Friday, March 25, 2016

"Don't ask me. Tell me. You're the boss." #pelvicfloorphysicaltherapy #endometriosis #PTSD

Three months ago, I had a complete hysterectomy and endometriosis excision surgery. The doctor didn't know how extensive the endometriosis was until he got in. My bladder, bowel, colon, rectum, left tube, left ovary, and uterus were all fused together in one big clump. There were several other spots of endometriosis spread throughout my pelvic and abdominal areas. It was a pretty extensive surgery, and it's taken a while to heal.

There are a lot of things that have improved since my surgery.
I no longer have pain so bad that I feel nauseated. I no longer spend a few days vomiting during my period.
I don't have a period.
The intense pain (felt like a hot poker stabbing my insides) is gone.
I don't feel the burning/urgency/painful cramping whenever my bladder is full or while peeing or after I've peed. It used to feel like I had a UTI all the time, but I don't feel that way anymore.

I still have some bowel issues that weren't there before the surgery, but since I had major surgery on my bowels, it's apparently normal. It takes time for those things to heal.
I also still feel exhausted a lot. I no longer take a nap everyday, but I feel like I still could if I had the chance.

I still have a constant aching, burning, uncomfortable pressure pain throughout my whole pelvic region. That combined with the fatigue I still have since the surgery has been discouraging. Last week, I spoke with the surgeon again. He told me I should be feeling better by now, and suggested I give physical therapy a try to see if that could help me. He also said it could help with preventing more adhesions (scar tissue) from sticking to my organs and muscles. Scar tissue can cause the organs to stick together in the same way endometriosis did. If it got bad enough, I'd have to have surgery again to fix it. Physical therapy can help break up the scar tissue and keep the organs moving in the way they should.

Pelvic floor physical therapy was not my idea of fun. It sounded AWFUL. Besides the fact that physical therapy of any kind is generally painful and difficult, I have a history of sexual abuse. I have been diagnosed with PTSD, and anything that feels anything like being sexually abused felt, triggers reactions in my brain and body. PTSD makes it hard for me to know if I am in the present (with a doctor that can help me) or in the past (with a man who is raping me). As far as my body and brain are concerned, I FEEL like I am being raped. I am in the past. I can see the things I saw then. I can hear the noises of the fan whirring above the bed, and his grunting. I can feel the pain of being raped or the suffocation of having a pillow over my face. I feel scared and alone and betrayed and disgusting and disgusted. I feel so many things that I can't come back to the present without a lot of work and usually some help.

Pelvic floor physical therapy uses both internal and external muscle manipulation. It's like a regular exam on steroids - and I have never done well with regular exams.

I was afraid to go, but I also want to feel better... Really better. I want to be able to go to work, or fishing, or horseback riding, or to sit on my couch and watch TV, and not think about being in pain. It's exhausting to be in pain, and it takes a lot of energy.  If there's a chance I don't have to live like that, I want to do whatever I can to take that chance.

Pelvic floor dysfunction can be caused by a lot of things.
Chronic pain from endometriosis can be a cause. Surgery (hysterectomy or the extensive excision) can also cause it. Sexual abuse can also be a cause.
It could also be caused by pregnancy, miscarriage, sitting too much, exercising too much, poor posture, etc.

(In other words - I have a lot of things that could cause it, and they probably all contributed to where I'm at today.)

I had my first physical therapy appointment yesterday. I was scared out of my mind. I asked Todd to come with me. I made the decision that I wasn't ready to do any kind of internal work yet. As I was filling out the paperwork before meeting with the therapist, I was trying not to cry or panic or run away.

Then I met her.
She asked me about my pain. She asked me to describe it. She asked me what has helped, what has made it worse, what other doctors and professionals have told me, and she told me it usually took a woman seeing at least seven doctors before they got to her. (I counted. I have been to eight doctors for pelvic pain. The last two were helpful. Everyone else was dismissive.)

She showed me some stretches to do. She reminded me the importance of breathing deeply (diaphragm breathing). Then she handed me a sheet and told me she liked to do both internal and extrernal work.

"Is it okay if we just start with external for now?" I asked, very timidly.

She responded, "Of course! Don't ask me. Tell me. You're the boss. It's your body - I'm just here to help you."

I breathed a sigh of relief, and gladly got on the table where she massaged my incision scars and tested to see how tight my stomach and back muscles were. She had me move in different positions as she massaged and moved different parts of me. I learned about fascia, which I was unfamiliar with before. She talked a lot about teaching my body to send new signals to my brain, because the cause of the pain was gone - but my body didn't know that yet.

I walked away feeling hopeful. I still don't want to go through the physical therapy. It still sounds awful. I still think I will have a really hard time with it, and I will probably get triggered in a way that will leave me feeling awful on more than one occasion. I also know enough about recovery and PTSD and myself to know that I can handle it... And the only way out of the pain is to go through it.

So... here I go... through pain. Twice a week for at least the next month.

Thursday, March 3, 2016

Three months Post Op - I thought I'd be feeling better by now. #Endometriosis

It's been three months since I had surgery. I was amazed at how much better I felt after surgery.

And then I started moving around more.

Three weeks ago, we had a tradeshow to go to. I know I overdid it. There were a lot of things to carry and set up, and it was a lot of work. It had to be done. Ever since then, I have been in enough pain that I have yet to feel like doing much more than what I have to do. I have yet to work a full week, so I'm not even doing what I have to do yet.

Todd went fishing this morning, and I didn't even think about going because I didn't want to go.
I haven't felt much like fishing for a year. I haven't felt like riding in more than that. (I also haven't ridden much because Todd's horse has been lame, so if I go riding, it's by myself. But to be honest, I haven't even felt like doing that, because it hurt too much.)

But before surgery it felt like I could just ignore the pain if I had to... push through it... And pushing through it didn't make things worse like it seems to now.

I just thought I'd feel better. I just thought that by now I'd want to be outside with the horses again or starting to work on my garden or fishing... or if not fishing, hiking and taking pictures (because the water is still a little cold for me to think fishing is fun, even if I felt amazing.)

Today, I just feel discouraged.