"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.

It wasn't all in my head! #endometriosis #adenomyosis

It's done. Yesterday I had my uterus, cervix, Fallopian tubes, and left ovary removed. This morning I am laying in a hospital bed waiting for the nurse to let me get up and move around. Then I will be waiting for the doctor to give me the okay to go home.

I haven't talked to the doctor yet - my surgery was schedule to be an hour and a half. It took him three hours. I had endometriosis.

My uterus, colon, left Fallopian tube, and left ovary were all covered in endometriosis adhesions and twisted and fused together. As the doctor was telling Todd all that I had cut out, Todd's main thought was, "No wonder she was in so much pain."

I went to several doctors who all told me my pain was psychosomatic. I really thought it was in my head, and I was worried I'd get into surgery and the doctor would find nothing wrong with me.

What a relief to know there was disease, and the surgeon cut it out, so hopefully once I recover from the pain of surgery, there will be no more pain.

The pain has changed a little with surgery, but it's no worse than what I was living with almost everyday. (There's an incision in my belly button, and that hurts. The other three incisions don't hurt at all.)

The other cool thing about this experience: I was able to talk about PTSD and anxiety, AND I was able to ask for help. As I was coming out of anesthesia, I was in pain and felt panicked. I was able to tell the nurse, "I have PTSD from being raped, and I'm having a hard time right now. Can you talk to me to help me stay here in the present. My brain thinks I'm being raped again."

She brought me a pillow to hug and then talked to me. She asked me about where I live and what I do for a living and told me stories about herself. It didn't take too long for me to get grounded and be okay enough.

I'm really excited to see evidence of how much better I am than I was just a year ago.

Underwater Breathing

I started my scuba diving class.
I loved it. Water is a whole new world of exploration... I haven't even spent much time playing in a pool, and the thought of exploring lakes, rivers, and the oceans UNDER water sounds amazing.

Just think of all of the cool things I can see!

We went through a few of the things for certification:

I tried to smile for the picture.
That was less effective:
I lost the snorkel.

I had to swim. I had to use a snorkel, fill it with water, then blow it out, so I could keep breathing.

The fins caused me issue, because I got stepped on by a horse this week, so I finally took them off. It's hard to swim with a big tank on your back.

I had to breath underwater with and without the mask on. (First breath was SO weird!)

We learned how to clear the regulator. (It fills with water when you take it out of your mouth underwater. If you just put it back in and start breathing, you'll breath water.) We had to do that several times, and show we knew the different methods to clear it.

Then we had to flood our masks and clear our masks underwater. Having water in the mask made it so I couldn't see, and that caused me anxiety. I had a hard time thinking when I couldn't open my eyes... The instructor worked with me for about five minutes before I could (somewhat calmly) fill the mask with water, and then clear it.

Before class, I was a little bit worried that PTSD/anxiety/panic would make diving miserable (for me, and anyone with me). I'm not worried anymore. Before I go on a real dive, I'm going to have to get more comfortable with water in the mask, but I am confident with just a little more time and practice, I'll be past the anxiety.

I'm going to have to invest in a wetsuit or something. (I hate spending money, but I have learned that spending money on the right gear makes experiences so much more enjoyable. Something about freezing makes it hard to enjoy anything.) The pool was 80 degrees, and by the end of class I was shivering so bad I couldn't turn the knobs on the oxygen tank.