Hi, everyone. It’s been a while, so I’d like to give you an update.
My goal in this blog was the spread positivity and hope, but my story isn’t as successful as others. Now, I’d like to share some truth in the hopes that it will help someone else.
Last time I updated, I was kicked out of physical therapy. What I didn’t come back to mention was that I also got slapped with a $3,000 bill for that unsuccessful therapy. It has now been four years since my surgery, which by the way was a complete success. I still have zero pain at my surgery site. Unless I tell a doctor about it, they cannot tell I ever had the surgery at all. That, in my opinion, makes it all worth it.
Now, on the other hand, my pain was never exclusive to my vestibulitis. The vaginismus is still a constant struggle. Between an old dance injury and the overactive muscles that developed from my fear of the vestibulitis pain, relaxing in certain situations is still nearly impossible for me. I cannot use dilators of any size because, in my mind, nothing should be inserted into my vagina unless I am having sex. The same applies to tampons and my comfort in doctor’s offices. I am doing much better with my husband, and in an enjoyable, heated moment, I do okay penetration past the initial insertion. However, this is where the next pain comes in.
We have had goals for a baby since the surgery. I stopped taking birth control when the doctors implied that the hormones may have contributed to the vestibulitis’s development. Since then, we have had plenty of accidents and careless moments. But nothing ever happened.
At the start of this year, we decided that we would start to make trying a priority. About a month ago, I started my period over a week early. Leading up to it, I had four days of odd, light cramping, and a continuous presence of pink blood. After the four days, I started my period, and it was what I would consider normal. After talking to a few moms, I had reason to believe this was a failed implantation, but there really isn’t a way to know whether it was or not. I made an appointment with an OGYN that specialized in infertility to discuss the next step.
Last week, I went in for my appointment and got news that I hadn’t expected:
I have Endometriosis.
In the hopes of saving whatever chances of pregnancy I have left, I have been placed on a low-dose birth control pill that I will take continuously. That means no sugar pills, which hopefully means no more periods and no more opportunity for the endo to grow.
This also means no baby in my immediate future, if ever.
There were blatant signs. At 13 and 14, I had unbearably painful cramps to the extent that I would miss a day of school every month. About the same time, I developed digestion issues that were attributed to IBS due to the lack of physical abnormalities. I had been on hormonal birth control from when I was 15 until three years ago. Since I’ve stopped taking it, my cramps have gotten marginally worse until they returned to their previous sleep-on-the-floor-of-your-bathroom-in-case-you-need-to-vomit-again levels. Every woman has a hard time with cramps. I never thought my case was special.
So now I find myself in an odd place. I have physical pain that hasn’t really changed, and a new emotional pain I wasn’t expecting. This new diagnosis is something I am trying to learn to accept.
I have been in denial — I’m sure the doctor is wrong. My cramps aren’t that bad, I don’t bleed very much.
I have been angry — Why did it take this long to find it? All my symptoms fit and I’ve been complaining for years!
I have been depressed — Why are things that seem so natural (sex and pregnancy) always so difficult for me? What is my purpose if the most basic parts of feminine life are impossible?
But the truth is, none of this is anyone’s fault, it’s just life.
Nearly 11% of women have endometriosis. Considering I know only one other woman with endo, I assume some of that 11% don’t know they have it yet. It is usually a long process for women to get a diagnosis for any of the conditions I’ve been working through because no diagnosis (excluding the Q-tip test) is straight-forward. The only way it will get better is if we continue to speak up and demand that the system improves for ourselves and others.
The uncertainty of my future is the most difficult to deal with due to my anxiety, but I have decided to take it day by day. I will continue to pay attention to my body and what it is telling me. I will continue to be my own advocate and get a second and third opinion if I don’t feel satisfied with an answer. I hope to inspire other women to do the same.
So, that’s where I am. Sorry to be quiet, but I hate being the failure story. Feel free to leave a comment, or contact me with any questions or advice.