Any women out there that suffer from severe endometriosis???

Question

I was diagnosed with endo a year ago, and since then it has gotten worse. I started my period yesterday, and by today the pains that I have are so sharp they brought me to tears. I felt like I was going to pass out and vomit.The gas pains are horrible and I am having a hard time urinating and bowel movements are insanely painful. I actually could not sleep last night from the pain.I have an appointment on Nov4 with gyno, so my question is any hints on pain relief, or web sites to find out more info. I also have an ultrasound next Wed.as an ER doc fears I may have large cysts that have ruptured. (Idef have cysts, but have not been checked in years)I need some advice as I have young children and I am having a hard time with my daily activities. Even sitting on a flat surface is impossible.Also I am on a prescription anti-inflamatory, but it is not really helping....

Answer 1

Honey, you're not the only one. I started mine in the middle of the night. I couldn't sleep before that, and I can't sleep now. I've been diagnosed with endometriosis for 7 years now. A regular period for me lasts around 17 days, with servere pain the whole time. Vomiting hurts so bad when you're going through this....but there is not way to control it. Passing out....I'm the manager of a daycare. There has been one time when I was the only one in there, and I passed out. With 13 kids. I have lost 7 jobs in the past 2 years because of this. It's gotten so bad a few times that I've actually pondered killing myself. I know that sounds crazy, but when pain has control of your life...when and if you pay your bills, if you get out of bed and have a good day or a bad day, it's not so crazy. And the sad part about it is.....nothing helps. I've been given morphine for pain several times before, and it didn't help. I was prescribed 10mg percocets...those were a joke. I don't know what to do anymore, either. All I know is that I cannot continue living my life in pain. This not only affects me, but it affects the children at work, my fiance and the rest of my family. It affects my landlord and whether or not he gets paid. I hope you haven't gotten to the point where you lose all control over your bowel movements when you're on your period. I have, and I'm just barely 20 yrs old. The doctors say that there's nothing they can do for me. I've been on several different methods of bc, I've had a dnc and scraping. Nothing has worked. Please email me if you find something that does.

Best regards.

Answer 2

Hi, I am 26 years old and got diagnosed about 6 months ago but had been dealing with the pain that you describe plus some for about 3 years. Wasnt able to concieve in those 3 years and had many many cysts. I had to search around to find a sypmythetic gyno for awhile. The doc that i was seeing at the time suggested lupron shots. They are very very expensive and basicaly throw you into menopause. So i decided it was finally time to be free of all of it and had a full hysterectomy done on the 15th of Sept. I have thought about it alot , and i know i made the right decision. I was told i wouldnt have any more children so what was the point of dealing with the pain. I couldnt even try to concieve with the pain i was having. If this is what you are going through i feel for you so much. It was the hardest decision i EVER had to make but i do feel better already. Gool luck i hope this helps.

Answer 3

I feel your pain. (I received a response from ENDO-she also responded to your question) and contacted centerforendo.com. I don't know what they can do for me but with all the pain I have been experiencing, I am willing to learn all I can and possibly pay their office a visit. I suffer from excruciating pain to the point where my life basically comes to a halt from the pain. I cannot even bathe myself, I don't eat, I can't walk or even stand upright, I also have had cysts and fibroids but they were removed in June. I thought this would cease my pain but it has not. I take so many anti-inflammatory meds but they barely work and at some point during my cycle they stop working altogether. I visit the emergency room EVERY month so that they can shoot me with pain medication (the only thing that seems to somewhat dull the pain) and send me home. I am seriously suffering and don't know what more I can do. I just got off the line with the woman Heather at centerforendo.com and I cried my heart out to her. They evidently use a special technique which is not used by all doctors. They are located in Atlanta. At this point I'm ready and willing. Give Heather a call (number on website) and see if they can help you. Good Luck.

Answer 4

I know I do not have endo. I had a investigative laproscopic surgery in august, but I have had a cyst burst...extremely painfull. My periods are soo bad that I can't work....can't sleep. I have gone through six different medications and nothing works. So i have some Tylenol with codeine from previous surgeries and I basically take them around the clock and knock myself out and sleep. The only thing that has helped is taking my birth control continuously for three months so I only have a period 4 times a year. That has helped me a lot. So I can hold a job. Ask your doctor about it.

Answer 5

I feel your pain. I suffered with it from the age of 16 till I finally had a full hysterectomy at 39. The pain is unbelievable at times. There are some drugs called GnRH analogues such as zoladex, which shrink down the endometrial tissue by stopping your ovaries from releasing the hormones which activate the endometiosis. Basically it send you into a temporary menopause so unless you take HRT as well you will get all the symptoms of menopause. I think GnRH analogues can only be taken short term though, but it might be worth asking about them, to give yourself a break from the pain for a while.

Answer 6

You're not alone, and help is out there. Please check out http://www.endocenter.org, http://www.centerforendo.com, http://www.drcook.com, http://www.endometriosistreatment.org, http://health.groups.yahoo.com/group/EndoDocs and http://groups.yahoo.com/group/erc for accurate information and support to find additional resources and help so that you can regain your quality of life and have the disease effectively treated to relieve your pain. Good luck and best wishes.