Me again, more questions! : OK just had my... - Endometriosis UK

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Me again, more questions!

jinka profile image
6 Replies

OK just had my fourth lap and the pain came back straight away! I have Endo everywhere including my bowel, my last two laps my bowel has been prepped for them to operate on but they just didn't do it! They unstuck my left overy and bladder but left the right and my bowel stuck. ( not all stuck together obviously)

I've signed the forms I've told them that pain relief is my priority not my fertility (I've done the IVF it didn't work) so I just don't get it! I'm on pain killers everyday including Tramadol and Morphine but still I get the pain.

I have been offered IVF again OR a hysterectomy, I have declined both but asked that they concentrate on my bowel, I know its a serious operation but why are they so reluctant to do it? Anyone have any idea?

I'm now waiting for Prostap injections ( again) while waiting for a bowel scan ( this will be my third) then my consultant said they will look at my bowel if the results of my scan indicate that it is needed! Its been confirmed before that I have Endo in my bowel, but they would rather give me a hysterectomy (which I don't think will help) than deal with the problem!

Has anyone else had this problem? Or does anyone know why they are so reluctant to do what needs to be done?

Thanks

Xxxx

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6 Replies
Sanober profile image
Sanober

Hi there. I had one lap two years ago to remove a small choc cyst and unstick an ovary from my womb. Two years of continuos daily pill but after some IBS symptoms an MRI scan shows it's now all over my bowel. I've just started Decapeptyl because it's that or surgery.

My understanding (so far) is that the bowel is a tricky area to operate on and needs a bowel surgeon as well as a Gynae specialising in Endometriosis removal. Think they laser or cut it off the surface (by some specific procedure) or if there's deep infiltration of Endo in the bowel wall they have to cut and resectioned. But I don't understand why a Hysterectamy is being offered to you over Bowel surgery because surely that is a big operation with risks also. Perhaps it's the cost limitations of the NHS to get two surgeons involved?

I haven't explored the surgery option but I do need to investigate it in case the injections don't work.

May I ask how many times you've had the injection treatment?

Fern17 profile image
Fern17 in reply toSanober

Hi, I had surgery back in march using 2 surgeons to remove a 4cm nodule that was sticking my bowel to my womb and causing me a lot of problems and pain. Have a couple of suggestions of herbal stuff that have seemed to help me with the pain and bowel problems. I take every day Agnus castus liquid, evening primrose oil, multi vitamins with iron and have started taking peppermint capsules and drinking peppermint tea. I now feel great :-) The peppermint stuff has made a massive difference to the bowel side of things. If these things hadn't helped my consultant was going to put me back on pro stap and HRT permanently.

Sanober profile image
Sanober in reply toFern17

Hi Fern17

Great that you found relief after your op. How long has it been since your op?

I looked up Agnus Castus and it may not be good for those on the "menopause injection".

Fern17 profile image
Fern17 in reply toSanober

Hi sanober. I had surgery on the 20th march 2013 and after I was better than I had been but about 2months after surgery i started having a lot of symptoms back again and when I went back for my 3 month check with my consultant I was rubbish. He wanted to monitor me for another 2 months because I had the coil fitted at the same time as my surgery and wanted to see if things would settle down with that. This was when I asked about herbal medicine and he said that some ladies said that agnus castus had helped. I would try anything because i didn't want to be put on pro stap again. So that's when I got advise from a health food shop and stared with it. If you can't take that then maybe you might be able to find something else which might help. I hope you can as what I take now has made a massive difference to the way I feel and what I can do :-) the peppermint has helped so much with the bowel symptoms that i really cant believe how good I feel. I can eat just about anything now which before I was doing the endo diet. Good luck x

jinka profile image
jinka

Hi both, thank you so much for your replies.

Sanober, during my third lap I had a bowel specialist and an Endo specialist with me...but they still didn't touch my bowel. I was told afterwards that it was because it didn't interfere with my fertility, but that if I had problems later to go back and they would do what was needed. So that's what I've done, I can only assume that I have to start again (different consultant this time) so I suppose I have to convince them again that I just want the pain gone.

This will be my third go on pro strap, I've been on the pill non stop for about two years, but I'm still getting periods although my gp calls them "break through bleeds" which I know they are not. The first try on pro strap was for 3 months and used purely for IVF as part of the down regulation process. The second batch was for six months and just for pain relief, I was completely pain free for about eight months, it was amazing! Again though, I was told by my gp that they could only be given for six months Max, which my consultant told me was incorrect and hinted that the reason restrictions were placed on how long people could have it for rested on the cost of each injection! Very frustrating!

Fern, thanks for the info, I'm going to do some research on this.

Again thank you both so much! Xx

classiebird profile image
classiebird

I would imagine the reluctance to go into the bowel wud be back the nasties that live in there. If anything in your bowel got out into the rest of your body you'd be a whole lot more sick

Also if u then end up with a colostomy bag that's a whole other world of pain and suffering.

Dunno if this is d reason for not operating but it's worth considering.

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