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Frustrated Battling Endo! A Long Rant..
This more a vent than a question but, when you really don't have anyone to talk to who understands your symptoms you just have to let it out somewhere.
Back in 2007 I was diagnosed with endometriosis. This completely blindsided me because I had ZERO symptoms of this disease. My periods were uneventful, no pelvic pain, no pain during intercourse or anything else that goes along with it. I actually found out I had it because for two weeks I was sick to my stomach and having pelvic pain. The ultrasound they sent me for showed a 6cm complex cyst on my left ovary and some cysts on my right. The differential diagnoses was dermoid cyst or cystic malignancy. The latter of that had me as a complete basket case. So much so that the first thing I said to the nurse in recovery after I woke up was "Do I have cancer?"
My gyn who did the surgery explained I had an endometrioma and that my left ovary had to be removed because there was no viable tissue left. I was put on Lupron Depot for a couple of months and then after that my doctor suggested Depo Provera. Being that I read a million horror stories on the internet I said NO WAY JOSE!! Well in a few months I was having more pain and a cyst was now on my ovary. I got on the Depo and I never regretted it. My cyst resolved and I do not have any side effects. It just goes to show you have to go what your doctor says(within reason and if he's great like mine is) and not a bunch of strangers on the internet.
Off and on throughout the years I've had recurring pain. More like discomfort than actual pain. Every time I've had an TVUS and abdominal US and everything came back normal. Well this past week I have been having pain in my LRQ whenever I sit or walk to much. It radiates out to my hip and I also feel pressure in my rectum. I also have what feels like sciatic nerve pain. Once again I made an appt with my doc and he felt around in there (had no pain during the exam) and scheduled me for another TVUS and abdominal US. Then to top it all off I started to spot dark blood yesterday. I am just so stressed out about this because I am starting a brand new job after losing mine back in July and I also just graduated from a CNA program and have to sit for the boards in January so now is not the time for me to be having surgery. Especially with all the holidays coming up.
What even makes it worse is the internet. While I am thankful that there is information available so you can read about what you are struggling with there is also the dark side where everything and anything you have could be cancer. Google "I have a headache" and one of the links will be something about a brain tumor. Especially with ovarian cysts. My doctor knows my fears and said that although cancer doesn't check ID it is pretty rare for someone my age (29) to get it. Still even when I was looking for answers and posted what he said in another forum I got no less than a handful of responses along the lines of "Myself, mom, aunt, cousin, friend, had this that and the other thing and when they did surgery they found cancer and they were only 19-30" So it really does nothing to allay your fears. I would be lying of course if I said I didn't think I have it. Especially when it was a differential diagnoses the first time around. I feel so sick to my stomach. It also doesn't help that I'm a tech in a cancer center and that's all I'm around all day. I just picture myself in one of those beds with all kinds of tubes...the chemo...the surgeries. I just start getting carried away and end up crying myself to sleep.
I also suffer from IBS and have ever since I was in my teens although I learned both diseases can mimic each other. Although I wonder if maybe I had endo all along. The point is I'm sick and tired of all of this. I'm sick and tired of no one understanding what I'm going through. That my pains are real and not in my head. I'm tired of going to the doctor and having my blood drawn and various tests performed only to find out nothing is wrong. I am also tired of worrying that this disease is going to take my last ovary and then I'll be in menopause and have a whole host of other things going on. I'm also tired of cancer scares as well.
Well that's really all I have to say for now. I feel a little better having wrote all this but, I'm still worried in the end.
Thanks for listening guys and gals.
Back in 2007 I was diagnosed with endometriosis. This completely blindsided me because I had ZERO symptoms of this disease. My periods were uneventful, no pelvic pain, no pain during intercourse or anything else that goes along with it. I actually found out I had it because for two weeks I was sick to my stomach and having pelvic pain. The ultrasound they sent me for showed a 6cm complex cyst on my left ovary and some cysts on my right. The differential diagnoses was dermoid cyst or cystic malignancy. The latter of that had me as a complete basket case. So much so that the first thing I said to the nurse in recovery after I woke up was "Do I have cancer?"
My gyn who did the surgery explained I had an endometrioma and that my left ovary had to be removed because there was no viable tissue left. I was put on Lupron Depot for a couple of months and then after that my doctor suggested Depo Provera. Being that I read a million horror stories on the internet I said NO WAY JOSE!! Well in a few months I was having more pain and a cyst was now on my ovary. I got on the Depo and I never regretted it. My cyst resolved and I do not have any side effects. It just goes to show you have to go what your doctor says(within reason and if he's great like mine is) and not a bunch of strangers on the internet.
Off and on throughout the years I've had recurring pain. More like discomfort than actual pain. Every time I've had an TVUS and abdominal US and everything came back normal. Well this past week I have been having pain in my LRQ whenever I sit or walk to much. It radiates out to my hip and I also feel pressure in my rectum. I also have what feels like sciatic nerve pain. Once again I made an appt with my doc and he felt around in there (had no pain during the exam) and scheduled me for another TVUS and abdominal US. Then to top it all off I started to spot dark blood yesterday. I am just so stressed out about this because I am starting a brand new job after losing mine back in July and I also just graduated from a CNA program and have to sit for the boards in January so now is not the time for me to be having surgery. Especially with all the holidays coming up.
What even makes it worse is the internet. While I am thankful that there is information available so you can read about what you are struggling with there is also the dark side where everything and anything you have could be cancer. Google "I have a headache" and one of the links will be something about a brain tumor. Especially with ovarian cysts. My doctor knows my fears and said that although cancer doesn't check ID it is pretty rare for someone my age (29) to get it. Still even when I was looking for answers and posted what he said in another forum I got no less than a handful of responses along the lines of "Myself, mom, aunt, cousin, friend, had this that and the other thing and when they did surgery they found cancer and they were only 19-30" So it really does nothing to allay your fears. I would be lying of course if I said I didn't think I have it. Especially when it was a differential diagnoses the first time around. I feel so sick to my stomach. It also doesn't help that I'm a tech in a cancer center and that's all I'm around all day. I just picture myself in one of those beds with all kinds of tubes...the chemo...the surgeries. I just start getting carried away and end up crying myself to sleep.
I also suffer from IBS and have ever since I was in my teens although I learned both diseases can mimic each other. Although I wonder if maybe I had endo all along. The point is I'm sick and tired of all of this. I'm sick and tired of no one understanding what I'm going through. That my pains are real and not in my head. I'm tired of going to the doctor and having my blood drawn and various tests performed only to find out nothing is wrong. I am also tired of worrying that this disease is going to take my last ovary and then I'll be in menopause and have a whole host of other things going on. I'm also tired of cancer scares as well.
Well that's really all I have to say for now. I feel a little better having wrote all this but, I'm still worried in the end.
Thanks for listening guys and gals.
I am so sorry that you are going through this. I completely understand your frustration.
My symptoms went through the roof after the birth of my daughter and I keep getting told that after I go through menopause all my symptoms will reverse itself.. Ya Right!!
I have been living in hell like this for over 18yrs and I am sick of trying to explain to people that not only do I have endo, but I have FMS, CFS, TMJ, IBS, RLS and many many more. I have suffered so much and people just dont understand unless they are going through it themselves.
My symptoms went through the roof after the birth of my daughter and I keep getting told that after I go through menopause all my symptoms will reverse itself.. Ya Right!!
I have been living in hell like this for over 18yrs and I am sick of trying to explain to people that not only do I have endo, but I have FMS, CFS, TMJ, IBS, RLS and many many more. I have suffered so much and people just dont understand unless they are going through it themselves.
Honey, I know how you feel....been there, done that x4. I have a GYN appt. coming up on Thursday and I have a feeling she won't give me what I want still. I want a partial hyster done. Yes, I am 25. I'm married and we have 2 kids. We are done having kids, it costs way to much for us to get pregnant and I'm just fine with 2 kidders running around :-) Anyways, back in June she put me on seasonique telling me I wouldn't have pain and my cycles wouldn't hurt and I wouldn't have any cramping...BULL!! I tried to tell her I've been on several BCP's and nothing has worked, nothing even keeps it at bay. I've been dealing with endo (well it took 7 years to get diagnosed with it) but since diagnosis 8years now!! I get tired of doctors saying this and that will help you, it will make it go away blah blah blah. I have pain! I know what pain is! I deal with it all the flipping time!!!! No one can understand what you're going through unless they've had severe endo themselves. Sorry, I know I am ranting but I'm sort of dreading my appt. on Thursday. I too think I have a cyst on my left side (1/2 my right ovary was removed due to one when I was 18). When she did my exam it hurt like H E L L! She said I have 2 nodules on my cervix (of course I immediately think cancer) but she tells me she thinks it's endo but she won't do a partial hysterectomy on me. Sorry for the rant lol, but it seems like we know what each other is going through - if you have any questions or just need to vent feel free to message me...I hope things look up for you and good luck on your boards!
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