Endometriosis hell....Risk surgery or not...??

[sazg]

Hi everyone

I really need help...

I'm 21 a bad sufferer of endometriosis and got diagnosed when I was 15 however I suffered years with horrendous periods before that-it took so.long for them to actually do something and diagnose me! All I kept getting told was it was in my head and they even at times said I had mental health problems and then they went in with a laparoscopy in 2010 and it proved them wrong and I did have endometriosis! After this I was put on alsorts I have been on all the hormone pills you can think of! Then there has been 3 different types of injections,the implant,the coil everything literally! In 2011 they eventually went in to get rid of it but.... This went wrong and got converted into a laparotomy due to them perforating my bowel! I now have a mid line scar and this then my life has been even more hell! I now have bladder and bowel problems-had loads of colonoscopies and they are saying my bowel problems are all related plus endometriosis plus adhesions and ibs! My bladder well I have had to do self catheterisation have cystistat be on loads of antibiotics and alsorts! I'm getting nowhere day by day I'm getting worse! I have been put back on and off zoladex injections for the time being but they are doing nothing apart from stopping my constant bleeding!! I have been under sooo many consultants I have lost count and seen dietitians everyone you name it! Tablets well I have literally tried every pain relief you can think of... Day by day I get worse and nothing is helping. I have been now told by top specialist I can have surgery again but due to my midline scar I am at major major risk and if something goes wrong I could end up with a stoma! I want my life back I really do I can't work full time and I was made to give up uni because of it all i jjst can't cope with it anymore! Someone please help this is the biggest decision I could make at my age... Risk having the surgery and it going wrong majorly and then leaving me worse or stay as I am living my life like hell not being able to do anything!

Does anyone please have any suggestions or any advise because right now it's all o can think of and I don't have a clue what to do

Thanks

Sarah

[sazg]

I have also had 3 miscarriages! My life is just utter hell with it! They won't do a hysterectomy or anything because of my age! I just want my life back....

[sazg]

Yes it's ridiculous I can't believe they would even think that and it breaks my heart thinking about it! I'm just scared thst iys going to go wrong again but this time ten times worse! They said I'm at alot higher risk of it going wrong and if it did I would definitely struggle having a stoma in my 20s but I can't deal with my life now! All I want is my life back and to go back to uni to do my teaching but all thst had to be given up because of all this! Sooo much has happened it's ridiculous and I can't describe how many consultants specialists and medication been on! I was on NHS then I have gone to a private hospital but managed to get that throigh NHS and they have referred me to all different specialists. X

[sazg]

Yes it is one on there well I didn't even know about that but looked before on your post and it's on the BSGE list! The thing is I have no other option than surgery now x

[sazg]

Thankyou yes I'm just going to have to have a long think about it before I make any decisions! What would you do?x

[GrittyReads]

I do sympathise with you enormously, but admit to feeling hopelessly out-of-my depth in attempting to answer you.

I really think the best thing for you to do is to contact 'Endometriosis UK' (there's a link to their website at the top of this page) and talk to one of their advisors. They are the experts relative to many of us, and they can guide you to the ultimate experts. For example, did you know that there are specialist Endo clinics around the country? Endo UK can give you a list, and then you could ask on here for which centre/Drs people most recommend out of any that may be in striking distance for you.

Also, try scrolling back through recent posts, as I think there have been a few recently in similar difficult situations to you who got detailed responses.

Sorry not to be of more help, but I do hope you get some answers. Try to take care and do contact 'Endo UK'

NB Weekends and holidays are not the best times to post on here. I've noticed that fewer people check in. If you come back with more general questions, I'd do it on an ordinary weekday.

[GrittyReads in reply to GrittyReads]

Apologies, for some reason (very little sleep last night?) when I replied I though this post had not received any responses.

[sazg]

Thankyou very much for your help and advise! It's just hell yes it's actually one of the doctors from the endo clinics I'm under

Thankyou