Didn’t go to work

My husband dropped me off at the surgeon’s office for my second post-op appointment yesterday on his way to work. I was already on Tylenol 3, as the pain had woken me around 5am.

I was very early to my appointment, so I had brought my laptop and was attempting to do homework. However, the pain ramped up, and it was very difficult to concentrate. As a result, I kept running into technical difficulties, which frustrated me, and likely didn’t help with the pain level. I estimated my pain got to 7.5 again at the surgeon’s office.

Around 10:30am, I made the judgement call to not go in to work. I phoned my workplace and made the arrangements for an afternoon substitute to cover the rest of my shift.

When my appointment time arrived, I was barely able to stand. I was shaking from the pain. I had just taken 600mg of Ibuprofen and half of a Tylenol 3 because I wanted to be coherent throughout the appointment. While my vitals were being taken, the director from where I work phoned and wanted to know what was going on. She said what I expected her and anyone who does not suffer with endo to say:

“But I just saw you yesterday and you were fine!”

Yes. But that was yesterday. The pain hits when it wants to. I was woken from my sleep with the pain.

The director asked me if this was Day 1 of my period. I told her, “Nope, it’s actually Day 3!”

I assured her I had no idea why the pain is now delayed after surgery, why I’m still getting pain at all, and that I was already at my post-op appointment and would be discussing it with my surgeon.

I appreciated that the director said she was concerned, and had wanted to check in with me herself, and that she was thinking of me. Most workplaces wouldn’t do such a thing. I did thank her for calling me like that.

My surgeon’s assistant and surgeon could see immediately how much pain I was in. They both catered to me sincerely, and made sure to bend down and look me in the eyes before speaking. Then they situated themselves in their chairs in the surgeon assistant’s office and we discussed how I’ve been doing since the January post-op appointment.

I noted how my January period had been shorter, but the pain and heavy bleeding was the same.
I noted how my February period had not left me bedridden, and how I did not have debilitating pain until Day 4 of my cycle, but that when the pain did hit, it still was 7.5 on the pain scale, and had it not been for the weekend, I’d have missed work the same as I always have before surgery.
I noted that my March period had also not left me bedridden until Day 3 (the day of this post-op appointment), when the pain reached 8 on the pain scale and woke me from sleep and caused me to cry.

My surgeon went over my surgery results again, saying there wasn’t much endo found this time around (stage I), and that she suspects neuropathy for the lingering pain. She went over the available options again, and said she knows most of them are out of the question for me, but wants to let me know that from current medicine’s standpoint, this is all that is available for me:

  • Danazol
  • Lupron
  • The Pill
  • Mirena IUD
  • Presacral Neurectomy
  • Hysterectomy
  • Pain management classes

 

Out of all of that, the only thing I’m willing consider is the IUD and further pain management classes.
I actually broke down and started crying at this point. I told them that I had seriously tried to do the UCSF campus pain management, but my insurance would not cover it.

I further lamented that our insurance runs out at the end of April, because my husband was laid off in December. I said my workplace offers Kaiser, and I had no idea what to expect with Kaiser.

My surgeon and her assistant comforted me, and assured me they know people in the Kaiser system, and would do some homework for me to help get me transitioned over there in their pain management program.

I am SO fortunate to have these awesome doctors! I do not want to lose them because of insurance limitations!!!!

And now for the rejection list of treatment options:

The Pill has already made me clinically insane on two occasions in my lifetime.

I refuse to go on any hormone, GnRH agonist or male cancer drug to try to treat the endometriosis, because of the side effects of bone loss, male hair growth and lowering of voice, worsening depression and suicidal ideation (if not outright psychosis for me).

My surgeon herself said hysterectomy was useless unless she takes my ovaries, which are the main things that the endo is attacking. But if she takes my ovaries, I have to go on HRT, and that puts me back into the infinite loop of insanity.

Presacral neurectomy had never been mentioned before, and I was told it’s not recommended often at all – it has to be a special case – and my surgeon is starting to think I fit the bill for the special case.
I was told of the most common side effects and I asked smart questions, and I probably won’t go with the neurectomy. I will post more about that in a separate entry.

So again, the only thing I’m willing to consider is the Mirena IUD.

I got the prescription and referral in case I decide to go with the IUD.

When the appointment was over, I phoned my husband and told him I’d be hanging out at a friend’s house until the pain passed, and maybe I’d try public transit to go home.

I then walked to my friend’s apartment nearby and we hung out all day. By hanging out, I mean that we sat at her kitchen table, and spent a lot of time hacking up our lungs (I am still getting over the flu, she is still getting over whooping cough and yes I am immunized).

The pain did pass, and after awhile we left the apartment and got on a bus to go four blocks up hill to a coffee house. The bus ride set off a new round of pain. I thought that standing on the bus would be better than sitting, but nope – doesn’t matter. The muscles used in keeping oneself balanced and upright on a moving bus is enough to aggravate endometriosis pain. This is the second time it has proven true for me.
After we hung out in the coffee house, and my pain was only worsening, I asked if we could go back to my friend’s place. We walked back, since it was downhill, and actually the walking did help the pain a bit!

It wasn’t long after that that my friend had to go to work herself. I thanked her repeatedly for letting me spend the day with her. I spent an hour more at her place, trying to do homework again, and then my husband got off work and came and picked me up.
I thanked my husband profusely for dropping me off and picking me up.

I am very fortunate to have such emotional and physical support right now in my life. I wish all of my endo sisters had this level of support. I do not take it for granted because I have not always had this kind of support myself.

It’s a basic right to be treated humanely when you have a chronic, painful, incurable autoimmune disease, and yet so many are not treated humanely with dignity and respect.

Today is a new day, my pain level is low, and I will try to go in to work.

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