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Does anyone have any info on pelvic vein congestio


hilfgirl33
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Well, On top of POTS I live with what is becoming almost daily pelvic pain. I have endo and adhesions from prior surgery that was witnessed on my c-section with my son but now I have been dx with something called adenomyosis, an enlarged uterus and a bulging disc at L4-5 per an MRI I just had.

My GYN said that the most effective treatment is hysterectomy, with the second being uterine artery embolization and the third being symptomatic treatment with bcp's (yeah, right, can you say palpitations)....

Anyway, My cardiologist had told me previously that John Hopkins was doing uterine artery embolization to treat POTS (very controversial though), and in my wildest dream I have hopes that this may cure me. I had asked my GYN about it and she poo-poo'd the idea and since I really am scared literally to death about having surgery again I went with that.

I am seeing a uterine artery embolization specialist in consult as soon as I can get an appt. Just wondering if anyone has any info that links these two...or if anyone has similar problems that could link this all to pots?

Thanks for any help!!

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You might want to read:

http://www.ncbi.nlm.nih.gov/entrez/query.f...t_uids=11830623

(Dr. Rowe is a pediatric dysautonomia doctor, though he is not accepting new patients)

&

http://www.ncbi.nlm.nih.gov/entrez/query.f...t_uids=10749295

Some doctors have been quick to poo-poo the idea. Ultimately, we could use some more research in this area.

I have some info that Dr. Takahashi sent to me re: nutcracker phenomenon. Let me know if you want it and I will email it to you.

Michelle

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as a person who had adenomyosis and severe pelvic congestion, i must say a hyst was the best thing i ever did for myself. but that was in 86 and things have advanced so much, it's hard to say. i think a lot depends on age and other factors. i now wish i would have had my ovaries out too because they give me all kinds of problems, but hindsight is always 20/20. i have seen these procedures, but do not know a lot about their effacacy. endometrial ablation has become quite popular and is much less invasive. usually outpatient, but that's for the normal folks. good luck. morgan

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My one sister does not have POTS that anybody knows of though NCS/POTS runs in my family but she was diagnosed with fibromyalgia and had adenomyosis herself. She is 42 and recently had a subtotal hyst (ovaries left in) with a partial hemicolectomy for bowel perforations from diverticulosis/diverticulitis. Maybe I could hook you up with her e-mail address to talk to her if you want? At least she could give you the heads up on the hyst part if you are interested. It got so bad that she was in constant pain too and she had some kind of polyp or something inside her uterus too and it began to put pressure on her bladder and she started having incontinence problems, etc. It was a really hard thing for her to go through but she is defin. feeling better.

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Thanks for the info. Morgan, just wondering how you were diagnosed with the pelvic congestion syndrome? It seems like this is a controversial thing in relation to both pelvic pain and POTS.

Thanks for all the info and links...

I will post what I find out when I see my first Interventional Radiologist next Monday.

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