lizzy76
02-06-2006, 06:01 PM
I posted a couple days ago about what's been going on recently - ovarian cysts, severe pain, fluid in my pelvic area and possible endo. I'm meeting with the gyn doc on Thursday and the more this pain continues the more I want to just have the lap done and get things under control. The doc had mentioned Lupron but one of the side effects is depression and I'm currently being treated for depression/suicidality so that's out. I've tried continuous BCP in the past but not recently. It didn't help a whole lot but I've never had pain this bad - I'm on pain meds right now. So when I have my appt this week I really want to just ask him to go ahead with the procedure. But I don't want to come across like I'm pushing for surgery, although I guess I sort of am. Has anyone else been in this position? What did you do?
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JenRas05
02-06-2006, 11:57 PM
Hi,
I have been in the situation you are in. I was in a lot of pain with severe lower back pain. I was the one who actually looked up and found endometriosis and realized that my symptoms matched up and that I could possibly have it. I told my gyno and she told me that my symptoms didn't match up to those of endo because of the fact that they didn't correlate to my menstrual cycle. I knew she was wrong though. They were trying to make me believe that my back pain was a pulled muscle. I knew it was more serious than that and that it was being caused by something inside and since it was so low down I knew it had to be my reproductive organs. The cramps I was also having everyday matched up to the exact same spot on my back where the pain was coming from. I also had and still have pain around my navel, so my gyno suggested that I see a gastro doc first before I had a lap done. So I waited, but the pain kept getting worse and I even had to go to the ER one day. They gave me all kinds of pain relievers and even Morphine but nothing helped get rid of my back pain at all. So I was sent home from the ER with the same amount of pain and all drugged up and sick. I finally decided that I needed to do something, because if no pain pills were helping I knew the only way would be the lap. I called my gyno and explained that the pain was getting worse and that I wanted the lap done right away. She first decided to prescribe me this narcotic pain pill to see if that would help. Only later did I realize that it was the same pills I had that didn't work. So again I called back to my gyno, with the support and advice of some very helpful ladys on this site and told her that nothing was helping the pain and I couldn't take the pain any longer, and that I wanted the surgery done soon. She decided to move my surgery up to the next week. Finally I had gotten somewhere and they listend to me. I got the lap done and she did find endo on the back of my uterus. She then told me that the back pain was caused by this. So what I'm trying to tell you and everyone is that you shouldn't have to wait if you are in a lot of pain. You just have to be very involved in your health issues,...you have to give your doctors a push sometimes. If I wouldn't of found out about endo they probably never would of even suggestd endo to me. I went through a lot to get my diagnosis and I know that a lot of other women go through this to. I don't want to see you have to go through this. Like one lady told me on here, "You know your body better than the doctors do." and if you feel that endo is what is causing your pain you have the right to tell your doctor that you want the lap done. Don't give up either...don't let them push you around. It's your body and your health. Take care of it. I truly wish you the best of luck. I know what your going through. Hold in there!
Sincerely,
Jenny
I have been in the situation you are in. I was in a lot of pain with severe lower back pain. I was the one who actually looked up and found endometriosis and realized that my symptoms matched up and that I could possibly have it. I told my gyno and she told me that my symptoms didn't match up to those of endo because of the fact that they didn't correlate to my menstrual cycle. I knew she was wrong though. They were trying to make me believe that my back pain was a pulled muscle. I knew it was more serious than that and that it was being caused by something inside and since it was so low down I knew it had to be my reproductive organs. The cramps I was also having everyday matched up to the exact same spot on my back where the pain was coming from. I also had and still have pain around my navel, so my gyno suggested that I see a gastro doc first before I had a lap done. So I waited, but the pain kept getting worse and I even had to go to the ER one day. They gave me all kinds of pain relievers and even Morphine but nothing helped get rid of my back pain at all. So I was sent home from the ER with the same amount of pain and all drugged up and sick. I finally decided that I needed to do something, because if no pain pills were helping I knew the only way would be the lap. I called my gyno and explained that the pain was getting worse and that I wanted the lap done right away. She first decided to prescribe me this narcotic pain pill to see if that would help. Only later did I realize that it was the same pills I had that didn't work. So again I called back to my gyno, with the support and advice of some very helpful ladys on this site and told her that nothing was helping the pain and I couldn't take the pain any longer, and that I wanted the surgery done soon. She decided to move my surgery up to the next week. Finally I had gotten somewhere and they listend to me. I got the lap done and she did find endo on the back of my uterus. She then told me that the back pain was caused by this. So what I'm trying to tell you and everyone is that you shouldn't have to wait if you are in a lot of pain. You just have to be very involved in your health issues,...you have to give your doctors a push sometimes. If I wouldn't of found out about endo they probably never would of even suggestd endo to me. I went through a lot to get my diagnosis and I know that a lot of other women go through this to. I don't want to see you have to go through this. Like one lady told me on here, "You know your body better than the doctors do." and if you feel that endo is what is causing your pain you have the right to tell your doctor that you want the lap done. Don't give up either...don't let them push you around. It's your body and your health. Take care of it. I truly wish you the best of luck. I know what your going through. Hold in there!
Sincerely,
Jenny
lizzy76
02-07-2006, 01:37 PM
Thanks for your reply Jenny! I'm so sorry that you had to go through all of that before getting the lap done. I feel like I'm in a similar position you were. I've been having continous pain and they keep giving me drugs to help. Sometimes the meds help but I can't stay on this stuff forever. Right now I'm on Ultram and Percocet for when the pain is really intense. I'm not an addict but staying on this stuff for a long period of time could present problems. I'm hoping that the doctor I see in CA will be more willing to do the lap since I'm flying out there from Vermont. The doc out here was willing to do a lap but I'd rather have it done near friends and family. I just feel a little weird asking for the surgery but I'm not sure why. I know that we all have to be our own advocates for our health but that's SO hard to do!! I always have all these great things to say to the doctor before going there but I end up not being too persuasive when I'm actually talking to them - I give in quite easily. Ironically this isn't the case in my "real" life but there's something about doctors that intimidates me. Thanks for your advice - it really helped to know that the lap helped you and you found someone to listen to your concerns.
stacezilla
02-07-2006, 06:32 PM
whats lap?
lizzy76
02-07-2006, 08:15 PM
lap is short for laproscopic surgery. They do it with lasers and a little camera instead of the old fashioned method of cutting you open!
JenRas05
02-08-2006, 01:09 AM
I'm glad I was able to help you some. You'll have to tell me if you get the lap done. Keep me posted on how your doing. I was on percocet too. That stuff seemed to work better for me than the vicodin, and they also were the only pills that took away my cramps. The only bad thing was that they made me really dizzy and drowsy. Even now though I still have lower back pain, cramps, and pelvic pain. Don't get me wrong though, the lap did help me some because before I had it the back pain was a lot worse. Right now I'm just on birth control for my endo but it doesn't help my pain any. My only other option is Lupron Depot but I really don't want to take that. I've heard so many bad things about those shots, it just scares me. I figure I'd rather go through what i'm dealing with now than go through all the side effects and problems the shots could give me too. I also tried this natural supplement for endo called Fibrovan but it didn't help me any. I wish there were better treatments for endo.
Jenny
Jenny
kpd_spotsy_va
02-08-2006, 01:53 PM
Always be persistent! If you have to go to 10 doctors until you find one that will listen to you then DO IT. I WISH I HAD. I was diagnosed last year with a rare blood disorder (essential thrombocythemia) that prevents me from taking ibuprofen (anti-inflammatory) so the pain became even less tolerable. The only thing I could take was tylenol and I might as well have taken nothing. I went for my annual gyne. check up last month with a new doctor since I recently moved (he was highly recommended) and I went through my usual diatribe about my major back pain, pain radiating down the front of my legs from my pelvic area, nausea. The pain is sometimes so severe that I start to sweat (almost like a hot flash) and I feel like I'm going to pass out. As soon as I told him this, he said "It sounds like you may have endometriosis and I want to schedule you for a laparascopy and hysteroscopy right away!". Yes, that was his FIRST response. Not, "oh, once you have a baby that will go away", or "no I can't prescribe pain mediciation for cramps". I was taken aback, as I had never even heard of endo. I had the laparascopy 2 weeks ago and I have severe endo. My ovaries were completely impacted behind my uterus because there was so much tissue there that should not have been. Also had a chocolate cyst on my left ovary and a lot of lesions as well. The doctor told me that due to the severity of the endo that I have had it for a long time. Now, I have moved around a lot in the last 10 years so I have had at least 5-6 different gyne. in that time and NONE of them ever properly diagnosed my pelvic and back pain. Unfortunately, due to the severity of the endo I am infertile and need to have a histerectomy in the next 1/2 years. I am 31, recently married and just found out I cannot have kids because of endo. Please ladies, take charge of your health and be persistent.
lizzy76
02-09-2006, 11:31 PM
Wow I can't believe things went on that long before you finally found a doc who could/would help. I'm so sorry. I saw the gyn doc today and I really like him. I spent well over an hour with him going over my symptoms, my history and everything else. Part of the exam he did was to check for endo - I guess there are a few "tests" they can do during a regular exam that most people with endo respond to with a lot of pain. It was uncomfortable but I definitely wasn't jumping off the table or anything. He said that I could still have endo, and of course the only way to diagnose is through surgery.
Tomorrow I'm scheduled for a sonogram in his office and he said he might order an MRI. I think he's trying to find something definitive - maybe more cysts or something before he decides on surgery. Although he did say he would be willing to do surgery he's just not sure how much it would help. I'm going to have the tests done and labwork he's ordered (I'm anemic). One other thing that he noticed during his exam was that both my nipples have discharge. He squeezed one and more discharge came out. I'm not sure what to make of that since I've never been pregnant.... I think he ordered a certain lab test to look into that. So that was my appointment. Overall pretty good. We'll see what tomorrow has in store...
Tomorrow I'm scheduled for a sonogram in his office and he said he might order an MRI. I think he's trying to find something definitive - maybe more cysts or something before he decides on surgery. Although he did say he would be willing to do surgery he's just not sure how much it would help. I'm going to have the tests done and labwork he's ordered (I'm anemic). One other thing that he noticed during his exam was that both my nipples have discharge. He squeezed one and more discharge came out. I'm not sure what to make of that since I've never been pregnant.... I think he ordered a certain lab test to look into that. So that was my appointment. Overall pretty good. We'll see what tomorrow has in store...
kpd_spotsy_va
02-10-2006, 11:22 AM
That is good that your doc is thorough. Better to check any and all possibilities. Here's a link for nipple discharge in case you had not already found it... http://www.med.umich.edu/1libr/wha/wha_nipdis_crs.htm
With you being anemic, I can understand his reluctance to surgery, even if minimal unless its necessary, since he would have to give you something to increase your rbc count. Its a shame we gals are going through so much pain. You know, I have my first Lupron injection next wednesday. Haven't seen anything good about it on the boards....but unfortunately, the lap didn't provide me any relief. The doc told me that since my uterus is "boggy" that it is there and he cannot see it so the Lupron will help deter the regrowth for a while and hopefully help eliminate some of what is still there. At this point I am willing to try anything but I'm concerned about the side effects too. Please keep us posted on your tests -- best wishes and good thoughts today. :wave:
With you being anemic, I can understand his reluctance to surgery, even if minimal unless its necessary, since he would have to give you something to increase your rbc count. Its a shame we gals are going through so much pain. You know, I have my first Lupron injection next wednesday. Haven't seen anything good about it on the boards....but unfortunately, the lap didn't provide me any relief. The doc told me that since my uterus is "boggy" that it is there and he cannot see it so the Lupron will help deter the regrowth for a while and hopefully help eliminate some of what is still there. At this point I am willing to try anything but I'm concerned about the side effects too. Please keep us posted on your tests -- best wishes and good thoughts today. :wave: