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Pelvic congestion (syndrome) - just been diagnosed and would like to hear from others in similar circs.

9 replies

openerofjars · 06/08/2011 22:59

Well, after a year or so of ultrasounds, leaving it for another few months etc, I finally had a laparoscopy which my gynae consultant said showed that I have pelvic congestion.

I guess I'm mostly pretty okay with that as a diagnosis in that there are some amazing pros and some relatively minor cons: hooray, it's not cancer; bummer,it's not really treatable; thank fuck, it's not a made-up-all-in-my-mind-neurotic illness and, most importantly, it doesn't affect fertility. Still hurts like heck, though.

DH and I are currently TTC #2 (have been not using contraception for nearly 11mo now) and I suppose what I want to ask is if you're in a similar situation, or a bit further down the line, how did pg 2 go? Did you get pg again? Was it more painful than pg 1? How did you feel after having your baby? Were there any complications?

We're not going to stop TTC but I want to get pregnant again with my eyes open to what it might be like second time around with pelvic congestion this time (and nearly 3yo DS).

Any experiences, ideas, etc appreciated.

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KilledBill · 07/08/2011 11:25

Hi openerofjars -

I have this and actually you have answered one of my questions, as I havent had an answer to whether this affects fertility and it seems you have.

I havent had a child since diagnosis but from my experience of this condition it probably will be painful, but then again thats pregnancy for you!! As it is veins that are the problem, the increased pressure and blood volume pregnancy brings can make the condition worse. But its not critical enough to not have another child if you want one I'd say.

What treatments options were you given? The only real help I was offered was the mirena and I said no.

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openerofjars · 07/08/2011 21:18

Hi there. I was offered the cheery options of the pill (Big lot of use when TTC!) or, v long term, hysterectomy (Gah. No way. Over my cold lifeless corpse).

I had a good look online at surgical options re venous removal but it looks dodgy: possibly lots of pain for no gain.

Arse. Gin?

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KilledBill · 08/08/2011 12:45

Yes the only other thing I found was a procedure involving wires through main arteries, which I didnt fancy!! Some sort of courterisation im guessing. I think that they are only recently diagnosing this in patients, as the technology wasnt always there to diagnose this condition. I was told that basically its similar to endometriosis in terms of symptoms and outlook but cant be treated the same way. Unfortunatly I suspect its something we just have to live with. :(

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openerofjars · 09/08/2011 00:33

Yeah, but keep thinking this: it's not endometriosis, so won't potentially spread/cause infertility/make loads of forms of contraception impossible and it's not cancer. I just had a really shit week in terms of pain but at least now I know what it is and it's not going to actually shorten my life, or stop me from having babies.

It will turn me into a grumpy bitch from hell, mind.Grin

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openerofjars · 09/08/2011 00:34

And sorry, but WIRES THROUGH ARTERIES?

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SparkleRainbow · 09/08/2011 11:17

Got this after dd2, no problems at all during pregancy with dd3, merina coil is a god send for me since then.

Openerofjars.......coil much better than prospect of said wires Grin

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openerofjars · 09/08/2011 19:29

Mm, not sure: I had the copper coil & it was grim - really heavy periods which are much better now. And it was the thought of it as well.

Like I said, wires. Groo.

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SparkleRainbow · 10/08/2011 09:09

I have no periods at all with the merina, no cramps no side effects at all, and I have no pain or congestion at all.

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raphael7 · 23/01/2012 20:47

I had two children after my diagnosis & fell quickly for both. I was diagnosed in 1996

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