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Endometriosis And Autonomic Dysfunction.


cardiactec

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Hey all,

just wanted to know if any of you had endometriosis along with your auto dys? i have endometriosis and POTS and my cardio thinks that there is a link btwn endometriosis and auto dysfunction....

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Interesting. Endometriosis is VERY common--and likely underdiagnosed, since it really cannot be diagnosed definitively without exploratory surgery, and does not always cause symptoms. Does this mean that Autonomic Dysfunction is very common as well? I would be interested in seeing this supported with some published research.

I don't know if I have endometriosis or not.

Katherine

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I had endometriosis... Had a hysterectomy when I was 36. My dad raised me so I was in my 20's before I realized it was not normal for a period to put someone in bed for 3-4 days a month clutching a heat pad!

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a few well known docs/neuro's have told me autonomic dysfunction is now a very common condition, only because more people are finally being diagnosed, compared to 20 years ago, not a lot of people were diagnosed because many medical professionals didnt even know there was such a thing as auto dys.

yep, i was diagnosed by laparoscopy. wierd though cuz my primary symptom was nausea and not necessarily pain (although i did have some pains as well).......most likely the nausea was from the POTS/gastroparesis which hadnt been diagnosed with me yet......but everyone jumped on the banwagon with the endometriosis diagnosis for the cause of all my nausea (after a lengthy GI work-up revealed nothing of significance, MINUS the GI motility study which they actually JUST did on me that found paresis)........so they put me on birth control pills to help with the nausea, didnt work.......finally two years after the laparoscopy and endo diagnosis, they found POTS and most recently gastroparesis.

my doc is looking into research/published research on endometriosis and auto dys......

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Interesting that you brought this up. I had laproscopy on June 28 and was confirmed to have endo. My POTS symptoms started right after the surgery. I didn't have problems before. It would be interesting to know if the endo. made me more susceptable to developing POTS or if it had nothing to do with it....

Holly

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I have a hx of endometriosis and fibroids and had surgery about 15 years ago. I had my second bad flare up of CFS at that time. There has also has been research showing many CFS pts. with endometriosis. I had a lot of nausea, vomiting at the time and back pain real bad. When they did the surgery, the scar tissue was considered extensive and fibroids were growing.The one hour surgery turned into almost 3 hours! It then took me several months to recover from CFS symptoms.

I am not sure about the connection with POTS, but just thought I would add this comment as I know many also have CFS and or FM as well.

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My question about autonomic dysfunction being common was a bit tongue in cheek--just to clarify. <_<

My POTS doctor has also said he believes autonomic dysfunction to be common, just under-diagnosed.

I guess I would need convincing with some kind of study that the two are connected, since the two are also probably fairly common conditions.

Katherine

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Funny you should bring this up, b/c I know now that my periods from h-e-l-l with white outs, etc were autonomic reactions to my period.

I had 3 surgeries for endo. The last one had so much scar tissue/endo that they had to cut my bowel loose from my abdominal wall. The scar tissue remains to this day.

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Not sure about the endo connections but we know female hormones, and more importantly the FLUCTUATION of them can alter symptoms drastically.

But we know little about female hormones and how they changed from minute to minute, and most docs know NOTHING or very little about ANS.

My endocrinologist and ANS doc was the first to CONFIRM years ago my perimenopause age (40's and still regular periods) could be adding to this...after all..read about perimenopause symtpoms and the CAN sound like POTS...tachycardia (due to low estrogen or surges) nausea, dizziness or lightheadedness, etc.

I have had a few surgeries and after a recent ultrasound hope to have some small fibroids and polyps removed. I have not had endometriosis though it was suspected years ago.

so with all the hormonal disruption of endometriosis, it makes sense of the connection.

<_<

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Have had Endometriosis since 16. Have had POTS since 32. I don't think they are connected. It is heck living with both though. Did someone say Endo has no symptoms? Oh if that only were the case! I'm still trying to find effective pain relief that plays nice with POTS and POTS meds. If anyone has found anything, I would sure love to know!

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I have had PCOS since periods started at 11 as well as endo. I also have a very low oestrogen output and high progesterone when it shoould be low and vice versa.

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I had a hysterectomy at 30 for endometriosis. I am fully convinced that my autonomic dysfunction and endo were related. Do I have research to support- no, but in my case when my body "fell apart" the first thing to go were the gynecological parts, followed by neuro, then cardiac. So, which came first the chicken or the egg? Who knows, but in my case I think they were definitely related. Interesting question and answers (chances are we are all right to some degree).

Carmen

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There is a book I have, about 10 years old called LISTENING TO YOUR HORMONES..about the changes we go through in our 30's and 40's.

I tell you..you read about the brain fog and dizziness and tachycardia...could be pots.

Female hormones throw a boomerang into many medical maladies including this one.

Sophia

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hi, i was just wondering what the symptoms are for endo?

i'm due to see an endocrinologist on thursday and he thinks that i have PCOS however my hormones are all normal as far as i know, i have excess body and facial hair and i have been lactating for two years. i have also had terrible stomach and back pain for over two years which now seems to be getting worse, with the last two attacks putting me in hospital - the doctors are telling me that this is down to everything from post viral fatigue to PCOS. the pain is always around my belly button and on the right hand side a bit lower and feels as though i'm being stabbed. the pain in my back is so severe that they put me on a surgical ward last time because they were convinced i had a severe kidney infection - but as yet they've found nothing.

The only test i've had for my stomach was a pelvic and kidney ultrasound which came back clear, do you have to have a laporoscopy to diagnose endo?

If anyone can answer me i'd be so grateful, i am so down at the moment, my stomach and back pain seems to be aggravating my pots and i can't stop passing out or having palpitations, i feel like i'm going backwards, and as for mydoctors, well you can't swear on this forum so i have nothing to say!!!

thanks becks x x

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  • 2 weeks later...

I have endometriosis and have had a full complete hysterectomy at age 24 I am almost 40 now.

I don't know if there is a connection or not. My endo suggested that I wait to take my HRT because the estrogen may make the autonomic problems worse and the autonomic Doc said that the HRT may make it better. All I know is that I wish all my docs would sit down and talk to each other and stop having me in the middle.

As to answer the question- Laparoscopy only way to dx the answer is only surgery can give the docs the inside view to see if you have it or not. As far as I know they can guess but until they look they really don't know for sure. I also know that being pregnant retards the growth of endometriosis and after my hysterectomy the gyn didn't want me to take HRT right away so the endometriosis would die off.

So, what I am thinking is that maybe the estrogen hormone may be the common link.

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