Dear ttcma,
I am so so sorry to hear about your recent struggles…. Because I’ve been there!!! Truly, I’m still there! I have had menstrual problems since the onset of my first period when I was 14. I tried to control the irregularity and pain first with hormones and birth control yet it only continued to get worse with time. Finally, when I was 19 I had my first laparoscopic procedure and found out that I had endometriosis like you. My endometriosis had gone unnoticed mostly because I had it on five of my vital organs and none at all on my female organs (at the time). My affected areas were also too sensitive to try and remove the scar tissue. Like you I have it inside and outside of my bladder which can be sooo painful and easily irritated. My endometriosis was treated too many ways to type (Lupron injections, narcotics, hormones, birth control ect.) by too many doctors without success. So, when I was still having pain and being told it was in my head I was beyond frustrated!.... Only recently I found an amazing specialist who tested my pelvic floor muscles immediately (something I had never considered!). I mention this to you because there are a variety of different conditions involving a woman’s pelvic floor which can cause many of the symptoms you have listed! Such as cramping, constipation, discharge and urinary discomfort. I have since had a procedure about two months ago in which my doctor injected Botox type A into my pelvic muscles to freeze them and calm the constant contractions/spasms. It worked! I then had another laparoscopy a week later and was told my endometriosis had regressed greatly (which was amazing news!) but I had a cyst located in a nerve bundle on my right ovary. The combination of all these things can be overwhelming and VERY painful truly making everyday activities nearly impossible as you had said. On an encouraging note we do have resources, modern medicine and mostly each other for support! For myself, it has been a long journey with varying procedures, diagnoses, and treatments but progress is being made! I will be 22 next month and feel as if my life has been on hold for years (spending months at a time in bed). Just recently I am truly seeing the light at the end of the tunnel and watching my body heal, and along with it my spirit. I will be praying for you and suggest seeing several specialists if you have not already. There are doctors that deal only with pelvic pain and are very knowledgeable when you find that the text book answers don’t seem to fit your specific case! That was certainly my case. Best wishes, Ashley
P.S.- I am no medical expert but I do feel that your current heavier bleeding is your menstrual cycle. Just to be safe I would pay close attention to how often and how long you are bleeding for.
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Dear ttcma,
May 11, 2009 - 2:14pmI am so so sorry to hear about your recent struggles…. Because I’ve been there!!! Truly, I’m still there! I have had menstrual problems since the onset of my first period when I was 14. I tried to control the irregularity and pain first with hormones and birth control yet it only continued to get worse with time. Finally, when I was 19 I had my first laparoscopic procedure and found out that I had endometriosis like you. My endometriosis had gone unnoticed mostly because I had it on five of my vital organs and none at all on my female organs (at the time). My affected areas were also too sensitive to try and remove the scar tissue. Like you I have it inside and outside of my bladder which can be sooo painful and easily irritated. My endometriosis was treated too many ways to type (Lupron injections, narcotics, hormones, birth control ect.) by too many doctors without success. So, when I was still having pain and being told it was in my head I was beyond frustrated!.... Only recently I found an amazing specialist who tested my pelvic floor muscles immediately (something I had never considered!). I mention this to you because there are a variety of different conditions involving a woman’s pelvic floor which can cause many of the symptoms you have listed! Such as cramping, constipation, discharge and urinary discomfort. I have since had a procedure about two months ago in which my doctor injected Botox type A into my pelvic muscles to freeze them and calm the constant contractions/spasms. It worked! I then had another laparoscopy a week later and was told my endometriosis had regressed greatly (which was amazing news!) but I had a cyst located in a nerve bundle on my right ovary. The combination of all these things can be overwhelming and VERY painful truly making everyday activities nearly impossible as you had said. On an encouraging note we do have resources, modern medicine and mostly each other for support! For myself, it has been a long journey with varying procedures, diagnoses, and treatments but progress is being made! I will be 22 next month and feel as if my life has been on hold for years (spending months at a time in bed). Just recently I am truly seeing the light at the end of the tunnel and watching my body heal, and along with it my spirit. I will be praying for you and suggest seeing several specialists if you have not already. There are doctors that deal only with pelvic pain and are very knowledgeable when you find that the text book answers don’t seem to fit your specific case! That was certainly my case. Best wishes, Ashley
P.S.- I am no medical expert but I do feel that your current heavier bleeding is your menstrual cycle. Just to be safe I would pay close attention to how often and how long you are bleeding for.
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