Aa
Cyst
Hi everyone,
I'm hoping to get some help from those of you that have a lot more experience with all of this than I do. Here's my story:
I'm 25, and had been having horrible cramps that started about two years ago. For a while, it felt like one big contraction/cramp that only lasted about 5min but made double over and feel nauseous. It started getting much worse about nine months ago where I would be in that intense pain for an hour or so, and I had times where I feel like I almost passed out and ended up just lying on the bathroom floor after crawling out of bed to get some Advil. Then a few months in to this pain, I started having bad days (with much less pain, but much more than was 'normal' for me) a few days before and after starting my period. After doing some research, I felt like it could be endo and made an appointment for a wellness exam that I needed anyways, hoping they would also suggest tests to figure out what was wrong.
When I told the NP I saw that I had been having very bad cramping, she just asked how many Advil I had been taking and suggested I take 4 instead of 2. While I should have pressed harder and done a better job of exposing the severity of my symptoms, her response kind of surprised me. I'd never taken that much Advil, and she made it sound like it was all normal. Needless to say, the next month when I tried her advice it did nothing to help.
I went to my GP after that to see if they would help. She was much more helpful and suggested that it could be PCOS or endo. She sent me off to get an abdominal and internal ultrasound. That came back showing that I had a small complex cyst on each ovary. I don't think I've ever been told the exact sizes. I was put on Minastrin, and told to get a followup in 3-4 months. A few months later and a move across country, I got an ultrasound done at a new office.
TLDR - THE MOST IMPORTANT PART:
I have not had a laparoscopy yet, but the new gynecologist feels that the cysts are endometriomas/chocolate cysts (apparently my first gyno noted this too, but never told me). Originally, they said that they would do a third ultrasound before discussing further treatment, but talking to the NP again they said they if the cysts remain "stable" they would want to continue doing periodic ultrasounds to monitor and treat the symptoms with BC pills. They also are afraid that I would lose my overlies if I had surgery, and didn't seem to see this as an option.
Now, I have been doing a lot of reading online, and it seems like many women have had these cysts successfully removed. I am worried about the possibility of losing my ovaries, but I am also concerned about leaving the cysts there and also not knowing how much endometriosis is in there. This may be totally wrong, but to me it sounds like endometriomas indicate a higher stage of endo.
The Minastrin has helped a lot. I haven't had horrible cramps since the first month I was on it, but now I am having way more pain/discomfort throughout the month. I have days where my whole abdomen is sore, and other times one ovary or the other hurts - not enough to put me in bed, but it's distracting. I also have pain when urinating for about a week after my period.
I have not gotten to meet with this gyno, I've only heard her opinions through the NP. I do really like their office, but I do not think there are specialists. I am thinking it may be wise to get a second opinion, but I don't know where to go. Can anyone reccommend someone in Central Florida? I know there is an Endometriosis Center, but I have not seen them on any of the lists of specialists out there.
Any help or suggestions you guys can give me would be very much appreciated!
I'm hoping to get some help from those of you that have a lot more experience with all of this than I do. Here's my story:
I'm 25, and had been having horrible cramps that started about two years ago. For a while, it felt like one big contraction/cramp that only lasted about 5min but made double over and feel nauseous. It started getting much worse about nine months ago where I would be in that intense pain for an hour or so, and I had times where I feel like I almost passed out and ended up just lying on the bathroom floor after crawling out of bed to get some Advil. Then a few months in to this pain, I started having bad days (with much less pain, but much more than was 'normal' for me) a few days before and after starting my period. After doing some research, I felt like it could be endo and made an appointment for a wellness exam that I needed anyways, hoping they would also suggest tests to figure out what was wrong.
When I told the NP I saw that I had been having very bad cramping, she just asked how many Advil I had been taking and suggested I take 4 instead of 2. While I should have pressed harder and done a better job of exposing the severity of my symptoms, her response kind of surprised me. I'd never taken that much Advil, and she made it sound like it was all normal. Needless to say, the next month when I tried her advice it did nothing to help.
I went to my GP after that to see if they would help. She was much more helpful and suggested that it could be PCOS or endo. She sent me off to get an abdominal and internal ultrasound. That came back showing that I had a small complex cyst on each ovary. I don't think I've ever been told the exact sizes. I was put on Minastrin, and told to get a followup in 3-4 months. A few months later and a move across country, I got an ultrasound done at a new office.
TLDR - THE MOST IMPORTANT PART:
I have not had a laparoscopy yet, but the new gynecologist feels that the cysts are endometriomas/chocolate cysts (apparently my first gyno noted this too, but never told me). Originally, they said that they would do a third ultrasound before discussing further treatment, but talking to the NP again they said they if the cysts remain "stable" they would want to continue doing periodic ultrasounds to monitor and treat the symptoms with BC pills. They also are afraid that I would lose my overlies if I had surgery, and didn't seem to see this as an option.
Now, I have been doing a lot of reading online, and it seems like many women have had these cysts successfully removed. I am worried about the possibility of losing my ovaries, but I am also concerned about leaving the cysts there and also not knowing how much endometriosis is in there. This may be totally wrong, but to me it sounds like endometriomas indicate a higher stage of endo.
The Minastrin has helped a lot. I haven't had horrible cramps since the first month I was on it, but now I am having way more pain/discomfort throughout the month. I have days where my whole abdomen is sore, and other times one ovary or the other hurts - not enough to put me in bed, but it's distracting. I also have pain when urinating for about a week after my period.
I have not gotten to meet with this gyno, I've only heard her opinions through the NP. I do really like their office, but I do not think there are specialists. I am thinking it may be wise to get a second opinion, but I don't know where to go. Can anyone reccommend someone in Central Florida? I know there is an Endometriosis Center, but I have not seen them on any of the lists of specialists out there.
Any help or suggestions you guys can give me would be very much appreciated!
I am so happy that you are doing your research and that is the most important thing to do. Being your own advocate is what will get you better care and better understanding.
Yes having an Endometrioma is an indicator of moderate to severe disease so that is always something to take into consideration. I had what looked to be a 10 cm complex mass when I had an ultrasound at 26 but it ended up being only 5cm and everything was wrapped around my uterus and my pelvis was frozen (kissing ovaries) That is why the cyst looked complex as well as larger than they thought. Each time I had an US they always said they were seeing my ovaries but they couldn't have. So that could be the same for you as they said "complex". If you have surgery they will be able to tell if you have PCOS as well as it can go hand in hand with Edno
Here is the one doctor that is in your area and as you can read it sounds like he doesn't do excision (cut out) the disease so it might be better for you if it is at all possible to see Dr.Sinervo in Georgia. I have met him personally and I know many women who have had surgery with him and he is one of the best!
Dr. Steven McCarus
Center for Complex Abdominal and Pelvic Pain Syndrome,
400 Celebration Place,
Celebration, FL 34747
T:407-303-4424
Specialisation: GYN only
Bowl/urinary tract surgery: Unknown
*Dr. McCarus is well-known for his adhesiolysis surgery. It is unclear whether he possesses a similar expertise in endometriosis excision.
Specialisation: GYN only
Bowl/urinary tract surgery: Unkown
Dr. Kenny Sinervo
Center for Endometriosis Care (CEC),
Perimeter Town Center,
1140 Hammond Drive,
Building F, Suite 6220,
Atlanta, GA 30328 USA
T: (770) 913-0001
Specialisation: GYN only
Bowl/urinary tract surgery: Does some bowel/urinary tract work. Works with an assisting colorectal surgeon.
Yes having an Endometrioma is an indicator of moderate to severe disease so that is always something to take into consideration. I had what looked to be a 10 cm complex mass when I had an ultrasound at 26 but it ended up being only 5cm and everything was wrapped around my uterus and my pelvis was frozen (kissing ovaries) That is why the cyst looked complex as well as larger than they thought. Each time I had an US they always said they were seeing my ovaries but they couldn't have. So that could be the same for you as they said "complex". If you have surgery they will be able to tell if you have PCOS as well as it can go hand in hand with Edno
Here is the one doctor that is in your area and as you can read it sounds like he doesn't do excision (cut out) the disease so it might be better for you if it is at all possible to see Dr.Sinervo in Georgia. I have met him personally and I know many women who have had surgery with him and he is one of the best!
Dr. Steven McCarus
Center for Complex Abdominal and Pelvic Pain Syndrome,
400 Celebration Place,
Celebration, FL 34747
T:407-303-4424
Specialisation: GYN only
Bowl/urinary tract surgery: Unknown
*Dr. McCarus is well-known for his adhesiolysis surgery. It is unclear whether he possesses a similar expertise in endometriosis excision.
Specialisation: GYN only
Bowl/urinary tract surgery: Unkown
Dr. Kenny Sinervo
Center for Endometriosis Care (CEC),
Perimeter Town Center,
1140 Hammond Drive,
Building F, Suite 6220,
Atlanta, GA 30328 USA
T: (770) 913-0001
Specialisation: GYN only
Bowl/urinary tract surgery: Does some bowel/urinary tract work. Works with an assisting colorectal surgeon.
So, somehow I submitted this without meaning to. Please forgive any spelling/autocorrect errors and the incomplete post title.
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