Eleven Days In

Today is eleven days into my Lupron injection. I went and saw my psychiatrist today for the first time in a few weeks. Knowing what has been going on, the topic of today’s visit was pretty exclusively about how the injection is treating me.

I let her know that emotionally I was feeling pretty regular with major waves of lows. I generally have been myself, but with the occasional PMS-like mood swings that were pretty severe. She decided to medicate accordingly and I’m grateful to have this support during this weird time.

Additionally, today it feels as though I may actually get some version of my period. Previous to getting my treatment, I actually overrode my cycle with my birth control. If it actually does come, it will be my first one in quite a few months, and I’m not looking forward to it at all. The cramps are here in full swing, as well as a major headache (which I rarely get) as well as general exhaustion.

My body temperature regulation has been consistently feverish. I’m often too hot or too cold, either sweating profusely or shivering out of control. I did some googling today and learned that hot AND cold flashes are both symptoms of menopause. I had always heard that hot flashes were, but never the shivering. Glad to know this is a normal side affect!

I realize looking back at my previous posts that I didn’t explain the constant UTI’s that the emergency rooms kept finding. Dr. Tessler assumes that I never actually had a UTI and that the tests were false positives. It’s kind of crazy to realize I was constantly being given antibiotics when I didn’t actually need them.

Additionally, I figure I might as well mention some things that have been helping
me out:

– Working out! My fiancee and I recently joined the gym and we have been going pretty regularly. Being active has been really positive for me. Of course I’m pretty uncomfortable and tired, so I have been really pleased using the sit down elliptical machine. It’s also been cathartic exercising my frustrations out during these weird political times.

– Seeing friends/family. This is probably pretty obvious, but I’ve been feeling isolated if I spend too much time at home.

-Finally, since I have no control over what is happening in my body, I’ve found it very helpful to try and take control over other aspects of my life. Over the weekend I did some major cleaning and getting rid of possessions and it really has helped me feel like I have a say in what can happen in my life. My doctor was really pleased with this and says what I’m doing is a perfect coping mechanism.

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Here is Monday 2/20’s health app results – I didn’t even go to the gym that day!
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Week One

The weekend after my injection, I fully expected that my butt was going to be sore. I’ve had enough flu shots and vaccines in my shoulder to know how awful that feels the next day. To my surprise, my bum was barely tender and I carried on and had a comfortable, quiet weekend without any issue.

Monday morning, it began. After my fiancee left the bed, around 5:30 am, and before my alarm woke me up, around 7:30, I started profusely sweating in my sleep. In my dream I even said in conversation, “is this a hot flash?” and woke up in a pool of sweat.

To be honest, I was surprised that it hit me so soon. For the rest of Monday, I had general warmness and slight irritability. The irritability is hard to blame on Lupron though, as I was nearly a week off of birth control at this point, and was experiencing cramping as if I was menstruating.

Tuesday was similar. Again I was dealing with major sleep sweating, but it escalated to an almost fever like sensation. Instead of simply having hot flashes, I was also having cold flashes! This isn’t something I was prepared for at all, and it has been very difficult figuring out and maintaining the proper middle ground between the two.

Wednesday was the absolute worst. All day I was going between being super sweaty hot, and shivering cold. Through out the entire day, my skin was crawling (I can only describe it as being clammy and prickly at the same time – I shudder thinking about it now!) and was uncomfortable all day.

Thursday was a temperature improvement, and it generally maintained that way on Friday as well.

All week though, I experienced crazy cramping as though I was menstruating super heavy, although I never once had any sort of bleeding. Right now it is Sunday evening, and I have been off of my birth control (and it was the end of my cycle) for ten days. For the first few days, I wore a pad just to be safe, but I’m now at the point where I don’t expect to actually bleed.

This weekend, I was particularly emotional and crazy. I feel terrible for my fiancee. I was pretty intensely rude to him on a few occasions, and have had to apologize again and again for my behavior. Luckily he is putting up with me and knows that I am going through this for our future together – although I’m certain he doesn’t enjoy me as much as he typically does.

This may be potentially TMI, but I was under the impression that I wasn’t going to have any sexual desire and have been surprised to find myself more interested than I have been in a while. I would say that my libido has been on the low side recently due to my pelvic pain, but I am shocked that if anything, it has improved. I only mention this because I want other women who may be going through this to know that they may not be as uninterested as you may imagine a woman going through menopause to be.

On Tuesday, I am seeing my psychiatrist who is also going to be acting as a temporary therapist to me during this adventure. I expect I will write an update afterward to remind myself of where I’m at post my first therapeutic experience.

Injection Day

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Three weeks after I met with Dr. Tessler, my Lupron injection was finally delivered to the doctor’s office.

I went in on a Friday afternoon, half an hour before the office closed. Dr. Tessler’s assistant, Hirotomi, met me with the gigantic injection. She told me she would be administering it into my butt cheek and that it shouldn’t hurt too much. We talked a bit about the side affects (typical menopausal issues) and what to expect going forward. I hadn’t been on birth control in a few days at this point, and asked Hirotomi if she thought I would wind up with my period since I was experiencing major cramping. She expected that I would get my period and that it may be really difficult, but that for the next two months I wouldn’t get it at all, or would otherwise spot just a bit.

After talking some more I also learned that Lupron is technically a chemo therapy treatment. While I don’t have cancer, I do have an estrogen fed tumor, and Lupron treats both cancerous and non cancerous versions. I asked if I would have typical chemo side affects and she assured me that I would not. I pulled down my pants and she went for it. Shockingly, receiving an injection in your butt cheek actually isn’t very painful at all. I told Hirotomi she did a great job and was on my way.

I immediately went to the pharmacy to pick up my progesterone prescription. I was told that I was to take the progesterone around the same time every day, and decided I would do it at night, when I took my typical prescription. The pharmacist let me know to stop taking my Alta Vera (which I already knew, taking birth control would be the opposite of what we were trying to accomplish) and explained to me that progesterone is part of the recipe for most birth control pills. This was news to me, and I was really interested that basically my treatment was only cutting out estrogen, not all hormones as I originally thought.

I decided that I would go to the gym following the pharmacy since my butt wasn’t yet sore, and I figured it would be a good idea to do it as I felt well, since I expected to be in pain the following day.

I did a full workout and went home with my fiancee feeling generally decent. By the end of the evening my butt was slightly sore, but I could hardly complain. I was definitely surprised and prepared for the worst the following day.

Meeting Dr. Tessler!

As a gynecologist, I’ve found that there’s no better feeling than when I know I’ve improved someone’s life through medicine. I love when a patient returns to the office after a visit or surgery and tells me she’s feeling so much better or that I’ve helped to fix a problem.
– Dr. Ruth Tessler

On Monday 1/23, the first working day after my NYU Langone emergency room visit, I received a call first thing in the morning from their patient concierge. When I received that call, I was overcome with appreciation. I knew I was being taken care of and was so incredibly grateful.

The woman on the other end of the phone told me that she was going to spend some time talking to NYU Langone Kips Bay Gynecology to find out who would be able to see me soonest. Within two hours of this initial call, the concierge called me back to see if I was available the next morning to meet with Dr. Ruth Tessler. Upon reading her write up, I was in love. I was so pleased with how authentic she felt, and was overwhelmed that I was able to see someone so good, so quickly.

On Tuesday morning, my fiancee joined me at my first official specialist appointment. We were seen right away, and brought directly into Dr. Tessler’s office to discuss treatment options. She was obviously already very familiar with my background, and was ready to discuss the two courses we could take.

Dr. Tessler said that I could a.) have surgery, which wasn’t ideal, or b.) receive a Lupron injection, to put my body into a temporary menopause which should shrink my tumor.

I was honestly interested in having surgery because I regretted so much not having the fibroid removed back in 2015, but as my fiancee and I talked about our desire to conceive in the not too distant future, we decided that it was much safer to go the Lupron route.

Basically, if I were to have surgery, I would need to take 2-4 weeks off from all work to recover. Financially this wasn’t an option for me, and I knew that if I did choose this, I would absolutely have to take that time to heal since my fertility would be in jeopardy. Dr. Tessler believed that there shouldn’t be complications, but admitted that scar tissue is always a possibility.

Instead, we decided to go the Lupron route. Dr. Tessler explained that she would give me a three month injection of Lupron, an estrogen blocker, to put my body into a temporary menopause. The idea behind it was that assuming my pelvic pain was being caused by my fibroid, as well as the possibility of adenomyosis, this estrogen blocker would stop feeding these issues. She told us that she would prescribe me progesterone, which would help minimize the side affects of menopause. The best part was that this option would leave whatever level of fertility I have in tact, and that my hormone levels would repair themselves in time after the Lupron wore off.

My finacee and I left the office feeling positive regarding my pelvis for the first time in weeks. We really felt confident in our decision and having Dr. Tessler as my health care provider. The insurance was processing the order for Lupron and I would hear back from the office once it was approved. We were relieved and ready for the next step.

 

The Inauguration Day Ordeal.

As I mentioned in my last post, the first specialist appointment I was able to secure was for January 20th 2017, which was the day that DJT was inaugurated as our 45th president.

As it was, my fiancee was scheduled to be out of town on business for this appointment, so my awesome mom, who lives two hours away, came down to NYC to stay with me and attend my appointment with me.

On Thursday, the evening before, we made a party out of it. My amazing sister, who is local, joined my mom and I and we had a nice dinner out in my neighborhood, then settled in to my apartment for the evening.

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Here’s my mom and sister cuddling with my dog the night before my appointment.

 

For the entire week, I had been alone with just my dog in the apartment since my partner was away, so it was really wonderful to have some company. My nerves were super high with tension from the upcoming appointment, as well as the inauguration. I had been in substantial pain and was so eager to finally see a specialist.

At this point, I had already gone back to my local emergency room once more since my last entry. I was in excruciating pain one day and was honestly worried that my uterus was somehow getting worse. At the hospital that day, the doctor diagnosed me with another UTI and sent me home with some Tramadol as well as another antibiotic. This was days before Christmas, and I didn’t even get a bed at the emergency room. It was a horrible experience and I truly felt like I was ignored by hospital staff. I was drained and completely ready for my inauguration day specialist appointment to finally happen.

On the morning of 1/20, I decided to wear my Nasty Woman shirt (as I did to Planned Parenthood last time) to a.) protest the inauguration in my own way and b.) celebrate the fact that I was finally seeing a specialist to take control of my pelvic health.

My mother accompanied me to the appointment. When I walked in, I first noticed that the inauguration was playing in the waiting room. This riled me up a little on the inside as I had promised myself I wouldn’t consume it, but quickly walked over to the receptionist to check in and hopefully get seen as soon as I could.

Low and behold, the woman at the counter informed me that the doctor did not accept my insurance and that I wouldn’t be able to be seen. I was in complete shock. I literally had been calling the office weekly to see if I could get seen quicker, and had gone over my insurance multiple times. To be let down when I was so incredibly eager was one of the most frustrating moments I’ve ever dealt with. My mother even offered to pay out of pocket since we were all looking forward to seeing the doctor, but they refused since I am otherwise insured. Even now I don’t understand where the miscommunication was, but suffice to say I left the office hysterically crying.

My mom and I went out to the car where I tried to plan my next move. I decided at this point that I was done with this particular hospital – it was the same one that I had visited the ER twice (both of which were negative experiences) and then to be refused service – I was done. We called my father, who has medical world connections, and he advised us to go to the NYU Langone emergency room, as he had coworkers associated with them, and heard great things. That’s when I realized that my appointment with the other specialist – the one who couldn’t see me until March – was an NYU Langone doctor. I decided that we would go to that ER.

At NYU Langone, I was immediately admitted and brought into a wonderful emergency facility. I was greeted by two doctors and two nurses, all of which informed me they would do whatever they needed for me. This ER facility doesn’t have an actual hospital attached – the main branches of the hospital are in Manhattan, and this was simply an emergency room. I learned that if I needed to be admitted, they would ambulette me to the proper hospital.

I explained my situation to the doctors, I let them know that I had been in constant pain for months at this point and that I kept having negative experiences at the other hospital. Right away they began testing on me, and decided I had another UTI.

Next they brought me for another internal ultrasound. At first I planned to go in without my mother, since it’s an invasive procedure, but when I went in, I saw that the technician was a very large, bouncer-esque guy, and I was nervous so I called my mom in to hold my hand. To my surprise, this technician was super gentle and didn’t put me in any additional pain! It was as pleasant of an experience an internal ultrasound could possibly be.

Finally, I was discharged after a few hours at the facility. They basically decided that I needed to see one of their specialists right away, and set me up with a patient concierge to find me the next available obgyn specialist for the coming days. That alone was worth the whole ordeal as I finally felt like I was being taken care of, and that my health mattered.

That night, my mom stayed over one more night since we had such a long day. I decided not to pick up my UTI antibiotic because I had a weird feeling about it. Otherwise, I went to bed that night feeling positive and ready to partake in the Women’s March NYC the following afternoon.

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Here I am, the afternoon following my crazy inauguration day ordeal, holding my sign at the Women’s March in NYC. 

 

The Backstory.

img_1085I apologize in advance, this is kind of a long winded explanation that brings me to where I am now. My pelvic pain story spans many years, with varying levels of discomfort. If you make it through this, I promise the next entries won’t be so meandering.

Nearly five years ago, I went to my local emergency room with intense pelvic pain. At the time, I was not on my period, and only had major pain (mostly in the form of cramps, with the occasional ovarian cyst) right before and during my period. I remember going to see my primary care doctor who told me that he had no idea what was going on, and that I needed to go to the ER.

I called my boyfriend (now fiancee) who met me at the hospital. He was there with me when I had my first internal ultrasound, which right then and there was absolute torture. I remember crying and yelling in the private little room, feeling immense pressure and pain as I was prodded with the internal wand. The OBGYN said, “that’s it!” and that was the moment I learned I had a growing fibroid. Before this moment in time, I had never heard about fibroids, and cried, asking the doctor to remove it, having no knowledge of the condition. When he told me that it wasn’t something they would be removing, and that it was only the size of a grape, I remember feeling so frustrated. I didn’t care how insignificant the size of it was – it was hurting me, enough to visit the emergency room – and I did not want it in me.

Of course nothing happened that day of significance. I was sent home with a mild pain killer and was recommended to find a doctor who had experience with fibroids. Being in New York City, I was able to easily find an OBGYN with my insurance at the time who had experience with fibroid removal.

I visited Dr. Zhanna Fridel within a month of my ER episode. She was such a lovely doctor who truly cared about my reproductive health. Instead of opting to remove the fibroid, Dr. Fridel put me on a birth control regimen of overriding my periods and had yearly ultrasounds to check on the progress of it’s growth. This was fine for a while, until I became a freelance photographer, and lost access to insurance that Dr. Fridel accepted. For two years my primary care doctor refilled my birth control and my yearly ultrasounds never happened.

Fast forward to fall 2015. I have gall bladder surgery after learning my gall bladder is enlarged and infected. Deciding to kill two birds with one stone, I requested an OBGYN to be present during my laparoscopic surgery to peek around in my pelvis. Dr. Fridel had always assumed that I had endometriosis in conjunction with my fibroid, so I figured we might as well take the opportunity to take care of any lesions that may be present.

Before my surgery, the resident OBGYN asked me if I would like to have my fibroid removed if they deemed it safe. I decided not to give permission for this to happen as I feared that cutting into my uterus would affect my chances of fertility in the future. When I awoke in the recovery room, the OBGYN was there to update me. She said they did not find endometriosis implantations, but that she suspected I had adenomyosis in my muscles. She also informed me that if I had signed off on it, she easily could have removed my fibroid right then and there with likely no repercussions. At that moment I didn’t really care that I hadn’t had it removed as I figured it was better to be safe than sorry.

Then, around Thanksgiving 2016, I started having intense pelvic pain. Not having an OBGYN, I decided to go to Planned Parenthood for my annual exam. I let my provider know my pelvic history and asked them what they thought I was experiencing. I was feeling the urge to pee all the time, even if it was small amounts of water in me. My pelvis had so much pressure and often times crazy throbbing sensations. My PP provider had me get ultrasounds.

At the ultrasound appointment, I was asking the technician what she was seeing. Of course she was weary to say anything since she isn’t a doctor. I asked her if I had any ovarian cysts, and she said I had one small one on my left ovary. I pestered her to see if I had anything on my right side, as that had been my most intense area of tenderness at that time. She commented on my fibroid but said there was nothing she could see on the right side that should be causing me pain. I left that appointment feeling terribly depressed and in tremendous pain from all of the pressure of the internal wand, and the external sonogram.

After the ultrasound appointment, I took the subway back to my neighborhood. When I got off the train, I was feeling sick from pain and discomfort, which was radiating on my right side. I decided to be safe, I should go to CityMD (our local urgent care) to see if they had any feelings about what I was going through. At CityMD, the physician was very concerned that the location of my pain could be appendix related, so he rushed me to the ER.

At my local ER (the same one where I was originally diagnosed with the fibroid years before) I received a CAT scan and IV drips of pain medication. I was in so much pain (likely from all of the pressure from the ultrasound earlier in the day) and beginning to get concerned. Luckily, the CAT scan came back negative and I was released. The ER doctor decided I had a UTI and was constipated (which I knew wasn’t true, as I have no issues in that department) and I went home frustrated, but relieved to know my appendix wasn’t messed up.

A few days after my ultrasound and ER day, I received a call from my Planned Parenthood provider. She left me a voicemail insisting I call her back immediately, so of course I got in contact with her as soon as I could. It was then that she let me know that my uterus was greatly enlarged, my fibroid had grown tremendously (went from being the size of a grape to the size of a clementine) and my left ovary was also enlarged. She said that all of my pelvic organs had shifted to accommodate my situation, and that I needed to find a specialist right away.

It was at this point that I had my first breakdown. All alone, I began to cry. At this moment, I decided that mentally I needed to expect the worse in regards to my fertility, and to put my health and well being as my number one concern. I shared the news with my fiancee, who was amazingly supportive. I let my friends and family know, and started looking for a specialist.

I asked my neighbor, who also works at Planned Parenthood, if she had any suggestions for an OBGYN specialist. She immediately suggested a woman associated with NYU Langone. I was able to book an appointment with her – but wasn’t able to be seen until early March. Me, making this appointment in mid December was gutted. I knew I wanted to see this doctor, but was crushed I would have to wait so long.

I kept investigating and found that the doctor who originally diagnosed my fibroid back in the emergency room years before was practicing locally and accepted my insurance. I was able to make an appointment for 1/20/17 – inauguration day – and booked that right away, keeping the NYU Langone doctor as a second option…