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Pelvic Issues and POTS


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Hi all ?

Haven't been on the forum in a long while dealing with other health issues. Long story short over the last several years I have had to have some pelvic surgeries. Have had almost everything removed except 1 ovary that keeps getting masses. My question is to other ladies who have had pelvic issues do you notice if it makes your POTS symptoms worse? Up until 3 weeks ago I was mostly functional and suddenly went into full relapse. . Docs cannot figure out why except I have another pelvic mass and swelling...they say they dont think it is hormonally related but I wonder?  Would appreciate any thoughts ?

Bren

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Hi Bren

I am sorry to here you have been having problems. 

I have EDS and it's known that there are issues with organs. I had terrible periods over the years. I had an ovarian cyst that was about to rupture and my ovary was scraped that left a lot of adhesions. I continued to have problems and eventually at 38 I had a hysterectomy and the damaged ovary removed. I went onto oestrogen patches. All of my symptoms made my illness worse and even years later I have cyclic breast pain and more discomfort and gut upsets. I read my medical records from years ago and apparently I had endometriosis and no one told me. When I had the cyst I felt really ill. I am also prone to breast lumps. 

I hope you can get some help and support to feel better. 

Trish 

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Hi Trish ?

Thanks for replying! I also have EDS and mast cell illness. I have noticed everytime I had pelvic surgery that my symptoms would get worse but I eventually would pop back. I only have 1 remaining ovary that has another cyst on it and I do wonder if it is causing some hormonal upheaval. I also have endo... none of the docs think its related but I really wonder since it all hit at the same time... its so frustrating 

Bren

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There is no doubt in my mind that hormones play a role. Before my big pots flare... I had mennorhagia, d and c... Then trial of mirena iud. Then my pots flare. I'm hypermobile. Trying to coast to menopause without rocking the boat too much. I'm still a good ten years away

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Hi Bren!

There were some papers posted in the last 6 months or so regarding how female hormones effect POTS. My migraine is bad rt now so I can't research them but I will try to do that later. But hormones can effect POTS per those papers....I think they concluded that the hormones effect blood volume, bp, and inflammation all contributing to POTS symptoms. 

Glad to hear from you,

Katie 

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Thanks ladies! Katie I am so happy to hear from you also ? not glad that you are still struggling though.. hang in there girl! I would love those reference articles when you are feeling up to it.. have you come across anything mentioning pelvic surgeries etc affecting POTS. . I am so sure there is a correlation somehow and I need ammo for my docs ha ha

Bren

 

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  • 2 weeks later...

Hey Bren,

I had endo too. Had complete hysterectomy at age 36. Had to not go on hormones for 5 months so if any endo was missed, it would dry up. Otherwise you keep getting endo if any is missed. Almost lost it because of horrible menopause at such a young age. But it ended my pelvic pain and most of my GI issues. And there are massive adhesions with us with EDS. Seems MCAS has a connection with endometriosis. 

Later went on transdermal estriol - compounded and Red Clover. 

Sorry you are bad again. Last time I talked with you, you was better. 

Issie

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