Posted in A Feminine Healthcare Journey

A Feminine Healthcare Journey-Resolution.

Yesterday, Tuesday, March 29, 2022, I finally had my long awaited surgery- A laparoscopy with incisions to remove my uterine cysts as well as taking a look inside my uterus to see what else was going on causing the pain and bleeding for so long.

In my last post, I mentioned prior to the surgery a blood test referred to CA125 test the standard range is <49 U/mL, my level was a reading of 102 U/mL. I messaged my doctor Monday morning to get some further answers regarding my high reading. My doctor got back with me right away and told me and explained that a level of 200 or 300 would be more related to ovarian cancer and my level of 102 was a high indication of the suspected endometriosis, which helped me breathe a little better, thankfully!

My procedure went well-my husband was told by my physician that I am in fact riddled with severe endometriosis, and lot was cut and burned out. My Fallopian tubes are very inflamed and there is an extremely low chance, well no chance, of ever having children. Both cysts were drained and sealed, so they will be unable to refill with debris or fluid. The left ovarian cyst was actually fused to my bladder, in which the doctor had to reconstruct part of my bladder wall due to the damage caused by the cyst.

I will be starting hormone blockers for six months which will be injections, 1 shot per month, so the endometriosis will subside from growing.

Today, I am very sore, in my abdomen as well as my throat as I was intubated, but other than that I am doing well.

I hope that in the future I have nothing but great updates to provide in my journey as I am now, hopefully, on the mend.

I do have a little gallery with two photos of my incisions, so please proceed with caution if you have a weak stomach for this type of imagery!

It’s honestly, not bad I promise!

Proceed With Caution

Thank you for your support, your stories of your own experiences, and I would also like to give a big fat shout out to my family, friends, and of course my husband, Sean, who have helped me though this journey. Without any of you, I don’t know where I would be. I love you all dearly.

Dedicated to:

Mommy

Aunt Shell

Chelsea

Laida

Chloe

Keri

Kellee

Aunt Ellen

Gramma

Meghan

Brenda

And of course my husband Sean

If you would like to have a cheeky little read on how we got to this point, please refer back to parts one and two of my Feminine Health Care Journey, linked below:

Please Help Me A Feminine Health Care Journey

Please Help Me A Feminine Health Care Journey Update

Posted in A Feminine Healthcare Journey

Please Help Me. A Feminine Healthcare Journey: Update

We last left off on March 4, 2022, when I shared with you my current struggles with my cycle, constant menstruation, and excruciating pain. I had just found out the magnitude of the problem I was dealing with-cysts on both my right and left ovaries, which are quite large:

Right ovarian cyst- debris filled measuring 3.8 X 3.5 X 3.6 CM

Left ovarian cyst- debris filled measuring 7.2 X 5.1 X 6.3 CM

When I had initially written my first post it was a Friday evening and by Sunday afternoon I was taken to the emergency room due to excruciating pain and heavy bleeding.

In between my ultrasound results and going to the emergency room, there was a night my husband and I decided to hit the road and get out of the house for a bit. I remember the pain in my left side was absolutely becoming unbearable during the car ride and after hitting two stores I was in such terrible pain I was sweating, weak, and could literally feel the heat radiating off my body.

I came home, took a hot bath and a few Motrin, got into some comfy PJs and laid with my heating pad until I fell asleep.

The next day I was still in so much pain. At this point I had been bleeding since exactly January 15th, and it felt like my period had just started, ladies you know how those first few days are… It was like I was living in a repeating cycle of starting my cycle over and over again, every few days.

I don’t know if being aware that the cysts were there at this point was causing more stress to my body, causing me more pain, but by Sunday when I tried my old hot bath to heating of trick didn’t help, I knew I was in some deep sh*t. I called my husband from my phone whilst in the bathtub and told him, “I think we need to go to the ER.” I cleaned myself up, got dressed, into the car and closed my eyes for the ride up the street to the hospital- I could hardly breathe and couldn’t stop shaking.

Let me just give you the low down of my ER visit, which I am absolutely f*cking disgusted by…

When we arrived, I was taken back pretty quickly and put into an actual room, which I assume was due to the nature of my visit and or problems.

I was so disoriented due to the pain-one nurse on the left taking my blood pressure and one nurse on my right inserting an IV, while some woman with a rolling computer cart was asking me a million questions that I could literally not even find a breath to take to answer them.

Computer Lady: “First day of your last period.”

Me: “Umm, I don’t know, I’ve been bleeding since January…”

Computer Lady: “I NEED A DATE- beginning, middle, or end?!”

Me: “Middle…”

Phlebotomist: “Any prior hospitalization?”

Me: “No…”

Phlebotomist: “ARE YOU SURE?!?!”

Me: “Yes.”

Phlebotomist: “Well why do you have tape on your arm, it looks like you had an IV in.” (Running her fingers over the sticky remnants from a bandage on my arm)

Me: “I had blood work done Tuesday, here, upstairs… it’s…it’s in my chart…”

Phlebotomist: “Well it looks like you had an IV in…”

Me: “Where is my husband? Can he please come back now?”

Phlebotomist: “We don’t know if you have COVID. Doctor will be in shortly.” (Closes door and leaves me by myself)

Luckily, my husband was able to come back to my room, not without some backlash from the front desk.

The doctor ordered some more blood work, a urine sample, as well as another vaginal ultrasound.

A smiling woman came back and helped me into a wheelchair and wheeled me into the bowels of the hospital for my ultrasound.

Ultrasound Technician: “Are you bleeding a lot?”

Me: “I guess…”

Ultrasound Technician: “Are you going to bleed on my floor”

Me: “I don’t know…”

Ultrasound Technician: “I’ll put a pad down just in case…”

Now, why wouldn’t you do that anyway, knowing why I am here? I’ll never know. All I can say was I felt more than a tad bit humiliated.

I could tell she was getting some good images as the ultrasound took more than an hour. I was uncomfortable, but I was grateful-the more images she took, the better chance I had at getting help with my problems, I thought to myself.

When she was finished she gave me a huge sanitary napkin the size of a diaper and wheeled me furiously back to my room where my husband awaited my arrival.

The doctor came back about an hour or so later and regurgitated everything I already knew, and added in some new factoids-my right cyst had ruptured, and my blood levels looked slightly better that day than they did four days prior.

She then informed me she would need to do a pelvic exam. Now, I was expecting the regular pelvic exam with stirrups and a gynecological exam bed. I was so f*cking wrong.

A medical assistant came in and told me to take my underwear off-

Me: “But I have a pad on…”

Medical Assistant: “It’s fine just take them off.”

The medical assistant then proceeded to give me a bedpan, told me to put my pelvis on top of it and that’s how the doctor was going to do my pelvic exam. WTF I thought…

The doctor proceeds to come in and actually flip the bedpan over position my lower half on top of it and do the f*cking pelvic exam-all whilst my husband is watching-horrified.

The doctor then tells me to put my underwear back on, informs me I would be getting some kind of pain shot in my IV and to follow up with my gynecologist as I was going to be discharged.

After six hours I was finally discharged home and I already had a follow-up appointment with my NEW OBGYN for that Thursday afternoon. If I could just make it to Thursday I will finally have some kind of answers, I kept thinking to myself, holding on to my hope that I would soon get some relief.

Thursday morning came, and I was in absolute excruciating pain. I had punched in for work at 7 am, and by 8:30 I was crumpled up into a ball on the futon in my home office. I had sent a message to the CNP I had seen who ordered the original ultrasound I had in February and I received a call almost immediately from the doctor’s office “NEW DOCTOR” was out with a bad back that day and either I could reschedule my appointment or see ANOTHER CNP at a different location at 9:30 that morning. Furthermore, I knew the CNP couldn’t do sh*t for me, but opted to see her and try and get some relief. I called my boss to let her know what was going on, and next my mom to ask her if she could take me to my appointment.

So, I arrive at the office and of course the CNP couldn’t do or tell me sh*t. She did tell me my constant bleeding was NOT due to my large ovarian cysts, and prescribed me Camrese birth control pills to hopefully calm my ovaries down and stop the bleeding. She gave me 48 hours off of work to rest and hope the birth control kicked in. I should probably mention that during this visit the power went out in the office three times and my prescription as well as my doctor’s note for work all had to be handwritten- I wasn’t even able to schedule a follow-up appointment with my doctor/surgeon because, obviously, the power was out.

Thankfully, the pharmacy was on the way home for my mom, and she dropped it off for me after taking me home. But of course, there was a snag. The pharmacy did not carry this birth control and had to order it- so I was unable to start the pack that day-just my f*cking luck, I thought.

I slept that whole entire rest of the day, with my handy heating pad laying right on my sore little tummy.

The next morning, I decided I was sick of sleeping and got up and started blogging. The pharmacy finally called me that afternoon to inform me that my prescription was filled, and I could pick it up any time. Sick of being a shut in for weeks on end, I decided I was going to go pick it up myself. I also made a very bad decision to go to the Family Dollar next door to the pharmacy and pick up some household needs first. During my brief shopping venture the pain started again, I was so weak and unsteady, I even called my husband to tell him to be on standby in case something happened while I was out.

By the time I made it to the pharmacy, I thought I was going to pass out. Again, I was sweating, and I could feel the heat radiating off my body as my legs shook while I waited in line. Of course, an elderly woman was in front of me checking out her items as well as picking up her prescriptions and then had the audacity to ask for her COVID booster shot! I’m IN PAIN BACK HERE, LADY!!! *Please know I am jokingly saying this, and I am well aware that the world does not revolve around me- good job for getting your booster ma’am!*

That whole weekend, I felt like total sh*t. I was so fatigued, weak and nauseated, I could hardly get out of bed. I messaged the CNP I had seen, who prescribed the birth control, and didn’t hear back from her until two days later, and I quote:

“Hello Amanda,

Are you following the direction of (insert name) CNP which includes: Camrese to take two tablets for 3 days then to take on by mouth daily and not stop until she finishes the birth control pack.

If you have been using as directed, please allow up to 3 months for your body to adjust. Monitor your symptoms and address your concerns with Dr. (insert name here) on 3/19/22. Please proceed to ER if pelvic pain or bleeding becomes severe. I hope this helps, please contact our office if anything else is needed.”

No, as a matter of fact that didn’t help, and I did not even bother to answer back. Of course, I was taking the pills as instructed, why wouldn’t I? I just wanted all of this to stop, so I could get a moment of relief in my life after bleeding, cramping, and excruciating pain since January 15th.

Saturday, March 19th, after over a month since I had seen the CNP who originally ordered the blood work and ultrasounds, I FINALLY was able to meet my NEW OBGYN. I was so happy!

We discussed the ultrasound findings, and I was given two options-either wait out the three months for the birth control to maybe solve the problem or have a laparoscopy- I chose the laparoscopy.

I explained to my doctor that years ago an OBGYN I was seeing suspected that I had endometriosis- if you have been following, this was the same doctor who told me at 23 I needed to start a family as soon as possible… At that time I actually had scheduled a laparoscopic procedure, however, I cancelled as I had just landed my first job in my career field and I didn’t want to take the time off. Looking back now, it was such a stupid decision, however, hindsight is always 20/20.

With that information, my OBGYN agreed that it would be best to proceed with scheduling the laparoscopy to check out what is going on inside my uterus and ovaries and to drain and remove the cysts. He also stated that perhaps if I do indeed have endometriosis that the cysts could be endometrial cysts and in that case they would never go away, even while on the birth control.

I could have cried that day, I was so relieved that I finally was validated, that I was getting answers, and finally I would be getting the help I have needed for so long. If given the opportunity, I would have checked myself into the hospital that day and had the procedure.

Currently, we are at a good place. My surgery is scheduled for Tuesday, March 29th, the only thing I have left to do is more blood work-The CA-125 which will check for ovarian cancer. My doctor feels pretty confident that it is in fact not ovarian cancer, but he still would like to know what my baseline is prior to going in for the procedure.

So that concludes part two of this painful, epic journey. Everyone, if you could say a little prayer or send me some good vibes and or advice if you have had a laparoscopic procedure such as the one I am having, I would truly appreciate it.

Hopefully, part three will be an even better chapter in my story, with lots of healing and less pain!

Posted in A Feminine Healthcare Journey

Please Help Me. A Feminine Healthcare Journey

Is it just me, or is it f*cking ridiculously hard to find a good OBGYN?

I really don’t even know where to begin this post, so if it seems disjointed, please excuse me. I felt the need to sit down and write what I am going through, currently, because I am pretty sure a lot of females can relate to what I have to say.

I have been seeing the same OBGYN since 2015- prior to this doctor, I had seen roughly six other OBGYNs, male and female, and I never felt like I was given the proper care or felt as though I had a good doctor/patient relationship with them. Everything was always so routine, breast exam, pap smear, pelvic exam, thrown a prescription for birth control pills and off they went on to their next patient, probably billing my insurance for the highest complexity office visit they could, without giving me a chance to even speak.

A doctor I had seen for approximately two years, in 2012, when I was 23 years old, informed me that I should consider starting a family right away if I planned on having children because I told him I was having heavy periods even though I was on birth control. He had no basis for telling me to start a family, no blood work had been done, no imaging or ultrasound, not one damn thing and went straight into you have endometriosis, and now I want to cut you open to check things out. I never went back.

After that jarring experience, I decided maybe I should find a female doctor instead, change up the pace, see if I feel validated in any way without someone jumping the gun on me, someone who could really give me a proper diagnosis- and I did! However, the next year when I went to schedule my yearly exam, she had left the practice. F*CK!

So that is how I wound up with…Doctor…X, thats what we will refer to him as for the rest of this rant.

Now, at first, Dr. X was lovely, he was kind, caring, made me feel extremely comfortable, and I never had the anxiety I previously had with other doctors when I had to go see them. However, there was a disconnect from the jump now that I am reflecting on our interactions. I would explain to him every single time I went that my cycle was extremely heavy, that I was having a lot of clotting, terrible swelling and pain during my time of the month, and he would throw a new birth control at me and that would be the end of the discussion. A pattern started to develop in which, about four to six months in to the new birth control, I would tell him the same sh*t is happening, or now I’m bleeding even worse, my swelling has gotten worse, my cramps have gotten worse, and then I would be put on yet another new birth control pill.

Then came the years of the IUD pushing. For at least the past three years, this doctor would push me so hard to get an IUD every single visit. And every single visit I said “NO.” I didn’t want the Depo shot, I didn’t want the IUD and I didn’t want the hormone eluting arm stent, I didn’t want to f*ck with ANY OF THAT because I have heard nothing but terrible things. ALSO, I know my body well enough to think hey if the f*cking pills aren’t working, I don’t want to be committed to having a f*cking foreign object in my body that I now have to have a procedure to remove. If we can’t get the pills right, I sure as hell am not doing any kind of implant.

Let’s cut to December 2019- I had just found out a month prior that I am living with only one functioning kidney and probably have been for a few years (that’s another story for another time). I had been undergoing a slew of testing to see if my dead kidney had any function at all, and during a procedure where I had to be put under, my urologist had asked my mother, who took me to the hospital for the testing, if I planned on having children or if I had tried to have any children, my mom said she wasn’t sure and my urologist in so many words pretty much told her my uterus looked trashed. He had identified a cyst on my left ovary and was concerned and told her to make sure that I followed up with my OBGYN with the incidental findings.

So, I did as instructed, and Dr. X was irate to say the least. It still boggles me to this day why he was so offended and angry that another doctor had found something, incidentally, that concerned him and wanted to make sure that I got it checked out.

Reluctantly, he ordered a pelvic ultrasound which was performed, and he sent me a message in my patient portal with my results saying that the cyst was small, and on the opposite side of where the urologist told me- no need to follow up.

I figured I was in the clear, he told me not to worry about it, so I didn’t.

Off and on during the next two years I would suffer from heavy cycles, spotting, and abnormally long periods. Each month, things seemed to get progressively worse. I was swelling beyond belief in my abdomen, I was having very strange tissue coming out during my menses, to the point of questioning if I had possibly miscarried, I could no longer use tampons due to the pain and discomfort, I couldn’t expel urine, and overall, it felt like all of my organs were smashing up together inside my body.

My husband and I were married on October 15, 2021, and I bled from October 11, 2021 until November 2, 2021, throughout my wedding, my entire honeymoon, I had never had a cycle last so long or be so painful and heavy in my entire life at that point. It literally made the honeymoon miserable. I could hardly get out of bed, I had to go purchase a heating pad, I bled through the bedding of both hotels I stayed at, which has never happened to me in my life and I ended up having to basically buy pads the size of diapers. I was absolutely, f*cking mortified.

Here I am, a newlywed, on her honeymoon with her husband, and I am having to go and buy different size pads, tampons, and heating pads on a daily basis because I could not get my period under control. Halfway through the honeymoon I threw out my birth control and said f*ck it, this is the problem, and I don’t want to do this anymore.

However, the problem didn’t stop and started to become out of control like never before.

In February, we took a trip to New York, by the time I had gotten there I had been bleeding for two weeks. My cycle had started with light spotting and I thought, cool, my period will be normal, and I won’t have it for my trip. Progressively, my period got heavier and heavier, and by this point I was pretty much used to my abnormal cycles and decided to just deal with it like I always had. However, things got very bad very quickly.

I could no longer urinate, I did not make not even one bowel movement while on the trip, my whole abdomen was so swollen I could hardly bend over, I had to start taking diuretics to get the swelling down, and by the last day I was in so much pain I was almost 100% positive I would not be able to make it on the flight home. Luckily, after multiple doses of ibuprofen, some hot tea and rest, the pain finally subsided enough, and I was able to make the flight home.

At this point, I had finally come to terms with the fact that something is seriously wrong and everything that I am experiencing cannot be normal. My cycle wasn’t only f*cking with my body, it was also f*cking with my head too. My mental state started to deteriorate very quickly, I don’t know if it is the surge in hormones, the excessive bleeding, or what, but there was an awful shift in my mental state and everyone could clearly see it. My work called me out on it, my husband told me things that transpired that I could not even remember, and it sent me spiraling. It was beyond time to call my doctor.

In an amazing twist of events that worked out in my favor, Dr. X was booked up, and I was scheduled with a female nurse practitioner within the same practice. I held nothing back when I told her everything I was experiencing, and she validated my every symptom, she listened to me, she told me “no this does not sound right at all this should not be happening to you”. For once, everything I had told a practitioner was properly handled, and I felt so good.

I told her my feelings about Dr. X and how every visit I would tell him about the abnormal bleeding, and that he would always throw birth control at me or suggest IUD’s and never once upon viewing of my medical chart had he ever made one remark about my heavy cycles or abnormal bleeding.

She ordered for me to have a pelvic ultrasound as well as some blood work done, to check my thyroid and do a CBC to make sure all bases were covered, and asked if I would be comfortable considering seeing another doctor within the practice. Without a shadow of a doubt I said yes, I think that is the best thing for me. That day, I walked out with an appointment with a new doctor as well as an order for a pelvic ultrasound, and I had a feeling in my heart that I would finally have answers.

Yesterday, I was able to view my ultrasound results, and I am absolutely shook.

Not only do I have an abnormally thick uterus and a cyst on my cervix, I also have a debris filled cyst just a tiny bit bigger than a tennis ball on my left ovary and a debris filled cyst half the size of a tennis ball on my right ovary.

This morning, I called to move my appointment scheduled for March 23 to this Thursday, March 10.

I don’t know what the outcome will be, I pray it is good. I pray that I will finally be able to get help and relief from the constant pain I am in, and I won’t have to suffer like this anymore.

It is absolutely maddening, when you are constantly cramping before, during and after your cycle, and maybe only have a week when you aren’t bleeding and your hormones aren’t raging. Right now, my hormones are so out of wack, my hair is greasy despite just being washed, my face is broken out, my skin looks absolutely horrible, I feel terrible…

Overall, I am really scared. I feel like my body is even more of a ticking time bomb knowing I have these cysts, and I can feel my abdomen is so swollen that I can hardly bend over. My fear is what if one of these cysts ruptures, and I am out somewhere or driving, or home alone, and I pass out and cannot call for help…

Ladies, no matter what, if you feel like something is wrong, get the answers you need. If you need to get a second opinion- do it.

Do not let any doctor make you feel like what you are saying is not validated. You know your body better than anyone.

Always trust your gut instinct and intuition no matter what because you never know what it might cost you if you don’t.