Endometriosis Support Group Community Group
Topics on how to give positive advice on Endometriosis and how to help with the pain.
Hi All,
My apologies for being longwinded in advance... for those of you who have been through being diagnosed and treated for endo, I would love to hear your advice or about your experience. Right now I feel alone, broken, and hopeless. Here it goes...
I got my first period when I was 13.. I struggled with painful periods straight through college. The pain I experienced was awful. Just before i would get my period I would have weird "bouts" that are hard to explain. I would start with lower back pain, have abdominal pain, headaches etc. (the normal cramping my friends all complained of with their periods) but 1-2 days before and sometime in the first few days of my period I would have an episode where I would have extreme pain in my abdomen that would radiate to my back. I would start sweating profusely, turned ghost white, would have horrible diarrhea with pain, and would faint. Sometimes I would force myself into a cold shower because I thought I was overheating from all the sweating. On more then one occasion I fainted in the shower. I would faint on the bathroom floor, and I remember fainting and waking up on my bedroom floor. I would faint just trying to get to the bed to lay down. The pain was horrible and I would just take tylenol and pray to God that the pain would stop soon. This happened month after month. I started on birth control when I was around 16 and it was better but still painful. I was switched from pill to pill because of many different side effects until finally I took myself off of them. After that the episodes would still happen but not every month and through my early 20's they happened infrequently enough that I stopped pursuing any explanation. From the time I was 25 till now (am 29) I rarely had these episodes and most of my periods went by with just really bad lower back pain, fatigue, headaches etc. However in this time I started seeing many doctors because of GI symptoms. I have had constipation that was only relieved as my period approached at which time i would have diarrhea. I have horrible abdominal pain that doctors have convinced me are "gas pains". After a few uncomfortable tests (endoscopy and a small bowel series) and a few different doctors, I was diagnosed with IBS. I went through a few different meds that were all useless. I have changed my diet, been evaluated for everything from celiacs disease to food allergies and still I suffer with these symptoms. Also during the last four years, I have been in two sexually active relationships. During my last relationship I intermittently would have the same episode I had when I was younger except it came with intercourse. In my last relationship it happened intermittently. With my current boyfriend it started off intermittently and now has been happening every time we have sex just before or after my period for the last 5 months. I also can't "get on top" because I have a sensation that I am going to pass bass with penetration in that position. I can not explain what all of this does to my self esteem. I am fatigued, stressed and frustrated, sad and hopeless and am dealing with these symptoms to top it off. This is taking a toll on my relationship, my professional life and every other aspect of my life. I went to an OB/GYN because my boyfriend talked me into it (I had given up on GYN as being the answer because I have been told its just IBS for so many years). My MD ordered an ultrasound which was done today. It showed a cyst on my right ovary but she said it is nothing. She kept saying "we can call it endometriosis" but wouldn't give me the diagnosis because it would require a surgical laparoscopy which she said "could get messy". She prescribed me birth control. When I asked why she said "because we are trying to treat the symptoms". Am I crazy for being angry about this. She didn't even schedule a follow up to follow the cyst. I am very apprehensive to take birth control, especially if its just going to mask symptoms of an unknown cause. The more i read about endo, the more I am amazed at how much my symptoms match to the disease. I am left not knowing what to do. Do i push until someone will do a lap? Or do I just listen to the doctor and see what happens with the pills? Im so upset and at this point am so worried. I just don't know what to do.
My apologies for being longwinded in advance... for those of you who have been through being diagnosed and treated for endo, I would love to hear your advice or about your experience. Right now I feel alone, broken, and hopeless. Here it goes...
I got my first period when I was 13.. I struggled with painful periods straight through college. The pain I experienced was awful. Just before i would get my period I would have weird "bouts" that are hard to explain. I would start with lower back pain, have abdominal pain, headaches etc. (the normal cramping my friends all complained of with their periods) but 1-2 days before and sometime in the first few days of my period I would have an episode where I would have extreme pain in my abdomen that would radiate to my back. I would start sweating profusely, turned ghost white, would have horrible diarrhea with pain, and would faint. Sometimes I would force myself into a cold shower because I thought I was overheating from all the sweating. On more then one occasion I fainted in the shower. I would faint on the bathroom floor, and I remember fainting and waking up on my bedroom floor. I would faint just trying to get to the bed to lay down. The pain was horrible and I would just take tylenol and pray to God that the pain would stop soon. This happened month after month. I started on birth control when I was around 16 and it was better but still painful. I was switched from pill to pill because of many different side effects until finally I took myself off of them. After that the episodes would still happen but not every month and through my early 20's they happened infrequently enough that I stopped pursuing any explanation. From the time I was 25 till now (am 29) I rarely had these episodes and most of my periods went by with just really bad lower back pain, fatigue, headaches etc. However in this time I started seeing many doctors because of GI symptoms. I have had constipation that was only relieved as my period approached at which time i would have diarrhea. I have horrible abdominal pain that doctors have convinced me are "gas pains". After a few uncomfortable tests (endoscopy and a small bowel series) and a few different doctors, I was diagnosed with IBS. I went through a few different meds that were all useless. I have changed my diet, been evaluated for everything from celiacs disease to food allergies and still I suffer with these symptoms. Also during the last four years, I have been in two sexually active relationships. During my last relationship I intermittently would have the same episode I had when I was younger except it came with intercourse. In my last relationship it happened intermittently. With my current boyfriend it started off intermittently and now has been happening every time we have sex just before or after my period for the last 5 months. I also can't "get on top" because I have a sensation that I am going to pass bass with penetration in that position. I can not explain what all of this does to my self esteem. I am fatigued, stressed and frustrated, sad and hopeless and am dealing with these symptoms to top it off. This is taking a toll on my relationship, my professional life and every other aspect of my life. I went to an OB/GYN because my boyfriend talked me into it (I had given up on GYN as being the answer because I have been told its just IBS for so many years). My MD ordered an ultrasound which was done today. It showed a cyst on my right ovary but she said it is nothing. She kept saying "we can call it endometriosis" but wouldn't give me the diagnosis because it would require a surgical laparoscopy which she said "could get messy". She prescribed me birth control. When I asked why she said "because we are trying to treat the symptoms". Am I crazy for being angry about this. She didn't even schedule a follow up to follow the cyst. I am very apprehensive to take birth control, especially if its just going to mask symptoms of an unknown cause. The more i read about endo, the more I am amazed at how much my symptoms match to the disease. I am left not knowing what to do. Do i push until someone will do a lap? Or do I just listen to the doctor and see what happens with the pills? Im so upset and at this point am so worried. I just don't know what to do.
deleted_user
I am so sorry you are going through this. I was told it was all in my head for three years and I went untreated, now it is so bad no treatment works. My best advice would be to push for the surgery and if you have to change doctors then do so. You have to be your own advocate. I went through five gynos before I found one willing to listen. Just have faith and stay strong, you can get through it!
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