I was scheduled yesterday (Tuesday, October 17th) for the following procedures: D&C, hysteroscopy and an ablation. After my ablation consult appointment with Dr. R last Thursday I went home and turned to Google for my new diagnosis of endometrial hyperplasia and I couldn't find one website what so ever that said ablation was the right thing to do. I only went for that ablation consult because I was bleeding so much and I really wanted the bleeding to stop. We felt by the time I got an appointment for the consult the biopsy results would be back and it was. With the new diagnosis of hyperplasia this is a disqualification for an ablation surgery but I think this new doctor went along with it and scheduled it for me anyway because I was so frustrated by my bleeding. Of course she also wanted to do the D&C and hysteroscopy and have the entire lining of the uterus biopsied to rule out anything else other than the hyperplasia but did not let me know that D&C usually stops the bleeding from hyperplasia once it is all scraped out anyway. If you do an ablation then your uterus lining is damaged forever and cannot be biopsied in the future. With hyperplasia you need to continue to monitor it. The D&C is a treatment for hyperplasia in someone like me who cannot take progesterone to treat it. There is a chance it can progress but most likely this D&C will take care of it and my lining will revert back to normal. If by chance it progresses then we will know for sure that the Tamoxifen didn't cause it and it is more than likely my hormones did and I will have to have a hysterectomy. However, if it reverts back to normal then we can assume that Tamoxifen caused this condition as it is one of the 3 side effects from taking this drug and there is nothing more to do and since I have been off of Tamoxifen for almost a year now I should have no more worries that this will happen again.
After my extensive research on hyperplasia and ablation I decided on Monday to call my doctor and let her know why I would not be doing the ablation surgery the next day. She understood and apologized for not telling me more about why it was not a good idea but she is new and fresh out of school and she said where I came in just wanting my bleeding to stop and it was an ablation consult appointment she assumed I knew what I wanted and that I wanted the ablation. She said because of me she will use this as a learning tool and question the next person who is diagnosed with hyperplasia and tell them the risks going forward with ablation and not being able to monitor the uterus. After all hyperplasia is a pre-cancer and something to not be messed with and you want to be able to monitor the uterine lining. I have learned to always do my research and in this case I am super glad I did. The internet can be our friend and I made sure to only go to the reputable sites when I was doing my research. I am glad that I found this information and that I didn't destroy my uterus with an ablation because if it progresses it can lead to cancer but you would have no signs or symptoms with an ablated uterus until it is too late. In the future if I do get my periods back which I probably will now that my lining has been removed (the symptoms of hyperplasia is missed periods and heavy extensive bleeding) and since my hormone levels are normal then I may consider ablation in the future but that is after we have checked my uterus over and over for abnormal thickening. For now I am anxious to see what my body is going to do.
I had my D&C surgery yesterday along with a hysteroscopy. These procedures were performed in the hospital operating room and I was put under so that was nice that I didn't have to feel any of the pain or discomfort. After that endometrial biopsy I was a little nervous that I would feel the same type of pain with this but so far so good. I can feel that they did do something "down there" but it isn't that painful, I have a little bleeding but that is normal with this type of surgery and I have some minor cramping. I only hope that as the day progresses they don't get worse. I started with a cold yesterday but of course I didn't tell the hospital that because I did not want to delay this surgery. I had been bleeding for 19 freaking days and I couldn't take any more!!! Today I feel like crap from the cold but maybe that is good since it is overriding any pain I might be feeling from the D&C procedure.
The tissue samples are sent to pathology and next Monday I have a followup appointment with Dr. R and we will go over the results. If by chance the results aren't in then she will call me to reschedule my follow up until they come back. I am feeling positive and hopeful that it won't show anything other than the hyperplasia and that going forward we will monitor my uterus until we are at a point that it looks good and further monitoring doesn't need to take place.
***PATHOLOGY REPORT FOR D&C PROCEDURE ON 10/17/17:
Disordered proliferative phase endometrium and reparative changes. The prior endometrial biopsy, is reviewed in conjunction with this biopsy, and residual endometrial hyperplasia is not observed.
This is the best news ever, no additional hyperplasia and no cancer!!! It appears the in office endometrial biopsy just happened to grab the only hyperplasia that was there, what are the odds? As for the rest of my endometrium, it was very disordered and the reason for my abnormal bleeding. From here I am anxious to see if my cycles return because they should or at least my hormone level tests say they should. If they don't then this might be a new ongoing problem with my body and this will happen again as my uterine lining thickens and doesn't shed. If it happens again then I will for sure get a hysterectomy and have my uterus removed.
I know my hormone levels are back and that is not a good thing for a breast cancer survivor whose cancer was highly ER/PR positive but for me I love feeling this good again and I am enjoying every second of it and all without fear of the unknown. I refuse to let fear get me down because these days are good in fact they are really, really good. I feel so normal and that is a good thing. I am living in the moment and soaking up these days that I feel are a gift and enjoying my quality of life. Some may disagree and some may take drastic measures to keep the hormones from flowing through their bodies and I respect that. I too once took Tamoxifen and I felt like crap the entire 1 year and 5 months I took it. It wasn't for me and I as well as my doctor feel that this drug did cause these issues. Should my endometrium continue to be normal then we will know for sure that Tamoxifen caused this issue with the lining growing out of control and thickening. I had no choice but to get a D&C to clean it up or else I would have probably slowly bled to death because that is how I was feeling after 19 days of it with no signs of stopping. Through this whole cancer journey I got every odd/ rare side effect possible so it isn't a surprise that I was one of the many who ended up with the uterine thickening and causing bleeding problems possibly from the Tamoxifen.
Wednesday, October 18, 2017
Friday, October 13, 2017
Endometrial hyperplasia without atypia (Thanks Tamoxifen)
So the title of this blog is endometrial hyperplasia without atypia. This is rather large word but this is what I have been diagnosed with and according my OB/GYN is most likely from taking Tamoxifen for that year and a half. It has almost been a year since I stopped taking it. On September 28th after I got home from the grocery store I was unloading the groceries and all of a sudden felt something coming out of me and I initially thought I had leaked urine even though I didn't feel that pressure. I went to the bathroom and I had blood all over my underwear, pants and legs. I had to strip down and get in the shower to clean up and get my clothes washed. I was really shocked and at first thought it was my period returning with a vengeance since I had not had once since February.
The blood was really red and the consistency of a bloody nose which is very different from my normal menstrual cycles but I wasn't alarmed yet because I thought maybe my body was just readjusting. I also had no cramping or discomfort what so ever which is also very unusual for me. I almost thought that I was pretty lucky to get my period back without cramping. We ended up going camping Friday night for the weekend because we needed to pull our trailer off of the mountain before it snows and we were pushing it with the 1st of October on that Sunday. We had a great time camping but Saturday night something very strange happened that really scared me. We all headed to bed around 10:30PM so I went to the bathroom and put a new tampon in like I usually do right before bed and it wasn't very soaked just the normal menstrual flow. A little after midnight I woke up really wet and seriously thought maybe I was sleeping so deep that I peed the bed. I went into the bathroom and as soon as I sat down on the toilet my super flow tampon fell out of me along with very large blood clots. The tampon was all of the way soaked through in about an hour and a half. I cleaned myself up and changed my clothes and tried to go back to sleep. I couldn't sleep because my initial thought was that I was hemorrhaging and we were up on the mountain far away from a hospital. I didn't wake Kaci or Jeff and only slept off and on the whole night. I didn't have any more heavy bleeding for the rest of the night and come morning it was back to a normal flow. We woke up and had breakfast and then starting packing everything up to bring our trailer home. Everything went fine and we got home safe and unpacked. I went about everything like normal until Monday night and I had another gush of blood which made a huge mess that I had to clean up again even though I had my super flow tampon in. I decided that I better wear a pad as well as a tampon just in case it happened again and sure enough for the next four days I was bleeding like crazy and soaking through my tampons onto the pads. I decided on Wednesday to call and make an appointment with my doctor for Friday. I wanted to give it a few more days because my normal periods only last 5-6 days and I figured by Friday I would be 8 days into it.
Friday me and Jeff headed to my OB/GYN (I had him come and wait in the office for support). Everything inside of me after this heavy bleeding that started on Monday was telling me this was not a period. I still did not have any cramping or discomfort but I was bleeding really bad and passing very large blood clots. She did an exam and an endometrial biopsy that hurt like hell!!!! I cannot believe they don't offer any type of numbing drugs with this. I was crying by the time she was done. She wanted to have a biopsy done to see if something else is going on. She also said she removed a lot of blood clots from my cervix so hopefully the bleeding would slow down for a few days. They also drew blood from my arm to send to the lab to see if that would show something. After this appointment they made me another appointment for later in the day for a pelvic ultrasound of my uterus, cervix and ovaries. Of course this appointment was at the clinic I try and stay away from because of the emotional anxiety it gives me. It is where I had the mammogram, ultra sound and biopsy that changed my life forever. It is also where my breast surgeons office is. I had to go to the exact radiology department for this ultrasound but I had Jeff with me so I really didn't get as nervous as I thought I would. They finished up the pelvic ultrasound which was a piece of cake compared to what I went through with the endometrial biopsy just hours before. We went about our weekend like normal and I only had minimal pain. I continued to wear a pad along with my tampons just in case and the bleeding did slow down quite a lot so like the doctor was hoping it would. I even starting thinking that it was going to stop soon but it resumed back to a moderate and heavy flow come Monday.
On Tuesday the 10th I called into the office to see if they had any results and they did have the labs back on the blood work and the results from the ultrasound. The blood work all came back great and showed that my ovaries were functioning normal, the only test that showed something was off was the TSH (thyroid stimulating hormone). We still aren't sure what this is all about they want to retest it in about 6 weeks. The ultrasound showed the normal ovarian cysts on one of my ovaries and was probably because I was ovulating. There was another cyst in my uterus but it was very small and not likely to cause this heavy bleeding. When I was talking to my doctor she referred me to an OB/GYN since she is only a nurse midwife she thought it would be best to have a consult for an uterine ablation surgery. She felt that the ablation surgery would at least control or stop my uterine bleeding all together. They were able to set that appointment up for Thursday, October 12th.
I had Jeff go with me to this appointment as well and we were hoping that the results from the endometrial biopsy would be back and they were. This doctor I met with was new and fresh out of school but we really, really liked her. She explained that the biopsy showed endometrial hyperplasia without atypia which is a side effect of Tamoxifen. It needs to be taken care of because it can turn into uterine cancer. This is also what she feels is causing my uterine bleeding and that the bleeding I am having is not a period but attributed to this. As of today (October 13th) I have been bleeding for 15 days with no signs of it stopping any time soon and all without cramps or discomfort. The only discomfort I feel is from wearing tampons for so many days in a row but I really don't have a choice. It will slow at one time during the day and then all of a sudden change and be really heavy for another part of the day. It is still very bright red with a lot of clots. Dr. R said she could get me in on Tuesday the 17th for the Novasure Ablation surgery. She wants to do it at the hospital while I am under anesthesia because she also needs to do a D & C which she will do first before the ablation. She feels the biopsy I had only shows the one area they tested and that other things could be going on as well in the other parts of the uterus and wants to rule out cancer especially since I am at a greater risk because of my breast cancer. This way she will scrape the entire uterine lining so that she can send it to pathology for testing and do the ablation following the D&C procedure while I am asleep. She is 99% sure that my bleeding with stop forever. She said it is best to do the ablation surgery while the person is under because it can be very painful and uncomfortable. I am actually very relieved that she will be doing it while I am under. I sure hope it goes well and that it only shows this hyperplasia. The normal treatment for hyperplasia is progesterone to help thin out the lining but with me being a breast cancer survivor whose cancer was almost 100% estrogen and progesterone positive I cannot have the extra hormones. I hope this works and that I won't need a hysterectomy but I am keeping that in the back of my mind just in case.
I guess it doesn't surprise me that Tamoxifen has caused this, after all I always seem to get the weird and less common side effects. This also solidifies my decision I made in November 2016 to stop taking the Tamoxifen. Sure it might help to keep the breast cancer from returning all the while hindering my quality of life and then causing my uterine lining to thicken and then developing endometrial hyperplasia. For now I am remaining positive and hoping this D&C and ablation surgery goes well on Tuesday and I can get back to normal and feeling good and be back to work the next day. By the way I still don't have any hot flashes since they stopped in June. Once in a while I feel a little warm flush but it is nothing compared to how the hot flashes made me feel.
Life sure is crazy and I really live in the moment most of the time. I am always planning out our next adventures for the next day, weekend, year etc. so that I have something really fun to look forward to all the while enjoying the moments I am in now. I feel very blessed and thankful for all that I have been given and where I am at, at this moment in my life. My thoughts and prayers are constantly given to those around me who are currently battling stage IV breast cancer, getting a new cancer diagnosis, or another type of ailment as well as all the troubles/ disasters going on around the world.
The blood was really red and the consistency of a bloody nose which is very different from my normal menstrual cycles but I wasn't alarmed yet because I thought maybe my body was just readjusting. I also had no cramping or discomfort what so ever which is also very unusual for me. I almost thought that I was pretty lucky to get my period back without cramping. We ended up going camping Friday night for the weekend because we needed to pull our trailer off of the mountain before it snows and we were pushing it with the 1st of October on that Sunday. We had a great time camping but Saturday night something very strange happened that really scared me. We all headed to bed around 10:30PM so I went to the bathroom and put a new tampon in like I usually do right before bed and it wasn't very soaked just the normal menstrual flow. A little after midnight I woke up really wet and seriously thought maybe I was sleeping so deep that I peed the bed. I went into the bathroom and as soon as I sat down on the toilet my super flow tampon fell out of me along with very large blood clots. The tampon was all of the way soaked through in about an hour and a half. I cleaned myself up and changed my clothes and tried to go back to sleep. I couldn't sleep because my initial thought was that I was hemorrhaging and we were up on the mountain far away from a hospital. I didn't wake Kaci or Jeff and only slept off and on the whole night. I didn't have any more heavy bleeding for the rest of the night and come morning it was back to a normal flow. We woke up and had breakfast and then starting packing everything up to bring our trailer home. Everything went fine and we got home safe and unpacked. I went about everything like normal until Monday night and I had another gush of blood which made a huge mess that I had to clean up again even though I had my super flow tampon in. I decided that I better wear a pad as well as a tampon just in case it happened again and sure enough for the next four days I was bleeding like crazy and soaking through my tampons onto the pads. I decided on Wednesday to call and make an appointment with my doctor for Friday. I wanted to give it a few more days because my normal periods only last 5-6 days and I figured by Friday I would be 8 days into it.
Friday me and Jeff headed to my OB/GYN (I had him come and wait in the office for support). Everything inside of me after this heavy bleeding that started on Monday was telling me this was not a period. I still did not have any cramping or discomfort but I was bleeding really bad and passing very large blood clots. She did an exam and an endometrial biopsy that hurt like hell!!!! I cannot believe they don't offer any type of numbing drugs with this. I was crying by the time she was done. She wanted to have a biopsy done to see if something else is going on. She also said she removed a lot of blood clots from my cervix so hopefully the bleeding would slow down for a few days. They also drew blood from my arm to send to the lab to see if that would show something. After this appointment they made me another appointment for later in the day for a pelvic ultrasound of my uterus, cervix and ovaries. Of course this appointment was at the clinic I try and stay away from because of the emotional anxiety it gives me. It is where I had the mammogram, ultra sound and biopsy that changed my life forever. It is also where my breast surgeons office is. I had to go to the exact radiology department for this ultrasound but I had Jeff with me so I really didn't get as nervous as I thought I would. They finished up the pelvic ultrasound which was a piece of cake compared to what I went through with the endometrial biopsy just hours before. We went about our weekend like normal and I only had minimal pain. I continued to wear a pad along with my tampons just in case and the bleeding did slow down quite a lot so like the doctor was hoping it would. I even starting thinking that it was going to stop soon but it resumed back to a moderate and heavy flow come Monday.
On Tuesday the 10th I called into the office to see if they had any results and they did have the labs back on the blood work and the results from the ultrasound. The blood work all came back great and showed that my ovaries were functioning normal, the only test that showed something was off was the TSH (thyroid stimulating hormone). We still aren't sure what this is all about they want to retest it in about 6 weeks. The ultrasound showed the normal ovarian cysts on one of my ovaries and was probably because I was ovulating. There was another cyst in my uterus but it was very small and not likely to cause this heavy bleeding. When I was talking to my doctor she referred me to an OB/GYN since she is only a nurse midwife she thought it would be best to have a consult for an uterine ablation surgery. She felt that the ablation surgery would at least control or stop my uterine bleeding all together. They were able to set that appointment up for Thursday, October 12th.
I had Jeff go with me to this appointment as well and we were hoping that the results from the endometrial biopsy would be back and they were. This doctor I met with was new and fresh out of school but we really, really liked her. She explained that the biopsy showed endometrial hyperplasia without atypia which is a side effect of Tamoxifen. It needs to be taken care of because it can turn into uterine cancer. This is also what she feels is causing my uterine bleeding and that the bleeding I am having is not a period but attributed to this. As of today (October 13th) I have been bleeding for 15 days with no signs of it stopping any time soon and all without cramps or discomfort. The only discomfort I feel is from wearing tampons for so many days in a row but I really don't have a choice. It will slow at one time during the day and then all of a sudden change and be really heavy for another part of the day. It is still very bright red with a lot of clots. Dr. R said she could get me in on Tuesday the 17th for the Novasure Ablation surgery. She wants to do it at the hospital while I am under anesthesia because she also needs to do a D & C which she will do first before the ablation. She feels the biopsy I had only shows the one area they tested and that other things could be going on as well in the other parts of the uterus and wants to rule out cancer especially since I am at a greater risk because of my breast cancer. This way she will scrape the entire uterine lining so that she can send it to pathology for testing and do the ablation following the D&C procedure while I am asleep. She is 99% sure that my bleeding with stop forever. She said it is best to do the ablation surgery while the person is under because it can be very painful and uncomfortable. I am actually very relieved that she will be doing it while I am under. I sure hope it goes well and that it only shows this hyperplasia. The normal treatment for hyperplasia is progesterone to help thin out the lining but with me being a breast cancer survivor whose cancer was almost 100% estrogen and progesterone positive I cannot have the extra hormones. I hope this works and that I won't need a hysterectomy but I am keeping that in the back of my mind just in case.
I guess it doesn't surprise me that Tamoxifen has caused this, after all I always seem to get the weird and less common side effects. This also solidifies my decision I made in November 2016 to stop taking the Tamoxifen. Sure it might help to keep the breast cancer from returning all the while hindering my quality of life and then causing my uterine lining to thicken and then developing endometrial hyperplasia. For now I am remaining positive and hoping this D&C and ablation surgery goes well on Tuesday and I can get back to normal and feeling good and be back to work the next day. By the way I still don't have any hot flashes since they stopped in June. Once in a while I feel a little warm flush but it is nothing compared to how the hot flashes made me feel.
Life sure is crazy and I really live in the moment most of the time. I am always planning out our next adventures for the next day, weekend, year etc. so that I have something really fun to look forward to all the while enjoying the moments I am in now. I feel very blessed and thankful for all that I have been given and where I am at, at this moment in my life. My thoughts and prayers are constantly given to those around me who are currently battling stage IV breast cancer, getting a new cancer diagnosis, or another type of ailment as well as all the troubles/ disasters going on around the world.
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