Failed operation ... Endometriosis for the past 9years !! What steps do I take next .?? ...

[Abbiestockdale]

Hi I'm new to the group and am seeking advise from others in the same situation I am . I have suffered endometriosis when I was diagnosed with it since the age of 13 . I am now 22 years of age . Due to my age they didn't want to operate and tried to control the growth with hormone replacements . For years I tried different ones , with all different types of side affects , spots , bloating , weight gain , depression , angry , hormonal as hell and meny other symptoms . Exactly three years ago today I had a lapaproscapy and the removed the Endo on the right hand side but couldn't remove any on my left side as it is to close to my bowel and bladder and would take the risk of loosing a kidney apparently ! So three years later I am still no better Infact my symptoms are much worse . I now am loosing control of my bladder and my bowels , and have a constant dull pain in my lower stomach . I rang my doctors and booked a smear to which I had a letter to tell me it had been cancelled due to being underage . They won't admit me back to hospital after crying swearing and screaming at them many of times !

My family have offered to pay privately however I live in Blackpool and the consultant Mr Duffy is working at Blackpool Victoria hospital and is also the consultant and the aspire private hospital !

What steps can I do ! I and 22 years of age and do want children in later life but I know the longer this continues the slimmer the chance of anything happening !

Any advise would be greatly appreciated !!!! Xxxxxxxx

[shazlovesevo]

I don't have any advice but what I can say is I am so sorry for what your going through, I have my first lap on Tuesday to see if I have endo, so nervous! I feel so sorry for you! They also think I have endo on my bladder and bowel, I am constantly needing to wee and never feel like I have completely emptied my bladder and I also am starting to dribble uncontrollably now, always constipated too :/ I really hope things start to pick up for you, x

[Abbiestockdale in reply to shazlovesevo]

Don't be nervous ! I do recommend a hot water bottle at the pain in ur chest is harsh ! If there is any Endo they will get rid ! And my scars are tiny in my belly button and above my pelvis ! Hope u get answers you want xx

[victoria044]

Hi, Are there any specialist endo centres near you. I know you can refer yourself without gp referral if your going privately. Is the consultant Mr Duffy the consultant who did your last larparoscopy? I had to get a second opinion with a different gp and consultant.Might be worth looking into. X

[Abbiestockdale in reply to victoria044]

Yep Mr Duffy is on nhs and private so there is no point . I have been advised to have the injection to get rid of my periods basically because either they can't be arsed or they don't know what there doing . How do I find an Endo centre near me ?? X

[MandyLouise]

Hi there,

I can give some advice but I'm not sure it will work for you but it is worth a try. I have been through exactly the same thing you have but I was diagnosed with Endo a few years after you. I actually had it from when I was approx 17/18 and had no idea what to do myself. I have also had the many treatments with hormones and even gone through induced menopause to treat this but unfortunately it did not help.

I am 28 now and still suffering, I had 3 surgeries between 20 and 26, and due to the amount of damage they have deemed me unable to have children. So my advice is to refer yourself to another GP out of Blackpool. If the pain is so bad it is interrupting your day to day life then you need to get it sorted.

I had moved from Aylesbury to Cheltenham and then to Cambridge for other reasons but had been constantly referred and no Dr wanted to help until I was in Cambridge and constantly pushing for help. There is where I had my treatments and my surgeries but the Doctors there are very understanding and also will take it seriously, I pushed for surgery and I got it, however when I had my final surgery the endo was on my bowel and they accidentally cut a hole in there which led to me having a colostomy. All that aside, you cannot be refused help and if you would like to have children then I suggest looking elsewhere for help.

I'm sorry that you are suffering with this and if this has been in any way helpful then I can try and provide some more information and maybe areas that could help you. Hope it works out, good luck.

[misheemoo]

Endo is bad enough for you without cutting your bowel ((big hugs Mandy Louise)) x

[sireland]

Have you investigated BSGE Accredited Centres? They are specialised centres just for endometriosis with specialised and practice doctors, surgeons and nurses. I was diagnosed over ten years ago and only now having gone to see them do I feel like I'm being listened to (its amazing how people DON'T listen) and having realistic options offered to me.

Chin up x