We close out this week’s blog series with the concept of battling a life threatening illness while coping with pelvic pain; not something we often think about. We had a chance to sit down with Sara Aldrich who opened up to us about her struggle with Cystic Fibrosis and undiagnosed period pain.
My name is Sara Aldrich and I am a 23 year old student. I live in Ottawa, Ontario and was diagnosed with Cystic Fibrosis within my first year of life. CF is a chronic Genetic disease that primarily affects the lungs and digestive system. The best way to easily explain CF is that you are drowning in your own mucus. Over the past 3 years, my health has taken a turn for the worst and I have been told to “prepare for death”. As a 23 year old being told that my life is coming to an end, I’m desperate for help and answers.
In addition to my CF, in the past 2 years I have been struggling with excessive bleeding. I have my period about 3.5/4 weeks in a month, resulting in consistent pain, exhaustion, dizziness and a sense of helplessness. I have seen several doctors and a gynecologist regarding these issues and have had many tests done to find out answers. All my blood test results and ultrasounds have come back clear, and I have been told that I just need to go on birth control to monitor the blood. I have recently had an IUD inserted, and although it has not yet been 6 weeks since having it inserted, I am still bleeding excessively and it is affecting my day to day activities and routines. I feel like the IUD is just a band aid solution to my problem of bleeding, and I am in search of ACTUAL answers as to what is wrong.
“I think now that I know I get my period whenever I have an infection, I kind of expect it so I have gotten used to controlling it. ”
Knowing that CF is a lung-related disease, can you try to explain what it feels like? Is it pain? What can you tell us about what your periods feel like?
It’s very difficult for me to explain my pain. In terms of my CF, the pain I feel is almost like my lungs are too big for my body. It feels like I’m constantly trying to catch my breath. In addition, I have severe headaches almost daily and they only go away with extra strength Advil. I also am constantly throwing up due to the access of mucus in my body.
In terms of my period issues, I get SEVERE cramping, and often the cramping comes at random times. To ease the pain, I usually sleep with a heating pad on my stomach every night. As said before, I also get severe stomach pain because of the lack of poops.
Since you do have a few different illnesses that you are working with, how did the progression of diagnosis go for all of these? They must have been such completely different trajectories.
On April 6th 1999 I was diagnosed with Cystic Fibrosis. I was in the hospital for 5 weeks with what they believed to be pneumonia. As I was getting my blood taken by a student nurse, I was screaming and crying which was causing me to sweat. When my mom asked my dad to get a wet cloth to wipe me down because I felt like “a salt block”, the student nurse asked if I always felt salty. My mom said all the time, which resulted in my getting tested for Cystic Fibrosis. My test came back positive, and then they tested my brother as he had the same symptoms as me. He also came back positive. My mom and dad felt like the medical system had failed them. My brother was already 4 years old at the time of his diagnosis, meaning he was 4 years behind in treatment. Our family doctor ignored all the signs, even when my parents pointed her towards the runny and inconsistent bowel movements, salty skin and trouble keeping food down. All evident signs of CF.
In terms of my ongoing issues with my period, I have yet to have a diagnosis. I have had many people tell me that it could be endometriosis, but once again, I have no answers. Not only am I bleeding pretty much all the time, but I also go weeks at a time without having a bowel movement. This causes significant stomach pain. I have spoken to my doctors about this at least 8 times, and I have been told to take restoralax (a laxative). At this point I am taking restoralax twice daily, sometimes 3 times and it has not improved my bowel movements. I have also been told to take PegLyte to try and clear any blockage, and that also has not worked.
It feels weird asking this, but is there anything that helps with the CF?
My treatments in itself are a full time job. I do physio in the morning and physio in the evening. I use a small machine called a pep to do my physio. The pep helps to expand my lungs in order to allow the mucus out. I then do inhaled medication 3 times a day. At the moment, I am waiting for a life changing medication called Trikafta, which is waiting to be approved by insurance. This medication is the closest thing to a cure, however it is $300,000 a year and cannot be taken without coverage from insurance. I also take a medication called Azithromycin which is the medication used on Covid patients.
Have you ever reached a point where you had to think outside the modern medicine box? If so, what did you do that helped with the pain?
I have not.
Generally speaking, are you open to alternative therapies such as osteopathic, pelvic floor, myofascial massage, acupuncture?
If you would have asked me a few years ago if I was open to any of these (especially acupuncture), I would have said no. I hate needles and they scare me so much. However, I’m so desperate to eliminate this constant pain, so the answer is YES. I want and need answers.
As someone who was once skeptical myself, I think it is so important to consider all the options available. I, as well as so many others are so exhausted and tired of living life in pain. I am ready for alternative therapies to have my questions answered.
So, I’m just itching to know, what do you do when you have a CF infection and a bad period at the same time and how do you handle that?
Well most of the time I have a bad period while I have an infection because of the medication. The meds they put me on always give me a really bad period. Usually I spend most of my time at home while I have an infection, so it makes it a bit easier to manage the heavy period flow and bad cramps. I usually spend most of my time in bed with a heating pad on my stomach and pop some advils to get through the pain. Its also really nice to have an amazing support system like my mom who usually helps me by making meals for me and running a bath. I don’t know that I would be able to do it without her but she’s always making sure I’m staying in bed as much as possible. I think now that I know I get my period whenever I have an infection, I kind of expect it so I have gotten used to controlling it.
And lastly, what would you tell your younger self about pain management?
I would tell my younger self that I am not crazy for feeling this way. I am so quick to judge myself and think my pain is not valid. I have been told so many times that there is nothing wrong with me, and I can’t help but think I’m crazy for still not being ok. I am so exhausted from always wondering what is happening to my body.