JennKay Posted September 18, 2022 Report Share Posted September 18, 2022 Hi all - I've seen this topic come up before, quite frequently about 10 years ago, but nothing much since. I've also messaged a couple of users that posted a decade ago, but haven't had any responses -- which is totally understandable -- so thought I would start a new discussion thread. Before all my dysautonomia symptoms started I had regular, cyclical pelvic pain that started after my second pregnancy. My OBGYN looked into this, I was referred to a vascular surgeon, and we found that I have pelvic congestion syndrome. At the time we agreed that no treatment was needed, especially since I could pop a couple of Advil and work through it most days. Then my main dysautonomia symptoms started about 1 year later. I have asked everyone (the vascular surgeon, my cardiologist, my EP, my neurologist) if the two were related and always got the "I'm not 100% sure" response. So, I just let it go. In the last few months, in trying to find alternative treatment options for me, we discovered that my hormones are menopausal even though I'm in my mid 30s. So, I gave progesterone a try about a month ago. Crazy enough, the progesterone improved my orthostatic symptoms, eliminated my PVCs, and I slept through the night for the forst time in over a year. I felt normal again. But, it aggrevated my pelvic congestion syndrome to where it was painful when standing -- no more lightheadedness, just pelvic pain!! And, when I went off the progesterone to have a cycle the PVCs and other symptoms were worse than before...didnt think they could get worse. So, this didnt seem like a good long term option anymore either. I discussed this with my husband and we talked about my veins again. So, I messaged the vascular surgeon and told him I'm ready to fix these veins to see if it alleviates my dysautonomia symptoms. And if not, at least I may be able to take progesterone long term once the veins are fixed. We just did a CT scan with contrast to get the big picture of what is happening and I see the surgeon Monday. All of this to say -- have any of you been diagnosed with pelvic congestion syndrome, or know of someone diagnosed with it who improved after treatment? I've read a few places that POTS can be secondary to pelvic congestion syndrome but havent found any studies quantifying the association, just anecdotal evidence. Thanks!! Quote Link to comment Share on other sites More sharing options...
JennKay Posted September 18, 2022 Author Report Share Posted September 18, 2022 Am laughing b/c when I was first diagnosed with pelvic congestion syndrome I wasn't looking for connections to POTS. Just found this article which states, with statistics, that women with POTS have a higher incidence of pelvic congestion syndrome than women w/o POTS. https://pubmed.ncbi.nlm.nih.gov/32757696/ I am going to proceed with whatever treatment is recommended and will report back since this may help other women in our community. Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 18, 2022 Report Share Posted September 18, 2022 11 minutes ago, JennKay said: Am laughing b/c when I was first diagnosed with pelvic congestion syndrome I wasn't looking for connections to POTS. Just found this article which states, with statistics, that women with POTS have a higher incidence of pelvic congestion syndrome than women w/o POTS. https://pubmed.ncbi.nlm.nih.gov/32757696/ I am going to proceed with whatever treatment is recommended and will report back since this may help other women in our community. Whew! glad i can take this off the list to worry about. Pretty sure it does not apply to me. I will be following as to how you make out. Best of Luck! Quote Link to comment Share on other sites More sharing options...
JennKay Posted September 18, 2022 Author Report Share Posted September 18, 2022 @MikeO -- I think men can get similar variscosities in their gonadal veins, it is just more common in women b/c we are responsible for growing new humans which puts pressure on everything down there!! 😆 Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 18, 2022 Report Share Posted September 18, 2022 5 hours ago, JennKay said: gonadal veins I did have to look this up. Is the due to varicose veins? Quote Link to comment Share on other sites More sharing options...
JennKay Posted September 18, 2022 Author Report Share Posted September 18, 2022 @MikeO -- correct! It is essentially varicose veins in the pelvis area. Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 18, 2022 Report Share Posted September 18, 2022 1 minute ago, JennKay said: @MikeO -- correct! It is essentially varicose veins in the pelvis area. OMG i went thru this a number of years ago. If i posted the details it would be X-Rated Haha. I am good for now. Quote Link to comment Share on other sites More sharing options...
JennKay Posted September 18, 2022 Author Report Share Posted September 18, 2022 @MikeO -- oh my!! From.what Ive read, I get ya though 😉 Quote Link to comment Share on other sites More sharing options...
Ranga Posted September 20, 2022 Report Share Posted September 20, 2022 On 9/18/2022 at 1:22 PM, MikeO said: OMG i went thru this a number of years ago. If i posted the details it would be X-Rated Haha. I am good for now. I suspect that I may have something going on similar. Varicocele, hemarroids, diverticulosis,etc . Quote Link to comment Share on other sites More sharing options...
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