The Journey

By Mary Oliver

One day you finally knew
What you had to do, and began,
Though the voices around you
Kept shouting
Their bad advice‚
Though the whole house
Began to tremble
And you felt the old tug
At your ankles.
“Mend my life!”
Each voice cried.
But you didn’t stop.
You knew what you had to do,
Though the wind pried
With its stiff fingers
At the very foundations‚
Though their melancholy
Was terrible.
It was already late
Enough, and a wild night,
And the road full of fallen
Branches and stones.
But little by little,
As you left their voices behind,
The stars began to burn
Through the sheets of clouds,
And there was a new voice,
Which you slowly
Recognized as your own,
That kept you company
As you strode deeper and deeper
Into the world,
Determined to do
The only thing you could do‚
Determined to save
The only life you could save

I have not felt suicidal for what feels like a long time (and probably has been a long time for my brain when I have not conquered a bout of depression).  For the past 2 weeks or so these dark thoughts have re-entered my mind with a fervor and this concerns me. I have been on the same cocktail of medicine for a year now, which is the first time in over four years that my medications have not been changed every 3-4 months.  This feels like a victory because it means I am stable (with the occasional trigger or bad week) and I have also gotten used to whatever side effects that come with this cocktail and have learned to live with them. Almost a year ago I started TMS (Transcranial Magnetic Stimulation), which along with this medication cocktail I am currently on, I credit with saving me from the depths of depression and probably my life.  Overall, I think the past year has been one of my best (of the past four) in terms of my mood and energy and this recent return of suicidal thoughts makes me worried. My wise mind reminds my emotional mind that thoughts come and go and most likely the reason why they have returned is due to the chronic pain and the increase in the severity of pain that I have been dealing with for about a year and 7 months.

The pain I am writing about began in September of 2016.  All of you who are squeamish about the reproductive system need not read any further!  It started with a UTI that lasted for about a month and a half. Although the UTI had been medically resolved with two rounds of antibiotics, my body felt like it was still there.  My symptoms were intermittent dull and stabbing pelvic pain and a feeling of pressure on my lower abdomen. Because I was and still am doing trauma work in therapy, my therapist, psychiatrist, and I thought I was experiencing body memories, which I had not heard of until then.  (For more information on body memories click here http://help4trauma.org/bodymemories.html).  After a couple of months of this pain and an increase in the frequency, I became worried and scheduled an appointment with my primary care physician’s office with a doctor I had seen once (my regular doctor was not available).  At this appointment it was very apparent to me that this doctor was in a rush and I was in the way of her lunch break. I explained to her what was going on, along with the information about my PTSD and working through that in therapy (which is hard for me just to tell random strangers and to talk about in general).  She basically dismissed my pain, told me it was probably in my head and ordered a strep test because I mentioned that I had a sore throat, but that was not the reason for my visit. She acted like the strep test was my consolation prize and that they would call me with the results. As I knew, the strep test was negative and my pelvic pain remained along with shame and embarrassment.

In the past year and 7 months I have been to 2 visits with primary care physician’s, 2 Minute Clinic appointments, 3 visits to a urologist who specializes in female issues (including one invasive procedure), 6 visits at my gynecologist office with two different doctors, countless dry needling visits and conversations with my boss and coworker (physical therapy office), and 1 visit to a gynecologist who specializes in endometriosis. I have been to the gynecologist more in the past year than in my entire life (seriously,one of the things I hate most in the world). The visits with the urologist and gynecologists left me feeling triggered for several hours to a couple of days.  I think I dissociate somewhat during these procedures and later on in the day my mind finally catches up to what my body felt and I end up feeling dirty, disgusting, and humiliated. Any other body part would be so much easier to deal with it really makes me angry that it’s my pelvic region.

What has been extremely frustrating is that in this whole process I don’t have someone overlooking everything.  My psychiatrist has told me to speak to my pcp, my pcp has told me to speak to my gyno, the gyno has referred me to the urologist and so on.  Even though I would think that my psychiatrist would want to speak to anyone messing with my hormone levels, as any change could affect my mental health symbiosis.  Everyone seems to be passing the buck to the next medical health professional. Honestly, my therapist and my boss have been the most helpful through this whole process and they are not medical doctors.  

In May 2017 I decided to try the Mirena IUD with the hopes that regulating my menstrual cycle would help resolve my pain and the hemorrhaging that occurs along with it.   I was pretty much pain free for 4-5 months with the Mirena (and period free, yay!) and then I started having back and hip pain along with the return of the pelvic pain. In February of 2018 I went back to the gynecologist, and she saw that I had a 3mm cyst of my right ovary and that this was probably causing my pain and could have been brought on by the IUD (a side effect is an increased risk of cysts along with a bunch of other unpleasant other side effects).  She did say that it looked like the cyst was resolving on its own and that I should follow-up in a month. A few days after this appointment I called her because my pain had not decreased and Tylenol and Motrin were not helping. For the record, it’s very hard for me to advocate for myself and I dislike calling physicians to ask questions. I hate asking for things in general. When she called me back, she basically insinuated that the amount of pain I was having seemed to be more (meaning that I was exaggerating or drug seeking) than what someone should have with a cyst of this size that was resolving on its own.  She called in a stronger type of Ibuprofen to the pharmacy and said that should help. It did not. When I went to my follow-up with her a month later, I still had the cyst, but it reduced in size to 1.5mm. Because I was still having the back, pelvic, and hip pain, we decided to remove the IUD at that appointment to see if that was the issue (as I had done extensive research about the side effects of the Mirena) and had never had back pain before getting the IUD.

Since having the Mirena removed in March of this year, I have had right eye twitching every day, pain in the palm of my hands, increased back, pelvic, and hip pain, bloating and have been unable to wear any pants that put pressure on my middle and lower abdomen.  I have had to buy 5 pairs of leggings and long cardigans and shirts so that I have clothing to wear to work! Although the Mirena was not the answer to my pain, it does appear to have helped some with my symptoms because now I am much worse now without it.

I am thankful that I have an awesome job and I heard a patient telling my boss about the doctor who had changed her life.  He was the 9th doctor that she had seen and she was so happy to share his information with me. I had to wait a month to get an appointment with him and saw him 10 days ago.  At this appointment he validated my pain and basically acted like it was a no brainer that I have endometriosis. He was surprised that no one else connected my symptoms with an endometriosis diagnosis. He gave me three surgical options to choose from and sent me on my way. The appointment and his conclusion happened so fast that I had to verify with him that he was sure and that I had heard him correctly. I don’t think I have ever happy cried like I did that day when I called Leah from my car.  I cried because I finally had an answer that made sense, that I was not crazy or making things up, and that hopefully my symptoms will be alleviated soon.

I feel like I have been on a roller coaster of emotions since then.  It is disappointing that there is not a cure for endometriosis, especially since it apparently is very common (almost as common as diabetes).  I go from being hopeful that treatment will alleviate my symptoms to wondering if I will be in pain until I go through menopause. I have scheduled a laparoscopic procedure for July 11th and I think the hardest part is going to be waiting until then when it feels like my pain is increasing and my comfort levels are decreasing.  All the doctors that I have seen are hesitant/ resistant to prescribing me anything for pain, which is frustrating. I have been researching what I can do on my own in order to be able to function on a daily basis. Getting out of bed in the morning has been particularly difficult. I am extremely tired and usually in a lot of pain. I have noticed that I am not enjoying activities and end up leaving early in order to be able to alleviate my pain and get comfortable at home.   This morning I felt especially hopeless and I wondered how I am going to be able to wait until July. The dark thoughts clouded my sunny drive to work and as usual lately, I felt on the verge of tears. I am reminding myself to try to take it one day at a time and to allow myself to be aware of my needs without beating myself up.