ENDOMETRIOSIS. PLEASE HELP!!!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

kronstoolong
Regular Member


Date Joined Mar 2006
Total Posts : 366
   Posted 8/5/2007 12:53 AM (GMT -7)   
Hi-I post regularly on the Crohn's Disease meaage board.  I am going through the diagnosis of Endometriosis.  I am in excruciating pain.  It is wors during my period.  I have had two children (one with no pain meds) and have had severe Crohn's Disease for years.  This acute pain I am feeling in my entire pelvice region is probably the worst pain I can remember.  It hurts so bad and radiates down my legs and around my hips an lower back.  The Gyn. I am seeing says I'm "not a good candidate" for surgery b/c of the CD.  She wants to try me on different meds to see what will work.  I don't want to go down that road again.  I have done that most of my life. I just want to get rid of this and move on.  I am frustrated.  She is a new Dr. to me.  I had my first appt. she did lots of tests and an Ultrasound to rule out other things.  She said if I didn't have CD, she would have just sent me straight to the hopital for surgery b/c my pain is soooo bad.  THEN, she schedules my follow up for three weeks later!!  Are you kidding me??  Any advice would be great...meds? surgery? Please respond I am at a total loss...I feel sort of blind sided by this new condition.


Dawn
 
31 Years Old
Diagnosed with Crohn's Disease at age 17.
Diagnosed with RA or severe joint inflammation due to CD.
Hypothyroid, GERD.
 
Currently taking Leucovorin, Levoxyl, Humira, Methotrexate and Vicodin.
 
In the past have taken Prednisone, Pentasa, Remicade, Imuran, Plaquenil and I am sure many, many more.

Post Edited (kronstoolong) : 8/5/2007 11:38:44 AM (GMT-6)


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 8/5/2007 9:39 AM (GMT -7)   
Dawn,

Find a different doctor ASAP! There is NO reason you have to live in that kind of pain. This woman needs to learn the meaning of compassion. Keep us posted...

Chutz
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)


kronstoolong
Regular Member


Date Joined Mar 2006
Total Posts : 366
   Posted 8/5/2007 10:40 AM (GMT -7)   
Thanks Chutz. I thought maybe I was being too demannding, but I just don't think so. This doens't seem right. I have heard great things about her, but myabe she isn't used to dealing with people with chronic illnesses.
Dawn
 
31 Years Old
Diagnosed with Crohn's Disease at age 17.
Diagnosed with RA or severe joint inflammation due to CD.
Hypothyroid, GERD.
 
Currently taking Leucovorin, Levoxyl, Humira, Methotrexate and Vicodin.
 
In the past have taken Prednisone, Pentasa, Remicade, Imuran, Plaquenil and I am sure many, many more.


razzle51
Veteran Member


Date Joined Jan 2005
Total Posts : 763
   Posted 8/5/2007 2:46 PM (GMT -7)   
yes and double yes find a different Dr.  I had it too and suffer from a chronic illness and Me being in my 50s I had a totally hysterectomy. This can be serious so please find another Dr. I had no problems from recovery or anything . Still have my chronic illness . best wishes
 
ps : Again you are masking the pain . You need to get rid of it and the only answer is surgery


Syringomyelia T4-T10
Chiari Malformation
Decompression Surgery 1999
 

 
 
 



luvdogs
Regular Member


Date Joined Jan 2005
Total Posts : 184
   Posted 8/5/2007 5:22 PM (GMT -7)   
Hi Dawn.


I'm so sorry that you're dealing with lots of pain now. I was diagnosed with endometriosis ten years ago, but I have been battling this disease since puberty. Therefore, I definitely relate to your level of pelvic pain. Some days, my pain is so severe that no pain medication in the world will touch it.



I agree with the other posters. Find another gynecologist ASAP. Let me stress that it is very important to find a doctor that specializes in endometriosis. Of course, all Ob/Gyns treat endometriosis, but the specialists usually provide much better care. I discovered this fact after dealing with many gynecologists that did not take my disease or my pain seriously. They either told me to get a hysterectomy or "get over it". Unfortunately, endometriosis can be a very complicated disease, and often, hysterectomies do not completely take away the pain in many woman. Also, I wish that I could simply "get over" my pain.



Have you been diagnosed with endometriosis yet, or is this a suspected diagnosis? As you probably know, endometriosis can only be officially diagnosed through laparoscopy. I couldn't tell from your post if you've had a past surgery in which endo was found.



Endometriosis can be very difficult to treat. Surgery can be an effective way to reduce pain, especially if it is performed by a specialist. Regular gynecologists often just "burn" off endometriosis lesions with a laser, wheras the specialists actually cut it out. Research has proven that the excision method of removing endometriosis is much more effective at reducing pain.



Also, there are many different medications that can be used to manage endometriosis and related pain. Birth control pills are a common treatment for endo. Also, there are several injections which put you in a menopausal state, thus shutting off the hormones which make the endo grow. Lupron is used by some doctors to control endometriosis, but it can have serious side effects. Some women have reported relief with an injection called Depo-provera. This is mostly used as a birth control method, but it can also be used to control endo pain.



Do you have any books on endometriosis? I highly recommend a book called "The Endometriosis Sourcebook", published by the Endometriosis Association. Many libraries carry this book.



Based on the description of your pain, you may possibly have adenomyosis as well. That is when the lining of the uterus grows into the muscular layer of the uterus, causing severe menstrual pain. Adenomyosis can sometimes be seen on a MRI, but for the most part, it is diagnosed after the uterus has been removed. With adenomyosis, a hysterectomy definitely helps the pain.



I'm so sorry that you've had to deal with Crohns too. Some doctors are uncomfortable performing surgery on Crohns patients because of the risk of adhesions, so I wonder if that's why your doctor doesn't want to do surgery. Whatever the reason for your doctor's decision, I still recommend finding an endometriosis specialist. If you need surgery, it's vitally important to find a surgeon that is skilled in endometriosis and/or adenomyosis.



Adhesions can cause a great deal of pain in many women. They stick and bind the pelvic organs together, and the tugging creates lots of pain. I have formed many adhesions as a result of the endometriosis, and the pain is horrendous. I am scheduled to undergo surgery with a respected endo doctor in the spring, and he will be removing the adhesions and endometriosis growths. If the adhesions are removed correctly, they are less likely to grow back.



I started an endometriosis support group in my area, and one member also had Crohns disease. She had surgery with an endo specialist, and he found many adhesions binding her pelvic organs together. He took down the adhesions and carefully inspected her abdomen for endo growths. In this patient, he did not find any endo, and he theorized that her pain was coming from the multiple adhesions that formed as a result of her Crohns. So, in your case, your pain could be arising from many different causes.



Much like you, my pelvic pain is very severe. I battle my pain on a daily basis. Have you discussed your severe pain with your doctor? Perhaps visiting a pain management specialist may help you get your pain under control. You should not have to suffer as you wait to determine what to do about your condition. You deserve adequate pain relief.



I hope that I provided you with some useful info. Frankly, there is so much that is unknown about endometriosis, but I wanted you to know that you're not alone. If you have any questions, please let me know. Take extra good care of yourself, and see if a hot bath or a heating pad will help lower the pain. Keep us updated.



Best wishes.

(Please read forum rules before posting. No links to other forums)

Post Edited By Moderator (Chutz) : 8/9/2007 8:46:40 AM (GMT-6)


kronstoolong
Regular Member


Date Joined Mar 2006
Total Posts : 366
   Posted 8/5/2007 6:55 PM (GMT -7)   
Wow luvdogs, thanks fo much for that great information and thanks to everyone else too. I Have not been diagnosed. She is hesitant to even do the lap...I mean come on!! I will talk to my G.I. and family Dr. to see if they have a recommendation for someone who specializes in this area. I a four days away from my period so the pain is coming in good and strong. I will look up the site you sent me and also take much of the info you provided to my next appointment, wherever that may be. Thank you again!!!
Dawn
 
31 Years Old
Diagnosed with Crohn's Disease at age 17.
Diagnosed with RA or severe joint inflammation due to CD.
Hypothyroid, GERD.
 
Currently taking Leucovorin, Levoxyl, Humira, Methotrexate and Vicodin.
 
In the past have taken Prednisone, Pentasa, Remicade, Imuran, Plaquenil and I am sure many, many more.


TexasJen
Veteran Member


Date Joined Dec 2006
Total Posts : 649
   Posted 8/6/2007 6:55 AM (GMT -7)   
luvdogs gave you some really great info! I also found The Endometriosis Sourcebook to be very helpful as well - get it. :-) As for your doc, I wonder if she's thinking along the lupron/ depo lines of treatment first in order to shrink the endo implants a bit before surgery. In severe endo cases, some docs will do that in order to make the surgery easier. I wish I understood her reasoning that having chrones disease means you are a poor surgical candidate for endo surgery. That makes no sense to me.

As for finding a doctor, you might try checking with your insurance company first to see if there are any gynecologists in your area who do NOT also practice OB. These are the docs that tend to specialize in endo, but they can be hard to find because the OB side of the practice is what pays the bills.
Living in the Republic of Texas minus a gallbladder, a couple of cervical discs, appendix, uterus, and 18" of colon; but living with my wonderful husband, 2 dogs, 1 cockatiel, and 2 gold fish. 


kronstoolong
Regular Member


Date Joined Mar 2006
Total Posts : 366
   Posted 8/6/2007 9:07 PM (GMT -7)   
I'll check it out-thanks TexasJen
Dawn
 
31 Years Old
Diagnosed with Crohn's Disease at age 17.
Diagnosed with RA or severe joint inflammation due to CD.
Hypothyroid, GERD.
 
Currently taking Leucovorin, Levoxyl, Humira, Methotrexate and Vicodin.
 
In the past have taken Prednisone, Pentasa, Remicade, Imuran, Plaquenil and I am sure many, many more.


MMac
Regular Member


Date Joined Dec 2006
Total Posts : 244
   Posted 8/9/2007 5:59 AM (GMT -7)   
Hi Dawn -

I also post on the CD message board. I was diagnosed with CD in 05. Because of so much abdominal pain it was suggested that I consult with my OBGYN. Well then it was discovered that I suffered with endometrosis in the wall of my uterus, cysts and fibroid tumors - and had a partial hsysterectomy in Jan06. It was the BEST thing that ever happened.

Like the others have advised I would seek a 2nd opinion.

MMAC, Wife & Mother of 3 (14, 13 & 7) - Diagnosed w/CD June05 (terminal ileum)

Asacol (8 daily), Imuran (150mg), Prenisone (15mg), Lunesta (3mg), Phenergan (when needed) - Remicade as of 7/24


kronstoolong
Regular Member


Date Joined Mar 2006
Total Posts : 366
   Posted 8/17/2007 10:03 PM (GMT -7)   
I have an appointment on Monday with a new Dr. He is not an OB and specializes in Endometriosis. Listen to this...he had me scheduled for Wednesday but was asked to join in an emergency cancer surgery in a patient of another Dr. Anyway, his office called yesterday and said that they had to cancel my appointment, BUT, he is opening on Monday (when his clinic is usually closed that day) b/c he didn't want me to have to wait any longer than I have had to. I was absolutely amazed. The first Dr. I was seeing has NEVER even returned my phone calls. I even leftone message on a message machine, crying about my pain...that was a week ago. I am ready to deal with this and get on with my life. This last period of mine lasted fror 8 days. I felt like maybe I was bleeding to death; LOL! Anyway thanks to you all for your responses. It is great to hear from others who are going through or have gone through similar experiences.
Dawn
 
31 Years Old
Diagnosed with Crohn's Disease at age 17.
Diagnosed with RA or severe joint inflammation due to CD.
Hypothyroid, GERD.
 
Currently taking Leucovorin, Levoxyl, Humira, Methotrexate, Vitamin D - 50,000 IU per week, Vitamin B12 injections, Lunesta and Vicodin or Percocet as needed.
 
In the past have taken Prednisone, Pentasa, Remicade, Imuran, Plaquenil and I am sure many, many more.

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 3:09 AM (GMT -7)
There are a total of 2,732,437 posts in 301,021 threads.
View Active Threads


Who's Online
This forum has 151184 registered members. Please welcome our newest member, Limbo35.
171 Guest(s), 2 Registered Member(s) are currently online.  Details
Lamilla, Steve n Dallas


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer