Effects of Ehler-Danlos Syndrome (EDS) on the Reproductive System

[Frost]

Hello All,

I have EDS (classical and hypermobility overlap) and am male. While searching the internet, for relevant scientific research, I have found nothing on possible effects connective tissue disorders, such as EDS, could have on the human reproductive system. It is perhaps not surprising that this has not been investigated, since EDS is considered to be rare, and the human reproductive system is kind of a semi-taboo topic.

So, I will go ahead and list some of the unusual features that I have noticed on myself, that I think are possibly related to EDS. Here it goes.

I’ll start with ANATOMY.
(1) Penis:
(A) Has significantly above average length, and width, both when flaccid and erect.
(B) When erect, it has an unusual curvature: when looked from my perspective, it is “concave down”, with a significant curvature. This banana-caricature photo explains what I mean by “concave down”: “http://i.kinja-img.com/gawker-media/image/upload/oljsnmuzgbra4qqbtwek.jpg” . The banana on the LEFT is concave down. Intuitively, it seems to me that guys with “healthy” connective tissue tend to have “concave up” curvature (the banana on the RIGHT in the photo).
(C) Is extremely flexible – when flaccid, it can be “extended” A LOT, without any pain.
(D) The “texture” seems “sparse”, as opposed to “dense”, i.e. it seems like there is “less tissue” in the “penis body”.
(E) The penis glans seems smaller than average.
(F) The “penis frenulum” seems weaker/thinner than normal.
(2) Scrotum: has way too much skin (excess skin), and the skin is SUPER-FLEXIBLE, without any pain upon extension.

Now, I’ll proceed with (mal)FUNCTION.
(1) Erections: upon reaction the erect state, it seems that the blood can flow out of the penis much more easily than it should, which can result in rapid loss of erection. It is much more rapid than in normal guys.
(2) Dryness: there seem to be much less fluids produced both (A) on the penis surface, and (B) produced internally (such as pre-ejaculate).
(3) Sensitivity: it seems that the penis is less sensitive to physical stimulation (both when extended, or during sexual interactions).
(4) Orgasm: generally harder to reach than average, possibly due to the already mentioned properties.
(5) Ejaculation: I suffer from retrograde ejaculation (it proceeds BACKWARDS in the bladder, as opposed to FORWARD to the penis). Though, in my case, that could be arising from damage to the nerves in that region from having a urinary catheter once when I was very young.

I would be interested to hear if any of these traits (or analogues) are shared by other males with EDS (and females with EDS).

My hypothesis is that these traits are more common in EDS. In particular, thinner (or even a lack of) frenulum in mouth has been observed in EDS patients, so it is plausible that this may be generalized to other body systems. Also, the curvature of penis might be analogous to the curvature of the eyes: it is known that EDS patients tend to have the “antimongoloid slant” (concave down) eyes (see “http://plasticeyesurgery.com/wordpress/wp-content/uploads/2014/04/canthi-mongoloid-slant.png”), and maybe the same goes for the penis curvature.

[Dr. Diana]

What a fascinating question! I am eager to hear from others on this. I would add another question — some of us have stretchy skin, and a skin biopsy indicates abnormal collagen. We may have Classic EDS, or some sort of overlap syndrome — it is hard to know. But if the skin biopsy indicates the abnormal collagen, could those patients be more affected with what you describe? I wonder if you have had a skin biopsy? Thanks for sharing!

[Frost]

What a fascinating question! I am eager to hear from others on this. I would add another question — some of us have stretchy skin, and a skin biopsy indicates abnormal collagen. We may have Classic EDS, or some sort of overlap syndrome — it is hard to know. But if the skin biopsy indicates the abnormal collagen, could those patients be more affected with what you describe? I wonder if you have had a skin biopsy? Thanks for sharing!

Thanks for the reply!

My guess would be that, indeed, if the skin biopsy indicates the abnormal collagen, then the traits I have listed would be (more) observable. In other words, I think that most of the effects of EDS on the reproductive system that I have listed are due to stretchy skin.

Unfortunately, I did not have a skin biopsy. I have seen 2 rheumatologists: one who is very knowledgeable, and who said I have an overlap between classical and hypermobile type, and another who is not very knowledgeable, and who said I have the hypermobility type.

I personally think I fit the classical type more. The reason is that my skin is quite elastic, my hypermobility is very extreme in fingers, hands, and feet, but not much elsewhere, and I experience only a modest amount of dislocations and subluxations, and they are practically pain-free (which is in contrast to the typical hypermobility EDS type).

Currently, I am suspected to have a mutation on COL1A1 or COL1A2, so that I would have an EDS/OI (osteogenesis imperfecta) overlap, since my bone density is very low. These genes are now being sequenced.

As a side note, my sister displays very similar traits to me, and she also seems to have many analogue traits with her reproductive system!

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