u/Ordinary-Passion-134

I have a great interventional radiologist who recently diagnosed me with May Thurner Syndrome. He has been pretty casual about it and has told me not to worry or make any lifestyle changes, but I have so many questions about it. For context, I have had ultrasound and MRV but am not scheduled for a venogram yet. I’d appreciate any info you have from personal experiences.

\-What are some good informational resources you’ve found for May Thurner’s? I have found a lot of conflicting info using Google so I’m wondering if there’s a reputable online recourse, podcast, etc?
\-If you’ve been diagnosed but have never had DVT, do you take anticoagulants?
\-Has the diagnosis impacted your travel frequency or flying routine? My doctor said not to worry and just wear compression socks but I want to make sure I’m doing everything I can to be safe for long haul flights.
\-How long was your venogram recovery with no stenting? Or with stenting? How long before you went back to work?
\-Do you take any supplements or made any lifestyle changes that have helped? Or things that you avoid?

I have a great interventional radiologist who recently diagnosed me with May Thurner Syndrome. He has been pretty casual about it and has told me not to worry or make any lifestyle changes, but I have so many questions about it. For context, I have had ultrasound and MRV but am not scheduled for a venogram yet. I’d appreciate any info you have from personal experiences.

-What are some good informational resources you’ve found for May Thurner’s? I have found a lot of conflicting info using Google so I’m wondering if there’s a reputable online recourse, podcast, etc?
-If you’ve been diagnosed but have never had DVT, do you take anticoagulants?
-Has the diagnosis impacted your travel frequency or flying routine? My doctor said not to worry and just wear compression socks but I want to make sure I’m doing everything I can to be safe for long haul flights.
-How long was your venogram recovery with no stenting? Or with stenting? How long before you went back to work?
-Do you take any supplements or made any lifestyle changes that have helped? Or things that you avoid?

Needing to vent to people who are able to understand what I’m dealing with…I am currently my uBPD mother’s scapegoat (due to geographic proximity; other middle-aged siblings and most family members all live farther away). It’s really been wearing on me. She doesn’t have a good relationship with anyone in the family, but she seems to think that she can take all her anger out on me. She feels “unappreciated” and calls her increasingly frequent screaming rages “normal emotions.” She sends nasty messages and expects me to be responsible for her emotions. I feel like I’m dealing with a cranky toddler who either lies or distorts reality. Recently she sent me a YouTube video about letting go of people who don’t love you for your authentic self- implying that she needs to let our relationship go. In theory, I would love to go NC with her, but she still wants a relationship with my children/her grandkids, and I still want a relationship with my dad, who she is still married to. I know that her thinking isn’t rational, but it hurts to think that she sees me as the problem, when I’m the one who puts up with the brunt of her toxic behavior and helps work to make family get togethers more peaceful. It’s exhausting. I’d love to be able to brush it off but I’m a true peacemaker enneagram type and feel like I want to fix this. I’m not sure if I should just lean into the low contact and accept that she’ll never be happy with our family? Or attempt family therapy or something?

Well I think I found a new trigger…Anyone else get a flare from visiting high altitude? Did it go away as soon as you descended or stick around for a while? I’m not sure if I should try to get past it and try to acclimate or just drive back down this mountain.
This condition has turned me into such a hypochondriac. Anything out of my normal routine makes me flare and it makes me never want to go anywhere!

Haiku:
Lazy cat sleeping,
Belly up on the blue couch,
Peaceful afternoon

Has anyone’s BPD parent developed memory loss? And I mean actual memory loss, not the BPD selective memory loss where they rewrite history to their own advantage.
Everything is now an argument of facts and it’s becoming exhausting, more than the usual drama and debate. How do you help a parent with BPD realize that they need support? How do you manage the absolute rage when she wants to argue every little thing like you’re wrong, when you have email/text receipts?
I’m thinking it’s early stages of late-onset Alzheimer’s. All 3 of my siblings and I have done genetic testing and we’re all carriers of multiple risk genes, including APOE.
The ironic thing is that she thinks our dad (shockingly they’re still married) is the one with memory loss and she is trying to convince everyone that he’s the problem. If it weren’t for my dad we’d probably all be NC with her at this point.

Does high altitude impact your venous insufficiency symptoms? If so, what have you done to help mitigate symptoms? I’ll make sure to stay hydrated and wear compression socks, but are there any meds or supplements that help?

Does high altitude impact your venous insufficiency symptoms? If so, what have you done to help mitigate symptoms? I’ll make sure to stay hydrated and wear compression socks, but are there any meds or supplements that help?

I am one month post laparoscopy and am still bleeding! I didn’t even have excision, just diagnostic. My doctor said it’s fine for the first month so I’ll be checking in soon if it doesn’t stop. I am on birth control and had a week where it was like a heavy period. Now it’s lighter but I’m worried about getting low iron. Before I started birth control a couple years ago I’d have long unpredictable periods, but nothing like this. I am wondering if anyone else has had bleeding for a long period of time post laparoscopy? If you bled for more than a month, did your doctor do anything to help stop the bleeding?

I have to get an MRI with contrast soon and I am stressing about having a reaction to the contrast. I had an MRI with contrast a few years ago and was fine but that was before I developed MCAS.
Has anyone pre-medicated with Benadryl and famotidine? This is probably more of an anxiety problem than an MCAS problem at this point, but I’m hoping if I pre-medicate then I’ll feel a little less out of control of my body. No horror stories please.

Are there any public salt water pools in Orange County?
(Before you say it, yes I’m aware that there is an ocean but I’m not going to ocean swim in the dark after work. Also, I’m aware that salt water pools still have chlorine but salt water is easier on my eczema than chlorine tablets/liquid.)

I’m 3 weeks post laparoscopy and have had mild bleeding. At my post op my doctor said it’s normal to bleed for another couple weeks. I’ve now started my period and for the last couple days have been having pretty frequent clotting. Most around the size of a quarter but some larger after I get up in the morning and haven’t used the restroom in a while. I’ve reached out to my doctor but am wondering if anyone had a similar first period after laparoscopy with clotting. How long did your period last? I feel fine, only minimal cramping and no fever, odor, etc, it’s just a lot more clotting than I’m used to. I also had been on birth control and hadn’t had a period in a couple years.

I need to ramp up my iron intake and it seems like a lot of iron rich foods are high histamine, or the MCAS friendly foods are low in iron and would require a huge intake of that food. Any tips? Does anyone tolerate iron fortified Cheerios?

I’m almost 3 weeks post laparoscopy and cystoscopy. I’m still bleeding- about a moderate period amount. My doctor said another 1-2 weeks is normal. I didn’t have anything removed and no endo was found, and I’ve been back on birth control since 2 days post op. Part of my prior symptoms were bad period cramps and unpredictable period length. I thought being back on birth control would pause it but now this just feels like a really long bad period. Did anyone else bleed this long post op?

My legs have been feeling especially restless lately and it’s impacting my sleep. Besides compression socks and propping your feet up, what has helped improve your symptoms? I got an ad for the Sooth Silk contouring device which claims it works better than compression socks. Anyone use that? Or any specific exercises, red light therapy, supplements, etc?

I’ve spent the last few years thinking I had endometriosis, but after finally having a diagnostic laparoscopy, there’s no endo and it’s looking like an issue with ovarian veins. I feel like I’ve wasted so much time and money treating a condition I don’t even have. So now that I have to pursue this route, can anyone share any good resources for managing pelvic congestion? I’m already scheduled to see an interventional radiologist, but it’s a few months out, so I’d like to try and manage these terrible symptoms, on top of a laparoscopy recovery.
What are your favorite podcasts, foods to eat/avoid, activities to do/avoid, support group, anything? I’m feeling pretty overwhelmed and just want to start somewhere to work on managing this pain.

I have face, neck, ear, and chest flushing with heat, hormonal changes, high histamine foods and alcohol, stress, exercise, and bending down/leaning over where my head is not the highest point of my body if that makes sense. For those of you whose main symptoms are skin related, what medications work best for you? The Pepcid/citirizine combo is okay but doesn’t do too much for me. I’m curious if there is an MCAS med that seems to work best for skin issues.

Can anyone recommend an interventional radiologist in California? Perk if they’re educated on MCAS!

I just received normal bloodwork for the following:
-tryptase
-immunoglobulins
-IgE (normal but low)
-CBC with diff/platelet
-ANA (negative)
-Lupus (negative)

Does anyone have suggestions on next steps for diagnosis? Any suggested tests?

I’m looking for a recommendation for a reproductive endocrinologist in California who can help manage endometriosis. Thanks!

A few questions about post op below. Obviously I know everyone’s recovery is different but I’m trying to also plan and be prepared for my children’s end of school year obligations while I have a very unreliable ex partner who can’t commit to helping…

How long after your laparoscopy did you feel comfortable driving?
How long after could you shower and do your hair independently? My hairdresser offered to do a hair wash only appointment post op but I wasn’t sure if this was necessary?
Also, I have a couple end of school year events that I don’t want to miss but I am trying to decide if it’s realistic to attend or if I need to plan on someone else being there for my children? I’ll be one week post op. Their other parent is unreliable so I just want to be prepared with backup help if this might be unrealistic.