Pelvic Congestion Syndrome (Pcs)

[POTSdad]

Dr. Peter Rowe of Johns Hopkins discusses Orthostatic Intolerance (POTS and NMH) in this archived CFIDS Association Webinar from September 1, 2010 that is one hour and thirty-five minutes long.....

You can find the Webinars here: http://www.cfids.org...es2010-past.asp

In the above webinar, Dr. Rowe was indicating that some people with POTS also have Pelvic Congestion Syndrome (PCS). There was one case report Dr. Rowe documented where the PCS was treated with embolization, and both the PCS and POTS symptoms resolved.

I did some further research and it appears my daughter had many of the indications for PCS, including:

- extreme pelvic pain that starts soon after being upright after waking up in the morning, and it gets worse as the day progresses

- pelvic pain for 2 weeks out of the monthly cycle

- pain does not respond to pain killers, but it does respond to non-steroidal anti-inflammatory drugs

- other possible pain causes have been eliminated (ultrasound and MRI was performed to exclude ovarian cysts and endometriosis)

I highlighted these findings to our doctor, and he referred my daughter to an interventional radiologist who is competent with diagnosing and treating PCS. We are still waiting for our appointment.

I'm wondering if anyone else has been tested for PCS? If you tested positive, did you get the embolization treatment?

[lieze]

Wow that's amazing because I was having pelvic pain and I didn't really understand why or where it was coming from.

It was so intense the one day I had to hold back from going to ER. It was intense pain that was radiating to my head and making me feel lightheaded. I felt warm all over and was imagining that I had like a pelvic inflammatory infection even though I have never had anything like that. I could not understand the source because I was not having any discharge from either place (vaginal or urethra) so I was both very scared and puzzled.

But everything just felt inflamed and achy and had me down for an afternoon.

It sounds very much like what you have described here. If it happens again I will try not to worry so much.

I do not really use compression of any kind. I have periodically before I developed POTS I seemed when I worked on my feet to have just generalized edema (slight) in my lower legs really nothing major I would just feel a bloat and the knee highs I purchased were a compression stocking they were Nurse Mate brand and helped a lot in just how I felt overall.

Also I noticed from a young age when working and standing on my feet and I could tell because I was so skinny like a bone a bloat I would get. Panty hose also made me get a terrible bloat in my belly and it would be terribly uncomfortable by the time I would get out of them. I started getting queen size for that reason even though I only weigh 100 pounds and they worked better didn't hurt me as much.

But there could be something to this that I will probably never myself find out.

Thanks for sharing the information.

[POTSdad]

Thanks Lieze for sharing. If you have POTS and PCS, it makes sense to me how stockings alone could cause more blood pooling in the abdomen. If you squeeze the blood up from the legs, there is more blood to pool in the abdomen.

My daughter wears custom fitted waist high compression stockings (30-40). She was told by her stocking fitter that even waist high stocking won't do much for abdominal compression, so she got an abdominal binder. The binder helps reduce her pelvic pain. Now she wears stockings with the abdominal binder, and it seems to be working better then either one alone. We tried different types of binders, and one that is most comfortable and least visible under clothing is made by Gabrialla.

Pelvic Congestion Syndrome involves significant blood pooling in the lower abdomen, especially when estrogen is higher which causes blood vessel dilation. With PCS, the veins become varicose. What causes PCS pain is that these dilated varicose veins apply pressure on the reproductive organs and nerves.

We think that is why when we tried various birth control pills to control the pain, that the symptoms got worse. The extra estrogen would cause more blood pooling.

The treatment for PCS is an embolization procedure which involves plugging up varicose blood vessels in the abdomen, so the body can create new healthy blood vessels. The embolization procedure is done by an interventional radiologist using a catheter. This is a relatively non-invasive procedure with a very good success rate. Dr. Rowe mentions that 89% have a greater than 80% relief of PCS pain after embolization of ovarian vein varicosities.

Dr. Rowe mentions in the case report, that the person with POTS symptoms who had embolization to treat PCS had these outcomes:

- improved pelvic pain and orthostatic symptoms after embolization of avarian vein varices

- no further syncope

- now is able to stand for 7 hours during surgical clerkship

- wants to be a surgeon

That sounds like pretty good outcomes for anyone with POTS symptoms.

That's why it seems to me that anyone who has POTS along with PCS symptoms, should look into getting tested and treated for PCS. It could make the world of difference. It makes sense that if blood pooling in the abdomen could be reduced, that POTS would also be helped.

[sue1234]

This interests me. I feel a little funny mentioning this to a male counterpart, but oh well, you are here to help your daughter, so I can just get over it!

Through all three of my pregnancies(all prePOTS), I have varicose vein(severe) in a "private" area that were due to the pressure of the womb in the abdominal cavity. I had times where I was lightheaded or just feeling weird late in the pregancy that definitely went away after delivery.

I have had POTS for 4 years now. I know a few years ago my gyn told me that I was having somewhat of a uterine prolapse. So, recently I looked that up on a forum to see what symptoms people talk about, and alot were talking about swelling in their legs. That made me realize that, throwing all this together, I can see where circulation is compromised with all these pelvic issues. It's possible when we stand, what blood was in the legs has a hard time coming back up past the pelvis very well, causing ever more dilated veins and congestion. I will have to look into this more, as I know my personal history with varicose veins in my lower pelvis.

The question I have though is, you mention estrogen causing vasodilation. I always thought estrogen caused vasoconstriction, thus making women have increased b/p if on estrogen. And I thought progesterone, the "relaxing" hormone, was the one that caused vasodilation. Of course, my memory is always fogged up, and I don't learn things as easily as i used to!

In fact, I was thinking too much progesterone may be at the base of my issues(one of the many things I am considering!!), as I have a constant ovarian cyst and feel it continuously puts out progesterone.

[nunntrio]

I replied to you on an earlier post in regards to this and I have had this procedure done. I was diagnosed based on a pelvic MRI that showed reflux in effected left veins. My Dr. said that this condition can be hard to detectd becuase most MRI are done lying down which the problem harder to see. Luckily for me mine showed up even in the recumbant position. I believe you can also have a venagram done. I believe my Dr. did one of these on me during my procudures but I can not be sure. Reflux was described to me to be where the valves of the veins do not close all the way causing pooling. The procedure for me was very easy. It was done at the hospital but I went home that night and the recovery was minimal. I was basically functional the next day. If you would like any other info. I would be happy to give it to you. I have had a lot of vein problems and had a lot of different treatments. I hope this helps your daughter. She is very young to have to deal with all of this.

[POTSdad]

nunntrio

Thanks for sharing the details of your experiences with PCS. I also heard it is difficult to detect PCS, especially with a MRI lying down. I heard the radiologist we are seeing has other ways of detecting PCS. It may be the venagram procedure you describe.

[POTSdad]

The question I have though is, you mention estrogen causing vasodilation. I always thought estrogen caused vasoconstriction, thus making women have increased b/p if on estrogen. And I thought progesterone, the "relaxing" hormone, was the one that caused vasodilation. Of course, my memory is always fogged up, and I don't learn things as easily as i used to!

I double checked - estrogen causes vasodilation, progesterone causes vasoconstriction.

[maggie]

I'm sorry to read that your daughter is having other health issues other then pots. I'm sorry to change to subject, but I was wondering how your daughter is doing with Dr. Levine's exercise protocol. I know you can't explain what type of exercise she is doing, but I was very curious as to how that is going. Would you mind sharing that here with us?

Maggie

[POTSdad]

Maggie,

You asked how my daughter is doing with Dr. Lavine's exercise program.

It seemed like for the first month she was feeling a lot better, and the POTS symptoms were less. That's also the month she began wearing compression stockings, so we don't know if it was the stockings, the exercise, or both that was helping.

During the subsequent months she had several POTS episodes lasting a few days, which set her back. If you miss exercising 2-3 days, you need to back up a week in the program. The last 2 weeks she has had 2 colds, which has now set her further back. Since she has been away from the exercise for 2 weeks, it appears her POTS symptoms are also more intense. We are going to have to start from the beginning of month 2 again, slowly easing into the program.

So for my daughter it has been 2 steps forward, and then 1, 2, or sometimes 3 steps backwards. So in fact, it probably will take her 6 months to complete the 3 month program. I understand from the program co-ordinator that this is the way it is sometimes.

All together, my daughter has seen enough of a correlation with exercise and how she feels, that she is still very committed to the program. She has tried to go to the physiotherapist 5 days a week, although now that school has started, this is not always practical. We have bought some exercise equipment to have at home, to give her more flexibility with the workout times.

[POTSdad]

Getting back to talking about Pelvic Congestion Syndrome, I'm wondering what percentage of POTS patients have PCS? It is clear that Dr. Rowe believes there is a link between the two conditions. It also seems to me that PCS is not tested for very often, since it is difficult to detect and PCS pain looks like so many other types of pelvic pain. My daughter saw 2 gynecologists, and neither one of them suggested to be tested for PCS. At the time we did not know my daughter had POTS, but even if we did know that, I don't think that any doctors are aware of the link that Dr. Rowe has observed.

The only reason our doctor agreed to give us a referral to a radiologist for PCS, was I highlighted that Dr. Rowe has observed a link between POTS and PCS, and that our daughter also was positive for many of the other indications for PCS.

Hopefully this helps some of you if you think you might have PCS.

[maggie]

Thanks for the update on your daughter's exercise program. I hope she will be feeling better soon and is able to get back to a routine.

Maggie

[“It’s not POTS!” Mom]

Potsdad,

I am a mom of four who since I was a teenager had symptoms of PCS but thought it was normal. 3 years after my fourth c-section and not pregnant I began having more of the textbook PCS symptoms. They did an ultrasound and did not tell me that they saw varicose veins around my uterus. Fast forward two years and I’m a complete medical mystery that the only label they can give is POTS. I am medical and so is my husband. I saw every specialty that was available. My body had reached a point of blood pooling in the pelvis that I could not function. Lying down, I felt amazing. My heart was so stressed that I would present with episodes of bradycardia 20’s to 40’s. That stemmed from a slightly low potassium from cystitis that caused everything I  drank to immediately be peed out. I was told to eat lots of salt, and drink lots of water. It did nothing. I was incapacitated with four young kids. 4-11 y/o for 9 mo. They recommended cardiac rehab for POTS. I didn’t meet the typical POTS criteria but began anyways. Like your daughter, I could never stay strong long enough due to the lack of blood flow to my heart and brain. I would have to think about the ages of my children, couldn’t remember how old I was, would have to pull over at times on the highway when I was lightheaded while sitting, would squat when out in public to keep from passing out.  It was a true nightmare to not know why. I discovered in one one of my hospitalizations that 2 liters of LR made me feel normal again. First, my lower abdomen would become bloated, then I would feel it hit my brain as I could think clearly, speak quickly, feel witty, and normal again. Somehow, IV Lactated Ringers stayed intravascularly for about 2 days. It would be a slippery slope downhill after that. So, I became a regular at the local ER for fluids, at times not knowing my heart rate was in the 30’s. I was told I was crazy, asked why I had so many needle sticks (as if I was a drug abuser), told to get a massage and acupuncture and so much more. I applied to be seen at Stanford and The Mayo Clinic and was turned down. Finally, I read ah article of a male who had the same symptoms as I did and he had pelvic varicose veins as well as May-Thurner Syndrome. I immediately called my ob and asked him to look at the ultrasound done 2 years prior and he told me there were visible varicose veins. These should not be visible unless you are having an internal ultrasound with the Valsalva maneuver. They collapse when you are supine. This led to the correct diagnosis. I did have May-Thurner but my iliac vein was not completely occluded yet. At the time of my first venogram, the camera (IVUS), showed that it was 1mm. A 14 mm stent was placed. They also coiled and embolized both Ovarian veins. The last part was sclerosing nests of pelvic varicose veins. I had relief for 2 months. Then the symptoms returned due to altered blood flow pathways forming a loop directing blood flow back down into my legs instead of up to my heart and brain. We found the guru of this problem in our city and she did another venogram and shut down that pathway as well as many more pelvic floor varicose veins. They can only use so much sclerosant in one go. I am three weeks out from that and doing well. Not needing IVFs. I still need at least one, likely two more venograms to sclerose the many pelvic varices still remaining. There are so many that blood still pools. I don’t require IV fluids, but can function at about 75% now. I get tired....  This was an extremely disconcerting experience until we found answers. I never had the chronic pelvic pain that most women have. I had pain, but chalked it up to a couple of hernias I need to have repaired. I am a small person who carried 4 babies and that is how the doctor said this happens. I am also very veiny and have many valves. My previous baseline was as the energizer bunny. Always working on something, conquering the next thing, chasing kids, etc. I look forward to being at baseline again. I need to tell my story because so many women suffer from this and are told they are depressed. I am the opposite of depressed! By the end of the first 9 months I was situationally depressed, but give me some LR and I was back to baseline! No one could figure it out. I was asked if I was bipolar? No. I have ADHD, but love having the ability to hyperfocus. It also helps me understand my kids who have it too. I hope this helps someone. Don’t settle for POTS as a diagnosis. It is a cluster of symptoms for which there is a cause. Few doctors understand the causes. MALS, PCS, EDS, Nutcracker syndrome, etc. There are many reasons and finding the reason is a big undertaking. PCS is overlooked, in my opinion. I remember near the beginning asking my regular cardiologist of pelvic congestion syndrome could cause my weird symptoms and she laughed and said that we all have those issues as we get older. I’m 41, 105 lbs, and was active and healthy prior to this. Not your typical patient with three different cardiologists because they couldn’t figure it out. 

Don’t stop asking questions, be cautious with the exercise if she is hypovolemic. I ended up losing hair and developing stress vitiligo from that. One needs adequate blood volume to exercise. I hope they have all the answers and the next venogram or two will finish off these life sucking pelvic varices. I’m ready to be able to hike some mountains with my four kids! 

As a side note, I do not have leg varicose veins, am homozygous for MTHFR, and have a history of superficial blood clots so was unable to ever try birth control or hormones as a treatment. 

Let me know how your journey goes........it has definitely been quite the road for me and my family. It’s a good thing I am doggedly stubborn and determined. I hope the best for your daughter and family. 

Sincerely,

Misdiagnosed, mischaracterized, and mischievous “It’s not POTS!” Mom.