Category / endometriosis

by krubesch

Resilience

“The trouble with chronic pain is that it is so easy to become accustomed to it, both mentally and physically. At first it’s absolutely agonizing; it’s the only thing you think about, like a rock in your shoe that rubs your foot raw with every step. Then the constant rubbing, the pain and the limp all become part of the status quo, the occasional stabbing pain just a reminder.

You are so set to endure, hunched against it – and when it starts to ease, you don’t really notice, until the absence washes over you like a balm.”

Robert J. Wiersema

A year ago a surgeon changed my life. His bedside manner was a little brisk, but his expertise and willingness to listen earned my trust. Only now have I realized the impact my surgery has had on my body and my life.  On 10.24.2019 I had endometriosis excision, a hysterectomy (only kept ovaries), salpingectomy, and an appendectomy all at once.  I had been in chronic pain for over three years and had undergone 1 major surgery and 1 minor surgery in the 13 months leading up to this procedure.  

Prior to October of last year, I was exhausted, consumed by my pain, isolating myself, and feeling hopeless. I was not sleeping very much, had daily hip and back pain, and monthly abdominal and pelvic pain. I was hopeful that another surgery would help, but had learned from previous experience not to expect that this would have a huge impact.  Having my pain dismissed by over 7 doctors and my previous surgeon (and seeking treatment in two different states) had turned me into a pessimist (even more, lol) and I realize now that I was on the brink of falling into a major depression.  I was teetering at the edge. 

It is ironic that my three years with chronic pain had prepared me for living through this pandemic. Life is not that much different. We don’t make a lot of plans, I had gotten used to the solitude of canceling plans; as the prospect of sitting in an uncomfortable chair for even five minutes sounded exhausting. What is different now is that I want to have plans and see people (when we can’t!), I have been cooking from scratch, I have become a lot more physically active, I have taken up hobbies again, and I no longer feel hopeless about the physical state of my body. 

I am grateful I have a wife that was willing to travel with me out of state at least 5 times in order to find a doctor who could help me, even though we really did not have the money for travel expenses, multiple Airbnb and hotel stays, and time off of work.  She was patient with me, as I am sure I was not the easiest person to live with. Thankfully my surgery was covered by insurance and I did not have any surgical complications.

I have had some unexpected grief come up surrounding the permanence of not being able to have children biologically, even though we have decided not to have children. I did not expect the finality of this to affect me as much as it has emotionally. (I have found big decisions like this hard to make because I struggle over choosing the right decision and not messing it up).   I have found this to be true in other instances of grief, that the absence of possibility is very hard to accept.  That the option to change my mind is no longer available. Even with this grief, I do not regret my choice to have a hysterectomy. I know that it was the best option for me and I have reassurance of this decision everyday with the way my body feels. And also every month, lol.  That has been AMAZING and life changing.  It is like a little victory every month and feels like a prize I have earned. I wear my scars with pride. 

It is astounding to me that at least 1 in 10 women have endometriosis and there are less than 100 doctors in the US who know how to treat it effectively.  Of those 100 doctors, few are in network with insurance. This enrages me and has continued to make me vocal about endometriosis and become an advocate to anyone I know who needs to figure out how to receive effective treatment.  

Although I am not entirely pain free, I am 98% sure that my endometriosis was effectively treated and my current back and abdominal pain is caused by my hypermobility and not endometriosis.  I have been going regularly to physical therapy (well, minus a couple months during the pandemic) and am having to relearn how to hold my body when sitting and standing due to the laxitisity of my muscles and the toll that being in chronic pain has caused on my body. I no longer immediately panic that my endo is back when I have bouts of chronic back pain thanks to relief after physical therapy, although the worry hovers in the back of my mind. I don’t think this worry will ever completely leave my mind, as endometriosis is a chronic condition and can (although rare) come back after effective treatment. 

I am hopeful that this surgery and changes I have made in my diet and environment (paraben and sulfate free products for house and beauty), along with physical therapy and keeping up with my exercises will continue this upward trend in my pain and overall wellbeing.

by krubesch

Hearts Keep Drumming

Hearts Keep Drumming

Oh life
Is just a game
No one ever tells you how to play
See different people
Go different ways
Some of them will leave you but
Some of them will stay
Well our hearts keep drumming
And the years keep coming
Quicker than they’ve ever been
You’re sick of the same thing
But it’s quicker than changing
It’s too late to begin
Well everybody’s running
But you don’t know where
Time is running thin
Everybody’s looking for somebody to love
But we’re scared to let them in
And I say oh oh oh
Are there any survivors?
Am I here alone?
I say oh oh oh
Are there any survivors?
Am I here alone?
Am I on my own?
Am I on my own?
Oh love
It comes and goes
But no one never tells you how to learn to let go
Different people, they walk different roads
Some of them will hurt you but
Some of them won’t
Well the bridge is burning
And the wheel keeps turning
Quicker than it did before
Your heart screams “yes”
Your head says “no”
And you’re never really sure
Well everybody’s running
But you don’t know why
Time is running short
Everybody’s looking for a place to hide
So there’s no one left at all
Survivors
By Passenger

It’s been almost a year since I have posted on my blog. It’s not that I have not written, I just did not feel like sharing what I wrote, as it has been a difficult year and I have felt guarded. Everything I wrote just seemed so dark and depressing. I judge myself a lot harsher than I would anyone else and feel like what I have written is utter crap. This past year has felt like being on the biggest and craziest roller coaster at six flags. Not only have I had some of my lowest moments, I have also had some really good experiences, in which I have pushed myself out of my comfort zone. These experiences seem to have changed me in substantial ways and pushed me to grow in ways I don’t think I otherwise would have.

In February after years of hearing about it, I took part in Ladies Rock Camp. Thanks to my friend, Emily (!) and all my awesome friends who donated towards my tuition. This is basically a 3 day music camp for adults that includes music lessons, we are split into bands, and then tasked to write an original song and then perform it at a venue. I was so excited and nervous before participating and had a lot of self doubt about taking part in this. I am so glad I did it! I played the drums (my first choice of the 3 instruments I put on my paperwork) at Ladies Rock Camp and this was the first time I had seriously played since I was 17 years old. I had a bad experience with a band director in high school and was picked on for being one of the only girls (and good) who played the drums in middle school and thought that I would never play again. This experience was amazing and really boosted my self confidence. I feel like I was able to reconnect with this part of my 17 year old self and it felt really healing. It was nice to prove to myself that I could do something that felt really scary and out of my comfort zone and actually excel at it. I didn’t even get mad at myself when I goofed up during our performance (big deal for me!). This is something I try to hold on to when I am having difficult moments and I am slowly starting to add the drums back into my life as a fun activity. This was definitely one of the heights of the rollercoaster of the past year.

Part of the reason why I am writing about all of this now because not only do I need to sort out the thoughts in my head, but I think I need to reach out for help from my friends and family. Writing seems to be the only way in which I am able to articulate my thoughts and needs in an effective way.

I was diagnosed with stage 4 endometriosis after having surgery on 08/01/2018. The doctor who diagnosed me was the 7th doctor I had seen for the chronic pain I had been experiencing at that point for two years. Although that surgery relieved a lot of my pain, I started having chronic back pain again in October of 2018. Since then my pain has increased and is now affecting different parts of my body. Currently, and in the past 6 months, my pain levels radiate between 6 out of 10 to as bad as 10 out of 10 on the pain scale. My wife tells me I am not an effusive or demonstrative person (What?! who is surprised by that other than me?!) and that she has not been aware that I have been in that much pain since I don’t go into detail when I tell her I am hurting. To me, saying that, “I am hurting” means that I am in a lot of pain because I don’t usually complain. I think that I am conveying to people how I feel when apparently I am not getting my point across. That has been a big source of frustration in general for me, as I think I am communicating to people when I am actually not. I need to keep this in mind and try to be more descriptive with my words.

After almost 8 months of physical therapy ($$$ because hardly any pelvic floor therapists in Georgia are in network with insurance), an MRI, a back x-ray, appointments with my primary care physician, my surgeon and a rheumatologist, I still did not really have any answers about why I was continuing to have chronic back, hip, glute, thigh and heel pain. In early April, I became a little desperate about my increased pain and decided to get a 2nd or 8th (depending on how you look at it) opinion from a doctor in Chattanooga who was in network with my insurance and really seemed to know his stuff. When I called the earliest appointment he had available was 08/06/2019, so I went ahead and scheduled it.

On my birthday, 4/30/2019, the surgeon who originally diagnosed me, called me to let me know I had some concerning cysts and “fluffy” tissue that her radiologist noticed on the MRI I had in February (after Emory told me it was normal- the 2nd MRI they have misread). She let me know that she would need to do multiple procedures along with a biopsy as soon as possible to determine if that was causing my recurrence of pain and to rule “other things out.” Of course I immediately went into panic mode and consulted Dr. Google! Bad idea… My immediate concern became that I might have cancer. I continued to pretty much obsess about this until we finally got the results of my biopsy. Almost two months after that phone call and the procedures, I found out that I did not have cancer and that the “fluffy” tissue was likely due to the excess estrogen that is caused by endometriosis.  Not a definitive answer as to if this is causing my pain. My doctor seemed pretty unconcerned with my pain levels, especially since my test results all came back “normal.” I decided to keep that appointment with the other doctor in Chattanooga in hopes that he might have some insight.

I am really glad I kept the appointment with the surgeon in Chattanooga. He listened and asked questions in a way no other doctors had up until that point. He knew from looking at my previous surgery pictures that I still had endometriosis on my intestines and most likely in other areas in my abdominal area. He told Leah and I that I would need another surgery and explained that I would need to have my appendix removed because it can be a pelvic pain generator and excise any endometriosis that he finds when he goes in. He also highly recommended that I get a hysterectomy and he will leave it up to me as to whether I keep my ovaries or not. He did extensive blood work at that appointment, ordered a lumbar MRI (in hopes to see if he could tell what was causing my back pain, although he is pretty sure it is endometriosis). I left that appointment in tears- partly because the drive to Chattanooga felt amazing compared to Orlando (my other surgeon’s office is there) and really because, once again I know my body best and I am not crazy. He validated the fact that I knew and still know that there is something wrong with my body and my surgery was scheduled by the time I left his office. His office is so much more efficient than my previous surgeon. He answered all of my and Leah’s questions in detail and spent over an hour with us at my appointment.

I thought that waiting 4 months for my appointment with him would probably be the most difficult thing out of this process, well I was wrong. Our insurance changed in July of 2019 and I have been trying to get the MRI that my doctor ordered approved by our insurance company for two months at this point. My doctor’s office and I have spent hours on the phone with them, he did a peer to peer review (where your doctor tries to convince one of the insurance company’s doctors that you need whatever procedure they’re denying), and I wrote an appeal letter- including my eight months of physical therapy notes, my x-ray results, and a note from my therapist (basically saying that chronic pain and constant self-advocacy and battles with insurance is affecting my mental health). I am still in limbo as of today as to whether they will cover my MRI and my surgery date is 20 days away. I thought that having three months in between my appointment and my surgery date would give me plenty of time to get everything in order. As of today, I still don’t know if they are going to approve my surgery that is scheduled out of state in less than 3 weeks.

Everything came to a head last night and I had an epic meltdown. I started crying while I was cooking because we were out of avocado and that was supposed to go into the meal that I was cooking. I am on a crazy anti inflammatory/endometriosis/ interstitial cystitis diet to try to manage my pain and inflammations and it was the avocado that tipped me over the edge! All the feelings that I have been keeping at bay by remaining constantly busy, productive, researching and planning, all came rushing to the surface and finally I let myself stay with my feelings and allow them to move through me. I am so so tired. Being in constant pain and remaining a productive member of my household, job, and society in general is so draining. I am very careful as to how much we have scheduled outside of work because even a fun and easy dinner with friends is exhausting. I know that I have been isolating myself for this reason and also having a chronic illness that involves my lady parts is not necessarily the easiest thing to talk about, nor the most acceptable in our society. I am aware that I am not reaching out to people when I need to and I am going to work on this.

It’s very hard to try to process losing my uterus when I don’t even know if or when it is actually going to happen. It feels hopeless to have to fight with my insurance company when I am in so much pain and the dark thoughts I try to keep at bay come bubbling up to the surface. These suicidal thoughts make me feel riddled with shame along with the shame that comes with having endometriosis in the first place. Not to mention having to prove to doctors and insurance companies that there is something wrong with my body. This is something that needs to be discussed. 1 in 10 women have endometriosis and so many women have hysterectomies and don’t talk about it. I would love any input from those who have had one, as to what to expect, tips and anything else I might need to know.

I am scared about my surgery. I am scared that the surgery won’t help and that I will feel this way the rest of my life. I am scared of not knowing how long I will be out of work (it will depend on exactly what is done in surgery and we won’t know until it happens). I am terrified that we will have to go into debt or that I will have to delay this surgery even longer. I am scared that permanent damage is being done to my body while I am in this limbo. I worry about Leah having to take on most of the household responsibilities while I am recovering, and the toll her worry over me takes on her. I worry that I made the wrong decision in not having kids now that it is almost too late. I worry about possible complications from my upcoming surgery. I am so anxious about our insurance and whether we will have surprise bills IF they even approve my surgery.

 

Did you know?

  • Endometriosis is one of the top three causes of female infertility
  • An estimated 8.5-10 million women in the US and 200 million (that’s 200,000,000) worldwide are believed to be affected
  • Extremely painful menstruation, endometriosis’ most commonly known symptom, is the leading cause of missed work and school in young girls and women, according to one NIH study
  • Endometriosis commonly goes undiagnosed or misdiagnosed, with women experiencing about 6-10 years delay before being correctly diagnosed
  • Endometriosis is also frequently undiagnosed in teenage girls, due to persistent medical myths, like the false belief that pain with periods is normal or that teenagers rarely get endometriosis
    Taken from http://nezhat.org/endometriosis-treatment/endometriosis/
by krubesch

Excision

“There’s no race, there’s only a runner
Just keep one foot in front of the other
There’s no race there’s only a runner
1, 2, 3 even when you get tired
Just keep one foot in front of the other
There’s no race, no ending in sight
No second too short, no window too tight”

By Lucius from ” The Two of Us on The Run”

I’ve wanted to write for a while since my surgery, but I wanted to wait until I had only good news to report. Well, real life apparently does not work that way and I have to take the good along with the bad. Leah and I drove to Orlando, FL on 07/30/2018 in preparation for my surgery with Dr. C on 08/01/2018. We arrived safely and we were smitten with the Airbnb that I had booked for the 9 days we were there. I felt proud that all of my obsessing and research paid off! Although the circumstances were not ideal for a “vacation,” we ended up spending some much-needed quality time together and had a really good time all things considered. My biggest fear going into surgery was that I would wake up after surgery and be told that they could not find anything wrong with me. To my surprise, it was quite the opposite.

After my surgery, while I was recovering in the post op area, Dr. C pulled Leah into a room to discuss her findings and to let her know how surgery went. Leah was pretty anxious because the surgery went longer than expected (and well, because she was just worried about me having surgery in general). Dr. C told Leah that the surgery went well, but “Your wife must have been in a lot of pain for a long time. That was a lot to find. I was not expecting to find all of that.” She went on to explain to Leah that she has diagnosed me with stage 4 (out of 4 stages) Endometriosis. I had lesions all over my pelvic cavity including my large intestine, Sigmoid, the posterior cul-de-sac region, my uterosacral ligaments and that my left ovary was encased (meaning that the adhesions had it stuck to my abdominal wall). The good news is that a colorectal surgeon was available and able to come into surgery to assist Dr. C since we had not anticipated that my bowel would be affected that much. She is also pretty confident that she excised all of the endometriosis and the biopsies revealed that I am cancer free (yay!).

The difficult news to digest is that endo is a chronic condition that I will most likely deal with the rest of my life. I am having to change my diet to eating antioxidant and anti inflammatory foods, using organic and natural products (household, beauty etc.), be on birth control indefinitely (according to her school of thought, the jury is out and lots of conflicting information about this) and keep a close eye on my symptoms. Dr. C wanted me to try this new “wonder” drug called Orlissa, but I told her I had a lot of reservations because of what I read in regards to how it affects mental health (and it has not been proven to be more effective than birth control at this point and excision has been the only method proven to be effective in treating endo blah blah blah) AND it costs $3,000.00 a month. She was very understanding and did not push me to try to take it anyways, which I really appreciate. It’s really nice to feel like I have a say in my medical care and that the doctor respects that.

I am very grateful to Dr. C and am overall happy that I went with her. She is so knowledgeable, kind, and confident in her skills. After meeting her, Leah also fell in love and understood why I felt like I was in capable hands. The surgery went as well as I could have anticipated, I did not get nauseated and my pain was very manageable. I was mostly sore and very tired. After surgery I felt like I could definitely tell a difference in the endo pain lessening and that my body felt different. One example is that for the entire month of July I was craving lemon lime Gatorade like crazy. It’s all I wanted to drink- my regular decaf coffee made me nauseous just thinking about drinking it. It was like my body was missing some nutrients. Immediately after surgery, I no longer wanted Gatorade and the craving was completely gone.

I went back to work 10 days post op and did mostly fine besides fatigue and getting sore from using my abs to sit for extended periods of time. Two and a half weeks post op I unexpectedly got my period (I am on continuous birth control and should only have three a year) and that is when the excruciating pain began. I had read that the first menstrual after excision is supposed to be pretty brutal and it was especially since it was so soon after surgery. This pain was worse than any I had prior to surgery and I was in a really bad way until I received a prescription from my doctor. I had to call three days in a row in order to get something called in- which I am not used to doing. It was very difficult to keep calling and advocate for myself. When I have to do things like repeatedly call an office, I feel like I am being a giant pain in the ass and I don’t want to inconvenience people.

I am still pretty tired and a lot of the pain has gone away, but I am still having lower back, hip and butt pain which is disappointing. I have done a lot of research and learned that surgery is not a quick fix all and that since I have been in chronic pain for years, it could take some time and other interventions (physical therapy etc.) in order to get all the pain to dissipate. I also really wanted to write this post with the news that I have been able to wear regular pants with a waistband, but that is not the case yet (due to pain with pressure and bloating). I am still sporting leggings and Stevie Nicks flowy tops and will be for the time being!

It’s been hard to keep my head up lately. I don’t know if the fatigue, chronic pain, or birth control is the contributing factor or a combo of all three, but I have been struggling with some depression, crying spells, and insomnia. I am trying to remember that this did not start all at once, therefore it’s not going to end all at once. My strategy the past couple of weeks if just to keep my head down and one foot in front of the other. I am trying to make sure I get adequate rest without isolating myself and making sure I stick to healthy foods that will decrease the inflammation in my body, along with some exercise.

I am super glad I did not go with the two surgeons I consulted with in Atlanta. The first one would have given me a hysterectomy and not have been able to address the endo that was all over my insides. That would have done nothing to ease my pain and left untreated I could have ended up with a colostomy bag. The second doctor did not really seem to have the knowledge or expertise to deal with endometriosis of the bowels and told me he did not think I had endometriosis at all based on my symptoms and his exam (boy was he wrong!). I feel like all my hard work and research has paid off and I now have a team that I can work with and that will support me through this disease.

https://www.drseckin.com/endometriosis

by krubesch

Try, try Again

“the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own”

― Mary Oliver

A lot has happened since I posted about my chronic pain in the blog post, “The Journey” in May. I wrote about my appointment with a surgeon who I was scheduled to have surgery with this month, but after that appointment I did a lot of research and listened to the nagging feeling that he was not the right doctor for me. My gut is 99.9% on point and when I don’t listen to that feeling I usually am disappointed and end up paying for it.  I am very glad I followed my gut this time because the route he wanted to go conflicts with a lot of the research on Endometriosis and would probably have lead to me needing to have multiple surgeries. Since February, I have spent countless hours learning as much I can about endometriosis in order to squelch my anxiety and to make me feel like I am doing something about my pain while I am just waiting. An acquaintance had a really bad experience with the surgeon I saw in April and had to go to another surgeon in order to fix the damage he did and address her symptoms.  She gave me the info of the surgeon that she credited with “saving her life” and I made an appointment with him towards mid May.

I was really hopeful that this doctor was going to be “the one” since he is in network with my insurance and located in Atlanta.  He was a lot more knowledgeable about endo than the other doctors I had seen, but still gave me conflicting information from what I had researched (through very reputable sources).  He told me that even if he did surgery, the endo would come back within two years and I would need another surgery at that time. In my research, I found that if a physician properly excises the endometriosis and removes any other areas affected there is a 10% chance of the endometriosis coming back.  I asked him to do bloodwork since I had not had any done in almost a year. He dismissed me and asked me, “what type of blood work should I order?” I wanted to tell him that he was the one who went to medical school and that a quick Google search would give him the answers, but I held my tongue. He also indicated that he did not think I had endometriosis and wanted to try me on a birth control pill for the next several months to see if that helps (since I had only previously tried an IUD).  Through my research I had learned that birth control does not necessarily stop the progression of endometriosis, but it masks the symptoms. I tried to explain to him that I was very worried about taking anything that might cause depression and mess with my mental health, as this is a delicate balance that I don’t want to mess with. He put me on Yaz and told me I could stop it if I had any mental health issues. I left that appointment trying to hold back tears and sobbed the entire car ride back to work.  I was disappointed that the appointment did not go as I had hoped and I felt slightly humiliated from yet another examination and having to explain everything that is happening with my body. I had hoped to feel like I was on the right track and that I was in good hands, but that nagging feeling in my stomach was still there.

After doing more research I decided to see my primary care physician to update her on the situation and to also have blood work done.  She was wonderful
(thank god!) and my blood work showed that my c-reactive protein level has increased and is high (this only indicates that there is inflammation somewhere in the my body and leaves me susceptible to a whole list of issues in the future if it remains high) and that my vitamin B12 and D levels were really low.  I started on some more supplements to address the vitamin levels and decided that I would pursue trying to get an MRI of my pelvis. Research and many case studies have demonstrated that endometriosis does not always show up on an MRI, but my thoughts were that at least we would know if something was visible or not.  I contacted the second surgeon, who put me on the birth control to see if he could order an MRI. Initially he did not want to, stating that it might be a high out of pocket expense to me. I let him know that I knew my benefits and that it would be covered because we had met our deductible and out of network deductible.  After I advocated for myself, he ordered the MRI. When I went to have the MRI done I got really faint, pale, and sweaty because the nurse dug into my veins to put in the IV. She acted like this had never happened before and that I must have done something to make myself react this way. A couple days later I was told that the radiologist read the results and that the only thing seen were benign cysts on my liver.

It’s been two months since I started Yaz and I absolutely hate it.  Since I started it I have way less energy, muscle weakness in my legs, worsening asthma, constant spotting, hot flashes, increased sweating, chills, pain in my hands and more visible veins. I joined this group on Facebook that is absolutely amazing and is run by a nurse who also has endometriosis.  That page has so much valuable information and research- along with a list of doctors worldwide who are trained and knowledgeable about endometriosis and have had countless excellent patient outcomes. From this list, I was able to find a group in Atlanta (who is out of network with all insurance, therefore very $$$) and several doctors in Florida.  I went to our insurance website and looked up any doctors that I think were feasible for me to travel to and to see if they took BCBS. I found a list of three doctors in Florida who were in network with BCBS. It just so happened that I was going to Daytona Beach in July to meet up with my family, so my hope was that one of the doctors in Orlando would be able to see me for an appointment that week.  All the stars aligned and I saw an amazing doctor in Orlando, my first day of vacation before meeting up with my family.

First of all this doctor is hispanic (yay supporting minorities) and a woman, which really made me happy and more comfortable.  She was really warm, listened to my symptoms, validated weird things happening with my body, and indicated that she thought the MRI was incorrectly read based on her exam.  She let me know that she was going to have her radiologist review my images and also she would be calling me to set up surgery. This past Monday I got the call that my surgery is scheduled for 08/01 and that the radiology did see that my right ovary is fused to something, which could be my appendix. I might have to have my right ovary and my appendix removed along with any lesions (of endo) that she finds when she opens me up.  

A lot of things are unknown, which drives me bonkers and heightens my anxiety.  We won’t really know how my body is affected until she goes in and has a look. That means she will have  several doctors on call during my surgery in case my bowels, appendix, and other organs are affected. She did assure me I would not wake up with a colostomy bag, which I appreciate and didn’t even know was a scenario that could happen!  My recovery time is unknown because of not knowing how invasive the surgery will be. We have booked an Airbnb for a little over a week with the assumption that I will be able to get back to Atlanta then. I am trying to tell myself that the money we are spending is worth it for me not to be one of those patients with 28 surgeries and the money we are spending going to Orlando is a lot cheaper than seeing a doctor who is out of network in Atlanta.

Since my appointment in Orlando, I have been feeling progressively worse.  I don’t know if this is because I know I am close to some relief or that things are just progressing.  I have not been able to drink my decaf coffee in two weeks due to nausea in the morning. I have been craving lemon/lime Gatorade like a mad woman and as of today had some dry heaving (fun!).  My body fluctuates from having hot flashes to chills and I am utterly exhausted each day.

What I have taken from this experience is that it is important to listen to your gut, advocate for yourself (even when it’s uncomfortable), and to seek more than one opinion when having a major procedure.  I have been dismissed, told that my pain is all in my head, denied pain medication because “I should not be in this much pain,” and made to feel like this is just a normal part of womanhood. This has been a frustrating two years and has opened my eyes about the faults of our medical system and how it relates to women.  I will no longer blindly believe someone just because they have credentials after their name. Accepting help does not make me weak and that it is a necessary part of life. I know my body best and I am now able to be an advocate for myself.

by krubesch

The Journey

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.