Suspected endo due to have lap

Hi all, it's hard to know where to begin, but just wanted to vent and hopefully get a reply from someone who understands. I have been experiencing bowel, bladder and pelvic issues for around 8 years. Been diagnosed then undiagnosed with Crohn's disease due to constant diarrhoea and an ulcerated appendix, having severe bladder symptoms, bladder urgency, urethral pain and peeing as much as 4 times in 30 mins :( then the dreaded monthlys! Long drawn out painful periods, spotting, losing a very strange skin like discharge etc. All my symptoms worsen during my period and I get an awful deep pain in my lower right side which goes into my hip/groin area and down my thigh. Finally had a break through when I went to see a Gynae consultant at QMC in Nottingham who spoke with me for ten minutes and decided he was going to do a laparoscopy, cystoscopy and bladder pressure study in the next 6 weeks which I am extremely grateful for. He seemed to organise more in that appointment than my local hospital did in the last 8 years. He explained to me he suspects endo and during the lap he will burn away any endo if found or cut any adhesions. If there's anyone out there with endo who's experiencing or has experienced similar symptoms I'd be so grateful for a reply. I'm terrified they won't find anything which in one way is a good thing but with not getting very far in so many years I'd just like to finally have a diagnosis so I can recieve treatment and try to deal with it. Sorry for the long post!

Kay xx

4 Replies

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  • Hi if they burn the endo off it will definitely come back. You need excision surgery. Have a look on the BSGE website and find a specialist near you. Then get referral to them from GP. These centres are NHS and are there specifically to help women with endo. Their surgeons are more qualified and more experienced than a general gynaecologist.

  • Hello Kay, good news you've finally got someone to help! I've been very fortunate in that my gp referred me quickly when I went with constant periods, the pain I had experienced for a few years, I thought was normal and/or because I was doing too much! I now know it to be endo pain which is some sort of relief . I had lap, hystoscopy and cystectomy a couple of weeks ago, everything happened for me within 3 months but I have found it very overwhelming and am quite upset about everything. Immediately Following my keyhole surgery my consultant told me my bladder and bowel had stuck to uterus I think and I know need open surgery. The whole thing scares the hell out of me and I've been put on zoladex injections for 3 months which so far don't seem to be agreeing with me at all! Still.... Onwards and upwards as they say! It sounds as though they probably will find something and hopefully they'll be able to sort it out for you. Three months ago, I had no idea all this was happening inside me...... Fingers crossed for you xxx

  • In having my first lap too (booked for Thursday morning eek!)so I know how you feel in regards to panic that they won't find anything! It's scary if they do and scary if they don't, I'm finding it quite overwhelming. I think we're at least going to get some answers and can move forward after the lap with at least some more information so have to look at the positives. I have been worrying about time off work as in self employed but my partner always tells me 'Your health is your wealth' and I think he is right. Good luck with your lap, if you need to compare notes il be in same boat :)

  • Thanks for your reply. I hope your lap went well and you are on the road to recovery. Our health is most definitely our wealth, I can't believe how ignorant I was before I became ill and just how much we all take for granted, especially the really simple things in life. I have my date for my lap now 8th September which isn't far away at all. X

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