Pelvic Congestion Syndrome

I wanted to write this post because there isn’t much out there on Pelvic Congestion Syndrome. I personally appreciated every woman who wrote about their experience because it helped me find my answers and decided on my course of action.

Pelvic Congestion Syndrome is basically the varicose veins of your uterus and ovaries. It is common during pregnancy, but then something doesn’t go away. It is also something that once you have it - you have it. There is no cure, and it doesn’t just go away. Some women have zero to mild symptoms; for other women, it is disrupting their everyday life. The symptoms can vary from woman to woman; you might not experience all of the symptoms or experience different ones from someone else. The most common is the pressure; it really feels like something is sitting there all the time; kind of like that feeling when you are pregnant that low pressure you get.

I feel like the last 3+ years of my life are finally explained, and I am not crazy! Since my last pregnancy and during, I felt off. Something was wrong, but I didn’t know what; my anxiety was out of control, and I just felt like something else was wrong. But after many doctor's appointments and blood work, not much came up... Anxiety can cause so many physical symptoms, so I thought it must just be my anxiety. Honestly, part of it was, but I still couldn’t physically feel right no matter what I did.

  1. I started to ignore symptoms because they become my “normal feeling.”

  2. After so many appointments, I started to feel crazy and like it is pointless to go to a dr and spend so much money - just to be told: “everything looks fine.

I have been saying since I was pregnant, over 3 years ago at this point. "I feel like my IBS flared, and it isn’t controllable by food." Everything, I mean everything I eat, makes me feel sick, my list of food sensitivities tripled since giving birth. I felt like I still had anxiety with no trigger, something in my body didn’t feel right, but I didn't know how to explain it. It is hard to know what is an important symptom and what person to talk to. Am I supposed to talk to my OB about IBS instead of the GI; do I talk to my OB about hip pain - ugh, it is hard to know!.

I first told my OB about pressure, discomfort, pain, pressure when peeing, and my periods started to change (March 2019). I said it felt like I always had a UTI starting but would go away or never turn into one. He did blood work and called for an ultrasound. Found that I had an ovarian cyst and a “small” uterine fibroid. When I question the nurse's results about the amount of pressure, she replied with “They are really small.” Which made me feel I am dramatic, and it will get better. When I started to ignore those symptoms - pressure, burning, pain while peeing, the feeling like something is sitting on my bladder all the time.

This was when I focused on my anxiety and food issues; I learned what foods I “could” eat without feeling sick (which isn’t much). I worked through my anxiety which was caused by triggers. I still didn’t feel “right” like something was wrong, but again I dislike going for tests only to be told, "we don't see anything." I managed to handle almost all of my trigger anxiety - but something is still there and feels like it is out of my control. My anxiety most definitely feels high and uncontrollable around my cycle. I assumed this is just my new normal, and I deal with it.

Then I woke up on New Years' Eve 2019 - and I couldn’t walk. My right hip felt like it was out of place but not really out of place; I couldn’t put weight on it without major pain. There was no shooting pain like in sciatic nerve pain. I went to my primary dr. I did ask, “I was told 9 months ago I have a fibroid and an ovarian cyst. Could this have anything to do with that.” - I was told it was doubtful. I was born with a bone disease, and it is easy to go to that might be the issue, focused on my bones and x rays. She told me it was likely nerve pain from constipation and to increase my fiber. Since the pain had just started, it isn't considered chronic, so you are left with a wait and see if it goes away. Did you know it takes 6 months of pain for it to be considered chronic!

I dealt with the hip pain on and off till I couldn’t. It started to change my entire life. Some days the pain hurt so bad to walk, which would turn into a long stretch of limping around in pain. I am a mom who is homeschooling a Kindergarten and has a 3-year-old. This doesn’t make for easy days. After waiting and many different appointments. I got to an orthopedic who thought this must be a stress fracture and sent me for an MRI. Instead, the MRI came back that I have Pelvic Congestion Syndrome. My orthopedic found this!!

Pelvic Congestion Syndrome is hard to diagnose. Find an OB who knows the best way to do this and is educated about PCS. Finding a good OB is key. Once you find one who knows about it, will spend time with you, the answers will come.

Now I didn't have just a PCS; I also had Uterine Fibroids. Between the pressure of the Congestion and the fibroid's weight sitting on a nerve, I am uncomfortable, to say the least, and the typical PCS treatment, embolization, won't take away my hip pain. It could decrease the pressure, burning, and discomfort from the PCS - but it won't take away the fibroid.

I was giving these choices:

  1. Anti-inflammatory medication helps deal with the PCS, which could be a great choice for those with mild symptoms.

  2. The embolization is the go-to with women with more symptoms, but not something that will really help fibroids, from what my dr explained to me.

  3. A hysterectomy - there are different types of these. If this is something you are doing, understand what they are removing and leaving. My dr explained to me that he would be removing everything but the ovaries. He explained that if he left the cervix, that I could still experience pressure - because he would be leaving a place for the veins to pool and become inflamed. Therefore it would create a possibility of pain, pressure, and discomfort.

I will say that I did a little research on some procedures to remove fibroids or decrease them in size. It seems like a lot of different procedures, and the cost adds up, especially if you have to keep doing them. Once you have a fibroid, you are more likely to get more, especially if they run in the family. What is important to me is to have one procedure and be done. I didn't want trial and error trying embolization only not to work and need another surgery. I also had a history of abnormal cells, so removing cancer risk is a bonus for my peace of mind. As I knew I am done having children, this wasn’t a factor to me but could be to some.

I decided to have a complete hysterectomy (February 2021), everything except for my ovaries. This is a big surgery, a common and simple surgery for the OB, but a long recovery for you. This week I am 7 weeks post-op. I am happy to say it was worth it, a long-slow recovery for me, but 100% of my PCS & fibroid symptoms are gone. Emotional I feel the most stable, all month long, that I have in a VERY long time. My anxiety doesn't feel out of my control. Physically the pressure and the pains related to PCS and fibroids are gone. I didn't realize how long I was living in pain and discomfort; I am happy to say that the journey to get here and decide to have a major surgery was well worth it.

If you just got diagnosed or thought this might have Pelvic Congestion Syndrome, I am more than willing to talk about my symptoms or answer any questions I can. Just send me a message.