Adenomyosis, Endometriosis, What Else?

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DestituteYouth
New Member


Date Joined May 2011
Total Posts : 8
   Posted 5/1/2011 12:35 PM (GMT -6)   
Hey Everyone,

I am 18 years old. I was diagnosed with Endometriosis and Adenomyosis two years ago, at the age of 16. At this time I was also diagnosed with IBS. In August of 2009 I had a laproscopic surgery to determine, for sure, the cause of my severe pelvic pain. I had a some endo. removed in that surgery and my uterus was about 3 times the size of a "normal" uterus. Since then, I tried birth control, when no relief was found we went to Lupron. For the first 4 months Lupron worked wonderfully. about shot #5 I started to feel all my sympoms coming back about 3 weeks after the shot was administered. I have now been on another birth control for about 6 weeks after continuing Lupron for 6 months. I have no relief. My pain is concentrated in my left side. It goes from my left pelvic area, left side of my lower back, left hip and into my left leg. At this point we are really not sure what is causing my pain. It is changing my life. I am completely exhaused all the time, have no relief from the terrible pain, no pain medications help and no positional changes help. I have had numerous ultrasounds and all come back fine. I cannot function with this pain and extreme exhaustion. I am only 18 years old and WILL NOT have a hysterectomy. My doctors do not think my pain now is due to my Endo. and Adeno. because they came back with Lupron, which doesnt happen. So, We are trying to narrow down possible causes. I had a test done to see if it could possibly be IC, a baldder disease, but that came back negative... I need help. I will be going to College in the fall and I cannot go without relief of this problem. If anyone has any suggestions I am up for anything at this point. Any ideas at all would be greatly appreciated.
 
Thank you

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 5/1/2011 3:41 PM (GMT -6)   
Your doctors are wrong! Lupron does not cure endometriosis and the pain continues or comes back for many women after the drug is stopped. Hysterectomy does not cure endometriosis either, some women still have problems afterward.

I suggest you do some research and get another opinion. The Endometriosis Research Center (endocenter.org) has a lot of very helpful information. It used to have an active forum but it has slowed down over the past year. You can check their list of recommended docs and see if any are in your area. They have a lot of helpful information on Lupron, surgery, treatment. Some of the information may be scary but please remember that it's usually women with the worst symptoms that go to a forum.

The Center for Endometriosis Care in Georgia has a great reputation. You can send your medical records to them and they will review them to see what they'd recommend and how they can help. There are a few other surgeons in the country that will do a records review, some charge money and some do it for free.

Endometriosis can cause a lot of scarring and adhesions which can be as painful as the endo itself. The more surgeries you have, the higher the likelihood of having problems with adhesions. This means you should only allow the best, most experienced surgeons to treat you.

I've had endo since puberty and I'm now a grandmother. I've had 4 abdominal surgeries, 2 were for endo. The last surgery was performed by someone I consider an endo expert. He removed all the endo left behind by the first surgeon. Unfortunately, I had/have a lot of adhesions so I am not pain-free. Tramadol controls the adhesion pain but it didn't touch the endo pain.

(I have no connection to either of the organizations I have mentioned above.)

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 5/1/2011 9:33 PM (GMT -6)   
Hello DestituteYouth!


I wanted to welcome you here to the forum, before passing judgement on your DR. Were glad you found this forum, and I'm sure you're going to find the members warm and supportive.

Please do keep checking back for more comments on you're post. While I cannot help you with this type of diagnoses, many of our members do share the same type of health issue you have. Hopefully they will stop by to welcome you and share their experience with you.

We don't want you to become too discourage at this young age, so please keep posting here for support, as you travel this long road we call Chronic Pain. We will be here for you! We support several young members on this forum...maybe one of them will see your post and give a shout out to you.

Good luck to you, and again!...Welcome!

SE wink

(I took the liberty and deleted your other post, as it was redundant and really served no purpose) Glad you made it here to our home page! wink
Moderator Chronic Pain Forum

Weekly Quote!
"When the character of a man is not clear to you, look at his friends."

Post Edited (Screaming Eagle) : 5/1/2011 9:10:54 PM (GMT-6)


MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 5/2/2011 12:02 AM (GMT -6)   
HI there DestituteYouth and welcome to the forums.

Have you been checked by a pelvic physiotherapist yet? They specialize in the treatment of pelvic disorders - you may have trigger points that you're not aware of, and they can be extremely painful. I have several of them, but one in particular on the right side of my pelvic area, just about where my ovary was before I had it removed. I can feel it when it's flaring - it's a hard knot that produces a constant stabbing type of pain.

Please consider asking your OB/GYN to check you for this, or to recommend a pelvic physio for you to go see. There are various things they can do that might help, and you certainly want to try everything you can, before considering anything so radical as a hysterectomy. For really great information on that option and a whole lot more, go to http://www.hystersisters.com/ and check out their forums. You'll get all sorts of great info and advice there.

Good luck to you...I hope you're able to find the answers that will end your pain.

Big hugs,
Pam
DX: Fibromyalgia, Severe Myofascial Pain, Osteoarthritis in Hips and Lower Back, Chronic Pelvic Pain, Surgical Adhesions, IBS, IC-PBS, Carpal Tunnel (both wrists), FAI, Type 2 Diabetes, Reynauds, Visual Migraines, Drug Related Hot Flashes, Hard Start for IV's, Unable to vomit due to surgery.

Meds: Oxycontin, Tramadol, Tramacet, Cymbalta, Cesamet, Flexeril

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/2/2011 1:16 AM (GMT -6)   
Hi DY,
 
Welcome to the board.  I'm sorry you are suffering so much, and at such a young age.  My niece is 24 and has severely suffered w/ endometriosis since about 16.  That's really all I know about it, and from what I've read here on the board. 
 
You've already received some great advice - and I really don't know that much about what you have... but the one thing I wanted to say was I first became ill at around your age - right before going to college, etc.  I was in bed for 6+ months, except for going from doctor to doctor.  After about a year of struggling.... I got significantly better - started back to school, went on to get married, have a big family and so forth.  I did end up getting ill again (whole other story) when I was about 30.... but age 19 through 30 were wonderful years :)
 
Point being, I know how discouraging it can be when life is just starting out....and you are dealing w/ health and pain issues.  Hang in there the best you can w/ everything.  You are doing the right thing by reaching out - and I would keep at that.  And I pray that this is just a small moment in time, and you'll find a solution to your issues that will really help. 
 
Take good care. --Tina
Many, many health and pain issues.
Many meds - including Atenolol, Effexor, MS Contin, Dilaudid, Actiq (oral Fentanyl), Soma, Vitamin D, Iron (for anemia), Synthroid...and on the list goes.
Personal: I'm a Christian wife and mother; I have six sons and identical twin daughters.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 5/2/2011 1:56 AM (GMT -6)   
Hello DestituteYouth

I wanted to welcome you to the chronic pain forum of healingwell. We are one big

family.... we help each other out and we give a lot of support, I am sorry for what you are

going thru at such a young age but I am glad you found us. Come any time you want when

you are down, when you are happy or when you need to vent. We are always here for you.

I hope you are able to find some answers to your problems and get some much needed

rest.

Take care
Suzane

DestituteYouth
New Member


Date Joined May 2011
Total Posts : 8
   Posted 5/6/2011 10:25 PM (GMT -6)   
Just wanted to update..

I just had a CT and everything turned out fine. My painwas increadible last week but it has subsided since it is no longer "that week". I am simply instructed to keep going with my birth control and see if that helps. I hope that next month at this tiome I will not have to endure the pain... I am remaining hopeful! Thanks to everyone that have written.

-DY
Diagnosis: Asthma, Endometriosis, Adenomyosis, Neuro-Cardiogenic Syncope,

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 5/6/2011 10:56 PM (GMT -6)   
Welcome DestituteYouth and Welcome Adriabold. Glad you both found Healing Well. Both of you are encouraged to post often, so we can get to know you and Adriabold, please start a thread telling us about you to the forum, so we can all welcome you properly.

I am so sorry for the pain you are going through, DY and hope that you get valuable information from the sites posted in these threads. Several ladies have posted good information to you already. I know that endometriosis can be very painful and that adhesions can be just as painful. The other posters are correct in saying you should be very careful in choosing qualified doctors to perform procedures and surgeries on you, due to the fact that adhesions often result after procedures and surgeries.

My sincerest hope is that you find the answers you are looking for and that the folks here can support you along your journey to wellness. Think positive and know that I will pray for you.

God bless.

Lindaloo
Co-Moderator Chronic Pain and Fibromyalgia Forums
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda

DestituteYouth
New Member


Date Joined May 2011
Total Posts : 8
   Posted 6/16/2011 7:11 PM (GMT -6)   
Hello all,
 
I am struggling today. I am realizing that my adenomyosis pain is affecting a lot more than I previously noticed. I will start my second and final round of Lupron in early August. We hope that it will help for at least my first 4 months of College. I have to have a car on campus for medical apointments and I cannot be a normal 18 year old. I realized how scared I was to inform my roommate of all my illnesses and the scary instances they pose. It would seem that lupron is the only thing that helps( even with the side affects and that it only worked for 4 of the 6 months I took it.) But, I can only take it for 12 months in my entire lifetime and I will use it all before I am 19 years old. I also have endometriosis, so this combination makes me believe I will not be able to have/carry children. The risk of infertitity increases because I have had both of these illnesses since before I was 16 years old.
 
I cannot help but wonder what the next step will be after this last 6 months of Lupron... I will have no other relief from this pain for the rest of my life. Does anyone know if there is a test that can be done to see if I am indeed infertile? If I cannot have kids, I might as well not deal with the pain... Any suggestions on what I should do would be greatly appreciated!
 
Thanks all so much,
DY 

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 6/16/2011 9:58 PM (GMT -6)   
DestituteYouth,
I am sorry that you are struggling so much. I can relate to you so much. I too had adenomyosis that was diagnosed after years of the same type of pain you describe, after a hysterectomy. I have had 9 surgeries for pelvic pain, ovarian issues, and miscarriages. All that has left me scarred inside and a pelvic and abdominal cavity filled with adhesions. They formed on my bladder, bowel, abdominal muscle wall, and various pelvic muscles as well. Sadly, there is no fool proof test for adhesions. They are only seen during surgery. The last surgery also found endometriosis. It continues to grow and form new adhesions. Ugly cycle.

There is no concrete test to tell you that you are completely infertile with endometriosis/adenomyosis. My surgeon believes that mine began in my very early teens and went undiagnosed until the age of 28. I have two healthy, happy sons that I did have some difficulty carrying, but made it. Do not give up hope on having children. If it makes you feel better to have a test to see if your fallopian tubes are not blocked by endo, you can have a hysterosalpingogram. It can be painful though, especially when endo is already there.

I do recommend that you do gentle stretches to your abdomen, pelvis, hips, legs and back. Keep in mind that you only stretch to the point where you can feel it, not the point where you cause pain. Doing that each day will give you better range of motion and hopefully restore some movement without pain. It helped me along with water therapy and meditation.

I cannot speak for your situation, but I know that mine is life long. Down the road I may try another surgery to clean out my adhesions and hopefully cause less pain, but with each new surgery for ovarian remnant syndrome or ovarian cysts, they find more and more adhesions and endo, and the cycle begins again once they are cut. Mine may be life long, yours may be better or even go through periods of remission.

Know you are not alone. I struggled with this for years unheard and left to wonder if it was in my head. Don't give up hope! There are others out there going through the same thing, the shooting pain, the inability to move without pain or function without fogginess, irritability, and constant pain. My prayers are with you and please don't give up on children! I am 30 and had a hysterectomy at 28. Stick with what you want for your life and don't let a doctor tell you hysterectomy is the only option. Lupron was not an option for me at any time. Try to find an OB Gyn that specializes in laparoscopic surgery and endo care. It makes a world of difference.

Try the stretches if you can, I would be happy to email you a list of the ones that helped my pain that sounds like yours. Also, walking does wonders for the body and spirit, even if its only 10 minutes at a snails pace.

I hope that is helpful in some way. I am sorry that you have the same type of pain that I do, but am so glad that you found Healing well. The family here is amazing. Keep in touch! We are all here to help.

Mindy

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 6/18/2011 6:45 AM (GMT -6)   
DY, I just wanted to say Hi and add my welcome to everyone else's

My problems are very different to yours, but I've had chronic pain since I was 14 so I want to offer my sympathies as well. It's horrible at any age, but worse in some ways when you're trying to be a normal teenager, trying to go through school, college and trying to make a start in life. *gentle hugs*

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Gradymedic
New Member


Date Joined Jun 2011
Total Posts : 2
   Posted 6/21/2011 4:36 PM (GMT -6)   
I need additional info..I am 38 yrs old with 2 children..I have had a tubal ligation and and ablation. The ablation did not work. I cramp so bad that pain medication does not control it, I feel like I'm having contractions, it's painful during sex (at anytime of the month), and retain and bloat horribly. In addition, I have never really bleed enough to really wear a pad, exapecially since the ablation..but I do pass extremely large blood clots. Up until yesterday I have been unable to get a dx, however my new dr states it's andeomyosis. I have ready many articles and forums.....the dr wants to remove the uterus...does anyone else have these symptoms?

Post Edited (Gradymedic) : 6/21/2011 3:39:19 PM (GMT-6)


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 6/21/2011 5:02 PM (GMT -6)   
There is a complication from ablations called "post-ligation post-ablation syndrome." It happens when you have a tubal ligation and an ablation. It is difficult to remove the endometrium from the top sections of the uterus. These areas may continue to bleed and that blood backs up in the blocked off tube causing pain.

Also, scarring will cause the uterus to adhere to itself. If there are pockets where there still is some endometrial tissue, this tissue will bleed but the scarring will trap the bleeding.

Adenomyosis is another possibility. The best treatment is removal of the uterus. I'm not one to recommend hysterectomy lightly but it seems to work well for women that have been accurately diagnosed. My problem with an adenomyosis diagnosis (say that 3 times fast!) is the accurate way to make the diagnosis is after the uterus has been removed.

Good luck.

Gradymedic
New Member


Date Joined Jun 2011
Total Posts : 2
   Posted 6/21/2011 5:24 PM (GMT -6)   
Dagger
Thank you for that information..truth be told i have never heard of that syndrome or the adenomyosis until yesterday. But prior to the ablation I hurt just as bad. But in recent months the pain has literally put me in a fetal position or in bed and unable to walk. I will do some more research on the post ligation/ablation syndrome. So I can be more informed when I talk to the dr next month
Thank u

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 6/22/2011 8:20 AM (GMT -6)   
 
     Good morning Grady!
 
          Welcome to the Chronic pain forum!
 
    One thing we ask new members to do is to post and introduction on a new thread. You may do that by clicking on the "Post New Topic" button at the top of the page here.
 
      I think you will be much better served this way, and you should get quite a few more responces.
 
          Just a note: My wife went through the very same ordeal you have and wound up getting a hysterectomy to solve all her problems. She wished she had never had the "Ablation" done, as she eventually wound up in more pain. However it did stop the heavy bleeding.
 
   Hope to see you on a new thread!
 
     Take care!
 
 SE wink
     
Moderator Chronic Pain Forum

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Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 6/24/2011 12:23 PM (GMT -6)   
Destitute Youth,

I usually post on the fibromyalgia board, but I also have endometriosis. This might be obvious, but have they tried you on continuous birth control? Taking birth control on the regular schedule didn't control my pain nearly as well as the continuous birth control has. It took me a long time to find the right birth control pill to make this work. In the end I needed a higher dose pill - one with 30 mcg of estrogen, brand name Nordette - before I did well on the pill. Before that I'd been on Ortho-Tri-Cyclen, Alesse, some other higher dose pill, and Nuva Ring. Each time they made me give it 3 months before we decided it wouldn't mix with my body - boy was that hell! I do an "off" week and get a period every 4 months, and I start Naproxen 550 mg 2x a day a week before I get my "period" off the pill.

I am lucky because narcotic painkillers work well for my worst endometriosis pain. It sounds like you need better pain control. Have they prescribed any narcotics or just the regular ibuprofen/naproxen? I would ask for a referral to pain management if it seems like the doctors don't know how to control the pain. You shouldn't have to live like this.

Also, I get radiating leg pain from endometriosis. Your pain sounds like the endo/adeno to me, but I'm not a doctor.

Post Edited (Heather Lynn) : 6/24/2011 11:27:22 AM (GMT-6)

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