Abdominal Pain (Nonvaginismus related)

Over the past few years, ironically since having my son the pain rectally has increased.  A pain condition that has reared its head sporadically since college has returned with a vengeance.  Two trips to the ER and one that made me think “awh” an answer.  Instead a lot more questions and confusions for me as an individual. I wish to go back to the years before all this when pain wasn’t a part of my everyday existence. I’m use to 1-4 pains on a daily basis. I work through that.  

My pain level has gotten to a scale of 9 for me and is intolerable.  A trip to an OBGYN stated something that had been brought up by another OBGYN in the town I went to college for 4 years of my life. Endometriosis.  The OBGYN had mentioned birth control pills as one choice, surgery, and then hinted that having a baby often cures the condition. I’m sure they mean vaginal birth. Lol with my condition and how my muscles are.. While I would love and want nothing more than that experience. I don’t want to do anything that would jeopardize the life of my next child (if I am so blessed to have another biologically speaking).  We tried the birth control and not to gross out but I bled for like 3 months (period -Day 1 level) with no real change in pain levels. So we stopped that.  

I believe birth control does work for some women. I’m happy for other women whom benefit from that. We tried several before giving up on that as an option.  Then the pain kind of went down to a 1.  I stopped the appointments and let it go. I forgot about it when it came back another year later with painful stabbing pain. Trips to the ER for tests and five weeks later down again. Things did slow down. Then I had my son.. Other than my rectal issues starting and then getting perpetually worse. The pelvic floor pain remained the same.

Then two weeks ago the same things took place.  Two trips to the ER. Pain so bad that I can’t work because the narcotics to lower the pain prevent anyone behind the wheel. Honestly due to knowing how much stuff needs to get done before the end of the school year, I am a fighter. If I could take the pain killers which bring it to a 4.I would be at work. As it is.. my husband doesn’t really want me to be home with my son. Not because he doesn’t trust me. But he feels that the medication is a concern. I agree and disagree. Its one of those things where I’m frustrated. If I am at home. I want to be doing something .. have responsibility of something. This laying around and not doing much is getting to me.

Okay.. I admit.. I’m a bit of the active person. Late nights .. early mornings. That is me.. If the sun is up.. I am up. I’ve tried napping multiple times. It isn’t me. Sitting on my butt (which can be painful) on its own experiment.  Is like a dentist appointment where they have to be drilled. Actually sign me up for that .. lol. Yep bed rest or whatever you want to call this.. The medication is well drying me nuts.

So the specialist visit basically said that the pain levels for the cyst doesn’t match the size.  Which I’m not a hundred precent surprised since I said it doesn’t match my chronic pain but matches things in the distant past.  Then the word endometriosis came back into the discussion.  So I’m to go to the gastro which was scheduled way before the whole pain started.  Then depending on everything. Surgery which sounded like a definite. 

That scares me.. Scares me for many reasons. Scared that it won’t show anything and it will be that constant question mark. Scared that it will and then what it means for other things. Then scared of problematic surgery.

Frustration

That feeling of been down this path and it hasn’t gotten me much further than I was x number of months ago is where I am with the pelvic floor issues with the rectum. At the point my body is a complete wreck- not only is there blood (which can fill a toilet) with stool and sometimes without stool, I’m just bleeding continuously and requiring a pad.  There are a bunch of things on the table- nerve block possibility but something tells me that won’t fix the bleeding but maybe the pain.  Then there is botox injections.  Then for the abdominal pain which PT and I agree is just part of the encompassing issue is the Pelvic floor dysfunction.  There are several ideas and I’m not listing them down here as of yet.

Hoping to find some relief soon. Hoping that at some point a day where a pain level of 2-4 is like nonexistent and not considered my good days. Looking forward to the day where I don’t have to smile and hide and act like nothing is wrong. I want the day where I’m smiling and saying I’m great is because I’m doing well.  

 

:: Throwing darts at a picture of my body at the wall:: no really its just I feel like that.

 

Wh

John Hopkins 2nd Appointment

I had an emotional roller coaster this past Friday at my Johns Hopkins appointment.  My belief and reflection its because I thought that the botox was a for sure go and it would be setting the appointment and thinking that we were one step closer to where we needed to be.  After the appointment there was an additional thing added to the list. I have Vulvydania, Vaginismus, and now they are looking at Pudendal Nuerolgia.  I need to call the doctor who does Nerve blocks to see if I am a good candidate for this.  At first, I was confused by this new condition being presented to me. However, when I was reading up on the symptoms, it would explain the rectal pain. It frustrates me because a huge reason I did the c-section was because I didn’t want to end up with this condition.  However, the obgyn stated that its actually good I didn’t because if I had it during the pregnancy, I would have been bedridden. Still not sure that makes me feel a whole lot better. My husband still thinks we made the best choice. I think what is hard is how much I wanted a natural delivery. To be honest if my body was “normal” I would have loved to have been able to consider a home delivery with no pain medications.  But as my body does its own things and my feelings have robbed me of the options other women get. I’m frustrated.  I need to make the phone call to Johns Hopkins to set up the appointment with the next doctor and need to reschedule my colonoscopy.

John’s Hopkin’s And Update

So saw a physician’s assistant at John’s Hopkins OBGyn department. She told me that not only do I have the Vaginismus but have Vulyodania.  I am on creams and tons of new medications to try to treat the Vaginismus and Vulvodania. She did feel mine was more muscle related. What a surprise?!! Not really with physical therapy.

Things have gotten worse physically.  Rectally I’m in so much pain that it amazes me I make it beyond the bathroom door and manage to push through.  As my counselor says the rapes that occurred at a young age has probably made me a fighter and a person to never give up.  The muscles are soo tight that even the physical therapist comments about how even more tight I am. Which I don’t get why this happening.  Forget the tampons and pretty much about sex. I did push it once and regretted it afterwards. 

Right now I feel pretty crappy and I know I shouldn’t or told not to feel this way. But the word “Bad wife” comes into mind.  I really do feel bad.  My husband tries to tell me not to worry about it but I do.  Then bad Mom because when he wants to be held and sometimes if I’ve had a bad day with the rectal area. I just can’t do it.

Alas.. I see the Obgyn Friday again and give my response to the Botox. I think she was planning on doing it soon but I’m going to see about changing that time frame a little.

Awaiting a colonoscopy and if that doesn’t ring true with anything they are sending me to a specialist that deals with the pelvic floor muscle.  

Lots going on.

Frustrations and tears

I’m tired having to walk around and act like everything is fine. I’m tired having to try to find ways to bite or position myself to hide the moments that are the most painful. Some days, the toughest days I want to stay in bed all day. I have a job and a 2 year old. I can’t lay down and just shut out.
I’m looking into Botox. I’m realizing that along with body memories from PTSD, Vaginismus, that pelvic floor issues have created problems with anal fissures. So Im hoping and praying that it is something that will work. I must admit I have my concerns with it because I still feel its new. If the pelvic floor with anal fissures wasn’t getting worse I wouldn’t have been looking.
I guess family pushing me to do something. I’ve been told I don’t take care of myself or put myself first. Yes I know I have issues. It has been a rough year. The fissures only add to my problems.

Additional mysterious health issues

This past Thursday led me to taking a non optional emergency leave day from work. I ignored the slight itchiness that I bothered to note to my husband in bed. By the time 10 am rolled around my head, face, back, stomach, and breast were itchy. My paraeducator encouraged me to head to the nurse who informed me I had hives everywhere. She informed me I was having an allergic reaction and that there was large welts on my back. We went through the standard anything new exposure list. Nothing. I was told I had to contact Dr right away and was given two Benydrayl. It helped by the time I was heading to the drs office because the redness on stomach, back, and face had become mild. I didn’t get much other than they don’t know what causes things like this. Went to pick up my sick son from my Mom’s house. By the time I was getting ready to leave the hives were back and by the time I got home I was actually motivated by discomfort to be naked. I was in discomfort and this time the Benadryl only tired me. Did nothing for the itchiness. Since my son had another fever and it was five days we had to contact the doctor who of course said “come on in”. Coincidentally same dr that saw me. So he set me up with a prescription. Friday morning I woke up in pain and swollen but no hives. By 10 am the hives were back and increased when I got home. Saturday same pattern and same pattern. It seems like smaller areas today but worse locations. Guess what area I found hives. Yep the lip of my vaginas entrance. How do I get to be so lucky? Without medication I get these visualizations of tearing my skin completely as opposed to very bothered and very annoyingly itchy.

Slight success after a setback

After months of crying myself to sleep and feeling even worse about myself. Not because of my husband but because of my own personal feelings. I finally managed to have some success. I admit it hurt some. I was just overjoyed that there was some success.

Post-Pregnancy benefits of Pelvic Floor issues=Vaginismus

When I first mentioned to my PT that I hadn’t been doing the kegel’s like I should have based on the books, I remember her comment was “Don’t bother.  Your muscles could use a loosening.” At that moment I didn’t quite catch. After the c-section, I said to her, “well the muscles didn’t get any looseing, and no kegels, no concern, right?”. It was then that I learned c-section or vaginal those issues still exist.

So another thing I’m different.  But I think I can handle this difference.  I think I can handle not worrying that laughing or a movement might cause a leak because of muscles.  Maybe this is the mix blessing.  The only uncomfortable is when someone asks, “You know what its like right? How often do you experience this problem.” I don’t know.. Lie?  And I don’t know that problem. I don’t know what to say.

That unknown response, I guess is what scares me. I fear they will see the fear or realize I’m unusual. I don’t like the idea of lying but at the same point I don’t want to address it.  But I guess I have one thing to be thankful for with this condition. I don’t have to worry about leaking as much.  So thank you pelvic floor muscles for supporting me post – pregnancy. At least you can still do your job after a baby.

Mixed Pos in the bag

K! Its been some time (one could say almost months) since we have had sucess under the sheets.  We had that sucess.  Not without burning sensation. I headed to the bathroom since I was taught that urninary tract infections can be caused from not going afterwards. I normally experience burning pain after sex even when things are not so painful. I did manage to go pee without any kind of pain. A little spot of blood. So I say it was a success to me.

A small vent

I am going to vent about something that didn’t happen to me but to a friend with Vaginismus. Today this indiviual informed me that they had decided to share with a church group.  Her husband and her attend a church and are active in the individual study groups.  The wife of one of the pastors happens to lead one of the groups that my friend is a part of.  She told me that she got the encouragment to ask for prayers and support as she enters physical therapy with her husband. 

She thought that having more prayers wouldn’t hurt.  The woman that ran this group, decided to be cruel and uncalled for.  She told my friend that there are a few things that might be why her husband and her are having problems:

a) she has sinned and it is a punishment for some action she hasn’t come forward with.

b)  This is God’s way of letting her know that she is never meant to marry. Let her husband go and be happy.

c) that she’s lying because she just wants people’s attention.

And no matter what, she didn’t care to have her study group bombarded with such a ridiculous prayer. Now I asked, did she say this in front of the rest of the girls. She said “No, it happened after everyone left.” I got asked to stay for a small conversation. 

The only thing I can think is.. Wow!! How completely against my faith and belief is what the individual’s views on Vaginismus are.  I just felt this was handled so poorly. I told her that sometimes unfortunately that sometimes the people that should lead with the Lord in their heart. Aren’t always at the their best or really meant to lead.  Some people need to learn when its better to put their foot in their mouth. That wife’s pastor might think about that. Because if it does happen to her. I wonder what she’s going to do.

Is she going to start a million day repent.. Trust me.. There was a time where I wondered if my past with my foster cousins caused it.. No amount of asking forgiveness and trying to figure out what I could have done different or if there was something else changed the circumstance. I now know better. It isn’t a punishment its a real condition.

Is she going to tell her husband to go find another wife? If she ends up with a secondary form of it.. I doubt it. She could say that is what she would do, but i doubt it.

Sorry had to vent. It was hard to see someone hurt soo much.  It took her a while to get to the point she is now. I was friends with her first. Her husband came to me after my physical therapist spoke to him. He asked me to talk to her about my past.  I felt that it took a lot to speak in person about my experience. I also felt like I was gaining control of the condition.

The condition no longer defines me. Yes I have Vaginismus. To all those like that wife:

We are not broken. We are not liars seeking attention.  We are capable of having good relaionships with a man. The physical may be an issue, but there is a lot more to a relationship than sex.  We didnt’ get this from a sin. go look in the medical book. Do your research?