Advice please ladies !


Finally after 8 years I had an exploratory laparoscopy on March 1st. I was discharged without seeing a Dr and was given a unreadable discharge sheet! Still none the wiser !!

Anyway back yesterday in outpatients to find I have Endo and adhesions causing my uterus to be tipped back adhered to my bowel which is then stuck to my abdominal wall. Apparently further surgery is too risky as my bowel may become damaged so I have been prescribed mebeverine for my bowels, Prostrap injections and HRT for the endo.

I am unsure wether to have the Prostrap as Ive heard about the horrendous side effects it can give ? I am also wondering if anyone else has the same adhesions and has been offered any other treatments? Be really grateful to hear other peoples experiences xx

9 Replies

  • Hi are you under a bsge centre with a specialist endo surgeon?? I've heard of ladies having endo removed from bowel, but it needs to have numerous surgeons, through a bsge centre,

  • Hi Tboag is correct. You need to look on the BSGE website for a centre near you , then go back to GP and get a referral to them.

    Although the surgery does carry risks with a specialist team it should be possible to excise the endo and separate organs and bowel. Good luck.

  • Hi, I was really frightened about using prostap too. However the first time I was on it, apart from having a few hot flushes and feeling like I'd lost my get up and go I was fine. Symptoms do get worse in the first month or so which is to be expected as it upregulates hormones - this then leads to the system shutting off. You may get funny bleeding for a while and then it just stops. For me it did calm down the Endo and helped me day to day.

    The second time I was on it I came off it after two months because I was feeling very low. And within a few weeks was back to normal, so it won't take that long for it to come out of your system if you have the one month depot - the 3 month depot is used as well so find out which one has been prescribed. 

  • Agree with others re surgery. Check if the doc/hospital are listed here if not ask your gp for a referral to your nearest centre.

  • They did mention referring to a specialist in Endo once they had seen if I tolerated the  Prostrap and it had had any effect . I am due back in 3 months so may hold off and push to be referred to the specialist first. Thank you for your replies  x

  • Hi sweetie, I've had two lots of very successful surgery for what sounds like a very similar situation. First lot of surgery 2.5 years ago to cut bowel off the back of my uterus and abdominal wall. Great success! Except that he missed a bit of endo further down my bowel so I went to a BSGE centre and had surgery 3 weeks ago. Brilliant results from surgery. Agree with all the other posts- find your nearest BSGE centre on this link, choose a gynae on the list at your nearest centre and ask your GP for a referral. Cut and paste it into your browser. During surgery 3 weeks ago I had a gynae and a bowel surgeon operating on me at the same time. And that is now clinical best practice. My opinion- if you just go to a random gynae that your GP refers you to and they are not in a BSGE centre, more often than not you are wasting your time. Before you see your GP, do your research about the nearest BSGE centre, research the gynaes and bowel surgeons listed against that centre then see your GP and tell him to book you in. If it's of interest, the cost of a private consultation is around £230-250 with a gynae (and same again for bowel doc if gynae decides you need to see one). Some people choose to queue jump to get the initial full diagnosis and treatment plan quickly for £250 then you can choose to flip back to the NHS and see the same docs or continue to pay privately. Whatever you do, don't wait 3 months for anything- get a second opinion from the centre of excellence nearest you. Good luck! X

  • Hiya,

    As been mentioned above a general gynea completely missed all my endo, said he removed a nodule off bladder and that was it. I continued to have all sorts of issues and after reading the helpful posts on here asked my gp for a referal to bsge centre. 

    I had exploratory lap in jan, now awaiting further surgery with colorectal surgeon present to remove endo on my bowel, left ovary and pod.

    I've been put on 3 month Prostap (had second dose few weeks ago), not sure if it's working for me though as I seem to still be getting periods and same endo symptons surrounding them, as well as the mood swings, up and down moods and occasional night sweats.  I've also started to notice, since the 2nd injection, my knees are painful. I read a few ladies say their bones hurt and I get now what they meant. I've read Prostap doesn't suit everyone, but does suit some so I really don't think you will l ow how you'll react until you try it unfortunately.

    It is well worth pursuing and pushing to see the right people.

    Good luck and hope you are recovering well.

    MM x

  • Hi

    Thought I would share my experience as endo sounds similar. I had my initial diagnosis laparoscopy done by a normal gynae and it was discovered my bowel, ovaries and tubes were all stuck together so then he referred me to a BSGE centre. As one of the other replies above mentions I chose to queue jump as it were to see the gynae consultant and bowel surgeon there privately, due to the amount of pain I was in and kept having to take time off work etc. To give you idea of costs the gynae surgeon consultation was £190 and the bowel surgeon £170, I imagine this varies in different parts of the country. I then had to have a flexible sigmoidoscopy to see the extent of the bowel involvement (cost approx £2000). I am now on the waiting list for surgery with both consultants and have gone back to the NHS for this as the cost for this privately was £10,000.

    No-one has ever mentioned medication etc to me only surgery for excision of the endometriosis which I've been told mine is in the severe category. 

    Good luck and definitely get referred to a specialist centre. 

  • Hi - the only relevant point is that the consultant is working against NHS protocol that requires severe endo such as you have to be referred to a BSGE centre for thorough excision surgery. The guidelines themselves confirm that these medications are not appropriate for your stage of disease. There would really be no way of knowing if they were having any effect on endo because a large amount of your pain is likely to be caused by adhesions and nerve involvement, neither of which will be relieved by the withdrawal of oestrogen. You can't take them for any length of time anyway so we have to ask what the purpose would be. Click on my name and have a look at my posts on the treatment pathway, how to find a specialist centre, rectovaginal and uterosacral ligament endo. The only consolation is that this surgeon didn't attempt to tackle surgery beyond his or her training.

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