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Surgery Thursday, nervous about my doc
Hi, I am here for some advice or comfort! I am 26 years old, and have surgery coming up on thursday (April 10th).
Let me start from the beginning.. I was diagnosed with endometriosis in 2005, through laproscopic surgery. She didn't tell me what stage it was, but I assume probably stage one or two since there was only 4 different spots that she needed to remove. Overall, surgery was easy and it really seemed to help. The main issue I had at that time was heavy periods and cramping. After a year or two it just seemed to go downhill fast.
I have 3 kids, ages 5, 3, and 1.5. I think that I am probably pretty lucky to have them given all of my health issues! Before I got pregnant with my 5 year old, I was having heavy periods and the same cramping with them (low down in my back and abdomen), and alternating constipation and diarrhea which basically became my version of "regular" up until 6 months ago. My pregnancy with him was a little rough since I have an "irritable uterus". I had him a month early, and had a 4th degree tear, so recovery was a bit rough. Anyways, I guess the cramping and heavy bleeding has just increased since then. My next two pregnancies were about the same.
I am jumping all over the place but I can't seem to gather my thoughts. Fast forward to my diagnosis's and symptoms through the last two years.
Asthma - diagnosed in childhood
Endo - 2005
Pituitary microadenoma - 2012
Antiphospholipid antibody syndrome ( still not confirmed ) - 2012
Celiac disease - 2012
These are my current diagnoses and everything has been "okay" for the last few years but the last 6 months I have felt honestly like I am dying. After having my daughter in Sept 2012, my periods came back about 2 months later. I exclusively nursed her, but they still were back and as normal as they typically were. Then about 6-8 months ago, they started getting longer and longer, and heavier and heavier. I have been tracking this whole time. A typical month for me is 2 weeks of my period, then two weeks off with spotting on and off. My periods are extremely heavy and clumpy. The cramping actually isn't as bad as it used to be, but that could be because I am just always cramping.. I also have gotten severe constipation. I am now to the point where I need help to even go. Enemas have saved my life. I try not to use them often because I don't want to make the problem worse, but I don't know what else to do. I eat very healthy, strictly gluten free. Rarely do I eat anything processed, and I drink a lot of fresh smoothies and juices. I rarely have any GMO's as well. I have done all the diet changes that I could think of and research that should have helped, but I only get worse. I am also EXHAUSTED.. I can barely function through the day or even get out of bed. I walk up the stairs and I feel like I need a nap. My house has gotten out of control and I feel like I am drowning. I even quit my job because it has gotten so bad.
I have seen multiple doctors for this that were no help at all... Until two weekends ago when I went to the ER because I was having very severe stomach pain. I live in a tiny town, so they weren't able to do an ultrasound. So they did a few swabs and blood tests that came back fine. The exam however, was excruciating. I burst into tears because it hurt so bad! He said my uterus was enlarged, retroflexed, and retroverted. Also, very tender... yes. He wanted me to get an ultrasound the following wednesday. So I did. The report came back saying that I have an abnormal uterus and right ovary. Numerous cysts on the ovary and few follicles. My uterus showed a polyp and not much lining to the uterus. So he sent me to my old doctor that performed my last laproscopy. I saw her yesterday, she recommended a hysteroscopy to remove the polyp, then a D&C to remove the tissue to get it tested for cancer (cervical, colon, and ovarian cancer run in my family). Then they will perform a laproscopy, she said she thinks my endo has gotten a lot worse. She said that most of it could be behind my uterus since during the exam I had most pain behind my cervix.
It is so painful that when my boyfriend and I had sex two days ago, I woke up the next morning swollen and in severe pain. It is horrible! I feel like it is ruining my life and my relationships. But I agree that the pain is back there and my right side, probably due to the cysts.
So here are my questions, is it realistic for me to think my endo has probably spread to my intestines or bowel? I have stomach aches constantly and stabbing rectal pain at times, even with just passing gas. I am worried that they will go in there and not be able to solve the problem. I don't know if I need to ask her to look more closely at that area, or if that is something they just do. Basically, I don't know what I am doing! I am beyond grateful that I will have answers soon, but at the same time very worried. Also, has anyone had endometrial cancer that started this way? I am less worried about that, but it is a possibility.
Sorry for the long rambling post, my head is not in the right place right now and I am exhausted. Thank you so much for your answers and responses!!!
Let me start from the beginning.. I was diagnosed with endometriosis in 2005, through laproscopic surgery. She didn't tell me what stage it was, but I assume probably stage one or two since there was only 4 different spots that she needed to remove. Overall, surgery was easy and it really seemed to help. The main issue I had at that time was heavy periods and cramping. After a year or two it just seemed to go downhill fast.
I have 3 kids, ages 5, 3, and 1.5. I think that I am probably pretty lucky to have them given all of my health issues! Before I got pregnant with my 5 year old, I was having heavy periods and the same cramping with them (low down in my back and abdomen), and alternating constipation and diarrhea which basically became my version of "regular" up until 6 months ago. My pregnancy with him was a little rough since I have an "irritable uterus". I had him a month early, and had a 4th degree tear, so recovery was a bit rough. Anyways, I guess the cramping and heavy bleeding has just increased since then. My next two pregnancies were about the same.
I am jumping all over the place but I can't seem to gather my thoughts. Fast forward to my diagnosis's and symptoms through the last two years.
Asthma - diagnosed in childhood
Endo - 2005
Pituitary microadenoma - 2012
Antiphospholipid antibody syndrome ( still not confirmed ) - 2012
Celiac disease - 2012
These are my current diagnoses and everything has been "okay" for the last few years but the last 6 months I have felt honestly like I am dying. After having my daughter in Sept 2012, my periods came back about 2 months later. I exclusively nursed her, but they still were back and as normal as they typically were. Then about 6-8 months ago, they started getting longer and longer, and heavier and heavier. I have been tracking this whole time. A typical month for me is 2 weeks of my period, then two weeks off with spotting on and off. My periods are extremely heavy and clumpy. The cramping actually isn't as bad as it used to be, but that could be because I am just always cramping.. I also have gotten severe constipation. I am now to the point where I need help to even go. Enemas have saved my life. I try not to use them often because I don't want to make the problem worse, but I don't know what else to do. I eat very healthy, strictly gluten free. Rarely do I eat anything processed, and I drink a lot of fresh smoothies and juices. I rarely have any GMO's as well. I have done all the diet changes that I could think of and research that should have helped, but I only get worse. I am also EXHAUSTED.. I can barely function through the day or even get out of bed. I walk up the stairs and I feel like I need a nap. My house has gotten out of control and I feel like I am drowning. I even quit my job because it has gotten so bad.
I have seen multiple doctors for this that were no help at all... Until two weekends ago when I went to the ER because I was having very severe stomach pain. I live in a tiny town, so they weren't able to do an ultrasound. So they did a few swabs and blood tests that came back fine. The exam however, was excruciating. I burst into tears because it hurt so bad! He said my uterus was enlarged, retroflexed, and retroverted. Also, very tender... yes. He wanted me to get an ultrasound the following wednesday. So I did. The report came back saying that I have an abnormal uterus and right ovary. Numerous cysts on the ovary and few follicles. My uterus showed a polyp and not much lining to the uterus. So he sent me to my old doctor that performed my last laproscopy. I saw her yesterday, she recommended a hysteroscopy to remove the polyp, then a D&C to remove the tissue to get it tested for cancer (cervical, colon, and ovarian cancer run in my family). Then they will perform a laproscopy, she said she thinks my endo has gotten a lot worse. She said that most of it could be behind my uterus since during the exam I had most pain behind my cervix.
It is so painful that when my boyfriend and I had sex two days ago, I woke up the next morning swollen and in severe pain. It is horrible! I feel like it is ruining my life and my relationships. But I agree that the pain is back there and my right side, probably due to the cysts.
So here are my questions, is it realistic for me to think my endo has probably spread to my intestines or bowel? I have stomach aches constantly and stabbing rectal pain at times, even with just passing gas. I am worried that they will go in there and not be able to solve the problem. I don't know if I need to ask her to look more closely at that area, or if that is something they just do. Basically, I don't know what I am doing! I am beyond grateful that I will have answers soon, but at the same time very worried. Also, has anyone had endometrial cancer that started this way? I am less worried about that, but it is a possibility.
Sorry for the long rambling post, my head is not in the right place right now and I am exhausted. Thank you so much for your answers and responses!!!
You are right he is one of the top specialist there, however I would agree that Dr. Koh is the one to go to . I know its a travel put if financially possible I would go to Dr. Koh.
Dr. Eric Heegaard
OBGYN West,
800 Prairie Center Drive,
Suite 130,
Eden Prairie, MN 55344
T: 952-249-2000
OBGYN West,
14001 Ridgedale Drive,
Suite 200,
Minnetonka, MN 55305
T: 952-249-2000
W: www.drheegaard.com/
Patients speak highly of Dr. Heegaard's excision surgery but there have been some concerns about complication rates of assisting general surgeons in cases with bowel involvement. If you are seeking surgery with Dr. Heegaard and suspect you may require bowel surgery, please ask about complication rates or consider going to Dr. Koh in Milwaukee, who operates on the bowels himself and has considerable experience in treating bowel disease.
Specialisation: GYN only
Bowl/urinary tract surgery: Works with a general surgeon.
Dr. Charles Koh
Reproductive Speciality Center,
2015 E. Newport Avenue,
Suite 707,
Columbia Street,
Mary's Hospital Medical Arts Building,
Milwaukee, Wisconsin.
T: (414) 289-9668
*Dr. Koh is recommended by Dr. Redwine as the most skilled endometriosis surgeon in the USA.
Dr. Koh:
Specialisation: GYN only
Bowl/urinary tract surgery: Does all urinary tract and bowel work. Ubersurgeon!
Dr. Eric Heegaard
OBGYN West,
800 Prairie Center Drive,
Suite 130,
Eden Prairie, MN 55344
T: 952-249-2000
OBGYN West,
14001 Ridgedale Drive,
Suite 200,
Minnetonka, MN 55305
T: 952-249-2000
W: www.drheegaard.com/
Patients speak highly of Dr. Heegaard's excision surgery but there have been some concerns about complication rates of assisting general surgeons in cases with bowel involvement. If you are seeking surgery with Dr. Heegaard and suspect you may require bowel surgery, please ask about complication rates or consider going to Dr. Koh in Milwaukee, who operates on the bowels himself and has considerable experience in treating bowel disease.
Specialisation: GYN only
Bowl/urinary tract surgery: Works with a general surgeon.
Dr. Charles Koh
Reproductive Speciality Center,
2015 E. Newport Avenue,
Suite 707,
Columbia Street,
Mary's Hospital Medical Arts Building,
Milwaukee, Wisconsin.
T: (414) 289-9668
*Dr. Koh is recommended by Dr. Redwine as the most skilled endometriosis surgeon in the USA.
Dr. Koh:
Specialisation: GYN only
Bowl/urinary tract surgery: Does all urinary tract and bowel work. Ubersurgeon!
Thank you so much. I am afraid I am going to lose so many of my organs. I've been so so so sick for so long, and it's to the point I can't even work or live normally. I feel like I'm dying. I definitely am going to call a different doctor tomorrow to see if I can get in with him. He is Eric Heegaard in Minneapolis area. From googling, it seems he does good work with endo patients, and also uses the davinci robot. I really appreciate your advice and support!!
Okay so from what I have read it sounds like it is very possible the Endo was not fully removed in 2005 and continued to grow and yes it is possible to be on the bowels as well as rectovaginal. It also sounds like it is possible that you have Adenomyosis as well, have you heard of that before? An enlarged uterus and heaving long periods are symptoms of Adeno but the only way to find out is through a hysterectomy.
Because its painful to have sex I would think that is from the Endo and it could have obliterated the cul de sac.
My suggestion to you is to see an Endo specialist. You might like your obgyn but what will happen is that she/he will go in and not fully remove all the endo because the skill level is just not there. There are only a handful of Endo specialists around the world for 179 million women who suffer and it is vital to have the Edno excised from everywhere not just lasered because that doesn't get to the root of the disease.
Endometriosis causes a variety of issues along with Thyroid and pituitary.
I can guide you in the right direction for an Endo specialists I just need to see where abouts that you are. Hopefully there is one near you.
Sorry for the late reply I was away this weekend and I am just catching up now.
Because its painful to have sex I would think that is from the Endo and it could have obliterated the cul de sac.
My suggestion to you is to see an Endo specialist. You might like your obgyn but what will happen is that she/he will go in and not fully remove all the endo because the skill level is just not there. There are only a handful of Endo specialists around the world for 179 million women who suffer and it is vital to have the Edno excised from everywhere not just lasered because that doesn't get to the root of the disease.
Endometriosis causes a variety of issues along with Thyroid and pituitary.
I can guide you in the right direction for an Endo specialists I just need to see where abouts that you are. Hopefully there is one near you.
Sorry for the late reply I was away this weekend and I am just catching up now.
I wrote this a couple of days ago on a different board and had no responses, so I copied and pasted. I wanted to add though, that I got my lab work back yesterday and my thyroid is slightly hyperactive. So that threw out hypothyroidism being the cause of the extreme fatigue and chronic constipation. My prolactin levels were also normal, so my pituitary adenoma is probably not a prolactin tumor.
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