I would like to start off by saying I am extremely grateful to Mommin' + Livin' + Workin' for the opportunity to share my story to try and raise awareness. I know so many women suffer in silence, and to have a platform to share my journey and experiences really means a lot. It is my hope that the subject of female reproductive pain/illness will become less taboo, the more that we share.
My name is Jessa, and I am 1 in 10 women that have Endometriosis and PCOS.
My story is a bit long, so we will break it up into a couple of different posts. I have done my best to provide some insight as to the struggles I have faced throughout my journey. If you do not want to read through all of it, I understand, but there are a few major takeaways I would like to provide up-front:
1) Advocate for yourself, and always bring a buddy. Do not let doctors push you around if you are not getting the answers or attention you deserve. Also, having another person with you at appointment helps to provide a second set of eyes and ears on the situation. When dealing with chronic illness it is important to have a good support system that can help you navigate the information you receive, as a lot of time it can be very overwhelming.
2) If you believe you may have PCOS or Endometriosis, do your research and find a true specialist. Read reviews and participate in forum discussions. For Endometriosis in particular, I recommend a Nook specialist for Endometriosis Excision (which can be found on the Nancy’s Nook Endometriosis Education Facebook page). Endometriosis is a chronic degenerative syndrome that will not alleviate without proper surgical and therapeutic intervention. There is no cure for PCOS or endometriosis, but with proper treatment symptoms can be managed.
The Beginning:
My journey started roughly 6 years ago, as a young woman in my early 20’s. At this time I was looking for a method of birth control that would help with my painful and heavy periods. I had always thought that intense cramping and heavy bleeding was a very normal part of periods, but I have learned that Dysmenorrhea (or pain with periods) definitely is not normal. I was also gaining a lot of weight (like 50lbs in 6 months for no apparent reason), so I was thinking my hormones must be out of whack. My mom has hypothyroidism, so I thought this could be a definite possibility. I talked to my OB about my concerns and she recommended to try out an IUD. She also recommended I start cutting out the creamer in my Dunkin donuts coffee that I was sipping in her office [insert serious eye roll], and work harder to eat better. This was the first time I was fat-shamed by a doctor, and even though I told her I weight lifted/ worked out 5-6 times a week and was very calorie conscious she did not believe me.
I agreed to the IUD, and when it was inserted in December of 2014, I nearly blacked out from the pain. The OB did not seem concerned about my pain, and told me I should be fine in a couple of days. I trusted her. Why wouldn’t I? The thing is, I wasn’t fine in a couple of days; the cramping had persisted, and I was bleeding A LOT. I called her and she referred me to get an ultrasound to make sure that the IUD was in place.
At the ultrasound, a couple weeks later, it showed that the IUD was in place, but they also found a 9X4CM mass on my right ovary. The doctor said I would be fine to keep the IUD, and that they would do another ultrasound in 3 months to see if the mass would resolve itself. Even though she did not seem alarmed, this really freaked me out. There was a mass was inside me, and I had no idea what it was; and ovarian and breast cancer are very prevalent in my family history. Even though it went against my gut urge to press for more tests and information, like a good patient, I waited the 3 months as advised and had another ultrasound.
After 3 months there was no real change, and now there was a 3cm cyst on my left ovary; by this time I had also started experiencing chronic pelvic pain/discomfort. Again, there was no real urgency from the doctor to help me, so I decided to find a new doctor. This was the first time I realized that maybe I was going to need to find better solutions, and not every doctor is a good fit. With a recommendation from my best friend, I ended up going to a group that specialized in women’s reproductive health and issues that had really helped her. This was mid-year 2015.
2015
I worked with this group of doctors for the next 5 years, and was rotated through 4 of the doctors in this practice, each one a little more experienced than the last. The first one was Dr. B, she got me in quickly and showed actual concern/ attention to my situation. She also didn’t blame my weight gain on my coffee creamer, and didn’t automatically assume bad eating habits. We discussed that pain management was the main priority to address, as it had been constant now for a month. We went through multiple options including removal of the IUD, other birth controls, additional imaging, as well as exploratory surgery if pain and/or bleeding persists.
The first step was removing the IUD, and I didn’t hesitate. GOOD RIDDENCE! Once the IUD was removed she put me on a low dose estrogen birth control to see if it will help the cysts to resolve themselves, and help regulate my periods. After a few days the pain was gone, but I was experiencing an excessive amount of bleeding, which apparently is a common symptom of IUD removal. I was told to monitor the bleeding for a month and let her know if there are any major changes, or if I start feeling unwell.
The bleeding did resolve after about 3 weeks, but she requested a follow up ultrasound just to be sure everything was looking ok. From the ultrasound we saw that the 3cm cyst on my left ovary had resolved itself, and the larger cyst on my right had not further grown. She also saw that my left ovary was now presenting as polycystic (covered in lots of very small cysts).
I was happy to hear that some things seemed to be getting better; but I could also see that my body was going through something strange. Flip flopping from one problem to another, and it was overwhelming. Less than a year ago I was super healthy for the most part with no pain, normal weight, and no major cause for alarm. I had also just really started my life. I had just gotten married and moved into a new apartment, and now all of a sudden there is this mass in by body that wont go away, and my ovary is covered in cysts.
She told me that she believes I may have something called PCOS, and she recommended a blood test to confirm my androgen levels. With the blood test it was confirmed that I had elevated androgens (hello weight gain), the imaging had confirmed polycystic ovaries, and I had a history of heavy prolonged periods. I had the trifecta that warranted the diagnosis of PCOS (Polycystic Ovarian Syndrome). Again, It was sort of relieving to finally have some answers, but I also dreaded to be diagnosed with a syndrome that has no cure. The next step was to try and give the new birth control some time to work, to see if it would help resolve the cysts, so we scheduled my next ultrasound for 6 months.
Fast forward the 6 months and hot damn did that little monster grow. It had enlarged my ovary to over 9cm, and presented as and additional 7CM mass. Overall, I had a 16cm mass in my lower right abdomen (for reference, a softball is roughly 10CM). At this point I was feeling pressure on my lower right side, and my abdomen was always super bloated. It was not necessarily painful, but it was almost like someone was constantly stretching my abdomen. Now surgical intervention was absolutely necessary, and I was scheduled to meet with the surgeon Dr. T.
Dr. T did not have the same bedside manner as Dr. B; she was more calculated and to the point. We reviewed the findings in which she now was suspecting the mass to be a dermoid cyst.
Dermoid Cyst:
“a cystic tumor often of the ovary that contains skin and skin derivatives (such as hair or teeth)”
We wouldn’t know for sure until I have surgery, which was unfortunately pushed out untill March.
2016
Its February now and I AM IN PAIN. We do another ultrasound to make sure everything is ok, and nothing seems emergent. It shows that there is no normal ovarian tissue present anymore; and I also have another cyst on my left. I am prescribed some NORCO’s for the pain, and am on track to continue waiting for my surgery less than a month away.
March 2016 its surgery time. Luckily its laparoscopic, and I have my very supportive family by my side to help me through it. I get out of surgery to find out that they have successfully removed the dermoid, but unfortunately they also had to do a right Salpingo-oophorectomy (or fancy word for removal of my right ovary and fallopian tube), because the mass had completely overtaken it.
I still wonder to this day if we would have done this lap a year ago if we would have been able to save my ovary.
*WARNING*
*Graphic Photo if you swipe*
*WARNING*
*Graphic Photo if you swipe*
First photo is me pre-op for my first of many surgeries, second is the large Dermoid Cyst and third is post-op.
I begin my recovery, but about a month and a half after surgery I start experiencing some pretty bad cramping in the morning. The cramping is weird, it feels like I'm getting stretched, and that I am going to poop my pants (sorry for the TMI). I take some Pepto and ibuprofen, and go to work. I am trying my best to get through my morning but the pain keeps getting worse and worse. All of a sudden I go really pale, I am sweating profusely, and am barreled over in pain. I frantically call my husband to meet me at the ER, as something is not right. By the time I get to the ER I am vomiting and doubled over in pain, I couldn’t even walk it hurt so damn bad.
This was my first time in the ER for something regarding pain, and I am quickly finding out that female pain is not taken very seriously. There does not seem to be much urgency in getting me through the motions to see what is wrong, while every minute that passes is absolutely agonizing. I finally get a bed and some anti-inflammatories that don’t even touch the pain. Again, first timer here, so I didn’t know how this was supposed to work. The nurse comes back and see’s how bad I'm struggling, I explain that the anti-inflammatories aren’t doing anything, and she puts in a request for morphine. Next the doctor comes in to do a pelvic exam prior to prescribing me anything additional. At this point, I am groaning uncontrollably as I squeeze my husbands hand for dear life. I can barely keep still as tears stream down my face.
I have never seen my husband look at me like that before. It was horrible, he just looked completely helpless. I know he wanted to help me so bad but there was nothing he could do.
The doctor obviously sees I am not faking this and gives me the morphine, and I get sent for an internal ultrasound. From the ultrasound they see a mass on my left ovary as well as a partial torsion. Ok, yeah, I really wasn’t faking and this is freaking serious.
Now a surgeon rushes in to discuss what is happening, and she recommends that I go in for an emergency laparoscopic cystectomy and torsion correction immediately. If you don’t know what a torsion is, which most may not, it is when your ovary rotates out of place. The torsion was causing an obstruction of blood flow to my ovary, meaning if not corrected quickly, I could lose my last ovary. Obviously there is no thought, and I agree to the surgery.
I am prepped and waiting to go in for surgery, and I completely break down. Now that the drugs have kicked in and I am not as uncomfortable, the reality sets in that I may wake up and be sterile. There is no guarantee that my ovary can be saved, and I might wake up to never get to have a child that shares my husband and I's face. This was one of the shittiest moments of my life.
Luckily, the surgery goes very well and my ovary is saved! I begin the recovery process again and follow up with my OB office a week later. At this appointment, I meet with a new doctor from the practice, and she offers the depo vera birth control shot; as it has a better potential of helping minimize these cysts. The only thing is weight gain is a very common side effect, and I was already so worried about my weight (looking back I feel stupid for waiting). So she puts me on a different oral birth control that is also supposed to help with cysts, but was less likely to make me gain more weight.
2017
About a year passes, and the new birth control has been working well! My periods have been less painful and more regular, and I’m happy to have regained some control over my lady parts. I go in for routine checkup on June 8th and we discuss my progress. We also discuss that I had wanted to give the birth control time to work against the cysts, but now I am ready to have a baby. We plan for me to finish out my cycle, and then we will begin trying to conceive. Its time!
Just kidding! Literally a week later I am experiencing sharp uncontrollable pain in my abdomen again. You have got to be kidding me…
Again, rush to the ER, go through the motions, explain my history, get drugs, do a horrible pelvic exam, get more drugs, get horrible internal ultrasound, wait for result.
This time they find that my ovary is enlarged, and there are 2 new cysts; a 3.3cm simple cyst, and a 5CM hemorrhagic cyst that decided to rupture. That was it, a cyst filled with blood popped and caused internal bleeding; and it was the free fluid in my body that was causing me so much pain. Luckily, surgery was not needed this time as it was not an uncontrollable amount of bleeding. I was given a last dose of IV pain medication, and sent home with 12 Norco’s to keep me comfortable over the next few days. I of course was told to return if my pain does not get better or gets worse, and to follow up with my OB.
I follow up with my doctors office as advised, and I am feeling pretty defeated at this point. I am now working with Dr. L, who was my favorite of the bunch, and she tells me that all we can do is monitor the cyst if I don't want to go in for another lap to have it removed. The more surgery I have the more scar tissue occurs, which could potentially interfere with trying to conceive. I already have some odds stacked against me so I don’t want to risk it. I continue my birth control and am told to follow up in 2 months.
I didn’t even have to wait a full month before I am back in the ER with the same horrible pain. The cyst is 7CM now and once again leaking matter into my abdomen. Again all they can do is prescribe me pain killers unless I want to schedule another surgery. So my choice is pain or pain. We decide to wait on the surgery, but to do more frequent ultrasounds to monitor more closely (every 3 weeks). I wait the 3 weeks and we see at my next follow up that the cyst is not resolving; but it is also not growing. It was at this point that I agree to try the Depo shot for 6 months. I was so ready to start trying for a baby, but I needed to get these cysts under control.
I come back 3 months after receiving the shot and get another ultrasound. For the first time in a couple of years now I am showing a cyst free ovary. No joke, Dr. L and I sat in her office and cried happy tears together. I was so excited to see that for once there was a break in the clouds. I get my second dose of depo, and she refers me to a reproductive endocrinologist so that we can start putting a plan together for trying to conceive.
2018
I decide to stay on the depo longer than anticipated. I was pain free and I had lost the weight I was constantly worried about. I was feeling on top of the world, so I decided it was time to get off the birth control and start working towards conception. August 2018 was my last Depo shot. Little did I know that this decision would make 2019 one of the hardest years of my life.
To Be Continued...
- Jessa
-#BikerChick, #DogMom, #BombAssWife, #MetalHead, #ProfessionalShowerSinger, #PizzaEnthusiast, #EndometriosisWarrior #PCOSFighter
Join us next week as we continue to dive into Jessa's story!
Can't wait, or just want to connect? Check our her Endo Insta- @theendoinsideme
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