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 descript
ion 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.
(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)