Pelvic Congestion Syndrome

[Sarah4444]

Hi everyone,

I haven't posted here for a while, which feels weird because this site was such a life line for me when I first figured out I had POTS. I have been trying to learn more about what is going on with me, whether controlling MCAS will improve my POTS, what the connection is among HDCTs like EDS and MCAS/POTS, trying to actually do more things when possible (I can sometimes empty my dishwasher now - yay! (semi-sarcastic)), and have been trying to recondition myself. My small dollop of daily energy has been easily used up recently.

But it's this last thing, reconditioning, that I am wanting to ask about. I am learning what I can about all my diagnoses, and have now come full circle to the one that has been most noticeable for the longest time - pain. I got a bit of relief from pain while my POTS was so bad that I could barely move, but now that I am trying light exercise it is back.

It seems to me that the pain I have has many layers, if that makes sense. There is the hypermobility/joint pain, but I feel like the pain in my trunk and legs may also have other components as well. Even as a teen I had episodes of pelvic pain. I am now wondering if some of what I call "low back pain" may have some vascular component. Has anyone here learned more about Pelvic Congestion Syndrome? Are there any studies/researchers/tests or anything else that you could recommend to me? I see my POTS doctor in March and he is probably the only person who would listen to me about this topic. Just to make things even more complicated, I am told that many patients with mast cell disorders also have pain in their pelvic/low back/upper leg areas.

I find it hard to talk to doctors about pain. I have been pretty lucky getting diagnoses of POTS, HDCT and am working on MCAS - these doctors have treated me quite well. However after having pain for years (and seeing doctors and being treated for it...) I saw one pain specialist not too long ago who told me that MCAS did not exist, EDS patients only have pain if they have dislocations (which I don't), I "may" have POTS but that doesn't cause pain...you get the picture. She basically said I was making it up. This was after I brought her reports from Dr. Francomano, my autonomic doctor, etc. (none of which she read - she had her student read them). I know she is just one of the bad eggs we come across, but the experience has made me very reluctant to broach the subject of pain with any other doctors.

Sorry this ended up so long - hope everyone is doing as well as possible.

[juliegee]

Hi Sarah-

YES, Pelvic Congestion Syndrome/PCS is linked to autonomic dysfunction. Search this site to check out previous chats. The idea is that varicose veins form in the pelvic area allowing blood to pool. Mack's doc at Hopkins is the first to make this link to autonomic dysfunction. Here is a webinar from 2010, in which he discusses PCS and more...which I think will also apply to you: http://www.potssyndrome.org/179/managing-orthostatic-intolerance/

I was inadvertently treated for this with great success. I had an embolization at age 45 for a huge uterine fibroid (10cm) which seemed to form very quickly. The idea was to fill the pelvic veins with tiny plastic pellets to block the blood flow & let the tumor die. During that procedure I learned that my pelvic veins were HUGE. I had before and after photos taken and the difference was remarkable- so was the clinical picture. My HR used to raise about 60BPM upon standing before the procedure & more like 20-25 BPM now. There is certainly something to this.

Regarding your pain, I am so sorry that things are still so bad That makes me sad. I also suffered extreme daily pain- especially in response to any activity prior to starting my MCAD regimen. THAT seemed to allay the majority of my pain. As you probably know Fibromyalgia/FM & Chronic Fatigue Syndrome/CFS are closely linked to autonomic dysfunction. Many (like me) believe they are synonymous terms. A recent small study showed that all FM patients had an abnormally high level of mast cells in a skin biopsy- maybe explaining my improvement? I KNOW that you are already taking the MCAD meds.... have you ever tried a TNF inhibitor? TNF is another cytokine involved in the inflammatory process that is not addressed by your current meds. Just a thought

I know you're not faking it & wish you had more improvement at this point.

Hugs-

Julie

[brethor9]

I was thinking Pelvic Congestion awhile ago as for many years I had horrible pelvic, lower back and leg aches (not cramping but vascular)....it got so bad I ended up having a partial hysterectomy.....right after that is when I came down with severe symptoms.......the pelvic pain is better but nothing else....my leg veins and back ache like crazy and I have noticed when I bathe that my whole pelvic area stays white...almost like it has no blood flow......I still wonder if this isnt tied in somehow? I have broached the subject with many dr's and they look at me like I am nuts yet it makes perfect sense to me duh

Bren

[Sarah4444]

Thanks for the info. For some reason replies aren't being sent to my email anymore, I'll have to check my settings. I guess I will bring this up with my POTS doc and see what he says. I am worried about having any medical procedures these days.

[aunie]

I am in the same boat right now. I have pelvic congestion and had them treated with vein embolization. They put metal coils inside my ovarian veins to block out the blood flow. It worked well at first and got rid of my pelvic pain and back pain, but I am going on 9 months post op and right this very minute I am experiencing pelvic pain again. It has been so bad that the last few days I haven't been able to sit up much. The blood just pools in my abd/pelvis and it feels like a ball, I can also feel the blood in my vaginal area too. They told me this may happen. That every person is different and they can't really tell you how long it will work. The next step is a hysterectomy.

I am actually kind of scared because I am pretty sure I have MCAD/MCAS. I am working on seeing a doc, but I won't get to see him or get treatment for another 4-6 months. In the mean time I am hoping this is just a bad week for my pelvis and it will get better. If not I am looking at a hyster and that totally freaks me out. I am allergic to soo many meds. I can't take any pain meds that I know of, and of course am allergic to anti-biotics and such. Recovery time for something like that is very long and without pain medication I don't think I could handle it. Not to mention if they have to do a total hyster, I am probably allergic to hormone replacement too. It's all very scary. Although eventually I will have to do something about my uterus, because of all the varicose veins and the pooling, I can't really do much but lie down in bed. Sitting up is getting harder. Before I had embolization I had this same problem. I really hope that this isn't the first sign that it's coming back.

-Andrea

[issie]

aunie, You sound like what I dealt with when I was younger. I had 8 abdominal surgeries for ruptured appendix (that didn't get operated on until 2 years later - no insurance - I was 23 when this happened), endometriosis and severe adhesion's. My last and final surgery was a complete hysterectomy at age 36. I wasn't to go on hormones for 6 mo. But, only lasted 5 mo. Because the lack of hormones at such a young age will make you nearly go insane. I had a horrible time trying to find hormones that I could use. It was a long, painful battle. I finally found a compounding pharmacy for bio-identical hormones that I use and it is really great for me. Also, I found that Red Clover is really good in helping with the hot flashes and other issues that go along with this instant menopause. I also had leg vein surgery when I was 26 - due to very painful, enlarged varicose veins. It was the best thing I ever did for the pain in my legs. I also did sclerosing therapy for what was left behind.

I was told by the doc that did my hysterectomy that I had to have my ovaries taken because of the amount of adhesion's I build up. If they attach to the ovaries and the abdominal wall - the pain is still there. Every time you move you pull the most sensitve organ in there. Most people with endometrosis that don't remove their ovaries have to do so within 3 years - because of this or the ovaries cause the endometrosis to come back. You have to block the estrogen in case there are spots of endometrosis that they don't get cautrized and estrogen makes them grow. Then you bleed internally and the pain is so horrible. (The staying off of estrogen for 5 months was one of the hardest things I've ever experienced - it really messes with your mind. Not to mention that I had wanted kids and couldn't have them.) But, today - I have no abdominal pain and I really don't miss the horrible cycles that I had before. With POTS - I'm glad I didn't have kids - but, that was a really big adjustment for me. I think I would have been a good mother. All my nieces and nephews love me - and that's a wonderful experience.

If you do have to do the hysterectomy - keep in mind - others have done it and have survived. You can too!

Issie

[lillybits]

oh wow! I have had 3 pelvic surgeries the last one was a husterectomy when i was 28I had excessive bleeding, systs and adheasions along with endometriosis. i might have had this much much longer than i had thought. i had been tild in my late teens that i probably wouldnt be able to have kids because of the abnormal paps.....

[issie]

oh wow! I have had 3 pelvic surgeries the last one was a husterectomy when i was 28I had excessive bleeding, systs and adheasions along with endometriosis. i might have had this much much longer than i had thought. i had been tild in my late teens that i probably wouldnt be able to have kids because of the abnormal paps.....

So, sorry lillybits - I know your pain. It is a hard adjustment. For years, there was no way I could go to a baby shower and if someone had a baby - even though I was happy for them - it reminded me of my trauma and that I couldn't have children. Lot of tears shed over this one. But, I've enjoyed my life without kids and have been able to travel allot and see much of the world. In some ways - it afforded me the ability to have the freedoms to do things that I wouldn't have been able to do otherwise. But, that loss is still there. Hang in there Darlin - life will be okay - even without children. It has helped me to help others and devote myself to that. It takes your mind off yourself and your pains and see that things could have been a whole lot worse - there's others that need your help - devote yourself to that and you will get a lot of the fulfilment in life that motherhood would have brought. Of course, you can always adopt. This wasn't something my hubby and I wanted to do - but, that option is there. I've been happily married for 32 years in a few days - lots of ups and downs - but, this one (loss of motherhood) was/is tough.

[aunie]

Issie,

Thanks so much for sharing. I am terrified. I am afraid that lack of hormones is going to make me crazy. I already struggle with anxiety and bouts of the blues. but I think it's partly my hormones causing those flares. Of course the adrenaline issues too. I'm just afraid I'm going to make myself worse and it's not like I can put it back in once it's out., I just don't know if it will be worse or better without my ovaries. Are there alot of different hrt options? How bad was the pain? I am worried about the pain too, because of my allergy to pain medicine. I'm just going to keep praying and hope god will show me the way, because it is all very scary to me. I use to be stronger about having surgery and stuff, but years of tests and surgeries has wore me out. At least I know other potsies have gotten through it and survived. I also am very lucky to have the two children I already have, so it is alot easier for me to let it go, at least in that way. Thanks again!

[issie]

Aunie,

I can give you the name of the pharmacy that does my compounding. I've tried several different ones and this one was the best tolerated by me. PM me. Also, Red Clover has been the best help to me for hot flashes and balance.

My hysterectomy was very intense. They had to go through all my bowels - look at every spot on them and put them back in and also look at all my organs as high up as was possilbe. My surgery took really long time because of all the other surgeries I'd had and the ruptured appendix. I had massive internal damage. It was pretty horrible for me - pain wise. I'm very sensitive to pain and feel it worse than most. There is only one pain med that I don't react to - it's Demoral with Phenagan added. Anithesia makes me wake up throwing up and the phenagan helps with naseau. When you've been cut open and everything moved around like I had - you don't want to contract your muscle with throwing up.

I can give you some tips of what to do to help with the pain. One thing is have your favorite music playing in the room when you return - something mellow that you can concentrate on. Don't hold your breath - make sure you breath. Tell everyone beforehand, to not have a party in your room - the more quiet it is the better - every noise seems to be intensified when you come out. Put a pillow on your abdoman and leave it there - the heat and the pressure helps the pain. When you first get up - make sure - this is really important - look up. Whatever direction you look will be the direction you go. Don't look at the ground you are liable to faint if you do. Lemon Zinger tea takes the gas pains away that they fill your ab. with to seperate the organs. Have some of that handy and drink as much of that as you can. After about 2 weeks you will be starting to be better. It takes several months to be totally over the surgery. There's more that I can tell you - but, I don't think those details should be put on public forums. Honey, just remember - there is a reason why you need the surgery. You can do it. I did it and many others have done it. But, you will need pain meds. You can't do it without them. Try different ones until you find one you can use - before the surgery. Then that will not be an issue. They can do hysterectomys without cutting you open like I was - so if you can go that route - it will be less painful. To me - KNOWLEDGE is POWER. Most of the people I've told these things to and they've done them have come back and thanked me and said it helped to not go into it not knowing what to expect. PM me when you get closer to having your surgery and I'll tell you some more. This is enough for you to think about. Many, many people have done it - you can too.

Issie