I’m Still Here

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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.

 

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PT Round Three – Spinning My Wheels

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I know it had been a bit, but  I really didn’t want to write this post. I don’t want to be negative, and I don’t want to write posts about my lack of success. Anyone going through this does not need to read yet another “woe is me” post about how much I still hurt and how little I’ve been able to accomplish. But for the sake of truth, I will do my best to make this optimistic.

Yesterday I went in for my fourth appointment of my third round of PT, and let’s just say it sucked. I have been going every week, and making baby steps to identifying why the hell I still can’t manage to 1. use the dilators at all, and 2. have sex with my husband. I was hooked up to the biofeedback machine with external sensors the past couple weeks. The first time, it was to get me to know when I was relaxing (which apparently I do pretty well until a doctor touches me), and the second time we tried the xs+ dilator (the one that hurt me so bad I am officially afraid of them). I did surprisingly well both times, so for this appointment, she decided we should try the internal sensor.

She had previously told me it was big, but that was a lie. It was tiny, about halfway between the xs and xs+ dilators (fat finger size). It went in fairly okay, and my readings were pretty calm after I got used to it. She moved it back a bit and I was still fine. She moved it to the right without any issue, then the left with just a twinge of sore muscles (probably hip related). But then she moved it out more and pushed down, and my little waves on the feedback screen went crazy. 

At this point, I am getting used to this reaction. The connective tissue and muscles that cross at the bottom of my vaginal opening hurt. And because of surgery, what used to feel like an achy, sore muscle, now feels like stretching scabbed over skin. Owie. To make it worse, when I feel that pain, my pelvic wall reflexively constricts, which as you probably guessed, makes it feel about 10 times as bad. So it hurts worse and the muscles contract more which makes it hurt worse. I try to breath and make the muscles stop, but at this point it is out of my control, and just a reaction to pain. 

My therapist said that it is time for me to go back to the doctor. She said there is no reason to keep coming to see her if we aren’t seeing any progress. So she typed up everything she found and my appointment with the MD was moved up to next week, directly following my next therapy appointment. 

At this point, I don’t know what I think. I try to ignore that it had been over a year and a half since I began my journey to end my pain, but it gets harder and harder. I definitely fixed one source of my pain, and if all statistics are correct, I should be able to fix the rest, too. The doctor may send me to get an MRI, prescribe a vaginal suppository, or the most likely option, put me on the best anti-anxiety, nerve inhibitor my insurance is willing to let me buy. 

At this point, I think I am ready to give all of it a try. I’m in a good place at work, things are going great here in my new city, alone with my sweet, sweet husband. But I would really, really like to be having sex. And a lot of it. Yeah, that sounds good.

I’ll let you know how it goes on Friday. Wish me luck!

Updates soon.

PT Round Three – Don’t Practice Pain

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Long time no talk, I know, I know.

I got caught up in being a prodigy at work, the time just flew by. I got a phone call on Wednesday, reminding me about the appointment I didn’t know about the next day. That was surprising. Turns out the print out I had highlights the top appointment, and when it prints out it’s black. At least it gave me very little time to be anxious about it!

Either way, I have the first appointment of the day every appointment. 7:00 AM. Ouch. But I made it, and I think it will work out. My therapist and I were the only ones in the office, which was really nice considering a lot of the patients at this office are male. My therapist is very kind, and sweetly spoken without sounding condescending. She really got me. Whereas before, my physical therapist gave me homework and let me try it and if it didn’t work (which it never seemed to) she would give me something else to try the next week. This time, she listened to what I had done before, told me some things I should absolutely not do (kegels) and based off of what I was comfortable with, outlined a plan for me. 

She kept saying, “don’t practice pain”.

It makes so much sense. She said, if every time I tried to move forward, I was rewarded with pain, the only thing I am really accomplishing is proving to myself that it should be painful. If we use what works, what I am most comfortable with, at a pace that I can mentally accept, my progress will be better long-term.  

To be perfectly honest, I am afraid of the dilators. It is very unnatural for me. The last time I used the smallest one, it was a worse pain than before my surgery. I’m convinced it is a completely mental thing,not physical, and my new therapist says it doesn’t matter — both are keeping me from my goal. 

My homework this time is to gently stretch the fibrous tissue at the opening near the perineum. She thinks that is probably the sharp pain I am getting with the dilators. Also, what made me the most happy, was when she said we were not going to use the dilators, at least for a while. I should just work with the husband when I am aroused and comfortable.

She was very concerned with my hips. She said next time I come in we will most likely start with them. She gave me a corrective method to do at work. I am supposed to sit comfortably, but loosely, legs open under my desk. Every time I glance at my phone, I am supposed to do a reverse kegel, lightly and slowly and hold as close to it as I can. She said having a reminder to do it while at work will help me make it a habit instead of clenching. I did everything the best I could all day at work following my appointment. My muscles along the upper creases of my thighs were very sore when I got home. I take that as a good sign. 

My next appointment is in a little over a week. I’ll let you know how it goes. Updates soon.

 

Self-Righteous Vagina Rant

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I’m doing it. I’m pissed off, and mad, and angry. I can’t call my friends and rant to them, because they don’t know anything about my broken vagina. I can’t bitch about it with my mother-in-law because she thought I had surgery for a normal thing, like a cyst (because that would have been so much better?). No one knows I can’t have sex except for me and the person I can’t have sex with, and he feels the same way. I’m know I’m being petty and self-centered, but I’m pissed, and I want to rant to more people, so dammit, I’m going to!

My husband has a million sisters. 5 to be precise, Some older, some younger. For some reason, they all have no idea what a healthy relationship is, or how to cultivate one, or how to not use their relationships as weapons against their own well-being. Whereas my relationship has been going very strong for almost a decade. And yet, here they are getting pregnant with whoever at the worst possible times in their lives. I have a two month-old niece and now another sister is sending out pictures of her positive pregnancy test.

I could just spew.

It is the best and worst thing for them. They all at some point admit that it was a mistake and they should have been more careful. Or they did it on purpose because they were afraid to be alone, but realized it too late. Then they struggle with the fact that they are high school drop outs with no skills and no stability, raising a child alone after their “relationships” inevitably end horribly.

I am SO sorry this baby is such a freaking burden for. Such an inconvenience in your life that was going nowhere fast. I feel so bad for YOU.

I wish I even had the opportunity. The freaking ability.

But I don’t.

I love my husband more than anything. We want children. We’re financially and emotionally stable enough to support a family.

But no. My vagina doesn’t work, so we can’t even entertain the idea of an unplanned pregnancy.

So you, sister, go smile and cheer about your unwanted pregnancy with the guy that has lived in your house without a job for the 5 months you’ve known him. Go pretend to be happy about the fact you just quit your job and can’t pay any of your bills, even the rent on your shack you call a house. Go celebrate with your baby daddy who already has three kids he doesn’t see and doesn’t support. I’m sure he won’t leave you like he did the other mothers, or like the baby daddy’s of three of your other stupid sisters who did the EXACT same thing as you that you have been complaining about for the last two years.

Oh, no. This will be great for you.

Meanwhile, I’ll just be over here. Seeing more doctors.

Enjoy it. Really.

Rant over.

Optimistically Defeated

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Hey there, friends. Miss me?

If you have been keeping up with me, then you know that Wednesday was my first appointment with my new “physical therapist”. Or so I thought. If I have learned anything from reading other women’s blogs and stories, it is that dyspareunia is not a short battle. It takes time to figure out the issue, and then even more time to find something that helps.

When I started this blog, I thought I was almost done. In my The Long Road Here post, I recapped my months of doctors and my various wrong diagnoses. They doctors came to a somewhat definitive vestibulitis diagnosis, and I was scheduled for I surgery I thought would fix everything. The surgery was quick and painless, and the recovery was long and hellish, but I can confidently say that it worked. After meeting this new doctor, I am not really sure what is going on anymore…

Let me explain.

This new doctor, or team of doctors, is in a “post operative pelvic health” division of a hospital. A full-on hospital. The waiting room puts me with people who have been through traumatic injuries — most were in motorized chairs — and I’m just sitting here like “woe is me, my tiny vagina hurts sometimes.”

As if that wasn’t bad enough, this small group of ladies include a full on MD and 4 physical therapists that work together on their female AND MALE patients. The one thing I thought I knew for sure about pelvic walls and female health was that it was a female thing. Well, it is not. The whole bladder thing — yeah, men can get that too.

Anyway, after I get into my little exam room, I know it is going to be bad. This doesn’t look anything like the nice, comfortable, tiny vagina gym that I was used to at my former PT clinic. No, no, no. This was full on sterile, you’re gonna get voluntarily raped by a few more instruments before this is over, room. The doctor comes in and is all awkward, can’t hold eye contact, and has a new helper that is older than her and wants to learn more about tiny broken vaginas, because, you know, they’re just so much fun. She goes through all my history with me, then seems shocked at the care I was given. Shocked. She couldn’t believe I hadn’t had any formal testing, like an MRI, and to top it all off, implied that vestibulitis isn’t a thing, and that I had a fancy word for an overgrowth of nerve endings that develop into a painful nodule. I don’t really see the difference. But either way I had that little bitch burned off, and I could not be happier about that.

After going through my history it was time for her to jump into the physical exam, which when making this appointment, I didn’t expect. Does that seem odd? I know PT needs to know your problem to treat it, but I thought the whole “I went through surgery” thing made that kind of clear. Either way, the exam was thorough. She checked my spine, my balance, and my hips. Boy, did she check my hips. I knew there was something wrong with them since she kept talking to her shadow doctor instead of me. Then she poked my legs and butt with various things, gave me the revered q-tip test, and then the fun really started.

To give her credit, when I started crying she got a lot friendlier, and she never once suggested stirrups. She had to insert a finger to feel my muscles, but said if she couldn’t, they would just stop. I felt very confident I could do the finger. Shaking with fear or not, I will do almost anything to get better. I took the over-lubed doctor finger like  pro. She pressed against the muscles bottom of my pelvic wall, or the ones toward my bottom. They were dull and pain free. She pushed to my right and they felt similar, but more achy when she made me push my knee inward. When she went to my left, I actually yelped. I didn’t want to move my knee in, but she made me and it sucked. It felt like the stabbing, shooting pains I had during my first, incredibly failed attempt at intercourse. The only thing missing was the excruciatingly sharp steak-knife sensation of my vestibulitis, so there’s that.

After all that fun, I got redressed and gave myself a good 5 minute pity party. When the doctor and her friend came back in she dropped some bombs. Basically, most everything I was doing in PT before either wasn’t helping, or was making things much worse. She said when I squeezed into a kegel, I don’t release. Though I can push the muscles down and make them relax a little, it takes me a considerable amount of time and consideration. She said doing my kegels or the squeeze and release exercises were harming my progress and I should stop them immediately. Bomb number one.

She then said that, although I may (or may not) have had the vesitbulitis-like issues, my muscle problems started long before then. She said her most common clients were dancers — mainly ballerinas. The posture we are supposed to maintain, mixed with the hyper-flexibility training of our hips all makes for an unhealthy pelvic wall. She told me that not being able to use tampons when I was younger was good evidence of this. Bomb number two.

Next she said that the second most common patient she had were people with anxiety. The whole vicious circle comes into play — women have painful sexual experiences and begin to associate pain with sex, which makes them anxious before having sex, making them tense up, which causes sex to be painful, which confirms the fears and can therefore cause pain. For me it is hard to say whether my pain caused my anxiety, or my anxiety cause my pain, but either way m anxiety will to nothing to help. I was diagnosed with GAD at 15, around the time that my IBS became apparent, another great vicious cycle in my life, but I have never done well with medications. The side effects for me always outweigh the benefits, and I would always prefer to find a permanent solution rather than a band-aid. She told me most of her patients see considerably slower progress without anxiety help or medication, and that I should seriously consider it if I wanted to make progress in a timely manner. Bomb number three.

Then we made it to my treatment plan. 6 to 8 months. The bomb to end all bombs.

I started this “journey” of mine officially 16 months ago. I called it a journey because I knew it would take some time for me to find a fix. 16 months feels like 5 years. My first goal was to be able to have sex on my wedding night. We had 10 months to figure it out, and it was embarrassing for me to have to tell everyone we were going to delay the wedding and have them think we were having relationship problems. As if tiny vagina problems were so much better? Then I found out 2 weeks before the wedding that I would not, in fact be having sex on my wedding night. Surgery came and went a few months after that and, another 6 month estimation. That would have put me at 3 months before my wedding. Enough time to get used to it before a great redo-honeymoon, or so I thought. Then I had to go and be an independent woman and move states for a great job and great new life with my perfect new husband. And I find myself sitting in another doctors office getting another 6 month estimation.

So what have I learned? Goals are meaningless? That the only thing that matters is what you do today? That tomorrow always has the opportunity to let you down?

I know that I will get better, because I won’t stop trying. I am calling myself “Optimistically Defeated”, because I am giving up without giving up. I know I will get better, but I know it won’t be anytime soon. I know one day I will be able to start a family, but not necessarily when I want to. I know that I will have to keep smiling while my friends talk about their sexual exploits, and laugh off pregnancy comments since they are universally considered acceptable to say to a married woman. I know that I will have to continue going home and crying on my husband’s shoulder when someone unknowingly rips my heart out when they unknowingly say “I’m next” at the office baby shower.

I can do it. I can deal. I’ve been doing it for a while now. Just a bit longer.

Right?

I have 6 weeks until my weekly appointments start. I go every Monday morning at 7 AM for 8 weeks, then meet with the MD to reassess. Until then I am just treading water.

But I think that is what I have been doing this whole time. All eight years.

I’ll be okay.

Long Roads Getting Longer

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Hey there. I just realized it has been a while since my last update. Then I realized why.

It has officially been a month since my move, and I have just now been able to set up an appointment with a physical therapist in my new state. Too bad it is an entire month from today. Two months without PT sucks, mainly because it helps to move things along at a much quicker rate than what I can do at home. 

Speaking of what has been happening at home… 

Crickets?

No, not quite that bad! The good news is my husband and I always have a great, orgasm-filled time regardless of what we’re able to do. But I am technically still on the smallest dilator… So by that measure of progress, I have none. 

The most significant, and mentally rewarding thing is that I can officially confirm that the sharp, shooting, and burning pains I have been having are definitely muscular, not skin. Obviously this is still a huge hurdle, but for someone who had surgery for excruciating skin pain, it is a small miracle!

TMI time: let’s talk about fingering. For anyone out there with vestibulitis, you probably know the pains associates with the insertion of a finger. For me, the pre-surgery pain was located mainly at my 12 o’clock while on my back. This seems to be opposite from many cases where the pain is the worst at 6 o’clock. I actually had a skin deformation that made a small nub in that area. It was noticeable enough to be visible, and my husband would use it as reference and try to avoid it. You can probably guess how easy it was to avoid, being right at the entrance. Needless to say, fingering was not too enjoyable.

Well — I can say that is no longer the case! I have partaken in a few enjoyable rounds in the past week. The husband can actually move back and forth with only mild discomfort in the muscles. Muscular pain is much more bearable than what I had before surgery, I think because it is easier to understand. When the skin hurt, it caused a “hand on a hot stove” reaction, so there was no way to bear through it. The discomfort I had now didn’t’ stop me at all.

I still am having a major issue with the muscles that create the sides of the opening. The husband felt the rigidity stopping him from placing two fingers width wise, while two could fit vertically. This issue also makes dilator use almost unbearable. I cannot fit the next size up without literally pushing it past the muscles, which while not aroused or properly lubricated, causes the sharp, shooting pains that feel closer to my pre-surgery skin pain than muscles. All my breathing exercises seem to make no difference to those muscles. If I can get the dilator past them the internal muscles feel fine. For the most part, I can hardly feel the dilator at all except for by those muscles. 

And so we are back to the fact that I won’t be able to see a professional about this for another month. And then I get sad. I really need help, since nothing I know how to do seems to be helping. But at least I have some kind of progress and a much better understanding of my pain and what is causing it.

So, Internet Friends! Now is your turn. Any advice? What should I look forward to at my next PT appointment? What else do you want to hear from me? 

And as always, updates soon.