ENDOMETRIOSIS. PLEASE HELP!!!

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.

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.

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.

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

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.

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.