Aa
Never ending story with no diagnosis
Hello I still have not been diagnosed with endometriosis but I´m going crazy trying to find out what is wrong with me and the doctors are not helping so much.
I wanted to know if someone here can tell me if they cohere. For almost 2 years I have been tormented. I had premature twins 3 years ago and when I started having my periods again I started having bad cramps, they only got worse by each time and the bleeding got heavier at the same time. When my bleeding started I started feeling nauseated and for a year it got worse every month. I ended up being 49kg from being 63, I´m 171cm. I was diagnosed with acid reflux and put on medicine that do nothing for me, after about a year I stopped taking them. The doctor said that i had constipation that probably was the cause of my symptoms. Medications for these conditions did noting for me.
Later I had CT scan where he saw little cyst on my liver and ovaries but said that was not the cause of my symptoms. Again I was told I had constipation and IBS.
After almost 2 years of this horror I have seen that it must be hormonal related, At the end of my period I have the worst nausea and sickness feeling, I just feel sick, tired and fight to get throw the day. This feeling goes over after 4-5 days and then I often have few good days, 2 weeks after my periods started I have another nausea time and sometimes pelvic pressure, so much I almost cant walk, have the feeling I am 30 weeks pregnant and my tummy is bloating. That goes after 2-3 days and then I often get 10 days in good condition for the exception of a few days that I have nausea for one day or few hours. This is the same routine every month!!
I had Minera put up year ago and the doctor (gynecologist) wanted to trie to take me off it to out rule that she was the cause of my symptoms. After she took it I get more worse every menstrual cycle and the nausea is coming more frequent and worse so we are going to go back on Minera in august.
My blood pressure has gone very low, 85/55 and when Im at my worst I go 78/48 and feel like im fading out. I have gone to a heart specialist and he cant find anything that causes this. Before I was 115/85.
When I have my period I have so bad cramps I just want to lay home in bed, I have had days at work when I can´t do my work with full attention and can't walk upstanding and crying laying over the table from my chair. Going home early from work and cant take late night shifts because I cant trust on my health.
My life is dominated by this and I break down every time I have gone to a doctor and come out with no answers. Having doubts about if this is all in my head and no one beliefs me!!
I think I have endometriosis but are doubting my feeling about this because the doctors are not helping me finding a solution :(
Sorry for my bad english writing, just ask if there is something that is not understandable :)
I wanted to know if someone here can tell me if they cohere. For almost 2 years I have been tormented. I had premature twins 3 years ago and when I started having my periods again I started having bad cramps, they only got worse by each time and the bleeding got heavier at the same time. When my bleeding started I started feeling nauseated and for a year it got worse every month. I ended up being 49kg from being 63, I´m 171cm. I was diagnosed with acid reflux and put on medicine that do nothing for me, after about a year I stopped taking them. The doctor said that i had constipation that probably was the cause of my symptoms. Medications for these conditions did noting for me.
Later I had CT scan where he saw little cyst on my liver and ovaries but said that was not the cause of my symptoms. Again I was told I had constipation and IBS.
After almost 2 years of this horror I have seen that it must be hormonal related, At the end of my period I have the worst nausea and sickness feeling, I just feel sick, tired and fight to get throw the day. This feeling goes over after 4-5 days and then I often have few good days, 2 weeks after my periods started I have another nausea time and sometimes pelvic pressure, so much I almost cant walk, have the feeling I am 30 weeks pregnant and my tummy is bloating. That goes after 2-3 days and then I often get 10 days in good condition for the exception of a few days that I have nausea for one day or few hours. This is the same routine every month!!
I had Minera put up year ago and the doctor (gynecologist) wanted to trie to take me off it to out rule that she was the cause of my symptoms. After she took it I get more worse every menstrual cycle and the nausea is coming more frequent and worse so we are going to go back on Minera in august.
My blood pressure has gone very low, 85/55 and when Im at my worst I go 78/48 and feel like im fading out. I have gone to a heart specialist and he cant find anything that causes this. Before I was 115/85.
When I have my period I have so bad cramps I just want to lay home in bed, I have had days at work when I can´t do my work with full attention and can't walk upstanding and crying laying over the table from my chair. Going home early from work and cant take late night shifts because I cant trust on my health.
My life is dominated by this and I break down every time I have gone to a doctor and come out with no answers. Having doubts about if this is all in my head and no one beliefs me!!
I think I have endometriosis but are doubting my feeling about this because the doctors are not helping me finding a solution :(
Sorry for my bad english writing, just ask if there is something that is not understandable :)
I´m taking cerazette, taking it continuously :)
I did not tolerate the Mirena IUD, tried that 2. For now I´m trying to take the BCP and I hopa I will tolerate here better :)
I did not tolerate the Mirena IUD, tried that 2. For now I´m trying to take the BCP and I hopa I will tolerate here better :)
That is wonderful news for sure and so quick :)
You are taking the pill continuously right?
Some tips for that. I have been on Marvelon BCP for 7 yrs and I take it every single day at the same time. Around the 3 month mark you should start to have breakthrough bleeding. Come off the pill at that time for about 3 day and let yourself bleed then go back on it. It will be the same every three months. For me the last two years I never even had breakthrough bleeding.
I wish you luck and please keep me updated if anything changes or you have any other questions :)
You are taking the pill continuously right?
Some tips for that. I have been on Marvelon BCP for 7 yrs and I take it every single day at the same time. Around the 3 month mark you should start to have breakthrough bleeding. Come off the pill at that time for about 3 day and let yourself bleed then go back on it. It will be the same every three months. For me the last two years I never even had breakthrough bleeding.
I wish you luck and please keep me updated if anything changes or you have any other questions :)
I got my laparoscopic surgery october 3rd, the doctor told me right after that he only saw one spot that might be endometriosis but was not sertain. He also told me that my fallopian tubes was filled with blood (don´t know it´s the right english word but reflux in my fallopian tubes) that can be seen in endometriosis. He also took a sample from the spot he took away from my abdomen and today I got the news I have endometriosis.
My tears started flowing I was so happy and so sad at the same time, finally I had my ansvwer. I feel so lucky I had been diagnosed after only nearly 2 years wich is a short time and that it was the mildes case you can have...only one spot :D
No I started taking birth control pill to stop my bleedings and got stronger painkillers to tolerate the pain.
Thank you for your help
My tears started flowing I was so happy and so sad at the same time, finally I had my ansvwer. I feel so lucky I had been diagnosed after only nearly 2 years wich is a short time and that it was the mildes case you can have...only one spot :D
No I started taking birth control pill to stop my bleedings and got stronger painkillers to tolerate the pain.
Thank you for your help
That is amazing and pretty quick. In Canada some of the surgery wait times are up to a year. Good for you. Let me know when it gets closer to the date :)
She booked me for laparoscopic surgery but there is 2-3 monts waiting time. I got back on Minera, then I will get a little pain relief. She didnt ask many questions about my symptoms but she is willing to help me through this and we will be in email communication if there is anything I need help with so I am very thankful for that.
I never thought of contacting the association, will do that!
I have an appointment with my doctor on tuesday and we have talked about laparoscopic surgery before and next step was booking me for surgery if I were no better so I hope that will stand. I will demand having laparoscopic surgery if she will hesitate I cant bare this anymore.
Every time it get more painful than last time and the fatigue, lack of energy and headache the days after and the nausea almost all the tima only get more difficult to handle my pain medicine dosn´t work fully anymore :(
I have an appointment with my doctor on tuesday and we have talked about laparoscopic surgery before and next step was booking me for surgery if I were no better so I hope that will stand. I will demand having laparoscopic surgery if she will hesitate I cant bare this anymore.
Every time it get more painful than last time and the fatigue, lack of energy and headache the days after and the nausea almost all the tima only get more difficult to handle my pain medicine dosn´t work fully anymore :(
You can still contact the association to ask for help and resources. Have you tried that yet?
There isn't anything wrong with joining and getting answers it's the only way.
You need to think about you and push to get answers about how to find a surgeon that can diagnose
There isn't anything wrong with joining and getting answers it's the only way.
You need to think about you and push to get answers about how to find a surgeon that can diagnose
This is the icelandic association for endometriosis. There you can read about the symptoms and storys from other women with endometriosis. There is nothing about a doctor who specialize in endometriosis. I know about one who I have heard about is the best but see has stopped taking in new patient. There is Icelandic endometriosis group on facebook but this is a small country so until I get diagnosed I dont want to ask for invitation.
Thank you for your help!
Thank you for your help!
I did find this for now http://www.endo.is/ that is the iceland association. I can't read it so you will have to tell me what it says. Let me know asap. I am still looking I am not giving up
That is the only way to be diagnosed. You need to shut all of those voices out of the doctors you have been seeing and find yourself and Endo specialist I am not kidding. It isn't about courage its about your quality of life.
You need to stand up and say enough is enough. I am going to ask some Twitter Endosisters to see who is the best surgeon out there. I will get back to you.
You need to stand up and say enough is enough. I am going to ask some Twitter Endosisters to see who is the best surgeon out there. I will get back to you.
I live in Iceland, I don´t have the courage to ask for laparoscopic surgery, I have so much doubt about everything that I feel because no doctor is fighting for me to find out what is wrong. When the cramps come I have no doubt that something is not right but I never have the appointments with my doctor when I´m feeling the worst, afterwards the cramps I am always hoping this was the end of it and I will be free of it in the future!!
Is the first step in the diagnosis to get a laparoscopic surgery?
Is the first step in the diagnosis to get a laparoscopic surgery?
Okay first of all I want to say right now by reading what I did that you sound exactly like me and what I went through.
Do me a favor read my journal about "Endometriosis and Migraines" All of what I went through is on that including the reflux, nausea, ibs etc. I think you do have it.
I would never have been diagnosed if that Endometrioma didn't grow because Endo can't be seen on a scan. If you have little cysts on your liver and ovaries it is really possible as I had some on my kidney's as well.
This is what you need to do. Take all of your results to an Endometriosis specialist that excises Endo. Where do you live I can help you find one.
You can't let them not treat this and its making me mad because you are going through everything I went through before someone finally listened to me.
I had rectal pain since I was 15 yrs I was told I had IBS forever and finally when I went to the endo specialist within seconds did a deep rectal exam and found the rectovaginal cyst which is severe endo. Same with an Endometrioma.
I believe you pain and sympathize with what you are going through because I lived that life and I wanted to die because I was in so much pain and no one would listen. This is why I am an advocate because this disease millions of women have and we keep getting ignored.
Please let me know where you live so I can help you. If you have any other questions please ask and read the journal you will see that we are alike with this.
Do me a favor read my journal about "Endometriosis and Migraines" All of what I went through is on that including the reflux, nausea, ibs etc. I think you do have it.
I would never have been diagnosed if that Endometrioma didn't grow because Endo can't be seen on a scan. If you have little cysts on your liver and ovaries it is really possible as I had some on my kidney's as well.
This is what you need to do. Take all of your results to an Endometriosis specialist that excises Endo. Where do you live I can help you find one.
You can't let them not treat this and its making me mad because you are going through everything I went through before someone finally listened to me.
I had rectal pain since I was 15 yrs I was told I had IBS forever and finally when I went to the endo specialist within seconds did a deep rectal exam and found the rectovaginal cyst which is severe endo. Same with an Endometrioma.
I believe you pain and sympathize with what you are going through because I lived that life and I wanted to die because I was in so much pain and no one would listen. This is why I am an advocate because this disease millions of women have and we keep getting ignored.
Please let me know where you live so I can help you. If you have any other questions please ask and read the journal you will see that we are alike with this.
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