Hysterectomy And Onset Of Pots

[Green48]

Hi,

My neurologists and cardiologists think my vistibular symptoms (severe migraines-vertigo, dizziness, syncope, loss of vision and hearing, head pain) and POTS are being caused by hormonal flucuations. I can not take homone replacement (we have tried several brands) for it gives me terrible and presistent vertigo. Has anyone else been told their POTS may be caused by hormonal flucuations? Has anyone developed POTS after having a hysterectomy? My symptoms started one year post hysterectomy (we left the ovaries in).

[brethor9]

Hi Green

Yes....I completely crashed after my hysterectomy in 2008 (also kept my ovaries) I had been having milder symptoms for about a year before surgery and we were hoping that it would resolve after but it actually made everything much worse. My autonomic specialist said he has seen many patients who have onset of dysautonomia/POTS after a major surgery or trauma. I also cannot take any kind of hormonal intervention so not sure if it would help my POTS. I have also been diagnosed with mast cell illness (likely dormant until surgery also) and EDS (Ehlers Danlos Syndrome) fairly recently so they play a major factor in symptomology for me also.

[Chaos]

My POTS started after hysterectomy- within a week. I am on a patch for estrogen replacement and while it has helped, it's not cured the POTS or anything else. My POTS neuro thinks the surgery was the trigger more than the hysterectomy itself was for starting it all.

Sorry you are having such a struggle. Hope you can find some answers and support here.

[Green48]

Thanks for your replies. I keep thinking if I can figure out what caused the POTS, I can some how wrap my brain around it better.

[angelloz]

My began with menopause....4 years later I'm still not better.

[gertie]

When I read your post I thought for a moment I had written it. After my hysterectomy, (kept ovaries), everything went

downhill from there. Like you I can't take hormones because of migraines, seizures, & vertigo. I really believe that's when

my Dys/pots started, altho I can't prove it.

[blueskies]

Some of my symptoms got worse going through menopause. Which makes sense. (A person I used to talk to on a now defunct forum told me that Dr Grubb had told her to expect that symptoms might return for her during menopause -- she was doing well by that time. He was just warning her I guess). The thing is menopause is pretty much over with me and I don't feel any better -- most of the symptoms have stayed worse. it's like my menopause gave pots a boost.

blue

[khaarina]

I got on birth control pills to "balance my hormones" because my POTS symptoms were so much worse around the time of my period. I forgot to renew my script so when it ran out I had to wait for my next period to start the pills again. Many of my POTS symptoms and apparent hormanal symptoms got worse (not just during my period) and I realized that I probably have a hormonal imbalance and have probably had it for years. The hormonal symptoms started at least 5 years ago, and I am wondering if it was caused by the Essure procedure (a permanent birth control method where coils are implanted in the fallopian tubes to block them) I had done 8 years ago. I have a feeling this is all connected but have no way of knowing for sure.

[targs66]

Amazing - I had no idea that so many people (well, women anyways! ) had problems post-hysterectomy. It's not like I was healthy b/4 my total hysterectomy in 2007, but I went from being a very tired person who still could work full time, ride horses, socialize, etc. to barely able to manage a trip to the grocery store most days. At least I WASN'T DIZZY back then I don't think it was just the surgery that did it, to be honest - I think it was the hormonal change. That also makes sense to me given how many women have dysautonomia problems around menopause. I've struggled with HRT - I'm definitely of the "can't live with it, can't live w/out it" variety. I'd like to stop taking it but the unbelievable anxiety, depression and insomnia are unbearable.

I'm just so hoping that I can find some sort of "balance" again....

[Krys]

On 5/21/2013 at 6:37 PM, Chaos said:

My POTS started after hysterectomy- within a week. I am on a patch for estrogen replacement and while it has helped, it's not cured the POTS or anything else. My POTS neuro thinks the surgery was the trigger more than the hysterectomy itself was for starting it all.

Sorry you are having such a struggle. Hope you can find some answers and support here.

I had a radical hysterectomy 2021 and had all the symptoms of POTS! Been taking 1mg of Estradiol 2x a day so far for 2 yrs now. My Tachycardia has been the worst of all the symptoms and finally got diagnosed 9/21/2023 with POTS! The last 2 years have been a nightmare for no one new what was going on with me and I thought I was just going crazy! I had also 2 partial mastectomies, gallbladder removal, and L Knee reconstruction. Been a very bad 2 yrs ! So when I got this diagnosis I felt better so now I can at least get the help I need! Well… I the guidance to adjust my life, to live with this. Seems that some big things are: stay away from carbs,  concentrate on the increase of your intake of salt (yes weird check it out) do some minor exercise (walks, yoga) stay cool!!!! Try not to over heat! I do some minor stomach crunches in the morning and or at night to keep blood flow in my abdomen. I concentrate on these things on a daily bases - it helps a lot…. Besides taking a meditation (25mg Metoprolol Tartrate as needed) and plenty of water! This was all told to me by My Cardiologist who I trust with my life! He is also my Dads Cardiologist whom he saved his life 2 yrs ago as well!  Something just to use as a guide line and if anyone else has any advice for me PLEASE Share! I will take any advice !!!! God Bless wish all the Best! 

[MomtoGiuliana]

Welcome to the forum.  You have been through a lot.  Glad you have a diagnosis and are able to get helpful treatment and guidance.

Here is more info about treatment that may be helpful:

https://www.dinet.org/info/pots/pots-what-helps-r100/

 

[Pistol]

On 8/22/2023 at 12:33 AM, Krys said:

(25mg Metoprolol Tartrate as needed)

Hello @Krys, wow, you really have been through the wringer! I remember how relieved I was when I got my official diagnosis - it was almost like FINALLY its real! 

You mention your cardiologist ( btw I am so glad you have a doc you can trust! ) has you on metoprolol as needed, but you also mention your tachycardia is very bad. I am not questioning his orders but want to point out that generally in dysautonomia beta blockers are more effective when taken regularly, on a daily or twice daily basis. POTS is an imbalance of the ANS, so taking medications the same time every day can help the body regulate. Having said that - many people take an additional dose as needed when symptoms flare.