type state". ..not mine. lol. I will tell you that I wouldn't try having a baby and a total hysterectomy at the same time, too much to put your body through at one time. Especially hormonally.

I do wish you luck on your VA service claim. Don't give up. My husband and father have both done those and have had to do the repeals. Fight it if you have to. You said you're having ANA tests done? Are you having body pain? Swelling?
I know I started making copies of all medical records for SS, I've been to many doctors and have so many things wrong. But, I needed to act within a certain amount of time within the time I wasn't able to work anymore to get my SS and medicare. But, they also have another kind that you can apply for. They keep checking my ANA tests and they come up negative, but my blood tests show inflammation. It just takes time. Mine may never show a positive and it may just be fibromyalgia. That's why I asked if you're having body pain and such.

Hang in there, I know it's frustrating. I hope you have a great weekend!

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I had never even heard of Endometriosis until I was diagnosed. Strange I know. I was very fortunate, I had 3 children prior to my diagnosis so it didn't effect my child-bearing. I was 36 when I had my surgery and official diagnosis. My Doc has been awesome and what has worked for me is the NuvaRing. He has me use it continually and it seems to control my symptoms very well. Once I was finally able to wrap my head around the condition and what it was, I went back for a follow up exam and ultrasound a year later. Then Adenomyosis was added to my diagnosis. I thought it was that instead of the Endo, not the case. I have both. More for me to look up! I've found some great information out there and finally understand it all. I am so thankful that I was blessed to have been able to have my children first, and that my symptoms are now being controlled rather simply. My Dr. Didn't want to give me a Hysterectomy due to my age, even though I was completely done having children, HRT didn't sound like a fun ride to me either. I hope all of you are able to find somewhat of a happy ending. :) I'm still learning as I go along, 3 yrs now and counting. Best of luck to all of you, many good thoughts, prayers & well wishes! God Bless :)

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My sister just read somewhere that they are trying to classify endo as an autoimmune disorder. Both her and I have been diagnosed with it. I had 7.5cm endometrioma removed in March of '09 and a 2nd surgery in Dec of '09 to remove adhesions that had grown from my ovary to my greater omentum. And now I am being tested for Sjogren's. I've seen one Dr. who isn't convinced it's Sjogren's and now I have traveled 2hrs to the best hospital in my state to see another Dr. to see if she can diagnose it. My main question is how much of it is my endometriosis flaring up b/c I'm not on any drugs for it? I've tried several pills, IUD, patch, etc...nothing works. So I figured screw it, I should stop pumping my body full of drugs. But now I do have a cyst on my ovary that measures 5.5cm. I am going for a 2nd ultrasound at the end of the month to see if it has grown. Hope you get some answers soon. Good luck!

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I wanted to share my story and hope someone can provide some information, too. I had a very bad bladder infection and bronchitis as a toddler. At around age six I started to get canker sores that had to be treated by a dentist. My appendix exploaded at age six and I almost died. After that I caught every flu or bug that was around, I missed alot of school. I started having painful periods at age 12. In my late teens I was on antibiotics for several years. Puss, white blood cells and blood kept showing up in my urine. In my early twenties, I was finally diagnosed with endo. I went through a series of surgeries and still had pain. In my late twenties I was diagnosed with interstitial cystitis. In my thirties, I felt like I was getting everything under control and was feeling well. My late thirties, pain started creeping bag up. I was diagnosed with ibs, fibormyalgia and then adenomyosis. I have done a lot of research on agent orange and how dioxin causes endo in lab mice. My dad was in Vietnam and has documents that the ship he was on was exposed. Recently, doctors tried to convince me hysterectomy was the only option. I refused, not because I want children, but I refuse to accept the fact that this is the only option. And finally, some promising news. In the UK a procedure with Exablate (robotic surgery) has been approved for treating adenomyosis. Not only is this not a hysterectomy, there isn't even an incision! If anyone has had this or knows more about it please share. Also, if anyone has parents that were exposed to agent orange (or any of the other colored agents that contain dioxin, yes, there is more than one) please share. It is a mystery why so many of these diseases go hand in hand. There is no set opinion on the autoimmune disorder, but from what I have read over the years it appears that our bodies are either attacking itself or so busy trying to heal itself (on diseases it can't heal) then our immune systems can't fight off anything else. Thank you ladies for sharing your stories. I admire the moms that suffer with any of these diseases. From a very very young age, I knew I would never have children because I never felt well. I could not imagine taking care of a child with so many health issues. I wish all of you a future filled with good health.

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