I’m Still Here

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.

 

Buzzfeed Discusses Vulvodynia

Buzzfeed Discusses Vulvodynia

 

Ran across this while social media-ing today. Did you see it? What did you think about it?

 

If you are going through a similar situation, you probably felt alone — until you joined wordpress. I think the almost 20 percent of women out there with this should be talking about it,  and loud!

Post-Op Week 2

Well I finally made it through the first 2 weeks of recovery! And what a roller coaster it was.

As my last two posts showed, I had some serious highs and serious lows. I honestly think the second week was worse than the first. During the first week you hurt and are tired, so it is easier to accept the need to rest and stay in bed. In the second week you see improvement and expect to be able to do much more than before. Then you pay for it. 

Learning not to get ahead of yourself is a journey.  It’s psychologically taxing to feel so great, then so bad, and be left wondering if you will ever be normal again, but I did it. I learned that pushing yourself to your (admittedly dismal) limit is only extending the time it will take you to recover before you can do it again. Instead of pushing myself, I do what I have been able to do before, maybe a little bit more, then go back to rest. This way my rest is worth something tomorrow, not just recooperating from the damage I inflicted from being over zealous. 

As of today, I am capable of slowly walking around significant portions of my apartment, and I am more confident that I will be able to attend my post-op appointment on the 8th. Everything else is about the same, but improved. My pain is gone unless provoked by certain movement and the occasional bathroom trip. I have started feeling an uncomfortable and restrictive dryness at the surgery site, similar to a scab, which makes sense. Taking a sitz bath three times a day before applying the cream solves that. 

Today is my first independent day. My husband has been coming home on his lunch breaks to fix me lunch and give me medicine if needed. Mainly just checking in on me. Today I told him to stay at work. He placed everything I could need in reaching distance except lunch. I am sure I will be able to make the trip to the microwave and back, but I will let you know. If everything goes well at lunch I plan on attempting to sit. I think I should practice before I’m stuck in the waiting room at my appointment. That gives me a day to recooperate if it’s a bad experience, and then I can plan accordingly for Wednesday. 

I expect week 3 to be a week of experimenting with my new independence. I will update you about what they say at my appointment! Feel free to comment with any questions you would like me to ask.

Post-Op Week 1

Hi friends!I have finished the first week of my recovery! One down, five to go? Maybe less! 

This week has been a bit of a roller coaster. I feel completely different from the first day. Right after surgery, I felt artificially good and expected to only get better. But I found out quickly that things get considerably worse before they get better. I wasn’t prepared to be so stagnate or needy, but I realized most of my emotions were a result of the pain killers. Yesterday was better, as I split my time between naps in the bed with a bit of netflix, and lounging on the couch with football and family. Diversity is definitely the spice of bed rest.

Today, I can walk! I’ve been to the bathroom a couple times by myself and even went across the room a couple times to fetch things. This is the first day that I have seen a noticeable improvement. I was able to go to the bathroom without pain (more of a bruised feeling) and my range of motion is much better. I was able to sit up more, but it still feels weird to sit normally. I would describe my pain as a numb, pressure feeling. I can’t really tell which one it is. I have mild stinging sensations if I am in any position where I am not laying down. I have increased my walk from a “grandma shuffle” to a “shallow squatty waddle” — I keep my knees slightly bent to avoid hip sways, and I rock back and forth a little still to avoid moving the area too much. That probably sounded weird, but it looks much closer to my normal gait than the grandma shuffle did. 

Not having stitches is obviously speeding up my recovery, as my doctor suggested it would. Some women struggle with the stitches well into the second and third weeks before they have progress like mine in the bathroom and with sitting. Only time will tell if my type of surgery was as effective as a full vestibulectomy though. I really, really, really hope it was. 

I will update as things progress, and do a weekly post as well. I go for my follow-up appointment on the 8th (1 week, 2 days), so I should find out something then. I plan to go in with a million questions, so leave a comment with anything you are curious about! If I can’t answer it, I will ask next week.

Updates soon!