Okay men… obviously this post is not for you. I am going to be pretty honest here. So if it makes you uncomfortable – remember, you were very clearly warned.
Ladies, we have so much fun with our reproductive cycle don’t we? From the time we start puberty, to when we actually start our menstrual cycle… and then for the rest of our lives. If you’re lucky you can manage everything with a few pain killers and some birth control. There are supplements you can take like Dong Quai etc that help as well. Any major stress can alter your cycle and cause issues. When Daddy died I didn’t have my period for over 4 months. Then I had one every 2 weeks for the next 2 months. My doctor said it was normal with what I was going through. Awesome!
That was nothing compared to what being on high doses of prednisone did to me. I started at 10 mg of prednisone for a month before I got my diagnosis. Then things got really serious. I was on 60 mg of prednisone for 2 months and slowly weaned down over the next several months to 20 mg. By the end of the first month of 60 mg I was having challenges with my cycle. I had started spotting daily. Not heavy amounts as if I was having my period already but very noticeable. All day. Every day. The next thing that happened is that my cycle became erratic. I had been on birth control and continued to be – which is supposed to help regulate your cycle – but the prednisone had a stronger effect. Even with all this spotting – again, every single day – my periods were still a normal flow. Sort of. They were not lighter because I was spotting all the time but the cycle was no longer regulated or normal for me. Now, when I say “normal for me” I mean I usually have a predictable set of occurrences to each day of my 5 day cycle. For me, I usually would: spot the first day, moderate flow the second day, heavy flow that would keep me up every two hours all night the third day, moderate flow the fourth day, lighter flow the fifth day and possibly spotting on a 6th day but not always. That’s just how it has always been for me. With prednisone though, this is not the case. I can have 3-6 heavy flow days. I can have 10 days of moderate flow. Once, when I had been at 25 mg of prednisone when we were first weaning off the 60 mg I had my ENTIRE cycle in about 34 hours. *WARNING here is where I get a little more graphic* I mean I had to change a super tampon with an absorbency rate of 9-12 grams every 30-45 minutes for 34 hours. Yes, you read that correctly. I got ZERO sleep. I could barely move. Pretty much I sat on the couch or lay in bed in pain and discomfort not to mention being in a crazy emotional state. I wanted to cry but I was too tired. I was scared. Really scared. This much blood is just NOT normal. Especially since I had been bleeding every single day for over 4 months!
The blood in my cycle was also different. More often I had huge clots that were a darker color than I had ever had before. By huge clots I mean sometimes they were the size of my palm or even slightly larger. This happened at every period. Sometimes the first day of the cycle was the very heavy day. Like – BAM! You are on your cycle. The pain was also more intense than cramps I had ever had before. Like nearly crippling. Even though I am on birth control etc it would literally make it hard for me to breathe. I would be fine one second and the next I would be doubled over in pain trying to breathe through this assault on my body.
My solution: Farmicopia. The amazing Lily Mazzarella has her MS, Herbal Medicine and is a Board Certified Nutrition Specialist. She is FANTASTIC and they do phone consultations as well as other options… seriously, she has been a life saver just as much as my fantastic rheumatologist has been. One of the things I love about my rheumatologist is that he is supportive of these other things for full body wellness!!! Lily and I met before I started the first round of Rituximab and she helped me make sure my body was getting the support it needed to survive this disease as well as the medications. Find an awesome nutritionist if you don’t want to contact Farmicopia. Not a Whole Foods or Sprouts person… someone who has a high level of education and not just a quick 8-10 month program. Those people are great, I am not knocking them in anyway – they can help several people – but if you are going through this kind of process you need someone who has more knowledge medically. Who will really know what is going on with you and what effects these treatments will have on you. Think of it this way… they are a GP and you need a specialist. Lily made me a custom tincture with Dong Quai and a few other things. In two weeks… I STOPPED SPOTTING!!! Seriously, my mood swings calmed down. My inability to keep from tearing up at the drop of a hat went away. It has been amazing. I take it every day just like my medication and it balances me out. Do not be afraid to look, with the help of an expert, for other things to support your system.
All of this was over a year ago. Since then there have been a few bumps in the road. I still occasionally spot a little but it is very infrequent and very light. Sometimes not even enough that I would need a pad or a tampon. It’s just noticeable on the toilet paper after I pee. I have had dark brown discharge as well – very old dead blood. It freaked me out because with Wegener’s and most vasculitis diseases there is worry about kidney failure. I highly encourage you to contact your doctor anytime something new happens and anytime you have a concern. However, this is something I am not worrying about. When it happens it is light and dark brown vaginal discharge is most often associated with old endometrial tissues. Being concerned about this is just one of the fun things about having a chronic illness. You have to always pay attention to new symptoms, just in case.
A couple things – it is important to me to not risk getting pregnant with the medications I am on so I choose to use birth control. I am not telling or even suggesting to anyone that they make this same choice. Every woman needs to do what is right for her; emotionally, spiritually, morally and physically. Also, I purposely did not list what is in my tincture because it is customized for me. I am not recommending my specific combination for anyone else. You need to speak with an expert (again LILY IS THE BEST EVER and the rest of the staff is pretty fantastic too) for what is right for you.