Latest Updates
September 2023
Somehow nearly a year has almost passed since I had my first successful pelvic embolization under the care of Dr. Ji Buethe at Johns Hopkins. I had my procedure in December of 2022 and launched this online resource just weeks later in the first days of January 2023. It’s time to provide some updates! The good, bad and unexpected….
Peaking Out
As shared in my story, I felt great just a few weeks after my December 2022 embolization. I was back to myself! I took a work trip to NYC in January and had more energy than I had in years. While I kept my physical activity pretty low intensity after the procedure, eventually I started ramping up my exercise regime to get back to a habit and place I had been prior to my diagnosis. This included starting to do stationary biking, outdoor cycling and running. Something new to this physical routine is that I live near some pretty big hills, so running flat on the lakeshore of Chicago while in peak physical shape was quite a different story to where I was now - uphill pavement outside Washington D.C. in the worst shape of my life. For a few weeks I kept up with this level of activity and then I took an international trip for work. This trip was a catalyst for a slip back to feelings of pain prior to my embolization.
In April 2023, just 4 months after my Pelvic Embolization, the back, stomach and lower pelvic pain returned. My relief had peaked, and now I felt I was plummeting back to reality with resurgence of symptoms. I started taking photos again when I felt the pain so I could remember exactly where I was feeling it. It felt surreal! How could I be having this pain again? Also, when the pain would flare up in my stomach, pelvis and back, it would also be painful on my left breast. Not to feel left out, my legs also pinged me with feelings of “we’re bacccckkkkk” where I had been having treatment for varicose veins. This was a blow to my ego!
When I returned from my trip I called up my Doctor and shared that there had been a resurgence of pain. I arranged for a day off of work and drove back to Baltimore to see her in-person. I remember meeting her PA prior to our appointment to give him the run-down on what I was experiencing. I heard him brief her outside the door before she entered and after he told her “she says the pain is nearly as bad as before”, I heard my Doctor respond in shock, “as bad as before?”
When I showed my Doctor where the pain was resurging she responded along the lines of, “Let’s get you back in there - let’s take a look and see if there’s any new veins, and if so, we’ll treat them then and there. I do want you to get your left breast checked though which will require you to get a referral for a mammogram since you’re under the age of medical guidelines to receive one”.
I left her office with a plan, and quickly scheduled appointments with a gynecologist so I could get a referral for a mammogram, and I scheduled my 2nd pelvic venogram for July 2023.
Advocate for Yourself
I cannot overstate this - absolutely no doctor is going to advocate harder for your return to good health than you will.
No one will fight for you or be as determined or curious as you will be to relieve your pain.
They will not be endlessly curious in a relentless pursuit of answers for why you have pain.
They won’t grab you by the wrists, look deep into your eyes and say: “we will get to the bottom of this - together!”
They aren’t superhuman - they’re trained and educated mortals who (hopefully) do their best (most days) to help their patients be treated (not always with the most effective and latest treatments offered).
This became even more clear to me as I tried to uncover the root of pain in my left breast. My hypothesis was this: my left side of my body is constantly in pain. My left legs, my left stomach, my left back, and now - my left breast. The first three areas of pain (legs, stomach, back) are due to pelvic congestion syndrome. My veins have varicosed in all of these areas, causing congestion of blood to start pressing against parts of my body where it shouldn’t be, causing pain. So, I thought, perhaps veins are causing pain in my left breast?
“Not likely” said one Doctor
“Hmm, I doubt it” said another
“I haven’t seen that too often” yet a third
Even with all of the doubt from whitecoats in front of me, my gut was telling me that this was all related. I did follow the process of first going to my gynecologist, then getting a mammogram scheduled (later that summer with first availability). Thankfully, my mammogram showed no masses or causes for pain. I was scooted out of the Doctor’s office quite quickly with a waiting room filled of women waiting to be seen, all before 9:00 AM.
At my next appointment to treat my legs, I once again brought up the pain I had been having in my breast. Fed up at this point after the mammogram showed nothing but I could clearly see a visible vein in the spot of pain I asked for them to conduct an ultrasound over the area. They agreed and after less than a minute were able to visually see that yes, in-fact, I have a network of veins that are causing blood to pool in the exact area I have pain. At first the Doctor wasn’t sure of how he should/if he should treat it, but after doing some research online he shared that, ‘apparently this is quite common, and Dermatologists can even treat it’.
Now, I haven’t had any treatment to the veins in my breast but damn it feels good to have an answer and cause! Had I not pushed and pestered and directly asked for the ultrasound on my breast, I would still be without an accurate confirmation today.
Back to the OR
Now that I had answers related to my breast pain, I confidently went into my 2nd procedure for pelvic congestion with an awareness of “what to expect”. The kids were staying with my parents for a week, my husband had taken off work, I had planned around work as best I could and was hopeful that in just 10 days or so, I’d be feeling just as good as I had after my first procedure.
The day started just as early as previously, with a wakeup before dawn and drive to downtown Baltimore to be ready for an 8:30 AM procedure. I enjoyed my twilight anesthesia again and was wheeled to the same room I had been in before. I was ready to relax and be embolized! However, the day didn’t pan out as planned - for myself or my Doctor.
While in there, they confirmed that there were varicosed veins refluxing that were not visible previously. Their hypothesis was that these veins had generated as newly-formed varicose veins since December. While attempting to treat these, they started to rip due to the size of catheter and fragility of the vein. Because the vein ripped during the venogram, we couldn’t embolize. My body needed some time to heal from the stress of the procedure as well as the veins to stop bleeding. We scheduled a follow-up procedure for the following week and I went back to gameplan mode. I’d now have the kids back at home, my husband would need to take off work again (as would I) and I would need to allow for time to heal before a scheduled international flight once again with the kids without my husband.
What the Hell is Happening?
Once home after the second procedure I felt lethargic and had a pounding headache. I thought it had something to do with the anesthesia wearing off and leaving my body. What happened next though was completely unexpected. I started to feel emotional and would cry non-stop. Hot, warm tears would stream down my face and I couldn’t shake this feeling of depression. I was also having hot flashes and trouble falling asleep at night. This lasted about two days until I woke up in the morning and found that I had started my period - 10 days early. With the arrival of my period went the departure of the tears and headache. “OMG” I thought, “I just had the baby blues for two days!”. It was the exact feelings I had post-partum with both of my kids. It’s like my body had been hijacked by hormones but now my brain was clear and I couldn’t believe how I had been crying the last two days. When I asked the nurses in my post-procedure follow-up they said they had never heard of this as a side effect to the anesthesia or procedure. When I asked my gynecologist she said that it’s possible the stress of the surgery as well as increase in blood flow during the surgery caused a “menopausal burst” but couldn’t be sure. She shared that really any form of stress can knock us off our cycle and the fact that I’m now in my late 30s makes this more likely to occur. Neither doctors seemed entirely confident in why this happened, but now I was concerned about having the same experience as I was scheduled to go back into the operating room in just a few short days.
Third Time’s a Charm - Right?
A bit less confident this go around knowing how I felt after the second procedure, we rallied and got ourselves up and out the door once more before dawn. This time, with two kids under 6 in tow! I had prepared snack bento boxes for them, coloring, reading books and a tablet. They would likely sit in the waiting room for four hours with my husband and we were trying to be as prepared as possible. They settled in quite easily and my husband said they really did well throughout the morning.
Unfortunately, third time wasn’t a charm for me for this embolization. While we knew that the catheter was causing my veins to rip in the second procedure, we thought a smaller catheter would do the trick allowing for a successful procedure. Even with the smallest catheter available, the veins once again ripped. My Doctor was relentless though (perhaps because now it was new residency time at the hospital and the OR had a dozen newbies behind the glass watching). She spent nearly three hours navigating my veins and trying to embolize from different entry points, eventually foaming as much as she could before calling it. “That’s it, we’re done" she called, with a slight hint of exhaustion in her tone - as if she had just finished a long distance race herself. I tried to hold back the tears as I realized we hadn’t gotten it done. Once again, I was getting rolled out without accomplishing the goal we’d set for ourselves.
The Reality
After being sent to recovery (where they have the best nurses and staff - seriously, wonderful), I laid in bed and let the reality set in. There, I finally cried. My Doctor came in and debriefed me on everything that had happened. The veins, the ripping, the bleeding, the last-minute attempt at foaming. As I recall asking her, “So we basically just foamed the hell out of my pelvis where we could?” She showed me pictures of my veins and how they looked in comparison to the previously embolized veins. They were horrible looking. It looked like someone had cooked angel hair spaghetti pasta, grabbed a large spoonful of it, and dropped it into my body. This cluster of thin, noodle-like veins clumped together - intertwined within one another creating a big, painful mess. No wonder I felt like shit! She also shared with me thoughts that all off the exercise I had been doing in April could have exacerbated the condition due to the increase in blood flow working out on steep hills. Then came the worst news - the ‘I don’t know how good of an idea it would be to get pregnant again’ chat. Things are basically a mess, now becoming difficult to treat and pregnancy will only exacerbate and make it worse. “Take it easy this summer” she said, “let’s talk in a few weeks and see if the foam helped at all”. Once more, I left the hospital slightly out of it and with a feeling of loss.
Present Day
It’s now been three months since my back-to-back procedures, and I’ve seen an improvement! I still have subtle pain in my stomach and more prevalent pain in my lower back, but I am feel better than the spring. Pain is always worst prior to or during my period, which make sense given the disease and symptoms. I also have not yet tried to increase my physical activity again due to my fear of creating more problems for myself, but I will be incorporating stationary biking back into my routine as well as walking. I’ve also prioritized my diet since the spring and have been using Weight Watcher’s for more than 100 days. I’ve had some weight loss but admittedly need to stick to my true daily points allowance to see the continued progress. It’s been excellent though for me to monitor what I eat and how it’s impacting how I feel. For example, eating less meat and opting for fish instead has helped my feel less inflamed. So has introducing morning cantaloupe for breakfast each day with tea rather than toast with an iced coffee.
So where does all this leave things? Still searching for answers, and still advocating for others.
Do I feel better today than 18 months ago? Absolutely.
Do I feel better today than after my first procedure? No.
Am I glad I had the pelvic embolization initially? Yes.
Do I want to go back in and have a 4th procedure? Not right now, not really.
Am I going to continue looking for second and third opinions? YES.
So much is hanging in the balance in terms of what my life looks like depending on how healthy I am or how unhealthy I become. To take some of my own advice: I need to continue advocating for myself and what I need for my quality of life. So we press on….