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JanetM

Pots Better Or Worse After Hysterectomy??? One For The Ladies!

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Hello my Potsy friends,

Have not posted in long time but often read all your posts!!!

Hoping someone can help me?

I Have a high family history of ovarian cancer and am considered high risk. I have regular checks but have been advised that the only way to be 100% safe is to have ovaries removed. As things stand I have a very difficult time with my POTS symptoms just before, during and sometimes after my period and during ovulation. In fact I only get one "good week" a month. I know that progesterone has a big part to play in this so my question is what happens after surgery? Has anyone had it done and what way did they feel after? I am 42 years old and have had my family.

Would I automatically have to go on HRT? Would that cause more POTS symtoms?

I Hope one of you can help and, as always, am so so grateful for any help.

Hope you are all having a good day x

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Hi Janet

I had a hysterectomy in 2008 (34yrs old) I had been experiencing various POTS symptoms for about 1 year prior to my surgery (nothing debilitating at the time).....in my case I went completely downhill about 2 weeks after the procedure....I kept my ovaries(now I wish I didn't ;( think it would have been better just to be on HRT...) but at the time I thought perhaps they had just gone into shock and my gyne would not put me on any type of hormone to help ride it out....from that point forward I continued to get sicker and sicker until I completely went into system malfunction in February 2011....so in my case the surgery did not have a good effect on my POTS....but I cannot say for sure if it would have gone that way regardless if I had the surgery or not? it could have been just coincidence...... your outcome could be completely different......good luck in whatever you decide :)

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This is such a great question! Thank you for asking!

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I'd like to know as well, since I haven't had a response to my hormone question posted earlier this week!!! I don't have POTS, just NMH, but doc thinks that my symptoms are worse around my period b/c of excess estrogen. We joke about pushing me into earlier menopause, but that might be on the table if it would be effective!!!

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Interesting... my experience is very similar to Brethor's.

I had fibroids, endometriosis and had had several episodes of ovarian cysts, as well as very heavy periods. I thought a hysterectomy would help with my increasing problems of chronic fatigue - pre-op I was still functional and worked a demanding full time job, but was utterly exhausted all the time.

I had the hysterectomy, and they took my ovaries, too - I didn't give it much thought b/c I figured I could go on HRT and I was so tired of the ovarian cancer worries. Post hysterectomy, of course I was thrown into immediate menopause (I was 45 y.o., so pre-menopausal). I started taking HRT to help with menopause symptoms- the occasional hot flash wasn't bad, but my anxiety, depression and awful insomnia were intolerable. Even though I seemed to heal very quickly physically (the op really wasn't that painful), I just was feeling worse and worse from a fatigue point of view. Within about a year, my health plummeted - I started having the dizziness, weakness & vertigo that still plagues me. At best, I can work very part-time, but there's many days where I can't leave the house. I've since been diagnosed with neurally mediated hypotension (not POTS), but I don't think it explains all my problems. I sometimes suspect that the HRT is not helping, and I've tried to take less, but it's no exaggeration to say that when I don't take it I am so anxious and depressed (and sleepless!!!) that I feel absolutely suicidal.

Long story short, I think the hysterectomy, or maybe the instant menopause, was too much for my system, which was clearly not well anyways. I have no idea if I would be this bad had I gone through menopause naturally? Also, if that's true, why wouldn't the HRT resolve the problems?

More questions than answers, I know. I don't mean to discourage you from having the operation, and am very sympathetic to your ovarian cancer concerns. Some women feel fantastic after a hysterectomy - unfortunately, I wasn't one of them!!! I just thought it might be useful to include my experience here.

Good luck with your decision, and keep us posted.

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I have a high family history of ovarian cancer also but did not know this when I had my hysterectomy. My ovaries were left & now wish I had had them out. I immediately went downhill, even before I left the hospital after surgery. My gyn told me that with my family history of OC that I was also susceptible to breast cancer & I should never take HRT. I don't know if all dr's believe this way or not.

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I had a sub-total hysterectomy in December 2010. I haven't noticed any change in POTs symptoms but it was the right thing for me to do for my general health. I still have my ovaries and cervix, they just took my womb. I had a bicornuate uterus with a closed right horn and I had severe pain every cycle. I also had endometriosis and a lot of adhesions which had stuck my bladder in the wrong place and prevented me from emptying it properly. I no longer have excrutiating pain every month and my bladder is much better.

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I had similar issues as clair with endometriosis and had 2 ablations so that I would be free of the uterine lining. I don't have periods at all, and it has helped my pots a lot even though I have my ovaries and hormones. I don't get the fatigue nearly as bad, and for whatever reason I don't get monthly pain and cramping. I have a friend who had a total hysterectomy and she got worse with her POTS afterward. They put her on HRT, which helped her moods/mental status but aggravated her POTS even further. It took awhile for her to experiment with the doctor to find the lowest possible doses that balance out her moods without making her bedridden with POTS. I wish she would get on here and tell you about it! she's resistant.

I also have very low estradiol naturally since I got POTS, and my doc theorizes that's why I don't have the monthly issues associated with hormones that a lot of women do. I wonder if that plays a role in the hormonal issues that aggravate POTS?

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I've had life-long low grade symptoms (probably related to EDS-HM) but was totally functional, working 2 part-time jobs etc until I had a hysterectomy for an ovarian mass. Kept one ovary and started on HRT a week post-op which has helped with moods and hot flashes but all the POTS stuff started post-op day 2 after the hyst. Never got back to my "prior functional level" after the hysterectomy.

Everyone is so different though that it's impossible to predict what will happen in your situation based on what happens to those of us who respond on here.

I will say that it has been a HUGE relief not to have the massive bleeding issues, the mood swings, the major energy drain that it felt went along with every cycle I was having. The HRT patch I'm on makes all that stuff feel so stable (for lack of a better word) compared to what I'd experience my whole life. So that part of having the hyst. was worth-while. The POTS part...is the pits. :P

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Hello,

I had a complete hyster keeping one ovary March of this year, alot of my POTS symptoms have improved. I had the hyster due to a (what appeared to be solid mass on my ovary) once in surgery found out it was endo but prior to my surgery I discussed with the doctor to just remove all try to save one ovary because my monthly cycles were so severe with fatigue and dizziness general weakness ( not anemic) I was completely drained every month and it seemed my body was just giving up. Since surgery I only had headaches the first few months during cycle times no other major problems hormone wise, my ovary is working as normal. I have gotten color back into my face I am able to walk further distances...But I am early on its been alittle over 6 months but I am glad I did it otherwise I don't know how bad I would have gotten the funny thing is when I 1st got very ill with POTS it happend with my 1st regular cycle after giving birth and I kept begging for my doc to give me a hyster because I thought thats where the problem was stemming from and they wouldn't do it 4 1/2 years later they finally did, I had hoped that surgery would just cure me but thats not the case but I do see an improvement.

Lissy

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I think it depends on the person so it's hard to predict. In my case I am much better.

I didn't have my uterus removed just the ovaries. The things is with me the reason I had it done is because the fact that I was having more and more issues with my period being irregular and PMDD. And when I would have my period It would increase my POTS symptoms to the point where I could not get out of bed.

Every period it was getting worse and worse.I had suspected hormonal issues causing some of my problems for a while and it was becomming intolerable for me. After trying several things over the course of a few years, The doctor suggested a hysterectomy, but he wanted to take out the uterus and leave the ovaries. To me it didn't make since because although it would stop the bleeding every month I'd still have the ovaries so I'd still have the hormones causing problems.

So I started looking up alternatives to hysterectomy.I read about a drug called Lupron and from what I read on it it sounded like it was right for my problem. So the doctor thought I had a good point ( this is the only doctor that ever really worked with me like this . I wish they all were like him) He also thought since the Lupron mimics Menopause since it lowers your hormone levels, it would be a good test to see how I'd do with Menopause.

I would have just stayed on Lupron but you can only take it for like 6 month at a time and then you have to give it a rest for 6 months.

So anyway, After I took the Lupron I felt great. My POTS symptoms were greatly reduced at that time of the month. I was also much calmer since the irrgualr periods would give me such PMDD.

So after a 6 month test we decided to remove the ovaries and keep the uterus.

I of course went through Menopause. I had hot flashes and some mood swings. But not bad compared to before the operation. And the POTS improved. For a while I had more anxiety and bad hot flashes were I couldn't even stay asleep. So I went on HRT for a while. A small dose. That settled things down .I got off of them about two years later.

All in all it was good for me. I had some ups and downs but nothing compared to what I went though prior to the operation.

So, that's my story.

I would really do some research if i were you. Go to surgical menopause sites and talk to others. read about it on medical sites. Find out exactly what you're symptoms are. I really had to get a lot of information before I would consider the surgery.

I had tried everything else I could first .But nothing helped until the Lupron. I'm not recommending it as the cure. For some people it helps and some people it makes things worse. It all depends on your situation. In your case you are considering the operation because of Cancer, which is very different from my case.

For me it just happened to work but everyone is so different when it comes to hormones, so research.

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Thanks for all the feedback on this post; it really helps. Curious if anyone who responded went through comprehensive hormone testing BEFORE the hyster or the hormone treatment. My holistic doc and I are working on two -- one was a snapshot estrogen test (pee in a cup one day a month), the other one is looking at all my hormone levels over my cycle.

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Thanks for all the feedback on this post; it really helps. Curious if anyone who responded went through comprehensive hormone testing BEFORE the hyster or the hormone treatment. My holistic doc and I are working on two -- one was a snapshot estrogen test (pee in a cup one day a month), the other one is looking at all my hormone levels over my cycle.

I had saliva testing done but it was about 5 years before the hyst and not "comprehensive" I don't think.

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Thank you all so much for your stories/input. Wow what a mixed bag! All interesting stuff.

I suppose the real answer is nobody really knows how any one person will react. Am meeting with my POTS doc on Monday and will be interested in her opinion. I am praying that it improves my symptoms, which are horrific when I have a period!

I will keep you all posted on any developments! Again many thanks to you all and hope you are all having a good day x

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Janet, do keep us posted. I don't have POTS, just NMH, but my bp tanks just before my period and a couple days into my cycle. And the moodiness, hot flashes, crushing fatigue and lightheadedness is putting me in bed. So, my holistic doc is really concerned that my cycle is taking such a toll on me. We're in the testing phase right now, so I'll keep you posted on what my doc has said as well, and maybe we can exchange ideas, etc.

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I had a complete hysterectomy on April 30th of this year, due to pelvic congestion and many other nasty symptoms. We decided to take both my ovaries because both ovarian veins were dilated very large, even after embolization. I also felt like I was on a roller coaster every month with the hormonal ups and downs, and it was causing the POTS to go up and down too. I did pretty good until day 4 post op and then I got a huge wave of anxiety, insomnia, almost manic type episodes, along with joint pain and hot flashes. I am so sensitive I think to any changes in my body, so even just after few days I was really feeling mental, even suicidal. I had to keep telling myself that it was just the hormones, I am only 29. I called the doc and he put me on an Estropipate .75mg right away and then a few days later I felt more stable. Physically I am a little better. Prior to surgery I would actually tilt the foot of my bed up, because I was starting to have dizzy spells in bed. I don't have to do that anymore. I breathe better, I have more energy, and I feel stronger. I believe it was a good choice for me. Although recently I have been having horrible spells of adrenaline. I suspect it has something to do with the estrogen and lack of progesterone. I haven't ever had an adrenaline surge like this. I feel like it's been gradually worsening over 3-4 weeks. It is so bad now that I wake up with acid up my nose, I have constant nausea, I want to eat constantly even though I am sick to my stomach, anxiety is out of control, insomnia is back and I feel absolutely horrible. I am getting so stressed over teeny tiny things. I know estrogen and progesterone all affect adrenal hormones too, that's why I am pretty sure that this is all caused by some sort of imbalance.

I think all in all, we react differently, just do your best to make an educated decision for yourself, one your confident in. Even though I am having a hard time right now with the hormones and I feel absolutely miserable and on the verge of being a crazy person, I truly believe I made the right decision. One step at a time I will face each symptom and hopefully gradually get myself feeling better. I am still bedbound, but I have made progress, I hope that one day soon I can start getting back up again :)

-Andrea

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I am paying lots of attention to the hormone issue right now-- and wondering what's the point since there seems to be no pattern in the reports!

When I was around 40 I had a big improvement in my dysautonomia (more on that another time; I attribute it to C-spine surgery and compression stockings) but around my period it would get way worse again, especially fatigue and OI. My doctor and I decided to give low-dose birth control pills a try, to "even out" the hormone fluctuations and keep my blood volume from bottoming out (that was my thought anyway).

I felt worse than ever, and quit the pills after 12 days, end of experiment.

Fast forward to now, I am 52 and menopausal-- not officially because it's been less than a year since my last period, but this is the longest interval yet, my hormones totally look postmenopausal (2 years ago they were quite the opposite), plus, I have hot flashes all the time.

Back to the dysautonomia, and why I'm paying attention-- after having had further improvement at about age 48 (even weaned off the compression hose), now this year, I am in a huge relapse. It coincides with menopause; what does that mean? None of my doctors are encouraging HRT but they are also willing to try it at low dose if I decide I want to.

I would love to hear anyone's experiences with regard to menopause and/or HRT and how they affected your dysautonomia.

The other reason I'm writing this post is for those with high risk for ovarian cancer: This is off topic, but please don't let anyone tell you oophorectomy makes you 100% safe from that! Technically you won't get cancer on ovaries you don't have, and it is now thought to decrease the risk by as much as 80 or 90 percent from whatever your personal risk level would have been. BUT there is still a risk of primary peritoneal cancer, which has the same biology, prognosis, and treatment. (Also sometimes a woman is diagnosed with ovarian cancer, then surgery reveals the cancer isn't really concentrated on the ovaries so the dx is changed to PPC-- this is what happened to my mother, who still had all her organs before the cancer.) A good summary is here http://www.mayoclinic.com/health/breast-cancer/WO00095

I feel for all of you who have this decision to make-- my family members have been there, and I have been there with respect to other "elective" surgeries-- it is no fun and I wish you peace and strength.

Carolyn A. in Tucson

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Thanks for posting this info, Carolyn. I've never heard of primary peritoneal cancer, and at this point, with no ovaries, I'd be inclined to completely ignore any ovarian cancer-type symptoms that I would have worried about pre-hysterectomy. (I'm not saying I have any symptoms now, but it's so important to know what to watch for!) I had no idea. I'm very sorry to hear about your mother having this disease.

I agree that it's hard to draw any conclusions from these posts suggesting which hormonal changes might bring on POTS (or any dysautonomia) and which might help alleviate them. On the other hand, I feel like these experiences show that hormonal changes can definitely be triggers. (Re: my own menopause experiences, see my post above.) I wonder if you would tolerate a very low dose type of estrogen? I personally feel like my body isn't happy with the HRT (I take Premarin, which is the worst, but it's all the NHS offers me), but the insomnia and depression without it are unbearable.

Good luck and keep us posted.

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