Bowel endometriosis

[Froggy34]

Hi all. I had a diagnostic laparoscopy on 14th March where they found endometriosis on my left pelvic wall, Uterovesical fold and also a large nodule on my rectum. My main symptoms were mostly related to my bowel. The consultant excised all of the endo apart from the nodule on my rectum which he didn't want to do because of the risk of perforation, but he did rupture it. Since then my bowel symptoms have been much worse. I feel like I constantly need to open my bowels and have diarrhoea approx 15 times a day (before and during my period) although it mostly seems to be clear mucus coming out (sorry if tmi) and it is really really painful to do so. I have my next appointment on 1st June where they are going to start me on Gnrh analogues if things aren't any better. I had a Mirena coil put in at the laparoscopy too which doesn't seem to have done anything apart from give me continuous spotting between periods. Any advice you could offer would be great as I'm not sure what to do with myself at the moment. Not sure I can face going to the toilet one more time, it's so painful. Thank you. X

[Mabes]

About the mirena - unfortunately that seems to take time to settle down. I read a research study (or whatever it was) that looked at how it affected women, so I was somewhat prepared that it is not a miracle device that works immediately. In the document I read, it seemed there were several outcomes when it came to the bleeding: 1 group of women's periods stopped (no spotting either)! From memory, most women went through the spotting and either had lightened periods or their periods continued as normal.

I don't think the doctors inform women of these facts. I know my doctors didn't. They just bandied the - do you want the mirena? - around and gave me no other info in decision making.

I bled constantly - not even spotting - like a period for weeks after my lap. 4 months later and I'm getting periods of time with no bleeding or spotting, although admittedly I would say the bleeding/spotting time around my period is a lot longer than I'd like. My actual period is a lot better (lighter and far less painful) partly due to the excision and partly due to the mirena. I really was looking for the best option to prevent (as much as possible) further growth.. So if it jut does that I'd be happy.

If the mirena isn't causing you negative symptoms other than the spotting, perhaps give it time (I thought I'd give mine 6 months before making a decision over whether to keep it).

With the bowel symptoms - can the doctors not give you something to at least cease the diarrhoea? I'm not surprised you are fed up. All that running to the loo is so exhausting and not to mention the wiping making everything sore.

Anyway I think it is very important to check that an actual endometriosis specialist is working with you - the specialist centres have teams that are used to dealing with bowel and recto endo. Hopefully Lindle can help you in this regard.

[empems]

I'm so sorry to hear you have to go through this- isn't there some redress for them perforating your bowel?? Hopefully Lindle may be able to offer you some advice with that. Do you mindme asking?... What were your bowel symptoms before the lap as I have bowel symptoms but was fobbed off by one registrar last week that he thinks I may have diverticulitis despite my scan revealing endo. Waiting for scan to confirm. I really hope things settle for you x

[Froggy34]

Hi. Thanks for your replies. Am feeling a little better today thankfully. Empems - they didn't perforate my bowel, they just didn't excise the nodule in case they might perforate it. My symptoms started in January 2014 when I was getting cyclical bowel cramps and bloating. This quickly progressed to getting rectal pain, pain when opening my bowels then the feeling of needing to open my bowels all of the time (this was always just before and during my periods but definitely worse in the days before I came on). The in the few months before the surgery I started getting the feeling that I was going to have diarrhoea but when I went to the loo I was just passing lots of clear mucous. I still have the same symptoms now but just more intense. Since the surgery I have also been getting extreme pain after orgasm which lasts about an hour and gives me diarrhoea too (no matter where I am in my cycle). Are your symptoms similar? Hope things are ok with you and they find out what's going on. xxxx

[greyhazylady]

It is very interesting to hear of this because I have similar symptoms around my period time, and have had i.b.s. for years on and off, I have had no surgery yet but still debating on what to do? I know the pro biotics help and having a non sugar/yeast free diet around that time helps, no alchohol either, just when you feel like you really want some. Is the mirena a hormone device? My gyno told me about it last time but there was so much information I just didn't take it all in.

how do people cope with work and taking time off?

is your employer understanding?

this is one of the hardest things I find, I am currently out of work due to leaving my last job because it was too physical and made things worse.

just wonder what other people think?

thanks.

k.

[Froggy34]

Hi. I haven't tried any of the dietary stuff yet but do take multivitamins and I think that helps a little.

The Mirena is an intrauterine device that slowly releases progesterone I think. I think it mostly helps with heavy periods but does take a while to 'settle in' for most people.

As far as work goes, I'm fairly lucky as I only work one night shift per week so I tend to be able to cope with this most of the time. I do struggle with exercise though. I love going to the gym but find that I'm often unable to go because of the pain. This does get me down as I use exercise to stay within the normal weight range and this is a really important factor for helping control the endometriosis (or so I've read).

I try not to take painkillers too often - usually only when I'm in a lot of pain as I don't want to become immune to the effects.

I hope that things settle down for you and that you are able to go back to work soon. X