Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I am going to be talking about my experiences with Endometriosis as an installment in the “My Diagnosis” series. It has been a while since I made a post in this series, but there are several more that I plan on writing. Other things have been filling my mind and thus I have been posting about those rather then about my experiences with my various diagnoses.
Trigger Warning: This post is going to be focusing on the menstrual cycle and pelvic pain. I will be going into detail which some will consider to be graphic. I am aware that discussion of these topics can make some people uncomfortable. If you are one of those people, then this post is not for you.
I have always had trouble with my menstrual cycle. Right from the beginning I had an irregular menstrual cycle. This isn’t that abnormal. Many young individuals with a uterus who are first starting their cycle will be irregular for years before it sorts itself out. I was very young at 9 when I started my cycle. The younger you are when you start your cycle, the more likely it will be irregular. However, my cycle has never become completely regular. Even now it is still irregular and I am 41. This wasn’t something that the doctors began to get concerned about until I was around 17.
When I was 16 I started having really heavy bleeding with my menstrual cycle. For your information: heavy menstrual bleeding is defined as needing to change your tampon or pad more frequently then every 2 hours or if you are passing clots that are larger then a quarter. I personally never passed large clots. But I would have to change my pad every hour and sometimes more often in order to manage the amount of bleeding that I was having. Every time I was having my menstrual cycle, my H&H was dropping significantly. An H&H is a pair of lab work values: hemoglobin and hematocrit. Hemoglobin measures the level of hemoglobin, the oxygen carrying protein, in the blood. Hematocrit is used to determine the ratio of volume of red blood cells to the total volume of blood. These two tests together are used to determine if someone has anemia and when that anemia has become severe enough that they need blood transfusions.
When I was 17 I was put onto oral birth control because my H&H got dangerously low. It was low enough that there was some discussion of my getting a blood transfusion. The hope was that the birth control would decrease the amount of bleeding that I was having and would help make my menstrual cycle more regular. It did decrease the amount of bleeding. But the estrogen birth control caused me to have psychosis. So, I was switched to a progesterone only pill. This did not regulate my menstrual cycle, but it did reduce my bleeding to normal levels and it didn’t effect my mental health.
I was 19 when my daughter was born. After she was born, I had an increased amount of pelvic pain during my menstrual cycles. I was put on the Depo-Provera shot after my daughter was born. This was so I would get a more consistent hormone level in my body. I used this birth control for years. It never reduced my pelvic pain. Despite the pelvic pain, I wasn’t ever given pain management beyond a heating pad and ibuprofen.
When I was 20, I had a miscarriage. After that I had another increase in my pelvic pain. This is when I was first worked up for concern for structural abnormalities. I had an ultra sound and a CT scan of my abdomen. Everything looked normal. The doctor gave me the diagnosis of endometriosis at that time. It doesn’t generally show up on any imaging. The only sure way to diagnosis endometriosis is to perform an exploratory laparoscopic procedure to go into the abdominal cavity to look around and take tissue samples. I have never had this done. I was diagnosed with endometriosis because the doctor felt that I had the right symptoms and it was the most likely cause given the normal imaging and my age. Despite this diagnosis, I wasn’t given anything to manage the pain.
When I was 21, I had a third pregnancy that I chose to abort. After that I had yet another increase in my pelvic pain. I had another work up then with imaging that was all normal. The doctor kept the endometriosis diagnosis and continued not to give me pain management.
When I was 29, I had another significant increase in my pelvic pain. This time, there was no apparent trigger to the increase in my pain. I had another work up and all the imaging came back normal. I was seeing a different doctor then. They also had a bone density test done since I was on the Depo-Provera shot for so long. It was then that they found that I had osteopenia. Because of this, I switched from the Depo-Provera shot to using the Mirena IUD which was first placed shortly after I turned 30. I was put on calcium and vitamin D supplements to try to help my body rebuild my bones. But no new pain management.
At 35 I had another bone density test done and it reflected that I had normal bone density.
Now, at 41, I am still struggling. I have again had imaging done that is reflecting nothing abnormal. I am still using the IUD and that is doing a great job at controlling the amount of bleeding I have. My menstrual cycle continues to be irregular. I can have a period that lasts 3 days or I have had one that lasted as long as 3 weeks. I have had periods that came every other week for 6 periods and I have had times that I have gone as long as 4 months without a period. Then there are stretches of time that it seems to get onto a regular pattern. But that never lasts.
I have again had an increase in my pelvic pain and I don’t have a clear trigger for the increased pain. Despite the severe pain that comes with or without my menstrual cycle now, I have not been given anything to control my pain. I’m still doing my best with a heating pad and ibuprofen. Doesn’t matter that the ibuprofen sets of my MCAS symptoms. There are just times that the pain is so bad that I have to use something and that’s all that I have. It only takes a little bit of the edge off, but that’s better then nothing.
This adventure that I have had with pelvic pain is probably the biggest reason that I have lost my faith in the American health care system and have found myself feeling angry towards health care providers. There are times that I am ashamed to be amongst their ranks. I was told that since it was endometriosis, that I could just wait until menopause since that was likely to resolve the pain. Yup. That was one doctor’s solution to the pelvic pain. Just live with it for about another 10 years and then hope that the pain goes away. There hasn’t been a single doctor that felt this was something that I should get pain control for. Doesn’t matter that the pain gets bad enough that I’ve had to call out for work. Doesn’t matter that it get so bad that there are times I can’t walk. Doesn’t matter that I am now having the pelvic pain literally every day. This just isn’t something that is medicated.
For 21 years, I have carried around the diagnosis of endometriosis and the truth is that this isn’t even a confirmed diagnosis. I did finally find a doctor that was willing to do the laparoscopic procedure to confirm the diagnosis and I wasn’t able to get the time off from work. So, I’m left still not knowing if this is even the right diagnosis. Nor do I know when I will ever be able to make the arrangements that are needed to have this procedure done. For 21 years, I have been having pelvic pain and the doctors feel that it is fine to not be sure of the diagnosis and that it is fine not to have pain management. This is the American standard of care.
Well, that’s about it for my rambling today. Thanks for coming and spending some time with me. If you like what you read, click on that like button. It really does help! Until we talk again, you take care of yourselves!
Zebra Pig 