Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Hi All!
I'm so glad I stumbled onto this message board while researching medical options. This has been a whirlwind four months, climaxing in surgery, which I had on February 4, 2014.
I'll try to keep my story short. I went to a routine OBGYN in early October '13. Told her of pain I was having during periods and intercourse. She sent me for an ultrasound. That found "loads of cysts" on my ovaries and immediately wanted to schedule an ooperectomy to remove my ovaries. She put me on a 3-month birth control pill to try and shrink the cysts (which caused me to bleed every day from mid November through the end of January. Yeah, let me tell you how fun my holidays were.) I panicked. I have two children, and my hubby and I are content in the child department, but I'm 36 and was not yet ready to lose my ovaries. I asked for other options. She sent me to a Reproductive Endocronologist since "I wasn't willing to take her advice". Went to see him two days later, and he was willing to work with me and wait 30 days to see if the BCP would help with shrinkage. (Plus, he looks like Baby's dad from "Dirty Dancing" and that always made me trust him for some odd reason) After 30 days, I had another ultrasound. While the ovaries shrunk back down to almost normal size, the cysts remained the same size. He suggested laprascopic surgery to remove six cysts. At that time he said I might "have some endo in there". OK, fine. Surgery was scheduled for Feb 4th.
Had surgery. They ended up removing 9 cysts instead of 6, and found I had Stage 4 Endo, which is even up under my diaphragm. They had to remove quite a bit from my bowel, which was punctured a bit in the process. They stitched me up.
Had my post-op appointment three days ago. I'm healing great, and I was expecting the doc to say he'd see me in a few months and that would be it. Ummm.... no. They found that the cysts were not fluid-filled fun of the mill cysts. They were caused by the endo. Like big endo balloons. (Happy Birthday!) My surgery pics were like something out of Science Fiction. Since Endo wasn't something that was ever mentioned, I never did any real research on it so I didn't know what I was up against. He said that we needed to decide right away what course of treatment to take. I was given four options:
1. Pregnancy (HA HA HA HA HAAAAAA!)
2. Lupron
3. Depo Provera
4. BCP or Mirena (both of which he didn't think would "cut it")
or...
Hysterectomy (dude... I just HAD surgery!)
So all this time that I've been all "Rah Rah! I got to keep my ovaries!!" I was excited about keeping the one thing that is causing all of these problems. I haven't been on any meds whatsoever since 2001. So basically, this endo has grown with wild abandon all this time. Lovely.
Now I need to make a decision by tomorrow morning, and I'm freaked. I really do not want to do Lupron. I've read about how it has caused joint pain and even some autoimmune dieseases in some people, and although I don't have Rheumatoid Arthritis, I have a high Rheumatoid factor and don't want to take any meds that push that over the edge. Lupron scares the H-e-double hockey sticks out of me. Depo is the way I'm leaning. My sister has had mild endo and used Depo for 6 months a few years ago before she got pregnant. She said her only side effect was a five lb weight gain. I think I might be over-researching. I know most people don't bother to post a review on how GREAT a medicine is, but I've been horrified at some of the reviews I've read. Complete loss of libido?? My incredibly patient husband has had sex ONCE in the last six months. Don't know if the dude can take much more. :) Weight gain? Ah, I don't care about that one. Constant bleeding? Ugh. I think I may need to buy stock in the Always brand at this point. Not interested in constant bleeding.
I'd love to hear any thoughts/advice/experiences etc. I've been pouring over this board, and I just love it. So glad I accidently found it. If you've read through this whole thing, you get a gold star.
I'm so glad I stumbled onto this message board while researching medical options. This has been a whirlwind four months, climaxing in surgery, which I had on February 4, 2014.
I'll try to keep my story short. I went to a routine OBGYN in early October '13. Told her of pain I was having during periods and intercourse. She sent me for an ultrasound. That found "loads of cysts" on my ovaries and immediately wanted to schedule an ooperectomy to remove my ovaries. She put me on a 3-month birth control pill to try and shrink the cysts (which caused me to bleed every day from mid November through the end of January. Yeah, let me tell you how fun my holidays were.) I panicked. I have two children, and my hubby and I are content in the child department, but I'm 36 and was not yet ready to lose my ovaries. I asked for other options. She sent me to a Reproductive Endocronologist since "I wasn't willing to take her advice". Went to see him two days later, and he was willing to work with me and wait 30 days to see if the BCP would help with shrinkage. (Plus, he looks like Baby's dad from "Dirty Dancing" and that always made me trust him for some odd reason) After 30 days, I had another ultrasound. While the ovaries shrunk back down to almost normal size, the cysts remained the same size. He suggested laprascopic surgery to remove six cysts. At that time he said I might "have some endo in there". OK, fine. Surgery was scheduled for Feb 4th.
Had surgery. They ended up removing 9 cysts instead of 6, and found I had Stage 4 Endo, which is even up under my diaphragm. They had to remove quite a bit from my bowel, which was punctured a bit in the process. They stitched me up.
Had my post-op appointment three days ago. I'm healing great, and I was expecting the doc to say he'd see me in a few months and that would be it. Ummm.... no. They found that the cysts were not fluid-filled fun of the mill cysts. They were caused by the endo. Like big endo balloons. (Happy Birthday!) My surgery pics were like something out of Science Fiction. Since Endo wasn't something that was ever mentioned, I never did any real research on it so I didn't know what I was up against. He said that we needed to decide right away what course of treatment to take. I was given four options:
1. Pregnancy (HA HA HA HA HAAAAAA!)
2. Lupron
3. Depo Provera
4. BCP or Mirena (both of which he didn't think would "cut it")
or...
Hysterectomy (dude... I just HAD surgery!)
So all this time that I've been all "Rah Rah! I got to keep my ovaries!!" I was excited about keeping the one thing that is causing all of these problems. I haven't been on any meds whatsoever since 2001. So basically, this endo has grown with wild abandon all this time. Lovely.
Now I need to make a decision by tomorrow morning, and I'm freaked. I really do not want to do Lupron. I've read about how it has caused joint pain and even some autoimmune dieseases in some people, and although I don't have Rheumatoid Arthritis, I have a high Rheumatoid factor and don't want to take any meds that push that over the edge. Lupron scares the H-e-double hockey sticks out of me. Depo is the way I'm leaning. My sister has had mild endo and used Depo for 6 months a few years ago before she got pregnant. She said her only side effect was a five lb weight gain. I think I might be over-researching. I know most people don't bother to post a review on how GREAT a medicine is, but I've been horrified at some of the reviews I've read. Complete loss of libido?? My incredibly patient husband has had sex ONCE in the last six months. Don't know if the dude can take much more. :) Weight gain? Ah, I don't care about that one. Constant bleeding? Ugh. I think I may need to buy stock in the Always brand at this point. Not interested in constant bleeding.
I'd love to hear any thoughts/advice/experiences etc. I've been pouring over this board, and I just love it. So glad I accidently found it. If you've read through this whole thing, you get a gold star.
If you haven't had too many issues with hormonal BCPs in the past I would totally give the Depo Provera a try. I have seen several ladies say it was helpful, and generally with less severe side effects than Lupron. If it weren't for my history with hormonal BCPs I would do it in a heartbeat!
Mirena has been shown to be pretty good for endo, but it seems like it works well for about 50% of women and not all/makes them feel worse the other half the time. I would like to try it personally, but haven't been able to yet and am still worried about the hormones even though it's lower dose.
I'd save Lupron for my last option (besides hyst anyway)...It works very well for some people but the side effects are so intimidating.
Good luck with making your decision tomorrow, and you are in my families thoughts and prayers