"Free form fluid"???: Hi everyone. So, I... - Endometriosis UK

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"Free form fluid"???

niamhnimhaolain profile image
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Hi everyone. So, I had my lap in January and only had my follow up last month because the waiting list is so long. I was on microgynon for 9months and didn't like what my personality had become plus it wasn't working with pain so came off it. Was told my options were: (bear in mind I'm 26) the pill again, zoladex, have a laparoscopy each year ish, get pregnant (although I'm in a 5year committed relationship still would rather be carried before that) or hysterectomy.are those REALLY all my options? Then, I happened to come by my notes and read and saw that there is "Free form fluid"..... What the he'll is that???? I looked up possibilities on internet of course and it said possible ruptured cysts. Has anyone else ever had that? I mean I sometimes get a debilitating ripping and tearing pain but I thought that was just part and parcel with endo???

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Chrissie66 profile image
Chrissie66

Hi

Firstly the free form fluid - it could be absolutely anything; it crops up on scans all the time, including in women without endo or any other gynae problems and even sometimes in men. It could be from a ruptured cyst but again, simple cysts come and go all the time. My guess is that if they were concerned about it they would have tested further and it's probably not that that's causing your pain but your endo, as you thought.

As for your treatment options - yes, that sounds about right (except the hysterectomy bit. Hysterectomy doesn't cure endo and is a ridiculous option for somebody of your age). You could also look up excision surgery but otherwise - there is no cure for endo, and when you're at childbearing age the priority is to keep you as clear as possible. Multiple surgeries aren't ideal unless the problem is acute, for example if you have a cyst that's going to explode unless it's removed - the more times they operate, the more scar tissue is created, and endo LOVES scar tissue; you'd effectively be getting rid of what was there and handing new growth a meal on a plate.

I'm assuming that you were diagnosed when you had your lap, apologies if not but if so have a look for the book Endometriosis for Dummies, it explains all of the pros and cons of all of the treatment options although obviously everybody reacts to everything differently.

Sorry I couldn't be of more help. If there was a one treatment fits all for endo we'd all be rushing to get it but it just doesn't work like that, unfortunately :(

Good luck

C x

memyselfi profile image
memyselfi

I too was given the impression that laps every year were a possibility. In reality, most people are offered three max and you need to be aware of the risks re permanent pain from nerve damage and scarring etc

I've never heard that pregnancy is a cure, although presumably you'd get a break in symptoms. What I would say, is that if you think you will want children some day, you should seriously consider starting soon. This is the voice of experience, I listened to all the medical people telling me that endo didn't affect fertility and I should just relax and let nature take its course, but it didn't.

Hysterectomy with removal of the ovaries: my gynae and supposed endo expert says this will cure me, but many people on here differ and I have decided to try to make it to natural menopause with the mirena to help a little. I am a lot older than you though, and my symptoms were ascribed to 'stress related ibs' until I was in my thirties and extensive endo was found. I think it is better that you know what the actual cause is as young as possible, but it is so frustrating that there isn't a cure out there.

Is it possible that there is another pill you could take that wouldn't affect you the same way? I know nothing about this as I can't take it, but if it helped your endo in the past it might be worth trying.

Best of luck x

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