Not very encouraging nurse :(: I had my pre... - Endometriosis UK

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Not very encouraging nurse :(

blondielocks profile image
13 Replies

I had my pre-op today, and when asked if there was anything that i didnt consent to i said "yes i dont want anything extreme, such as a hysterectomy or anything which would cause me to be unable to have children" to that the nurse responded, "well thats going to be hard with what your issues are"

my left ovary is adhered to the posterior wall of uterus +/- attachment to bowel, and also fallopian tubes appear to be inflamed or stuck up.

This has really pissed me off as my consultant refused to comment on fertility until they had done the lap. Now im even more anxious for the surgery, and she also said i was only anxious because i "knew too much" (from working in theatres)

feel a little down and deflated now xxx

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blondielocks profile image
blondielocks
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13 Replies
charlie_mk profile image
charlie_mk

Oh no blondielocks, that's not a very nice response for them to give you! It is your body and absolutely your right to be given all of the information before going into surgery!! You have to feel happy and confident in your surgeon and he/she should discuss all of this with you properly.

I had my lapo done just a few months ago and similarly, my left ovary was attached to the wall of my uterus. My fallopian tubes were clogged up too. My surgeon was amazing and managed to free up the ovary and clear the tubes successfully - which only improved my chance of pregnancy.

Could you try to get in touch with your surgeon again before your date? My surgeon came around to see me on the ward a couple of hours before my lapo to make sure I was happy about everything and to see if I had any questions for him. I made it absolutely clear to him that my ultimate goal (and half the reason for having the lapo) was to start a family. He knew this was the case and purposely left anything that could have caused any complications with conception.

Wish you all the best xx

blondielocks profile image
blondielocks in reply to charlie_mk

Thanks ever so much - thats reassuring to hear!

I have never even met my surgeon, i went private to get my initial appointment as i was in agony and SO sick of waiting, but then they put me back onto the nhs stream and i became a "pooled" patient, which meant i got any surgeon, ive checked her credentials and she seems good but i just am feeling a litttle bit apprehensive as i thought some of my questions would get answered today and that just made me feel like absolute pooooop!

How old are you charlie if you dont mind me asking, and what else did they say about your fertility, it terrifies me the thought of not been able to.

xxxx

charlie_mk profile image
charlie_mk in reply to blondielocks

Hi, I don't mind you asking at all! I'm 33 - almost 34. My OH is 38.

We have been ttc for about 2.5 years. I came off the pill 2.5 years ago, and about 6 months afterwards was when I really became aware that all was not ok. Fortunately for me, I have a private healthcare through work which covered endometriosis for pain - but not for fertility. I still discussed my fertility with the specialist though and he took all of that into consideration.

All I can suggest is that you stress how important it is to you to have the option of children. In my case, I was having the laparoscopy as much for fertility reasons as I was for pain reasons. I could've gone back on the pill and possibly got rid of most of the pain at any point otherwise.

As I said before, my fallopian tubes were a bit 'gunky' and my left ovary was attached and had a cyst on it. The surgeon did tell me afterwards that if I was older and had already had children then he may have considered just removing that 1 ovary.

It surprises me that you haven't been offered any direct consult with your surgeon! How long have you got before your op? Is there any way you can get in to see her 1st?

Your own chances of conceiving are more important to you than anyone else, so you need to really emphasise it to them. They can then take it into consideration and make judgements during your lapo. It may mean that they leave some endo behind like they did with me, but it was a choice that I am so glad he made if it meant preserving my chances!

xxx

blondielocks profile image
blondielocks

My ssurgery is the 18th, so probably not long enough to have a consultation I may ring tomorrow and just see :(

Thanks for all your info, they suggested removing my ovary but said they will decide more once in depending on whats necessary :( xxx

charlie_mk profile image
charlie_mk in reply to blondielocks

Yeah that probably will be too soon to see them - but maybe you can ask for a 10min telephone consultation? Tell them exactly how you're feeling about the op. It would be very inconvenient for them if you were to pull out of the surgery at short notice so hopefully they will at least give you a phonecall to discuss it. We're all just a number on a list to many doctors - so make sure you get your point across :) Best of luck - keep me updated how you get on x

squif85 profile image
squif85

Hi there blonde locks, I'm so sorry to hear that the nurse was like that! But I'm not surprise I had a horrible experience very similar time at a hospital before I was due to have a 7cm cyst removed and to cortirise my adhesions and I was basically told if you don't sign the form saying that they could perform a full hysterectomy if they saw fit! I have no babies yet and I had only just turned 28. I went into full panic mode and was hysterically crying on my OH and the nurse turned round and said well you don't have to have it...... I was otally mortified! thank god I've moved and I'm now under a much better set of staff

ked79 profile image
ked79

I've had 2 laps and awaiting 3rd op to deal with stage 4 Endo. They want to try and remove all nodules if poss and separate the bowel as its stuck to the womb. They have managed to keep everything in tact so far. The nurse can't give you too much info as she hasn't seen the scans. You have to prepare for all eventualities. They would only give you a hysterectomy if there was nothing else but that is extreme. They can't comment on fertility until you've tried to conceive. That's what they have told me. I haven't tried yet as I need to get the Endo addressed first.

blondielocks profile image
blondielocks

Awful how they can be so brutal, i know from my own line of work its so easy to become desensitised to surgery and other peoples pain, but i make a conscious effort to remember its just a work day for me but its a very important day for everyone i see and to act accordingly!

im going to call today, the other thing was they have said that my partner literally has to drop me off and pik me back up at disharge, this made me really upset as last time i was in hospital i had a really bad experience with surgery (you may have seen in previous posts) and i had psyched myself up on the basis of it will be fine nothing can happen when hes there :(

the c on my keyboard doesnt work veyr well....if a word doesnt make sense add a ;) xxxx

blondielocks profile image
blondielocks

WOOOOHOO! feel much better - rang and spoke to the nurse in charge - ukily she is on that day. she has arranged for my partner to be able to stay with me and also for the surgeon to call me this week. She made me feel muh more at ease and said i wont be forced into consenting for a hysterectomy (even though i know its extreme, i know we have to consent people for it as a fail safe in worst case scenarios) massive weight off my mind xxxx

endobob profile image
endobob

Hi blondielocks, I had a lap last year and they found both my ovaries stuck down and thickened walls of fallopian tubes, so fairly similar to you. I was referred immediately for IVF because of my age (36) and I'm currently cuddling the result of that, our amazing little boy. So dont let anyone get you down. Glad the surgeon is going to ring you xx

blondielocks profile image
blondielocks in reply to endobob

awww congratulations :) you just made my heart go all fuzzy!!! My friends 19 and she was told when she was 17 that she would only have 5 years, and shes had no adhesions or anything like that! Hopefully i still have some time, i dont want to have them yet, but if its a case of sooner rather than later then we will xxxx

endobob profile image
endobob in reply to blondielocks

You'll know more after the lap, the nurse really shouldn't have said anything to you! Good luck xx

Shehulk profile image
Shehulk

In my case, I had surgery 3 weeks ago, 2 large chocolate cysts removed, plus large nodule of my bowel, obliterated pouch of douglas, deep nodules on my abdominal wall, basically most of my pelvic cavity was covered with endo. It was so bad that the surgeon could not tell what was what when they first had a look inside me. They managed to removed most of the endo and they did not have to take anything out so it is possible. The surgeon never had any intention of removing anything as he knew I wanted a family. I still had to ask him again before the op as I was scare that somehow I will woke up with something missing! But he was very reassuring.

Do not trust what the nurse says, she not qualified to talk about your case. Unfortunately not everyone that works in the hospital is going to be knowledgeable and caring as you would expect but as far as you have made you intentions clear to the surgeon, you should be fine

Best of luck! x

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