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Post by mona on Jul 17, 2006 22:55:28 GMT -5
I was wondering what i should do. First off I live in Canada and the way it works here is everytime you see another doctor its about a 3 month wait. I have seen three so far since Jan. I felt that i had a bowel obstruction because i have IBS since 15 (so i have been told) I took an enema but nothing came out and again and nothing so I did a colon cleanse. It was so painful that I had to stop. For about 3 months after that I took myself to the doctors office because the spells i was getting were not normal. I would have a sharp pain in my lower ab or vagina and i would all of the sudden have a hot flash than almost faint. The pain would last like one catraction for 5 hrs. I got an US done Jan 11th 2006 and it showed a 10.2cm mass behind my uterus. The doctor i went to wanted to operate and he wasnt sure if it would be two surgeries and i wanted it all done in one surgery. So i changed plus he was an arrogant jerk who thought he was GOD. He also said that 95% chance that its endo. I found myself a ONC/GYN and he thought that I had Cancer so he did a ct scan April 2006 plus an US plus Ca-125. it showed two cysts one in my ovary and one on my kidney. One was 5.4cm and the other 3.2cm. My ca-125 was 38 and i was ovulating. Well that doctor redid the ca-125 and it was 78 and i was on my 4th day of my period. He didnt think that i had cancer because the cyst was shrinking so he sent me to someone else. She wanted to do the whole watch and wait. So she put me on the pill. That was in may. In the end of June I had another US and it showed the cyst still inside the ovary but shrunk to 3.2 and another one adjacent to it that was 1.5cm. My ca-125 came back 18. So i have been on the pill and not sure if I have endo. I am textbook. and she wont do surgery to varify. I was told at 15 that i had it, and i know that you cant tell unless you go in. Sex has been painful since I lost my viginity i have never enjoyed it. I get painful rectal pains all of the sudden, Two days before period i have to have many BM and this was an indication that it was coming I had to take 2 advil every 4 hrs to stop the pain for atleast 6 days. Also until the 4th day I could have a bm and when i did the cramps subsided. I started having late periods this year maybe i always have but never notice. I am not having sex or trying to have another child. So again they wont operate. It took about 1 1/2 yrs to concieve and that was 3 times aday no lie. What should I do now? I have another follow up 4 months from now. Also the recent US said that there was a 1.5cm cyst adjacent to the one in the ovary. How is that possible if I am on the pill continuously? I shouldnt be ovulating right? I am so confused i need help
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louise
Junior Member
looby lou baby susprise
Posts: 70
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Post by louise on Jul 18, 2006 10:03:00 GMT -5
hi mona welcome x keep your chin up the support is here x
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louise
Junior Member
looby lou baby susprise
Posts: 70
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Post by louise on Jul 18, 2006 10:04:35 GMT -5
hi can anyone offer mona any advice, i dont know enough about endo to give advise so i just offered my suport and welcomed her, x
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louise
Junior Member
looby lou baby susprise
Posts: 70
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Post by louise on Jul 18, 2006 10:06:39 GMT -5
hi mona i know ouchy and ezuille are very good to talk too as they know a great deal on endo, i'm sorry i cant help, i came on today and read your post and felt awlful cause i didnt know what to say, i hope things improve x sending a big hug x
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Post by erzulie on Jul 18, 2006 10:07:21 GMT -5
Welcome to the forum Mona. I'm sorry you've had such a tough time, and unfortunately I don't know what to tell you except that you definitely need to have a laparoscopy done! I don't know why your doctors are refusing to do this. I also don't know much about how the Canadian medical system works, but there are several Canadian members on this board so maybe they can give you some advice on how to get this done. Good luck!!
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meka
Full Member
Posts: 164
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Post by meka on Jul 23, 2006 21:02:28 GMT -5
Hi, mona. Sorry for everything you are going through, and for you not getting the treatment you deserve.
I agree with erzulie, I think you definitely need to try everything you can to get a laparoscopy. It's amazing--but, not surprising-- that the doctors are just relying on the pills to help you, and aren't willing to find out for sure.
Do you think that if you went off the pills and told the doctors that you are trying to conceive again, that would make them do the laparoscopy? It looks like going off the pill would likely cause the cysts to grow again, but has the pill improved your pain level? Because if you're still having pains, or if other cysts are growing, it might be worth going off the pills and telling the doctors that you want to conceive.
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Post by mona on Jul 24, 2006 19:38:54 GMT -5
I just got my 4th U/S done since Jan06 and it came back with three cyst. How can that be if I am not ovulating?? This is so crazy. I am feeling better for the most part when it comes to pain because I am not gettign my period or ovulating so I dont feel the pain. If i was to go off i would definitly been hurting. I feel better hormonally finally in three years since having my daughter. When i went for my followup of this u/s she wasnt worried and said if it was endo and its bad there is nothing that can be done about it anyways. Is this worth getting a 4th opinion?
mona
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Post by ouchy on Jul 24, 2006 23:05:58 GMT -5
Hi, mona! Sorry you're in this mess. I'm not sure about the cysts--they are ovarian cysts, right? Could it be that they were extremely large to begin with and what was seen today was the size to which they have so far shrunk (and will maybe shrink more with time)? The treatment for PCOS (poly-cystic ovarian syndrome) is pretty much the birth control pill, so yah, you shouldn't be ovulating, and the cysts shouldn't continue building-up, because no more follicles are being produced.
As far as the doctor's comment on there being nothing to do if the endo is bad--I recommend you get yet another opinion. There is ALWAYS something to try, especially if you've yet to be properly diagnosed.
Good luck with everything. Hope you will be able to find someone to have a look around inside. I know it is a long wait in Canada. We're here for you in the meantime!
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Post by ouchy on Jul 24, 2006 23:07:48 GMT -5
Wait, I just re-read your first post. One cyst was not on the ovary--it was on your kidney, so at least one cyst can't be an ovarian cyst. It is possible for large endometriotic cysts (chocolate cysts) to show up on ultrasounds and such. ...could be another clue that it may be endo. Something you might want to point out if you get to see a specialist or go for another opinion.
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Post by ouchy on Jul 24, 2006 23:48:45 GMT -5
And in trying to find information for you about chocolate cysts and ultrasounds and all that jazz, I came up with this link unrelated to ovarian cysts and chocolate cysts, but it does deal with a genetic disorder of polycysts on the kidneys. www.enlmedical.com/article/000502.htmProbably not what you have, but it doesn't hurt to know what is out there! I'll try to find more about chocolate cysts of kidneys.
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Post by ouchy on Jul 24, 2006 23:57:44 GMT -5
Okay, I'm too tired to do a thorough search, but I will compile a little info from a couple separate sites. 1) Endometriosis can occur on the kidneys. www.emedicine.com/emerg/topic165.htm2) Chocolate cyst can show up on ultrasound. An article and some really cool pics of ultrasound and MRI's of chocolate cysts (bottom of webpage). www.emedicine.com/radio/topic250.htm
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Post by mona on Jul 25, 2006 21:22:16 GMT -5
So these are the three possible diagnosis; endo, PCOS, or Polycystic kidney Disease. Now do I wait for the 5th u/s in November or do I look for another doctor? Do they have to do a lap to find the diagnosis of the PCOS and PCKD? SO if I am on the pill and they are just regular cyst than they should completely shrink? And if they are endo they shouldnt? and if its PCOS am i going to keep developing the cyst while on the pill? I still so confused. I need a doctor in my city that knows about this stuff and is willing to help me. I am sick of this watch and wait stuff.
Also you are all so wonderful and I thank you so much for all the information that you have given me.
Mona
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Post by ouchy on Jul 25, 2006 21:37:39 GMT -5
Hi, mona. I'm not sure about the answers to your questions, but they sound like great questions to ask a doctor. PCOS is actually diagnosed by a miriad of symptoms, one being polycysts on the ovaries during an ultrasound. They also do a case history--maybe excessive body hair, loss of hair, irregular periods, "tire" tummy (classic PCOS "tire" of fat around the waist), and hormone testing. I'm not sure at all about the PCKD, as it was new for me and thought I'd just put the link there for you to read. The endo is the only one for sure that I know they do a lap to diagnose. As far as the birth control pill shrinking the ovarian cysts, I think it would shrink them--how far, I don't know. However, as you wouldn't be ovulating while on the pill, no new follicles should be forming, leading to no new formation of cysts. I also don't know to what degree the pill shrinks the endometriotic implants.
Sorry I'm not more help.
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Post by mona on Jul 25, 2006 21:43:12 GMT -5
I appreciate anything info that you give me it helps ty so much
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