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Having Ehlers-Danlos syndrome . Concerned about a sudden dissection in case of sexual activity

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Practicing since : 1981
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I am an Ehlers Danlos hpermobile non vascular patient. In less than one year my aorta went from 3.0 to 3.5. My worst fear is a dissection. My question is, is sex and masturbation XXXXXXX for me? Should I stop? I haven't done anything sexual now in weeks because I'm afraid of causing a sudden dissection or tear or something. Also what can I be doing between dr appointments to stay as safe as possible from this.
Posted Tue, 26 Jun 2012 in Hypertension and Heart Disease
Answered by Dr. Anil Grover 6 hours later
Thank you for writing in.
I am a cardiologist and will try to address your concerns.
By now, you must be aware that Ehlers-Danlos syndrome is a heterogeneous group of inherited connective-tissue disorders, out of 11types only in type IV disorder aorta is affected. (There is some overlap between the types also).

As you had mentioned increase in aortic diameter from 3 to 3.5 it appears that it is affected. Again, severity differs widely. It is determined by echocardiography & Doppler examination, which shows leakage of aortic valve- aortic regurgitation.

Cardiologists, when confronted with this, use drugs to keep blood pressure on lower side as well as prevent upsurge of blood pressure in stressful or anxiety provoking situations. Commonly prescribed drugs are combination of alpha & beta-blockers and vasodilators. I am sure this aspect has been looked into by the cardiologist who reviewed your echocardiography and done the physical examination.

Normally, sexual intercourse with a regular partner in comfortable private surroundings or masturbation does not cause upsurge of blood pressure. Rather abstinence is more likely to cause anxiety. Therefore, I will urge you to spend your life the way it is comfortable for you. Doctor's appointments are going to stay and your normal life should not "stop" because of either the disease or its consequences.

Let me assure you, rupture of aorta is very very rare phenomenon and the chances that you will have it are next to nil. I hope I have been able to convince you on that count.
If you have any follow up question, I will be very happy to answer it.
Best Wishes

Dr Anil Grover
Above answer was peer-reviewed by
Follow-up: Having Ehlers-Danlos syndrome . Concerned about a sudden dissection in case of sexual activity 24 minutes later
I do not have vascular EDS. I was tested you for the vascular type (COL3A1 gene) and it was normal. How ever my aorta has grown from 3 to 3.5 in just one year. I do however have a pretty severe anxiety disorder as well that has developed over the last 2 years. I'm not sure what to think about all this just yet. As I mentioned I don't feel safe from a dessication most of the time. Especially when I have a cough. But if you are positive that I am safe from this at the moment I would appreciate your reassurance.
Answered by Dr. Anil Grover 16 minutes later
Thanks for a prompt response.
True. As in EDS, connective tissue of whole body specially blood vessels only in certain type or when there is overlap of two types you have involvement of aorta leading to dissection, precursor of which is Aortic Regurgitation. Upper limit of aortic root size is 35 mm thus that also falls within normal limits. With your fresh input, I can safely say that you are safe from Aortic Dissection. You have to see your cardiologist and ensure that there is no abnormal increase in aortic root size. For this an yearly echocardiography & Doppler examination after physical examination may be advised.

For the anxiety, get your doctor to prescribe a mild anxiolytic for you. Rest assured with the all the valuable information you had provided and reiterated you are not going to suffer from aortic dissection. Nonetheless, keep followup with your doctor on yearly basis. I hope that is reassuring enough.

If there is any further clarification, I will be most happy to provide.

Best Wishes.

Dr Anil Grover
Above answer was peer-reviewed by
Follow-up: Having Ehlers-Danlos syndrome . Concerned about a sudden dissection in case of sexual activity 8 minutes later
Thank you for that. I can sleep better now.
Answered by Dr. Anil Grover 8 minutes later
Thank you and take care.

Good Night.

Anil Grover
Above answer was peer-reviewed by
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